Renal Retentive

2010-03-22T18:31:00.000-07:00

Wow, I haven't blogged since May. That's terrible. But here I am! Needless to say we've been busy. Alot has changed, most of if for the better, and we are still moving forward with the hope of having a baby this year. It's not a sure thing yet, but we're getting closer.
My health has been pretty good over the last year. Had some crazy post-surgical hormonal imbalances late in the summer, which the docs said was not uncommon. I ended up having extremely heavy dysfunctional uterine bleeding (I know, TMI for the men folks but oh well!), and had to get hospitalized to be transfused with 4 units of blood. I had been feeling awful for a couple months, and it actualyl felt good knowing there was a real reason I felt like walking death- my hemoglobin was 6 (normal for my height & age is 12=14, yikes). I then got put on low-dosage birth control to get my body regulated & stop the bleeding. I went off the BC in late December, and I have had no problems.
In August Rick's brother David & his wife Mary had their first baby! Edward Matthew joined our family and he is so amazing. We love all our nieces and nephews so much! They fill our hearts with so much happiness, but at the same time it can be bittersweet, as we long so deeply for our own family. But our time will come; hopefully sooner than later.
I had all my one-year post transplant testing in late December, and everything looks great. The only snag is that I am spilling protein in my urine, which I will probably always do, but they have to keep a close eye on the levels because it can possibly be a very early indicator of recurrence of my kidney diseasse FSGS. Or, it could just mean I have leaky glomuleri in my kidneys. My biopsy showed NO traces of recurrence, so they are pretty sure it's not FSGS causing the protein spillage, but they still will keep a close eye on it.
After some debating with a craptastic doctor (NOT the one we normally see, and whom we have requested to not see again due to his horrible, snide demeanor and apparently inability to read all my records before diagnosing me...!), we finally were able to switch my meds over to the pregnancy-safe meds two weeks ago. They are now monitoring me w/ labs every two weeks, and are watching my protein very closely. One of the BP meds I used to take was an ACE inhibitor, which is not a pregnancy-safe drug. The ACE lowers BP extremely well, but it also is the only drug shown to have an effect in slowing the damage FSGS causes. So, if my FSGS is in fact trying to come back, taking me off the ACE will help them to know for sure. If my protein levels shoot up when I stop taking the ACE, then we will have to curb the baby plans for now and address the possibility of having to focus on keeping my FSGS from destroying the new kidney.

So, in a nutshell that's where we're at. I'm trying not to dwell on the fact that this is it- we're down to the wire, and the next couple of months might decide the path for the rest of our lives. Just taking things day to day for now and trying to keep myself distracted.

Which we are doing very well- we're FINALLY reaching the end of our kitchen remodel. The kitchen has been usable since the end of the summer, but there is no floor, and no pain on the walls. The new appliances are arriving Saturday, and the paint & floor should be done within the next week. I can't wait!!!! Pictures will definately follow.

Since we don't have a baby of our own in our lives, we decided it was OK for us to enjoy the last couple years of our financial success. We took a couple nice vacations, and my hubby spoiled me a bit. He surprised me with some stunning pieces of jewelry on Christmas, AND for Valentine's day! Rick has been golfing alot, and got a few new clubs.
I've kind of developed an addiction to Clinique skincare & cosmetics, much to the grumbling of my husband! I figure I'd like to enjoy something of that nature now, because it will be one of the first things to go when we have a baby.

We most certainly would rather have a family though, and would give up all the vacations and nice things in an instant to be able to fill that void in our lives.

So, for now we are just enjoying life, and enjoying each other. It's such a huge blessing to feel so much better, to be able to walk across a store without feeling like I'm going to pass out; to be able to run and be active and feel alive. God is good in ALL things, and I am very blessed to still be alive! I'm going to try and be more regular with my blogging. I enjoy it, and I've missed it.

I'm not dead yet!

2009-05-06T19:05:00.000-07:00

I feel... happy!

For those of you who got my movie reference there, I love you.

I have been a really terrible blogger in the last 4 months! But it's not like I haven't had alot going on. My recovery has been awesome so far. My creatanine has been consistently either 1.1 or 1.2, which is a normal level. Also- since Mayo first worked me up in June '08, my cholesterol has dropped 260 POINTS. Yes your ead that right- it was originally 440 (due mostly to kidney failure). Now that my body is actually filtering blood, it is down to about 180. We have also made alot of diet adjustments. So yay me*

I have been back to working 40-hour weeks and so far I feel pretty good. I still have days where I am super tired by the time I get home, but they are getting fewer and farther between. Rick & I have been trying to walk alot more. We joined the YMCA which I am really excited about.

The last week or so I have been in the midstmy routine 4-month post-op testing. I have the kidney biopsy on Friday- I am NOT looking forward to another one of those. But this time I wised up and insisted that they give me something to take BEFORE the procedure, instead of just the local lidocaine anesthetic. So I get to pop a couple Xanax befor the biopsy on Friday.

Next week I see my coordinator and the main doctor again to go over all the results from the 4-month tests. After that, I won't have to really come back to Mayo until I am one-year post op; then we do all the tests again. My labs are going to back off from once a week to every other week, and I will be under the general care management of my nephrologist.

Oh, and I did find a new nephrologist. Her name is Dr. Kim- we really liked her alot! She is fairly young; I think late 30's, and very easy to talk to. We discussed future pregnancies at length, and she is on board with us for that goal. I see her again on May 18 I think. She herself is having a baby soon, and the May appointment is right before she goes on maternity leave.

I had an optometrist appointment over the weekend for a regular eye exam. Dr. Larson told me that I have a bunch of tiny white spots or deposits along the outside of my retinas, and my optic nerves are slightly inflamed... sigh; one more thing on me that is defective or falling apart... but anyways, the appointment went well. They dilated my pupils (yuck), and then injected me with an immunofluorescent dye and took a bunch of pictures with a REEEEALLY ridiculously bright light. For about 45 minutes. Which was extremely unpleasant considering my pupils were dilated and very light sensitive. The doctor said he thinks the tiny white spots are little bits of scarring from when my blood pressures were out of control. He said they didn't look like they were "active"; basically, they happened awhile back but are not progressing anymore. He is not sure what is causing the inflammation in my optic nerve, but because of my kind of kidney disease, the surgery, and the zillion icky meds I take, it could be a number of things. So, he referred me to see a neurologist at Mayo Clinic. For now I feel good about things! I know firsthand how AWESOME Mayo is- the doctors there are amazing and they know their stuff. I am in good hands!

We got a big-honkin' tax return (thanks to all my medical bills!), and we are beginning to remodel our kitchen. The cabinets are falling apart, and if we want to sell the house in a couple years like we are planning, we have to replace them. So we ordered new cabinets, nice new solid surface counertops, and are slightly redesigning the kitchen to increase the countertop and cabinet space. It's going to look awesome! The cabinets should be here in about three weeks. Rick is almost done tiling our screened back porch/ sunroom. It looks beautiful! I will post pics soon.

We've been pretty busy! We start demo on the kicthen this weekend... not looking forward to that part! But we have our eye on the prize...

Biopsy tomorrow

2009-02-02T14:31:00.000-08:00

I have my routine 4-week post op kidney biopsy tomorrow. The biopsy will take a much closer look at how the new kidney is functioning. It is an outpatient procedure; I have to stay at Mayo for around 4 hours afterwords so they can monitor me for bleeding & such.
The biopsy is ultrasound-guided. Mayo has their own pathology lab on-site, and my coordinator said that if anything bad shows up, she will be notified within 24 hours. If everything is normal, we should have the results in around 2 days.

I had a kidney biopsy last January when they were trying to determine what was wrong with my kidneys & how damaged they were, and it was no fun... I couldn't bring myself to look, but Rick said the needle thing they used was HUGE and at least a foot long... yikes!
They do numb you up, but they can only numb your skin & flesh, not your internal organs. It was only a little painful, but it really freaked me out that I could FEEL the thing jabbing around inside. But the doctor told me a biopsy on a transplanted kidney won't be as bad as the one that was done on my own kidneys. That one had to be done through my back, and they have to push through all that back muscle & such.

I will be a sore for a few days afterwords, but nothing terrible. I think anything will seem like a breeze after being diced open...

On a lighter note... GO STEELERS!!! We had my folks over for the game. My best friend Carissa also came over with her hubby & their son Trey, who is one of the lights of my life!! Carissa's mom is also from Pittsburgh.
He is SO cute! He will be one year old on Feb. 10. He really is a gorgeous baby. And so photogenic. He knows exactly what a camera is, and when you point one at him he smiles away! Trey brought over his Terrible Toddler Towel that I bought for him in P-burgh in August. Love it!

Willow knows how to relax....

Today's update

2009-01-29T14:10:00.000-08:00

Still doing pretty well here at home. I had more labs on Monday & this morning, and I see both my coordinator (Jennifer) and the doctor tomorrow. We are still trying to get my level of the immunosuppresant drug Prograf right. On today's labs, I was at 14, which is a little too high again. My creatanine was 1.5. That's up just a little bit (my last 2 readings were both 1.4) but it's a small increase, and Jennifer said she is almost 100% certain that it is from my Prograf being a little too high again. So, the creatanine is starting to level out, which is great.

I am doing a 24-hour urine collection right now... whatever you do, don't drink from the orange jug in my fridge... I have to turn the jug in tomorrow morning. I have to collect all my urine for 24 hours. It's super fun. They will be measuring my total amount of output to make sure I am peeing enough, and they will also be measuring the amount of protein I spill. Before the surgery, I was spilling ALOT of protein in my urine. On the sample I gave them this morning, Jennifer said there was just a tiny trace amount.

Ricky & Bruce (Rick's dad) put new rotors on my car today and they also changed the oil. Thanks guys!!! It's very useful to have handy menfolk around. I am good at many things, but other things, not so much. Rick is really handy- he can do almost any kind of home project. Tile, plumbing, minor electrical, carpentry, roofing, ALL our computer repairs (he does IT support at work)...you name it! He does most of the car repairs except for really major stuff. He doesn't like to think so, but he is very talented! He also helps me cook & clean! And, he does all the laundry! Sorry, ladies, he's taken!

Rick is planning a luau for my 30th b-day, which is looming right around the corner (Feb. 13). I am both looking forward to 30 and dreading it. We will see how I feel when the day comes... But the party is going to be great fun!

I also got a call from my grade-school gifted class teacher, Mary Summers! She had all three of us sisters over the years. Mrs. Summers is so awesome! She is probably the best teacher we ever had. It made me so happy to hear from her!

Recovery update

2009-01-22T20:02:00.000-08:00

Yes, dear blogites, I'm still alive!

Everyone at Mayo told me to be ready for recovery to be a long process, and that it would be hard at times- they were right! I was in the hospital from Tuesday Jan. 6 thru Monday Jan. 12. The first couple days post-op were OK (I had alot of good drugs). But the rest of the time was rough. The medications I am on to suppress my immune system tend to wreck havoc on the digestive system. I was really sick most of the time I was in the hospital, and I had really bad nausea. This was no fun after an abdominal surgery... getting sick was very painful. They were giving me phenergran thru my I.V. which helped the nauseau, but it also knocked me out. The pain meds were also making me really sick. It was no fun.

The nauseau continued the first few days after I got home as well. When I saw the doctors again, I begged them to give me something- the wrote me a script, but they also told me they thought they knew why I had been so sick. One of the anti-rejection meds I will take for life is Prograf. The ideal level on Prograf in my blood is 7-11. My prograf levels were at 27, which they said was near toxic. I didn't feel like as much of a wimp! So, they told me to skip two doses, and then backed my dosage level way off. The next bloodwork a couple days later showed my Prograf at 16, and then a couple days later 13. I got a call today that my Wednesday bloodwork showed it at 3.5, which is too low. So, they increased my dose a little bit, and we will see what next week brings.
My liver counts were elevated on Monday's bloodwork, which concerned the doctors a little. But they also said that my body is still at the tail-end of detoxing from the Prograf. When Mayo called me today they said the Wednesday labs showed that they were coming back down, which is very good.

My creatanine levels have been steadily decreasing. Creatanine levels are a good basic indicator of kidney function- the lower the better. Before my surgery, mine was usually between 2.7-2.9. Within a couple days of surgery, mine was down to 1.7! I got as low as 1.4 before I was discharged. It was back up a little last week, but they think that was due to the mess with the Prograf. The bloodwork from Wednesday showed me at 1.4, which is actually in the 'normal' range.

I received only one unit of blood during surgery. About 4 days after the surgery my blood counts were fairly low again, so they gave me another transfusion of about 2.5 units. Why 2.5..? When they started the first unit, the nurse hooked everything up and left. A little while later I looked over at my IV pump and noticed something dripping off the bottom. The bag hadn't been hooked up properly to the tube and was leaking on the floor... it was really gross!! I had gotten almost halfway through the unit, but at this point I had developed a fever. This is a common side effect of Thymoglobulin, a strong immunosuppressant I had received 3 dosages of via IV in previous days. But, it can also be an indication of a reaction to the blood I was being given. So they had to stop the transfusion and wait for the fever to lift. They started me again the next day and I received two units. My hemoglobin and blood counts have been normal since I was discharged, which means I am no longer anemic!

I am scheduled to have a routine post-transplant biopsy of my new kidney on Feb. 2. This will be an out-patient procedure, and I will only have to be at the hospital for about 4-6 hours after the procedure for observation.

So, thus far the new kidney is working great. Mayo is still advising me to avoid public places as much as possible, because right now I am highly immunosuppressed. If I venture out, I have to wear a mask and not touch anything.
The next month or two will be spent adjusting my medication dosages. Right now, I am taking around 12 different meds a day, but this is the time when my medication levels will be the highest. Over the next year they will slowly decrease me off of many of them. I have been taking only Tylenol for the pain since Friday January 16. No narcotics! I still feel sore & tired from the surgery itself, but I already can feel the difference. I just feel better in general. Rick says my color looks so much better too. There are some weird side affects I am dealing with- some of the immunosuppressants cause sleep problems and I am having trouble falling asleep. I am also hallucinating while I am trying to fall asleep! But I am feeling a little better every day. I am getting around the house by myself now, and there's only a few things I can't do by myself- lift anything over 5 lbs, bend over if I drop something, and sleep on my right side. I might possibly be able to drive in the next 2-3 weeks, but that's not a definate.

I would also like to say that my husband has officially beat out everyone I know for Husband of the Year!!! He has been my tireless caregiver, and my fearless defender. I haven't had to stress or worry about anything. He has held me up (sometimes quite literally!) and I love him so much.

My parents & in-laws have been a huge help to us! They have been helping to transport & care for me, and also have been cooking meals and helping Rick keep the house clean. We are very lucky to have them!

My cousin Brenda is doing really well. She had alot of pain & nausea the first few days post-op; she has had a couple previous abdominal surgeries and she had alot of scar tissue they had to deattach. But she was discharged on Friday Jan. 9, and was able to fly back to Colorado on Friday January 16. I miss her very much and Rick and I are hoping to be able to make a trip out to Colorado to visiter her & her family in the next year or so.

Thank you so much for all the cards, letters, calls, care packages, and well-wishes. I hope to see you all again soon; take care & God bless!

I Like Morphine

2009-01-07T12:14:00.000-08:00

Greetings friends and family! This is Erin dictating her first update to baby sister Sarah. I tried to make the entry myself, but computer usage is blowing my mind right now.

I had a bit of a rough morning, but I'm feeling much better now. Early this morning, my nurse wanted to get me up and walking, but when I sat up for the first time, I became very dizzy and nauseated and nothing seemed to help. We tried pretty much everything, even a nausea medicine in my IV, but to no avail. After several hours, the doctors and nurses decided it was most likely the pain medication that I was on (diladin), so they switched me to a morphine drip. Since the medication switch, I am feeling much, much better and will probably be getting out of bed to take a walk very, very soon.

My new kidney is functioning really well. They actually had to take me off all blood pressure medications, because I have a normal blood pressure now. My creatanine level, which was around 2.7 pre-op, is now at 1.8 and dropping, which is fantastic. I am also peeing like a champ! I still have my catheter, but my urine output has been great! I no longer have blood in my urine.

I have developed what is hopefully a temporary case of diabetes. The doctors have said this is probably due mostly to the high dosages of steroids I am on combined with the many other stresses on my body. It's nothing major right now. The nurses are checking my sugar periodically, and I have received a few small doses of insulin via injection.

I actually was just able to take a walk (5:00pm). It felt good to be able to get up and move around. I was also able to take a sponge bath, which was great.

I was able to see Brenda briefly today. She was up and moving around for awhile and came down to visit my room. She is doing well but had a pretty tough time in recovery right after the surgery. She was having a lot of pain due to scar tissues from some previous surgeries. She has had some nausea problems throughout the day, but it seems to be getting better now. I stopped by Brenda's room on my walk, but she was sound asleep, so I wanted to let her rest. I am still overwhelmed she was willing to go through all of this for me and for our family. I am planning on getting up and taking at least one more walk tonight. I am hoping that we both gets a good night's sleep tonight.

Today is my Dad's birthday, so we have birthday cake waiting in Brenda's room. It is also Brenda's Mom & Dad (Aunt Peggy & Uncle Dave's) 54th Wedding Anniversary.

I would love to see everyone, but since I am still not feeling very well I probably won't be up to having any visitors until at least late Thursday or maybe Friday. Feel free to send me an e-mail or give me a call to see how I am feeling. I am in Room 310 at the Mayo Clinic. Feel free to give my cell phone number a call if you would like.

More updates to come...

Erin's Surgery Update #1

2009-01-06T08:44:00.000-08:00

Hello All!

This is Erin's baby sister Sarah reporting in for Surgery Update #1.

Erin's donor, Brenda, went in for surgery at 8:15am. We just received word at 10:45am that Brenda was closed up, moved to recovery, and in great shape. They were able to do the surgery laparoscopically, which is the best possible scenario for Brenda. She will be discharged on Thursday, if all healing goes as planned.

Erin was taken back for prep at 10:15am. Just two seconds ago Rick was taken back to give Erin kisses before being put under and taken into surgery.

So far, everything is going great. We are all waiting here at the Mayo Surgery Waiting area. I will be sending an e-mail update once Erin gets out of surgery (in about 2 to 4 hours) with further information on sending well-wishes, visitors, and Erin's recovery.

Much love to everyone,
Sarah M. Gillooly

Merry Christmas

2008-12-27T17:51:00.000-08:00

from all of us!!!

Send your own ElfYourself eCards

2008-12-27T17:05:00.001-08:00

Christmas photos

2008-12-21T19:30:00.001-08:00

Merry Christmas from the Kistners!

Here is our failed attempt at a photo with our puppies... they would not cooperate!

2008-12-19T20:12:00.000-08:00

Rick, I love you my dearest, but I have found another...

Proposition 8: The Musical!

2008-12-14T08:51:00.001-08:00

"Prop 8 - The Musical" starring Jack Black, John C. Reilly, and many more... by Jack Black

Our Christmas miracle

2008-12-03T15:39:00.000-08:00

God truly is good! He has answered our prayers, and has brought us our Christmas miracle.
Mayo clinic called today to tell us that my cousin Brenda from Colorado is a match, and she is approved to be my kidney donor! My surgery is scheduled for January 6.

I am overwhelmed. I have the most incredible family, and an amazing, supportive, loving husband. My cousin is an angel! I know how proud my grandparents would be.
Please keep us in your prayers in the coming weeks as we prepare for the surgery.

In less than 6 weeks, I will have a new chance at life. Truly amazing.

I've found that it's in our darkest hour that God shines his light the brightest for us.

Abide with me; fast falls the eventide;
the darkness deepens; Lord, with me abide.
When other helpers fail and comforts flee,
Help of the helpless, O abide with me.

Swift to its close ebbs out life's little day;
earth's joys grow dim; its glories pass away;
change and decay in all around I see;
O thou who changest not, abide with me.

I need thy presence every passing hour.
What but thy grace can foil the tempter's power?
Who, like thyself, my guide and stay can be?
Through cloud and sunshine, Lord, abide with me.

I fear no foe, with thee at hand to bless;
ills have no weight, and tears not bitterness.
Where is death's sting? Where, grave, thy victory?
I triumph still, if thou abide with me.

Hold thou thy cross before my closing eyes;
shine through the gloom and point me to the skies.
Heaven's morning breaks, and earth's vain shadows flee;
in life, in death, O Lord, abide with me.

Cousin Brenda's visit

2008-11-28T10:57:00.000-08:00

As most of you already know, my cousin Brenda has been here all week to finish her testing to be my donor. Brenda lives just outside Denver; she has been with us since Friday & leaves today around 5pm.
We had a GREAT week and loved having Brenda with us. It was especially nice to have her here to share Thanksgiving with us. I really loved being able to get to know her better. Even if things don't work out for her to be my donor, this has been such a great experience and I have loved having her here with us.
My grandparents instilled a very strong "family first" value in all of their children. I know they are with us, and they would be so proud that Brenda is willing to give me this wonderful gift.

Things went well at Mayo Clinic. There were several key things they were looking for: blood type, cross-match, antigens, and MRI results. Her blood type we already knew was O+. To find out if there is a cross-match, they mixed her blood & mine together in the lab to see if they would be compatible, or reject each other. We had a negative cross-match, which means our blood was compatible (which is good). There are 6 antigens they look at- they are genetic markers, we get 3 from each parent for a total of 6. They can now take someone to be a donor even if they have zero mathing antigens, because the rejection medications have improved so much. But of course, the more antigens that match the better. We matched 3 out of 6, which is great. The MRI looks at the size of the artery going into the donor's kidney, and it also looks to see if there is one artery or two going into the kdiney. Narrow arteries could cause an increased risk for blood clots for the recipient (me). And most people have one artery going into each kidney- some folks have two, and that makes the kidney not suitable to be donated. Everything on my cousin's MRI looked great.

Her file goes to the comittee on Tuesday. We should be getting a phone call on Wednesday, so keep us in your prayers.

If Brenda is a match, Mayo has told us we can have the surgery as early as mid-December. But we have decided to wait till early January. That seems best for everyone.

I am nervous. I feel like we are so close. Spending so much time around all our friends & family who have babies has only deepened our longing to have a family of our own. We love spending this time with everyone, but when everyone goes home & the house it quiet again, the saddness settles in. But we have to just keep moving forward & hoping. If I have the surgery soon, maybe nexy holiday season we will be able to start trying again.

I hope everyone has a happy holiday!!

Benefit Flyer!

2008-11-14T14:58:00.001-08:00

I am so proud of myself. I have never really used MS Publisher before, and look what I made!

I also made a simpler, half-page flyer for us to hand out to folks we run into.

BECOME AN ORGAN DONOR!!!

2008-11-13T09:11:00.000-08:00

I wanted to share this article that was recently posted on UNOS' website (United Network for Organ Sharing.

Release Date:
10/08/2008

U.S. Transplant Waiting List Passes 100,000

As of Oct. 6, 2008, more than 100,000 people were registered awaiting an organ transplant from a deceased donor at U.S. transplant centers. This is the first time that threshold has been exceeded.

The kidney is the organ most commonly needed and most commonly transplanted. More than 400,000 people in the United States are being treated for end-stage kidney failure, and of those more than 76,000 are listed for a deceased donor kidney transplant. The kidney waiting list has increased by 42 percent since January 2004, while the liver list has decreased by four percent and the heart list has decreased by 23 percent over the same time period.

This occurs at a time when the overall number of transplants has increased more than 11 percent since 2003, and reported deaths on the transplant wait list have decreased each year since 2004. Yet this milestone serves as a reminder to us all of the growing need, and of the opportunity for society to help meet the need through donation.

Many efforts continue to increase organ donation and recover as many usable organs as possible from these donors. These include HRSA-sponsored collaboratives to identify and share best practices, ongoing awareness campaigns such as those conducted by Donate Life America, and numerous professional education and community-based awareness initiatives.

NOTE: At any given moment, not all patients who are listed are actively awaiting a transplant. Those who are in inactive status have been evaluated and accepted by a transplant center. They are not actively eligible for an organ offer due to their current health status, incomplete insurance/financial arrangements or other reasons. These individuals could be reactivated by their transplant center at any time without losing priority for an organ offer. Both active and inactive candidates are reflected in statistics of those who die awaiting transplantation (nearly 6,700 in 2007).

http://www.unos.org/news/newsDetail.asp?id=1165

As of 12:13pm EST today, 100,535 people in the U.S. are awaiting an organ transplant....
It is SO EASY to become an organ donor. Visit your local DMV office, and they can get your signed up.

THE BASIC FACTS
• On average eighteen people die everyday in the U.S. while awaiting a lifesaving organ transplant."
• The total number of patients waiting for an organ transplant today numbers more than 100,000. More than one-third of them will die before a donor can be found.
• The waiting list for organ transplants is growing at the rate of 1,000 per month. Another name is added to the waiting list every 13 minutes.
• A total of 28,352 organ transplants were performed in the United States during 2007.
• Yet in 2007, there were only 8,087 people who donated one or more organs upon death. There were another 6,306 living organ donors.
• In 2007, 6,411 Americans - one every 90 minutes - died while waiting for a transplant.
• The refusal rate among families of potential donors nationwide is around 50 percent. However, a recent Gallup poll found 93% of respondents willing to donate a deceased family member's organs if he or she had expressed this wish prior to death. It is very important to sighn up on the Daonate Life California Regisrty. Either through the DMV when you apply for or renew you driver license.
• Transplantation is no longer considered experimental. It is a desired treatment for thousands with end-stage organ disease. Each year, approximately 900,000 Americans receive tissue transplants and mor than 28,000 receive organ transplants.
• In recent years, medical breakthroughs have greatly improved the success rate for transplantation... it now generally runs in excess of 80% for transplants overall.
• Currently, only about 8,000 of the approximately 15,000 medically suitable potential donors actually donate each year. Only about one third of the donation potential is being realized.
• Under ideal conditions, one donor can supply as many as 8 organs (heart, 2 lungs, liver, pancreas, 2 kidneys, and intestine). At today's average recovery rate, the current pool of potential donors could meet the needs of up to 50,000 people per year.

Also, to dispel some myths and misconceptions:
• Becoming a donor will not affect the quality of your medical care. Organ recovery takes place only after all efforts to save your life have been exhausted, and 2 doctors have declared you legally brain dead. The donor family pays none of the costs associated with donation. If you are a donor, you can have an open casket funeral.
• Transplants are accessible and available to everyone. Celebrity status and wealth do not enter into the equation. Organs are allocated according to medical criteria (urgency of medical need, blood/tissue type, height and weight).
• All major religions support or permit donation and consider it a gift, an act of charity.

The Twins are here!

2008-11-11T09:13:00.000-08:00

My bestie Lisa had her twins on Friday! Identical boys. :) Born 11/7/08 @ 10:25 & 10:26am by c-section. Preston Ryan was 5lbs 5oz 18", and Hunter Paul was 6lbs 10oz 19". Big boys for twins!!
Mommy & babies are all home now & doing great! I am going to visit them again today with my other bestie Carissa and her son Trey Donovan, who is 9 months old. Yay!

Preston Ryan

Hunter Paul

Auntie Erin & Hunter

Auntie Erin & Preston

Uncle Rick with the future Florida quarterback!

Not sure who this is.....

Exciting news

2008-11-06T15:30:00.000-08:00

Mayo called my cousin Brenda today- they have scheduled her to finish her testing here in Jacksonville! She will be there the week of Thanksgiving- how fun that we get to have her here for the holiday. :)
She has testing on Nov 24, 25, 26, & 28. A busy week! But we are very excited, and looking forward to seeing part of the West Coast Gillooly clan.

Everyone, please pray for my cousin! Pray for a safe trip, and many blessings on her for being willing to give me such an amazing gift.

We're getting closer, but not there yet. So keep those prayers coming!

Wow....

2008-11-05T19:36:00.001-08:00

I think this about sums it up....

Scary. Reeeally scary. And unfortunately, not an uncommon thought process...

Benefit #1

2008-11-03T19:09:00.000-08:00

Plans are in the works for the first of hopefully several benefit events for my medical expenses. My best friend Carissa- her sister-in-law is a wedding/ event planner & she has offered to put this evening together for me! She has created a blog for the event:

http://www.supportorgandonation.blogspot.com/

We are having a dinner, silent auction, cabaret performance from local professional theatre folks, and dancing w/ a DJ. Should be a fun night!

We are also going to talk about organ donation. We will present some facts & answers some FAQ's, and provide info & resources to get folks registered to be an organ donor.

Right now we are working on drumming up donations for the silent auction. So far we have some really great items!
Stay tuned for more details.

Update

2008-10-31T09:34:00.001-07:00

I spoke with my cousin Brenda via email this week, and we are moving along well in the donor screening process. Brenda is in Colordao- on Tuesday, she had some more blood tests, an EKG, and started a 24-hour urine collection. Which I have done several times, and it is less than a pleasant chore...
She is having a chest Xray & an ultrasound done this afternoon. The living donor coordinator told Brenda to give it about a week, and then call her to make sure the results are getting to Mayo.
After that, the rest of the testing must be done here at Mayo. They have told Brenda they are working on getting her set up to come to Mayo in about 4 weeks. So, we might possibly get to visit with her for the Thanksgiving holiday! We are all looking forward to getting to spend some time with her. I haven't seen Brenda since my cousin Molly's wedding. Which was... um... when was Molly's wedding? Was it really 4 years ago?? Time sure does fly.

I didn't have time to 'scare' up a costume for work this year. So, this is my ghetto costume. Guess who I am...
Happy Halloween to all!

My first riding lesson

2008-10-23T15:34:00.000-07:00

As I mentioned, I have started learning to ride horses. Strictly for pleasure; no shows or anything (for now). All I know is that I love the animals & enjoy riding them! There's an awful lot to learn.

I've only had one lesson so far but I enjoyed it, and I only fell off once, haha.

No photos yet, but next Friday when I go back (I have a wedding rehearsal to attend this Friday) I will take some.

Amanda, who I am learning from, is my sister Michel's best friend. She has been on horses as long as she can remember. She said she doesn't really remember learning, so she is worried about giving me 'proper' instruction. But honestly, I just want to learn how to ride for my own enjoyment.

She lives out in Glen Saint Mary on a little over 2 acres & has two horses, Sage & Midnight. They are both very friendly, but they are 'spirited'. Sage is a 4-yr old gelding Quarter Horse, he is kind of a caramel color. He was rescued from a barn that got shut down here in Jax a few years ago because of animal cruelty. They rescued something like 50 horses. Sage looked awful when she got him; he has put on almost 200 lbs & is a beautiful animal, but he hasn't been worked with enough to make him very obedient or confident. He is actually somewhat of a fraidy cat when you take him off her property, because he simply doesn't know what alot of stuff is. He also was very neglected at the barn he was rescued from, and they hardly ever worked with him.

Midnight is a 14-year old Quarter horse mare. She has only had 2 owners- Amanda, and the lady she bought her from. She is all black with just a tiny spot of white between her eyes and her rear ankles. Amanda bought her from a friend who had raised horses her whole life, but wanted to sell Midnight because she had thrown the lady, fell on her & landed her in the hospital. (This is information that was given to em after I had been riding her for an hour!)
She is very friendly, but she just has her own ideas about what is going on & if she doesn't like your agenda, well that's too bad!

She warned me that her horses are not exactly good horses for a beginner.....

Midnight also does NOT like the saddle strapped too tightly. Every time we tried to tighten it, she would pooch her belly out & just stand there looking at us... we finally settled on it being a little lose instead of aggravating her, because it was my first time on her. I only planned on walking her slowly.

We rode around in the yard for at least an hour, just kind of getting the hang of some commands. She really was being good, so I asked Amanda if we could take them off the property for a walk.
Sage is kind of pokey; he is a bit lazy. But Midnight wants to move quickly everywhere. She gets impatient walking or standing. She had been behaving pretty well & listening to me- we were riding back to the house after walking around for a good hour or so, and since Sage was really dragging along, Amanda kind of took off ahead of me. Well Midnight did NOT want to be behind him (no one told me she prefers to be in the lead all the time!), and when he got ahead of her she took off. I just started riding, and all I know how to do on a horse right now is WALK!
The slightly not-tight saddle kind of rolled over to the right a little bit, which left me sort of half hanging off. I wasn't sure what to do & all I could picture was going underneath her feet, so instinctually (instead of falling under her), I leaned forward & grabbed on to her hair. Big mistake! Of course, to a horse that means "LET"S GO!" and that's exactly what she did. I felt her back feet come up off the ground as she started to gallop & I panicked, so I kicked my left foot out of the stirrup, and then pretty much jumped off. I hit the ground and kind of rolled; at some point I twisted my ankle pretty good. Not sure if I did that while bailing, or when I hit the ground. It's bruised and it's still sore, but it'll be fine! I had some other fun bruises appear over the course of this week, and my knee on my other leg has been hurting, but it feels much better now. I wanted to learn, and falling off is something I have to learn too.

I think Midnight thought I was stupid... As soon as she realized I wasn't with her anymore, she stopped & turned around. I think she was thinking, "why did you do that....?"

It's mostly my lack of experience that caused the fall. I really had to talk Amanda into leaving the yard, and then after my spill she felt really bad. We had actually turned around to head home at Amanda's suggestion a few minutes before the fall. Sage had seen some trash on the ground that scared him (I told you he is a chicken), and he was nervous, and Midnight was feeding off his agitation.

Amanda wants us to definitely stay in the ring next time. We are going to put Midnight on the lunge line, and I will ride her with Amanda walking with us, and we are going to practice going from walking to a trot and back to walking for awhile, so I get a better feel of both and how to control my own body when the horse is doing each. I think I just got excited & wanted to move too quickly. I've always wanted to do this, and being sick has kind of made me a little more brave- I know I am not knocking on death's door, but I figure I might as well do all the things I've wanted to do before I am physically unable to do them.

So, now I am in the market for some very simple & basic riding gear. I need some boots, jeans that are better for riding (no breeches yet- they are expensive!), possibly some half chaps, and definitely a helmet.

I've been tagged

2008-10-23T09:23:00.001-07:00

My friend Mandi tagged me to do this post!

The challenge was:
Go to your folder of pictures on your computer. Open the 4th folder, and upload the 4the picture, then explain it.

HAHAHAHA
OK so... This is from the Cinco de Mayo party the girls in my office had in '06. L to R: Susan, me, Meredith. Not alot of explanation needed other than it was a long night....

Finally a little good news

2008-10-22T18:42:00.000-07:00

Sorry for the delay in posting; things have been pretty busy both at work & home.

Good news- my cousin Brenda has passed the first step to being a donor. Her bloodwork matched & they confirmed she is the right type. I am not sure what if any other things they did in the initial bloodowork. Now she has alot of testing- things like xrays, EKGs, physical, etc. She can do about 80% of the next tests at her home (Colorado). The remaining tests will have to be done here at Mayo in Jax. So we are moving forward; its encouraging that we are actually getting somewhere instead of feeling like I am just sitting around getting sicker.

I had a follow-up with my rheumatologist last week and she took some blood samples. When she first saw me 6 months ago, there were some slight indicators of lupus or something similar, and even though she had pretty much ruled out lupus, she wanted to be sure that those things had cleared up (signs of inflammation in my body, which can be pregnancy-related, or lupus-related). She also checked some other things, including my creatanine (kidney function indicator).
When I saw my nephrologist 6 weeks ago, my creatanine was around 3.7 (I think), which means about 18% remaining kidney function. But, the bloodwork I did last week had my creatnine around 2.3. Which is slighty better! This is good news. For now, my kidneys are working a little better than they were 6 weeks ago. The longer they stay at the level they are at & don't get worse, the longer I don't have to have dialysis.

Oh, I also started to learn to ride horses. That is an adventure I will save for another post, because it is way past my bedtime.

More Muppet Fun

2008-10-17T10:09:00.001-07:00

Here are a few more to keep you laughing. I love the Muppets!!!!

This one.... LOL!!! Watch each Muppet... they're all doing their own thing.

Habanera

2008-10-17T10:05:00.000-07:00

I can't stop laughing!

Bicitra

2008-10-08T12:19:00.001-07:00

I am now taking a medication called Bicitra. It is a clear liquid, I drink 2 tbsp. twice a day, diluted in water. It is because I have renal tubular acidosis, which basically means too much acid in my blood because my kidneys are not filtering it out. Bicitra, simply put, is baking soda for my blood. Keeping my acid levels down is very important in order to keep me off dialysis.

http://en.wikipedia.org/wiki/Renal_tubular_acidosis
http://www.mamashealth.com/kidney/rta.asp

Bicitra tries to fool you- you open the bottle & it's clear, seemingly innocuous and has a pleasant grape-flavored scent. Kind of like Dimetap. I like the taste of Dimetap, so I figured it wouldn't be so bad. Wrong! This stuff is seriously nasty. It's very salty-tasting, bitter, and it leaves a film in your mouth & on your lips.

So now, I have to drink this crap twice a day. I'd much rather start the day with coffee & end it with wine, but such is life.

Grandpa Reller

2008-10-07T09:25:00.000-07:00

Sorry for my extended absence; things have been hectic at home. Rick's Grandpa Reller passed away Sunday night. He lived in Hendersonville, TN; Bruce & Beth (Rick's folks) go up there regularly to visit, usually every 4-6 weeks. Grandpa has been in poor health for several years now. He had a stroke awhile back, and he also had lung problems & had a really difficult time breathing, even with supplemental oxygen. He has been unable to travel for about 3 years.
Bruce & Beth were up there this past weekend for their regular visit, and Grandpa had an episode on Friday- my understanding is that they think he had another stroke. He had no physical strengh left, and then the 2 men tried to help him off the couch he collapsed. I was told he was in alot of pain, so they administered morphine. The ambulance was called, but Grandpa put up a fight. His wish has always been to stay home- which I totally understand. So, Hospice agreed to stay with him, and Grandpa was able to stay home.
I think he was just finally ready; finally done with being sick & in pain & unable to live any kind of quality life. He was 83 years old, I think. He passed peacefully, at home with all 7 of his children at his bedside.

We are leaving early Friday morning to drive up there, along with David & Mary (Rick's brother & his wife). The service will be on Saturday, followed by a big family party at Grandpa's house. Thats what he wanted. :) I told Rick, "You're having what the Irish folk call a wake".

Rick is doing OK for the most part. He is the oldest Reller grandchild, and has a lifetime of vivid memories of Grandpa. He is very sad, but I know he is glad Grandpa isn't suffering anymore. But we have had a pretty rough year. A year full of loss. Grandpa Reller, my Uncle Skip, and our beautiful daughter, all gone within 6 months.

Robert's visit

2008-09-27T19:09:00.000-07:00

My brother Robert came to visit this weekend! He has been talking to Dad about planning a trip down here (he lives in Mississippi with his wife Carla & stepson Decarol). My sister Michel was coming to Jax from SC this weekend- her husband Mark & Chel's son Anthony had a paintball tournament here in town. So, Robert decided this would be the perfect time to visit since everyone would be here.
We all had a great time!! I haven't seen Robert in a few years and I was so happy he was able to come down here. We had a family dinner at Rick & I's house last night- the weather was beautiful, it was almost a cool night & a few of us sat outside to eat. We played some pool & darts in Rick's game room, and just hung out & got caught up.
I can't tell you how happy it made my Dad to spend this week with Robert. He is worn out but they had such a great time.
Check out my photobucket for more pictures!
http://s343.photobucket.com/albums/o464/thekistners/Robert%20n%20Chels%20Visit%209-27-08/

Hematologist appointment

2008-09-25T08:28:00.000-07:00

I had my follow-up with the hematologist yesterday; we went over my bloodwork from a few weeks ago. He said I am still anemic, but not nearly as badly as when I was post-pardum. So the anemia was not caused by the pregnancy, just aggravated by it. My iron is still significantly low, as is my hemogloben & some other blood stuff that I can't remember the names of.
He said he could just put me back on the Procrit shots, but since I am only mildly anemic, he doesn't want to resort to that just yet. So, he wants me to start taking an over-the-counter iron supplement 3 times a day, if my stomach can tolerate it. If my tummy finds this disagreeable, I can back it off to 2 times a day or 1 if I really need to, but he would prefer 3. I also have to take a calcium supplement along with the iron pills, because calcium helps the body in absorbing the iron properly. He was going to suggest I drink orange juice, but I can't because it's full of potassium.
He said that once we get my iron levels up, there is a possibility that there will be an increase of the hormone that my kidneys send to my bone marrow to tell it how many blood cells to make. I have to do more bloodwork in 4 weeks, and if my iron levels are still low, he said I will have to probably get iron supplementation via I.V.. Which sounds unpleasant to me, so I'd like to avoid it if possible.

I go back to see him in 5 weeks, so more updates to come.

Cholesterol & Animal messengers

2008-09-15T19:21:00.000-07:00

Rick's bloodowork came back- he is not diabetic, which is great. But, his cholesterol was high, which is not so great. So, we are both on the diet bandwagon together. It's tough; we both love Southern style home cooking, but we are trying to stick to the adjustments.

Mayo clinic has sent my cousin Brenda the vials for her to get her blood typed, so we can see if she is a possible match. Everyone please continue to keep our families in your prayers.

Today after we got home, we let the dogs out & then I went back inside. Rick went to go get the mail, and he called me outside to come look at something. A really lovely butterfly had found it's final resting place just beside our driveway. It must have floated down from somewhere right after we went inside. It was nice, we stopped for a few moments to admire it & life slowed down for a minute after a crazy day. It was very fragile; I still don't know how it made it into our yard in one piece. I wondered what message it was trying to bring us?

Not everyone feels that animals have a soul or a spirit but I do. I also think they try & communicate with us, I think they try and be messengers & want us to be part of their life journey too. While I very strongly consider myself a Christian, I still believe the rest of God's creation has a spirit. I have always had a special love for animals, and even though having 5 animals in my small house can get crazy, they remind me every day what life should be like. They love without limit, are the most faithful friends you could ever ask for, and all they ask for in return is our love.

So, tonight I looked up butterflies online. I found it very intriguing:

"Butterfly spends the first part of its life crawling the earth, before metamorphosis leads it to spin a home for stasis (known as a cocoon). After transforming, Butterfly is reborn as various beautiful colored winged creatures of the air.
This insect is extremely sensitive to the Harmony of Earth, and is the first creature to leave a damaged ecology. Butterfly's graceful dancing-like appearance on flowers reminds us to find the joy in nature and make it a part of our life.
Butterfly enters our life as a messenger for change. If it comes to us hurt or ill, Butterfly asks us to stop keeping our joy at bay. It may take some time being alone with ourselves to listen to Butterfly's gentle requests that we allow the natural transformation of things in our lives."

I looked it up online and it is a pipevine swallowtail. Here are some pictures we took. (The last 2 are photos I got off the internet of live butterflies of the same kind)

I also had a visit from a hawk the other day. We have seen him flying around our neighborhood for a number of years and we figured he had a nest in the nearby woods. The other day when I came home, he was actually sitting right on my fence in the front yard. I pulled in the driveway and watched him for a minute- he just stared at me. He didn't fly away until I got out of the car. He was really neat- he had big red eyes. I looked him up too, and I am pretty sure he is a Cooper's hawk. Either that or a sharp-shinned hawk; the two are very similar. Here is a picture from the internet of a Cooper's hawk.

"While many birds are regarded as messengers between the worlds of spirit and matter, Hawk is considered to be more dedicated to this role. It symbolizes clear-sightedness and a long memory. It's also believed that if you hear a hawk cry during a journey, it's wise to be alert to the possibility of situations that need boldness and decisiveness so that you won't be thrown off balance.
Hawk's cry may also be telling us to open our awareness, for in a deeper sense this bird symbolizes the messages that are always available to us, if we pay attention. In this sense Hawk teaches us the lesson of receptivity.
So often we ask for something, either aloud, through repeating or writing affirmations, or through our thoughts. Then we wait and wait, and nothing seems to have happened. Not only haven't we received what we asked for, but we don't even seem to have even received a clue about how to get it.
This is the message of Hawk medicine: The answer is always given. Hawk, while soaring high in the sky, is always alert to the slightest movement on the ground below. When we cultivate that kind of awareness, we are adjusting our vibrations to receive the messages that we want to hear. In this state, we find synchronicity operating. We may be looking for a new place to live and see an article describing the ideal location. We're trying to solve a problem on the job and happen to surf onto a web page that offers a perfect solution.
Not all of our answers come from the outside world. Hawk also stands for inner vision, drawing on our own intuition and psychic awareness. When we trust ourselves, are receptive to answers whatever their source, we soar with Hawk."

An article I want to share

2008-09-11T19:43:00.000-07:00

I'm sitting awake right now, my husband sleeping in the next room but as usual sleep isn't happening for me just yet. I wanted to share an internet article about a baby who was born at 21 weeks. Strangely enough, her name is Amillia. Amillia's good fortune though was that the doctors had time to get her out via c-section. The trauma of labor & birth is what killed our Amelia.
But I wanted people to see the pictures of this baby. She is so very tiny, but she is real. And, believe it or not, our Amelia was bigger than this baby- an inch longer and over an ounce heavier.
The baby in the article is an African-American baby, so she looks alot darker & browner, but this is startling close to what our daughter looked like. Tiny and frail, but very much a baby.
I get very frustrated because I feel like many people around me think that, after 6 months, I shouldn't still be grieving like I do. Like I am content to wallow in my grief.
I think alot of people think that unless you lose a 'real' 8-lbs full term baby, it's easier to heal. That a baby you never 'knew' doesn't have the same attachment. But it doesn't matter if your baby died at 5 weeks, 5 months, or full-term. Your child is gone. No one expects a mother who loses an infant to be OK after 6 months. No one expects the mother whose toddler dies to be OK after 6 months.

I can also see how uncomfortable it makes people when I talk about my daughter. Especially people with their own new or soon-to-be babies. Being reminded that babies DO die makes people feel uneasy. But that doesn't mean I should be expected not to talk about her.

I know very well that life must go on, and the world will keep moving around me. But I still feel like it's moving without me. And I think it's OK for me to still feel like that. I'm working through it, but it's a slow process.

Look at these pictures, and if this was your child, if you held her tiny body & felt it go from warm to cold in your hands, would you be back to your normal self in 6 months?

http://funny.zeeblum.com/2007/02/21/baby-born-at-less-than-22-weeks-survives/

Stupid storm...

2008-09-09T15:11:00.000-07:00

I think stupid Tropical Storm Fay killed my passiflora caerulea vine..... the storm blew all the beautiful flowers away but I also don't see the leaves anymore. I keep waiting for it to spring back up but nothing yet... keep your fingers crossed. :(

"100 Years" by Five for Fighting

2008-09-08T16:17:00.001-07:00

I put the song "100 Years" by Five for Fighting on my playlist; scroll down, it's near the bottom. I just love this song. It's about how even though life changes & complicates as we grow up, we should never lose that wild heart we have when we are young and care-free. It's about making peace with your past & where & who you've been. It's about how we should remember each moment because they are over so quickly. A lifetime seems so long but it really isn't.

http://www.azlyrics.com/lyrics/fiveforfighting/100years.html

Nephrologist appt today

2008-09-08T14:16:00.000-07:00

I had my nephrologist follow-up today; I see her every 6 weeks now. I had my bloodowork done on Thursday- my creatanine levels were up a little from 6 weeks ago, which means my kidney function levels were down from 20% to about 18%, so no dialysis yet. I knew they wouldn't be great, because I did not hydrate very well at all the day of & the day before the bloodwork. I actually forgot my water bottle the day of the test. Also I was bad & had a cup of coffee that morning. The dr also said that one of medications, Diovan can produce a slightly higher creatanine reading on my bloodwork. But the Diovan is partly to help my blood pressure, and mostly to help me not spill so much protein in my urine. She said that next month, she might back me off the Diovan a little. My blood pressures have been pretty consistently around 100/65, so I have a little room to go up on that, if it means lowering my creatanine & keeping me off dialysis a little longer.

She really stressed the urgency to find a living donor it at all possible. I am kind of in a critical window- if I can get transplanted before I have dialysis, the success of my surgery will be drastically better. Any remaining function in my own kidneys will take strain off of the transplanted organ. And better surgery success means better chance of us getting pregnant again sooner- possibly after only a year.

My sister will be unable to donate because of some of the medications she is on. So, my awesome Gillooly cousins are next. Brenda, and Chris Frische (Rachel's husband). Gillooly kinfolk- next time you talk to or see either of them, just know how wonderful they are & what they have been willing to do for me! It still is amazing to me.

I am kind of aggravated with Mayo Clinic's living donor department. My sister was really proactive in trying to get the info & paperwork she needed from them, and they really drug their feet. She also had to make multiple phone calls to get someone to call her back. *sigh*

I'm not sure if Rachel reads my blog, but if you do, I promise I will call you soon. If I'm not at work, I am trying to keep my house clean (hah) or making dinner- my poor hubby doesn't get off work till 8:30 so we usually don't get to eat until 8:30-8:45 on a good night. Then there's the five animals and the ensuing messes they create, bless their hearts.
For you Yankees, that's a Southern way of softening an insult or gripe. Somehow it just sounds kinder- "That Billy, he is such a dumb-ass, bless his heart".

When I'm not cleaning or cooking, I'm sleeping. That's the part of this that has physically been the hardest- the fatigue. It sucks, but such is life for now.

Plans for my reading room

2008-09-06T11:13:00.000-07:00

We are working on finish our reading/ sitting room. Rick has given me artistic license to make the room as "foofy" as I want. Seeing as I tend to have foofy taste, and I have tried to keep the foof in our house at a minimum thus far, this makes me very happy.

A brief description:
The floor is a medium oak color laminate. Walls are a very pale sage green, with wainscoting in a darker sage. Trim is a creamy antique ivory color.

Only furniture we have in there for sure right now is a beautiful armoir that was give to me by our friends David & Chris. It's the only piece of Ethan Allen furniture I own! It looks pretty much like this (another Ethan Allen piece from the same collection)- except mine is not quite as wide, and the doors have mirrors.

We are moving the bookcase in there, which we are painting to match the armoir. It is about 5' wide, and 4' high.

I already have some ivory lace/ embroidered curtains that we are not using anymore, so in the interest of not spending money, I think I am using them in the reading room.

So now, I am deciding about light fixture, window treatment, rug, some sort of chair.
I would really like to have this chaise lounge but Jesus Lord it's ridiculous expensive ($500). I will mostly likely be getting something similar. That is not $500.

Here's what I am thinking for lamp, table, light fixture, & rug.

I think it will be lovely! As you can see it will definately be a 'no pets allowed' room.

Music!

2008-09-05T15:43:00.001-07:00

As you might have already figured out, my/ our blog now plays music! I admit, the pink background for the player was my doing.

I figured this blog needed a little pick-me-up.

I will add & change song(s) from time to time, so enjoy! Browse through the list & see what there is. Let's see if anyone is surprised (or horrified) that I like some of the stuff I do. I might sing it day in & day out, but my listening tastes are not all classical all the time, believe it or not! For instance, I wonder how many of my dear blogites knew of my love of classic country & western, and also bluegrass & old-fashioned Southern gospel...? Or Barbara Streisand...? Your girl is lovely Hubble. *sniff*
Meeeemories, like the corners of my mind.
That is Rick's favorite song.

Parental Advisory: Explicit Lyrics- I have added the song "Bulls On Parade" because it is my Guitar Hero jam. I totally slay when I play that song.

Bloodwork today

2008-09-04T12:33:00.000-07:00

Yesterday I went back to the hematologist for another follow-up. He has been treating my anemia. He said on my labs from late July, my hemoglobin looked really good. So it's possible that the anemia was primarily pregnancy-related and not caused by my kidney failure. I went & had more blood work today; I go back to see him again in 2 weeks.

Rick had some blood work done yesterday- they had trouble getting the vein on his arm, so they had to draw from the back of his hand. He was telling me about it and said that it hurt, but then he thought for a minute and said, "No sympathy, huh?"
You got that right! haha

Today I also went for my monthly blood work to check on my kidney function. Last time I was right at 20%. If i get to 15% or below, that's when I have to start dialysis. I see my nephrologist on Monday and we will be going over the blood work results.

I've been pretty stressed out about it. It's pretty overwhelming to go to bed every night knowing there's always a chance that any day, I might be bound to a machine to filter my blood 3-6 hours a day, 3-5 days a week. Every day we have to think about the fact that even with dialysis, there is a real possibility that I won't live long enough to find me a kidney.
A friend of Rick's from high school, her brother was on dialysis and got a staph infection (which is not uncommon) and died this past week. He was only 40.

I read all the time about these amazing strong people who are sick and say they're never scared, they just accept what comes at them, that they just greet every day with a smile and never let it get them down. I just don't know how to be one of those people. Maybe it means I am weak, but I AM scared, and I'm not OK with all the crappy things that have happened to us. I'm not always smiling and it does get me down a lot.

Anyways, I am off to make macadamia-crusted mahi for dinner.

Quick kidney-related update

2008-08-29T05:16:00.000-07:00

I saw my primary care doctor this week, we addressed getting me on a cholesterol medication. I started on Crestor, for which I have to have bloodwork every 4-6 weeks. All cholesterol meds carry a very very small chance of liver and/ or muscle tissue damage, so they will be monitoring that.

I see my hematologist next week; he is the doctor treating my anemia. There has been ALOT of confusion with their office, and stupid Quest Diagnostics labs. I haven't had a Procrit injection for the anemia in a couple of months, and I am not feeling as bad as I used to. The severity of the anemia may have been aggravated by being pregnant, so I am going for more bloodwork on Monday to see where me hemoglobin level is at, and we will take it from there.

I'm in the process of trying to find a new neprologist. There's been a number of things that have happened since January that have made both Rick & I uncomfortable with the one I see currently. She is a super nice lady, and has been so good to me, but we have really felt uneasy with some of the decisions and info we have been given. For example, when I was still in the hospital in January, she told me that I would not be able to have any more children after my kidney transplant. I cried & cried for 3 days. But since then, we have found through our own research that that is NOT true anymore. The rejection medications have changed so much over the years and now post-transplant women have babies all the time. All of the surgeons & doctors at Mayo have said Yes, you will be able to have children.
There's been a number of other things, so we just feel it's not a good fit for us.

So, I called my coordinator Rhonda at Mayo, and she said she wanted to get me in as a patient of one of their in-house nephrologists. I would love this, and it would make the whole process alot easier. No more "Chinese telephone" with all of my labs, records, etc. Unfortunately, there are currently only 2 nephrologists on staff at Mayo, and Rhonda said they are not taking new patients right now. But she is going to try and get me in as soon as they have an opening.

On a different note...

College football season is upon us! The Gators kick off their season tomorrow @ noon against the Rainbow Warriors.... Hawaii. It should be a shut-out! We have some friends coming over to watch the game with us on our awesome 42" plasma TV in high-definition.
My Uncle John (dad's brother) and Aunt Ruth Ann are going to the game in Gainseville at The Swamp, and then will be heading to my Mom & Dad's for dinner. I am looking forward to seeing them!
Here is a song to brighten your day.

(sung to the tune of the Oscar Meyer bologna song)

My head coach has a first name, it's U-R-B-A-N
My head coach has a last name, it's M-E-Y-E-R
I love to watch the Gators play,
and if you ask you'll hear me saaaaaay...
That Urban Meyer has a way
with F-L-O-R-I-D-A

Go Gators!

Finally getting around to uploading vacation pix...

2008-08-24T18:24:00.000-07:00

We had a fantastic time on our vacation. We visited my maternal grandmother & my aunts & uncles in Pittsburgh, PA.
We spent one day while we were thee at Kennywood, an amusement park in Pittsburgh. We got there when then opened just after 10am & pretty much shut the place down! We left just before 10:30. It was awesome!!! We almost had to cut the day short- we got almost 3 hours of on & off rain- COLD rain- but we toughed it out. We walked through some fun houses & played in the arcade & eventually the rain let up. We rode all the roller coasters 2-3 times and did as many rides as possible. Well except for the ones that SPIN. I will ride any roller coaster, no matter how scary looking. I will even to the sky coaster, where you free-fall from a tower that's 250 ft high. But spinning? Not for me! It makes me sick, bleh. I can't even ride the teacups at Disney World.

We spent alot of time with family, relaxing or hanging out. We have a great time with my aunts & uncles up there & we both wish we could see them more often.

I was especially excited that I got to bring home some of my great grandfather's artwork. I brought home a beautiful pencil sketch, and a watercolor painting he did of a WW I battle scene. He was a veteran of that war so it meant alot to me to be able to have it. I will take photos of them soon. There is a landscape painting that will be coming home with us eventually, when someone can drive up there. It's too large to put in a suitcase and it makes me really nervous to have it shipped. Sure, they can insure the package, but if they lose it, money can't replace it.

We also did a little touristy driving around town, and visited the Carnegie Museum of Natural History. The have a really awesome hall of dinosaurs, and a great Egyptian exhibit. If you enjoy museums and are ever in or near Pittsburgh, make sure you pay this museum a visit!

Oh and Rick got to see one of the cute groundhogs that have taken up residence in my grandma's backyard, and also one of the bunnies that like to eat the clover growing in the driveway.

It was so hard leaving though, because I knew it would probably be the last time I would be at my grandma's house.

All in all it was a great trip. It was nice to get away from stress, work, doctors, sickness, and sadness.

Here are some highlights! I will post the rest to my photobucket tomorrow.

Passiflora Caerulea

2008-08-22T14:59:00.000-07:00

We have all kinds of strange weed-y vines growing in parts of our yard. There's one area on the side of the house that has some tall bushes, and vines have grown up through them. Rick initially thought it was Virginia Creeper. Well a couple months ago one of the vines started blooming and Rick commented, I didn't think Virginina Creeper bloomed... When I first noticed it had flowers, I saw one through our bedroom window I couldn't tell it was a flower from a distance. It looked like some kind of weird bug! Which is not uncommon in Florida, so I went to check it out & I was surpised to see it was a flower.
They were very bizarre! Almost exotic & tropical.But things have been hectic & busy so we haven't paid much more attention to it.
Yesterday evening we were walking the yard to survey any storm damage and I got to looking at the blooms on the vine again, and I said to Rick, You know.. these flowers really are pretty! I wonder what they are?

I took a couple really pretty pictures of the flower which I will upload at a later date. Since I am house-bound today because of the storm, curiosity got the better of me & I decided to find out what the heck was growing in my yard.

I did a Google image search for "purple & white flower". And sure enough, not very far into the search results, I was able to find a web page with a picture of our funky flower. It is...

Passion vine! Passiflora Caerulea.
(These are not the pictures I took but our flowers look EXACTLY the same!)

http://en.wikipedia.org/wiki/Passiflora_caerulea

I wonder how it made it's way into our yard? But it is really neat looking! So we are going to let it stay. Apparently it will make little passion fruits that are edible, and the flowers can be used for tea.

Fay Update

2008-08-21T19:12:00.000-07:00

We have been safe at home since about 4:30pm. There's been plenty of wind all night. It's steadily windy, and there are frequent gusts that really bend the trees. I'd say about 30-45 mph. It's been raining non-stop since about lunchtime, but there hasn't been much heavy downpour. More of a moderate but steady rain;p small misty drops as opposed to big heavy ones.

A couple hours ago JEA was reporting around 80,000 homes were without power. Most of the bridges were closed by the time we got home. We had to take an alternate route past downtown & across the Fuller Warren bridge.

We've just been enjoying the night @ home together; mostly we have vegged out & watched movies & taken occasional trips outside to take in the storm. The dogs & cats are very happy that we are home! All the mammals have been a little clingier than usual, they don't like storms and this one has alot of noisy wind so they are a bit unsettled. The cats keep staring intently at the windows- the sound of the wind is blowing their kitty minds.

Conditions are supposed to stay the same or possibly worsen throughout the night, but it seems like maybe Fay will be moving west of us by early morning.

On a non-weather related topic, my cousin Brenda called me the other day. She is fairly certain her blood type is O+, and she offered to be screened to be a living donor for me. How awesome is that?

Also, my aunt gave me a more than generous gift while I was visiting her. I can't tell you what it meant to me that she & my uncle were willing to do that for us.
While I was still in the hospital in January, Rick's 2 uncles & aunt also gave us amazing gifts. When the doctors put me on bedrest during the pregnancy, our income got cut down by over a third literally overnight. Without their help, we would not have made it through the 2 months I was out of work.

We really do have an amazing family!

I have a big family on both my mom's & dad's sides, and are spread out all over the country, from one coast to the other. But I have always been so proud that we are a family who, no matter how far apart we are, always comes together for one another.

Well I am off to finishing the movie we are watching; I hope all the Florida folks stay safe & dry tonight!

Vacation & Fay

2008-08-21T12:17:00.000-07:00

Greetings from not-so sunny Florida. We are currently riding out Tropical Storm Fay. Initially it was a tropical let-down; the storm stalled out over east central FL for almost 3 days- our local schools were closed Tuesday & Wednesday but all we had was a few breezes & sprinkling rain. It has finally picked up today. Bridges are starting to close, mostly out at the Beaches, but I have a feeling the others will follow shortly. My boss just called & said she got word the Buckman Bridge is closed so we are going to have to find another way home. Also a sailboat crashed into the Buckman bridge. Who the hell had their sailboat out today???
Rick & I are still at work. My boss has given us clearance to live, but Rick is still waiting...

The wind is getting worse; there's reports of gusts between 30-40 mph all over town. It's supposed to get progressively worse over the course of the evening, so we shall see what the night brings.

We got back from our vacation on Monday, it was awesome!!! More on that later. Pray that we don't blow away!!!

Diovan & Chair Wars

2008-08-04T17:12:00.000-07:00

Not much new on the Renal Front. I went to my nephrologist Dr. Kancha last week; she added Diovan to my meds, this is to reduce the amount of protein I am spilling in my urine. Which is apparently alot. She also added Lipitor, to help the cholesterol situation. She sent me for bloodwork, and I go back in a month.
I asked her at what point I will need to start dialysis, and she said that that will be when mykidney function drops to 15% or below. So we have a little time, but we can't be sure how much. It might go down slowly, or it might stay steady for awhile & then take a dive. Just another 'wait and see' situation.

On a lighter note, I thought I'd share some pictures of our 'kids'. Most of our family hasn't met all our pets. Many of you know that I have a small soft spot for animals. OK make that a large soft spot. It's a good thing my husband is the voice of reason or we would be living in a barn. I'm one of those people that has the invisible sign above my head- the one that only animals can read, that says "Sucker". Ask me some time about the long line of strays that have come in & out of our house. Hey, I figure- if nothing else, I am earning alot of good karma points.

We have 3 kitties- 2 older ladies and one little kitty, about 11 weeks old. We also have 2 large dogs. The male dog Max is a Shar Pei- Pit bull- Lab mutt. He is gentle as a lamb! Lexy is a German Pointer/ Lab mutt. She is very smart, but has the attention span of a gnat. A toddler gnat.

They are our 'kids' in every way, they are our family and I don't know what we would do without them.

So- now to the pictures. These were all taken tonight. The kitten- Bella- her new trick is drinking from the faucet. We call it the Magical Fountain... it mystifies her but she loves it. I saw her licking the water in the bottom of the bathtub and I thought, I wonder if I could get her to figure out the faucet.... It worked!

I am also posting a pictoral account of one of the many battles of the Chair Wars. There is a spare chair in the computer room, and apparently it's THE place to lay when Rick or I is on the computer because they always duke it out for the chair. Bella usually loses, but her advantage is that she doesn't know when to quit. That and no matter how bad of a beating she gets, she comes right back for more. Ah, kittens.

P.S. here is a link to our album on Photobucket. More pictures, if anyone is really bored.
http://s343.photobucket.com/albums/o464/thekistners/Our%20Creatures/
P.S.S. I didn't proofread this entry, and I don't feel like going back & fixing any typos. Take that, Grammar Police!

* * * * * * * * *

I like chair

I like camera

You're in my chair kid

Oh hell naw it's my chair

I'm alot bigger than you

Willow, the victor & still Master of the Chair

Transplant update

2008-07-29T11:26:00.000-07:00

Just a quick update of actual transplant-related things. I am officially listed as of June 16, 2008. We are in the process of screening for a living donor. Mayo is working on my sister right now; we will actually find out what blood type she is in the next week or so. If she is not a match for me, I think the next person on our list is Rick's brother. Mayo will only work up one possible donor at a time.
We have a follow-up appointment with GYN today; how exciting.

I have an appointment with my original nephrologist, Dr. Kancha, on Thursday. Now that I am listed, I will not be seeing much of Mayo until I find a donor and have the surgery. Dr. Kancha will be managing my care in the meantime, and I will go & see her once a month. I'll have monthly bloodwork which will monitor mykidney function. For now, I do not need dialiysys, and we are hoping to have the surgery before that time comes.

Uncle Skip, part II

2008-07-29T11:10:00.000-07:00

I have spent the last week trying to come up with something wonderful and original to post about my Uncle Skip who passed away last week. I keep coming back to the blog my sister wrote. She said everything I was feeling, and she said it all so perfectly. So I am going to plagiarize a bit. Well, I guess it's not plagiarism if I am giving her credit. More of a quote.

Friday, July 18, 2008

The End of an Era

My father is one of six siblings, three boys and three girls born into an Irish-Catholic family in the tiniest of towns in Ohio. They grew up working-class (very) poor, my grandfather and grandmother getting by as best they could after the Great Depression financially devastated the family. By all the children’s recollections, they had very little, but were a soundly united front. True, they would scrap like all hell amongst each other. But if an outsider dared to go after one of them? Well. That poor bastard would soon find themselves reckoning with the entire fiery brood, don’t you know. They continued as adults to sometimes scrap amongst one another on occasion, but always came together for the good times and the bad to support each other. Family weddings are the stuff of legend- good drink, lots of music, and lots of loud laughter. Odd as it may sound, my grandmother’s funeral is one of my best memories. It was a fitting tribute, in our own twisted way, when the grandkids slipped a cigarette and a beer into the casket with my grandmother. After all, those two things were favorite pastimes of Grandma's- you know, like knitting or something in other families. Now that she was comfortable after years of her body failing her, she’d certainly want a smoke and a drink for the journey. I don’t remember our parents even trying to feign anger. Hell, they’d probably have done it too if they’d thought of it.

Last night, my father lost his brother. Years as a diabetic had sent him into kidney failure some time ago; he’d been on dialysis for a while, ineligible for transplant because of his age and other health problems. Finally, his body simply surrendered. Even the heart of a wild Irish son can only take so much.
Uncle Skip was my favorite of my father’s two brothers when I was growing up. He was always good with the kids- quick with the hugs and songs. He had a great voice. My father’s family is divided into “the singers” and “the hummers”. Daddy and I are in the hummers. Uncle Skip was very much a singer. I remember when I was in high school, my grandmother’s mind was failing as quickly as her body. She needed a family member with her around the clock in the hospital. It was summer and I was out of school, so I volunteered to spend the night. Uncle Skip took me home the next morning and I remember how sweet he was to me on the ride, doing things like going out of his way to make sure I got exactly what I’d like for breakfast. He was clearly relieved and touched that I’d taken that night shift. At the time I hadn’t thought much of it, it was only one night- for family, you do these things. No thought, no question. What I hope he knew is that I learned that lesson partly from watching him, my father, and the other siblings. As Uncle Skip got older and his body failed, he got a tad less patient and perhaps a tiny bit grumpy at times. But everyone knew it was the pain talking. Fortunately, his wife, Aunt Kay, is one of the funniest and kindest women you’ll ever meet. Just before he died, they celebrated their 50th wedding anniversary. I have a feeling he was hanging on for that, God love him.

My father and his siblings are so fortunate, to have been a complete set for so long. Very few big families can say they were all present and accounted for until the youngest is in her sixties. And while I know how lucky they’ve been, I find myself so sad for my father and my remaining aunts and uncles. My cousin pointed out that the longest relationship you have is with your siblings. I can’t help but think that Uncle Skip’s death must feel like the beginning of a different and very unwelcome era in their lives, where they begin to face the inevitability of slowly losing their original family circle.

Tonight, I will celebrate Uncle Skip in fine family tradition- by drinking and telling stories. I will shake off my sadness and raise my glass to a good man whom I am honored to call a relation. And I will raise a glass to my father, and to the rest of that clan full of stubborn, funny as hell, unruly souls with hearts of gold. Mar sin leat, Lawrence Patrick.

Posted by Lady Liberal at 9:12 AM 5 comments

The Birdhouse

2008-07-27T19:32:00.000-07:00

My grandmother lives pretty much by herself in the Ciccone family's large homestead in McKees Rocks, PA. Grandma has come to be known as Grandma-Bird, and the house affectionately dubbed The Birdhouse. She is in her 70s now and even though she is probably healthier that all of us and will out-live us all, it's still a tremendous amount of house for one woman in her 70s.
The Birdhouse is old, I think the original parts of the house date back to somewhere around the turn of the century. The rest of the house kind of rose up around it, built mostly by my mom's grandfather, father, and uncles. Grandma and my aunts and uncles have spent the last 20 years finishing projects and such. The time has come for my grandmother to sell the house. We all knew the day would come, I just didn't know that I would be so very sad.

This house was always kind of a magical place for me and my sisters when we were little. We were only able to make the trip up there every 2-3 years. It's an 18-hour drive, and plane tickets for 5 people gets pretty pricey. But when we did make it up there, we were excited for weeks before we left. We don't get to see our Yankee kinfolk much, and we always have so much fun while we are all together.

My grandmother's house is, like many old houses are, very unique. There's lots of places to explore and hide in. I remember hours and hours of playtime, seeing what 'treasures' we could discover in the attic and the basement. We found all kinds of fun things- old board games, Barbie dolls from when my mom & aunt were girls, old prom dresses and clothes for dress-up. We used to have races on the stairs to see who could bump down on their butt first to the bottom. The house backs up to a large wooded area, and lots of animals like to come up into the yard. We used to sit and watch for deer, birds, chipmunks, groundhogs, bunnies, etc. There is a beautiful backyard with a lawn of soft Yankee grass. None of the scratchy St. Augustine stuff we have to grow here in Florida. I love to walk through Grandma's backyard, even the smell of the dirt is pleasant. I love the way the grass feels beneath bare feet. I have memories of being very small, and Uncle Ralph giving us rides in the wheelbarrow.

The house has its own little apartment on one side, where my great grandmother lived. GG's side of the house could be accessed by either a door that was off Grandma's dining area and opened into GG's dining room, a hallway in the back of the house, and also a 2-ended closet that started in Grandma's dining area and opened into GG's living room. We used to love to sneak into the closet- all 3 of us- and creep quietly to the other door, and jump out and try to scare GG while she was sitting in her living room watching TV. She always acted so startled, and then laughed and laughed. Who knows if we really scared her or not; she probably knew how much fun we thought it was and just played along. But I still remember her laughing.

I don't have many memories of my grandfather; he died when I was 7. But the few vivid memories I do have are of course at the Birdhouse. In one memory Grandpa was sitting in the middle room of the house, and I remember being small enough to have to climb onto his lap. I don't remember him saying anything, but I remember a big warm hug and the smell of pipe smoke. I also have memories of Grandpa and the other grown-ups sitting in the backyard while we played.

The basement has changed alot over the years. Mom told me that even since we visited last October, they have done alot of work down there & it looks great.
But the basement used to be what I called the Blair-Witch Basement. Dark and shadowy and super creepy... dirt floor, creaky steps, cobwebs. Tons of random old tools, equipment, etc. Even when we were teenagers, my sisters and I wouldn't go down there alone! But still, we loved it.

We were up there in the winter only a couple of times. We used my mom's old sleds and tried to sled down the little hill behind Mrs. Romano's house (Grandma's neighbor). We built a snow fort under a large evergreen tree on the corner of the house. We hiked through the woods and looked for animal tracks.

A trip to Grandma's always meant days and days of games and playtime, fun with my sisters, and fun with family members we love and don't get to see much.

I am also proud that the house was built mostly by my family. I have always had an immense appreciation for anything hand-crafted. Although it needs the kind of work all old houses do, it's a solid house, and it's finely built.

So, today when I got an email from my Aunt that had the link to the realtor's listing for the house... it hit me. I opened the link, and there were the pictures of one of my favorite places in the whole world. For sale. And I cried. I didn't expect it, but I did. It all became real.

http://www.era.com/erabin/listing?Property=2550323

We are heading up to visit in mid-August. I am so glad we will be able to get to spend some more time with everyone there before the house is gone. I know that this is the right thing for Grandma, and I am happy for her that she won't have the burden of a huge old house anymore. But it is still hard. I can't imagine what my mom and my aunts & uncles are feeling. My uncles even helped my Grandpa to build alot of the house.

I pray all the time that someone who will love and truly appreciate that house is going to come along.

My Uncle Skip

2008-07-23T17:16:00.000-07:00

Last night the Jacksonville Gilloolys had their own tribute to my Uncle Skip, since we were not able to make the trip out to Albuquerque. We went out to a nice dinner; we laughed and told stories and had a good time. We then went to Mass at Mom & Dad's parish; after mass, I sang The Parting Glass. My dad (and me) shed a few tears. We then came back to my house, poured a few glasses of Jameson, and toasted Uncle Skip. It really was a nice evening, and I know Uncle Skip was with us.

I took a few photos as well as a couple videos. Check out the link below to view the photos. I had trouble getting the videos to upload, for some reason my bandwith was les than desireable tonight... but I am going to try again later this week.

Slàn leat, Uncle Skip.

http://s343.photobucket.com/albums/o464/thekistners/Uncle%20Skip%207-22-08/

I can't sleep

2008-07-21T00:30:00.000-07:00

I really don't like to talk much, but sometimes I get something in my head and it spins around and around. I obsess and it drives me nuts. I used to write everything down for the world to see, but I lost that interest a long time ago.

Well, Erin did this blog, and I guess I kinda just don't really keep up with it. What's the point in me checking on something I know about first hand, you know? I'm there anyways.

Sharing my feelings isn't something I am big on.

I was counting tonight, trying to fall asleep. Too much coffee with dinner can keep you up, but it's better than too much beer and she's dragging me out of my chair.

So, counting ... by my math, we're somewhere around 38 or 39 weeks, Erin would know to the minute. But assuming 39 weeks, that means our baby would probably have been born a little less than a month ago if everything would have gone like the doctors had been hoping. We always knew she'd be early, that Erin would have preeclampsia or something else, but that 35 weeks was our big good number, that once there we were golden. I'm counting, day by day, looking at a calendar in my head. Stewing on something because I obsess. And I realize, just a few minutes ago, that right now we should be planning her 1 month birthday. Instead, we're dealing with everything else, trying to stay focused on all of the positives, trying to plan for the future, hoping to see things fall back into place.

I realize that things will never be the same.

I am listed!!!!

2008-07-15T14:08:00.001-07:00

It's official! My file was presented to the committee today, and my coordinator just called me to let me know everything went just fine and I am in the door! As soon as the minutes from the meeting are printed (which should be tomorrow or Thurs) I will be officially listed.

So, now we can start screening donors and looking for a match. We're moving forward slowly & making progress towards putting our lives back together.

Who knows, maybe this time next year we will be able to try and have another baby. Time will tell. Keep praying!

EXCITING NEWS!!!

2008-07-11T09:33:00.000-07:00

Yesterday I went back to Mayo for my gyno visit and for the additional bloodowork. Gyno was normal; unpleasant and humiliating! The bloodwork was ordered by my coordinator to see if we could possibly get a kidney function reading of 20% or below before my file goes to committee next week. A couple weeks ago they got me at 21.5%.... So, my coordinator suggested we do the bloodwork one more time, and told me to not drink anything (not even water) after dinner the night before, because being well-hydrated can make your creatanine levels look better than they really are.
As I mentioned before, the insurance companies will not allow Mayo to list me on the national transplant list until we get that 20%. And we can't start screening potential donors until I am on the national list.

Well my coordinator called me today, and the bloodwork from yesterday got a reading of exactly 20.0% function!!!!! That means that once the commitee approves me, I will be able to be listed. She said my file goes to committee this coming Tuesday, 7/15/08. She will be calling me the next day to let me know the official decision, but she said she doesn't anticipate any problems.

This means there will be no sitting around waiting for me to get sicker. It feels good to finally have something go our way! I owe SO much thanks to my coordinator. She has really been on our side and has gone to bat for me on more than one occasion.

So, one hurdle has been cleared! Now we need to get moving on finding me a living donor. More to come soon!

May Clinic: Day 4-ish

2008-07-08T15:59:00.000-07:00

Sorry for the delay in posting! The holiday weekend kept us pretty busy and work has been hectic because I have missed so many days for doctors appointments. I've been taking stacks of work home with me and finishing things at the house.

Our final full day at Mayo was on Wednesday 7/2/08. I had some more bloodwork early in the morning (only 2 vials!), and then we met with the head of the surgery team. Dr. Ganwa is also the regional director of our region for UNOS (United Network for Organ Sharing) so we are really confident that I am getting quality care! He was very nice, and we liked him very much. He went over all the results from my tests and labwork, and also answered lots of questions we had.

Turns out I DO have some small kidney stones but Dr. Ganwa didn't seem alarmed. He said they won't need to treat them unless they get really large and start causing problems. My bloodwork showed that my cholesterol & triglycerides are through the roof.... I am not going to say the exact number because y'all would REALLY freak out. I was feeling like a fat lazy American, but the doctor said even if I was a super skinny vegetarian, it would probably be pretty high. Both are aggravated greatly by my kidney failure. So, there are plans to add a cholesterol medication to my regimen of meds. We are also meeting with a dietician soon.
http://www.nlm.nih.gov/medlineplus/ency/article/000490.htm

We asked him about my changes of getting pregnant later on. We have been getting mixed information and had been feeling pretty down-hearted about it. But Dr. Ganwa said YES, there is definately a very good chance I can have a healthy pregnancy. We must wait at least a year after the surgery (which we knew), and the function of the new kidney must be good, and my creatanine levels must be steadily below 1.5. He gave the some information about a doctor in Philadelphia who has been collecting data and researching pregnancy in post-transplant patients for over 15 years now. We have gotten ALOT of good info and are feeling much more optomistic.

We did have one setback though. Dr. Ganwa said that the labs they did on me these past 2 weeks showed my kidney function to be at 21.5%. Insurance companies, being horrible and evil like they are, will NOT allow me to be listed on the national transplant list until I reach 20% function or lower.
My case will still go to the transplant committee this week, and all my of diagnostics & work-ups are good for one year. So, Dr. Ganwa said that my creatanine will get tested once a month and as soon as I drop to 20% or below, I'll get listed.
There's been alot of sadness at home since we got this news; we took it pretty hard. How much longer to we have to sit around and just wait for me to get sicker?

However- I called my transplant coordinator today to ask her a few questions, and as she flipped through all my lab results she saw the 21.5% that they got. She was really bummed out... then she said, "Tell you what. You'll be here Thursday for another appointment. Let's send you to the lab & have them draw another renal function panel & see what we can get". She said for me to try and not be super-hydrated when I go have the blood drawn, because that can make my creatanine levels look better than they really are. She said I can drink something with dinner the night before, but after that, nothing- not even water. SO, cross your fingers everyone & say a prayer that this works so we don't have to WAIT any longer.

After we met with Dr. Ganwa on Thursday, we met with the infectious disease specialist. The anti-rejection drugs greatly suppress your immune system, so we are going to have to take alot of extra precautions in the first 6 month-1 year post surgery. We won't be able to allow anyone over at the house who has so much as a sniffle. No babies with runny noses, etc. At work, at least at first, people will need to 'foam in' to my office. I will have to be diligent about hand-washing and not touching things like door handles & surfaces in public, which I am already pretty paranoid about so that should be easy. Rick will have to take over on cleaning the kitties' litter box (yay!), and all of the pet bathing. Once I feel physicall up to cleaning house, I will have to wear gloves and a mask, but I will still have to avoid an yexcessive dust or mold/ fungus type things.

She told me I don't have any AIDS or syphillis or gonnoreah, hurrah. She said I have also never had any kind of herpes virus, not even a cold sore. They could also tell just from my bloodwork that I had already had chicken pox & mono. There are some vaccinations I need to go get (tetanus, pneumonia, hepatitis, pertussis) and some others I can't remember.
I mentioned to her that I worked with kids for over 2 years and she was shocked. She said "You'd never know it from your bloodwork!" There's quite a few common germy things that she said almost everyone who works with children will get at some point. Apparently Ms.Erin was nice n' clean while she worked at the preschool/ daycare. I rock!
However, this means that my immune system won't have an antibody for it if I catch the germ post-surgery, which means we have to be extra careful.
She eased alot of our worrries about our pets & my post-surgery immune system. She said pets are fine as long we we observe some common sense things- keep them bathed, free of fleas, and don't let them lick my face. She said I will have to wear a mask for a little while after the surgery to protect me from getting sick, but she didn't mention for how long.

I went to my primary care doctor, Dr. Carlos, today to get the immunizations that Mayo ordered, but I was running a low-grade temp, 99.5 @ the doctor. I have been dragging & just feeling icky since Friday but I was trying to keep on keepin on. Last night Rick finally said to me, "You feel warm..." so we took my temp, which was 99.4. Dr. Carlos took a urine sample to make sure I didn't have a UTI but he said there was no sign of any type of infection. He was very hesitant to vaccinate me while I was running a temp and not feeling well, so we rescheduled for next Tuesday. He was out of the pneumonia vaccine, so I would have had to come back anyways.

So, tonight I am still running a low temp and just feeling like I want to do nothing but lay down. I go back to Mayo on Thursday for bloodowork and my gyno consult, so if I'm not feeling better by then I will see what they think. Boy I just can't wait to have my pap smear. Yeah.

On a lighter note....

2008-07-01T15:20:00.001-07:00

Here are some highlights from our dinner at the Shack by the Track....

V

Mayo Clinic: Day 4

2008-06-27T13:22:00.000-07:00

Today was thankfully a short day. We had an appointment with our social worker at 9:30. We were running about 15 minutes late, but fortunately so was our social worker! We talked with her for almost 2 hours. She asked us all kinds of questions about our lives and families, how long I have been sick, etc. We told her about Amelia and how everything has happened so fast; how just 6 months ago we had a normal, quiet life.
We liked her alot. She was really nice, but she was also very honest and didn't sugar-coat anything. She seemed really pleased by how much support we have; she said it will make this whole process so much easier.
We talked about Medicare and what it will cover for me, and she answered some questions we had. Overall I felt it was a good meeting.

I am heading out to my boss & friend Liz's house tonight for some girl time and fun. Several of the girls from work are all going out to dinner, then we are staying the night at Liz's house to watch movies & hang out. Liz lives in Maclenny, FL, which is a fairly rural/ small country town. The BBQ joint we are going to is called the Shack by the Track. And that's exactly what it is... a little shack next to the RR tracks! They have great BBQ, and a little ice cream stand. You can eat inside or outside on the picnic tables. Seeing as it is pouring rain right now, we will probablybe eating inside. Even if the rain clears up, the skeeters will be on the prowl.
Should be a fun night; I will post pictures!

Rick will be enjoying the quiet empty house tonight. Well, empty of any other humans. He will also have our 2 large dogs, and our 3 cats. So he won't be too lonely. I think he is going out to his game room (aka the Man Cave) to shoot some pool, throw darts, and watch ESPN.
It will be good to have some time to relax after this whole week.

Have a great weekend! More to come next week.

Mayo Clinic: Day 3

2008-06-26T19:01:00.001-07:00

Today was fortunately not as long of a day. We are pretty tired! Today we started with the follow-up to my skin tests. They tested to see if my body had a resistance to yeast, TB, and tetanus. On Tuesday they injected a tiny amount of each into my arm, and today I went back so they could see if any of them had a reaction. The injection of the TB didn't get inflamed or do anything, which is good- it means I have never had TB, nor have I ever been exposed to it. The yeast one got a little bed red; the nurse said pretty much everyone has fought off a yeast of some sort at some time. The tetanus shot got pretty inflamed, and it is SORE. There is a tiny knot under the injection site. This is actually good as well, because my body remembered the disease from when I was vaccinated, and was attacking it where she injected it. I was pleasantly surprised, seeing as my last tetanus shot was 12 years ago in high school when I had knee surgery. Even though my body reacted to the test, I will still be given another tetanus vaccination before the surgery. The nurse saidn to put cortizone cream on the spot and it should start feeling better soon.

Our other appointment today was a surgical consult with Dr. Nguyen. He was a petite middle-aged Asian man; he had a very gentle & caring demanor about him which we really liked. Our consult lasted almost an hour; he didn't make us feel rushed, or like any of our questions didn't matter. He went over all the schematics of the surgery itself, told us in detail about all the risks, and also talked about my long-term prognosis.
He had a really cute Asian accent of some sort; I'm not sure where he was from. A few times when he was talking about finding me a really good quality kidney, he said "if we find you a really beautiful kidney" but he pronounced it "byooful keeny". It was adorable! So now we are referring to my potential donor organ as the byooful keeny.

He said he really wants to be able to find a living donor- the surgery's success is considerably better with a kidney from a living donor.
In our internet travels in the last few months, we had already learned that they leave the old kidneys in your body. Dr. Nguyen explained that removing even old, non-functional kidneys is even more traumatic to your body than a transplant. He said that over time, kidneys that have shut down completely will eventually shrivel up to about the size of a walnut.
Since I still have almost 20% of my kidney function, I asked him if this is advantageous. He said YES, absolutely- that the surgeons are pleased even if you only have 1 or 2% function left, because it still takes some of the workload and strain off the new organ.

So, the quicker we can find a living donor, the better. The more of my own kidney function that remains when I have the surgery, the better it will be for the outcome. Rick and I have been talking about some different ideas. We have a small handful of family members and close friends that we are going to test first as possible donors. If we exhaust all those options and don't have a match, we are thinking about having some Donor Drives. We are going to see if we can speak to our church congregation, and we are also going to speak at my Mom's congregation (she works & attends a pretty large Catholic parish on the Westside of Jacksonville). We will keep at it until we find someone!

Tomorrow we meet with the social worker in the morning- and that's it! Then we go back on July 2 for another full day of appointments. I am glad this week is over. We have answers to ALOT of questions that we've had for months, and while we are still really scared, we did put alot of the fears to rest.

Have a great weekend!

Mayo Clinic: Day 2

2008-06-25T15:50:00.002-07:00

PHEW!! What a day. Our heads were jammed full of TONS of info today.

We started out with an abdominal ultrasound, where they scanned my kidneys, liver, pancreas, and gallbladder. The sonographer saw what she THINKS were kidney stones, but she said that they might be calcified arteries. She said that calcified arteries are not uncommon in people whose kidneys are not functioning properly. I also learned that gallstones are easy to diagnose from just ultrasound, because they are made entirely of calcium, but kidney stones are often composed of other things and do not show up very clearly on ultrasound. I will probably be sent to have a CT scan in order to determine exactly what is in there.

After that, we had 3 back to back group classes: Living kidney donors, the transplant process for the recipient, and transplant pharmacy instruction.

We learned ALOT about the living donoation process, which is an area we had many questions about.If I have to wait for a cadaveric kidney (from someone who has died or is brain dead), I will have to wait at LEAST 3-4 years. If we are able to find a living donor who matches, there is a chance that surgery could proceed in a matter of weeks. Right now, I am at the ideal time for a successful transplant- I have reached 20% kidney function, but I do not yet need dialysis.
If anyone is interested in being a living donor, please don't hesitate to ask. I have tons of info and can answer any questions or concerns you might have. You could possibly save my life!

Pharmacy instruction was a little daunting... the recipient of a kidney transplant has a very complicated an extensive regimen of medicines, many of which will have to be taken for life. We also learned how ungodly expensive these medicines are... before insurance, the average post-transplant medicines for the first year will run around $6,000-$7,000 A MONTH. Close your mouth before flies get in there.

Later in the afternoon we met with our financial advisor. This was one of the meetings we have been the most aprehensive about. The average cost for all aspects of a transplant for the first year of care (including the donor & recipient surgeries) is around $260,000. VERY scary numbers.
Our financial advisor was AWESOME and we liked her alot! She put alot of our fears to rest. She confirmed that because I have renal failure, I am elidgeable for Medicare, which will be filed first, and then my insurance through my job. We asked a ton of questions, and she put pretty much all of our fears to rest.

Our last visit of the day was for a cardiac echocardiogram, which is just a sonogram of the heart. This one was pretty cool! We got to watch my heart do it's thing, and we could see all the valves & bits & pieces all working away.

Tomorrow, we go back for follow-up to the allergy & TB skin tests they did on my arm, and we also meet with our social worker. We have lots of questions for her, too!

We are feeling more and more hopeful as we get more information. It's still hard to not be terrified though. We are facing a lifetime of doctors, pills, etc. Also, there is a very good chance that in 15-20 years, we will have to go through this surgery all over again. But, the art of medicine is advancing every day, and who knows what will be available by then.

Thanks for stopping by! More updates to come.

Mayo Clinic: Day 1

2008-06-25T15:50:00.001-07:00

As most of you know, today we began our consultations and testing formy transplant here at the Mayo Clinic in Jacksonville, FL. I have hada number of people request an email update, so here goes!We have been told that Mayo is one of the best- seems as though thisis accurate! Everything about the facility is state of the art, andthe whole place is like a well-oiled machine. All of the staff memberswe encountered during the day were just as nice as they could be. Theywere exceedingly polite and professional. It was a very long day,though..!We arrived shortly before 7am for registration. Although many peoplewere waiting in the registration area, we were called up to the deskin no mroe than 20 minutes. We were checked in in a matter of 5minutes, and the clerk said we could head upstairs to our firstappointment, even though it was not scheuled till 8am. We got up thereat about 7:40. At 7:45 the called me back for triage, and the doctorarrived in my room at 8:02 am. We were impressed! The 8am appointmentwas with the doctor who is the senior consultant for kidney/ pancreastransplants. We went over my labs, biopsies, etc in depth, and then heexplained the whole basic process to us. After my testing & such iscompleted next week (July 2), my case will be submitted to Mayo'stransplant commitee. This comittee reviews my records and thendetermines wheter I am a suitable candidate for the surgery. Thedoctor told us that from everything he could see, I am the idealcandidate. Great news!!! Of course he said he couldn't make anypromises, which we understood. But he said that they look at manythings, including other health problems, age, and if we/ I seem likewe will be able to manage the often tedious after-care & medicineregimen. I will have to take rejection medications probably for therest of my life- there are many side effects, but he said thatimmunosuppressant drugs have advanced leaps and bounds even i just thelast 5-10 years, and the side effects are becoming more and moretolerable.We then met with the R.N. who will be our transplant clinicalcoordinator. She will be with us through the entire process; if wehave any issues or concerns, she is available to us. She said after myfinal appointments on July 2, she should have my file to the selectioncomitte that same week, and we will probably get our answer within thenext week. We are really excited- we didn't know we would be able toget all of this done so quickly.After I am approved by the committe, the donor search will begin. Mayowill then begin to screen my potential living donors, one at a time.The success rate of the surgery when using a kidney from a livingdonor is signifigantly higher, so we are hoping we will find someonewho is a match. If we cannot find a living donor, the doctor saidaverage national wait time on the list is apx. anywhere from 2-4years. We also asked the doctor about our chances of having morechildren. He said the post-surgery wait time will be at least a year(which we knew), but that it is definately very possible. It willhinge on whether my new kidney is functioning well.
Our next appointment was in the lab, for bloodwork & urine sample. Iwarned the nurse, "I am a fainter!" Unless I lay down when having myblood drawn, I usually end up on the fllord. She was very sweet, andtook me to the room which had a bed. There was a little sign besidethe door that said "Swoon Room"... She got me settled and then went toget the vials needed for the bloodwork the doctors had requested. Shecame back with two metal vial racks, both full of vials. I sort fosub-consiously figured that the Swoon Room needed restocking. I waswrong.... they were all for ME. Rick began counting them and kind oftrailed off around 16. I asked, how many are there..? He said, "I'llteell you when you're done". I got about halfway through and wasfeeling OK. Then the ceiling tiles started looking fuzzy... then thecold sweat started, and at that point I knew where all this was goingto end up! That's the point at which, if I am not laying down, I hitthe floor. I did not faint, but I did get sick. No fun!!! Rick said hewas really impressed... I asked for the final count which ended upbeing.....30 vials of blood. 30!!! And he said some of them were asbig around as his thumb and 6" long. I don't feel so bad for gettingsick!
We hit up the cafeteria as soon as we could, since I had been fastingsince 10pm the night before. It was the best bagel I had ever eaten!
After the lab work we headed upstairs for a chest Xray, which wasshort & sweet. Because everything had run so ahead of schedule, wethen had a 2 hour wait until my bone density scan. That department wasrunning a bit behind (it seemed like they were short-staffed today),and I fell asleep in the little holding tank room. The bone densityscan was pretty cool, I got to see my hop bones and spine and such.The purpose of this scan is to see what my current density is, becausethe anti- rejection drugs have a tendency to leech calcium from yourbones and they need to have something to compare to later on.
Since we ran late in radiology, we had only 8 minutes to RUN to thenext appointment, which was allergy/ infections disease skin test.They made 3 tiny marks on the underside of my forearm with marker, andthen injected substances under my skin. I have to go back in 2 daysand have them see if I reacted to anything. One of the things theytested for was tuburculosis- they said they will be able to tell if Ihave ever been exposed to TB, even if I have never gotten sick, whichI thought was interesting. The first two injections did not hurt muchat all. The last one, which was the TB test, was in the middle of theunderside of my forearm, about 3 inches down fro my wrist. I found outthat THIS IS A VERY TENDER SPOT!!! That one really hurt.
Our final appointment of the day was for an electrocardiogram, whichwas quick and easy. We headed home around 3:30pm. Long day!
Tomorrow we have to be back at 7am, and will begin the day with anabdominal ultrasound. Also on the slate for tomorrow: living donorinstruction class, post-op & pharamceutical instruction classes,meeting with the financial advisor, echocardiogram, another allergy/skin test, and finally a transplant center surgical consult- mycaregiver is required to attend this one with me.Another long day, but it looks like we will be getting LOTS ofinformation and answers to questions.
Thanks for taking the time to read all of this! We continue to betouched by the outpouring of love from our friends and family. Each ofyou has helped us!!! I will have another update tomorrow.

My story

2008-06-25T15:22:00.000-07:00

Welcome to Renal Retentive, my blog about my journey through kidney transplant. I will take a moment to bring you up to speed.

I have had high blood pressure for a few years now, but because I responded so well to the meds my primary care doctor prescribed for me (Divoan), I never really thought anything of it. He also sent me for some bloodwork which unfortunately I never got done. I used to have a terrible fear of needles. I wish now that I had done what he asked, but hindsight is 20/20.

My husband & I found out we were pregnant just before Thanksgiving '07. It was a 'sort-of' planned pregnancy, but we were beyond excited! My doctor of course switched my meds right away to something for blood pressure that was pregnancy-approved. I started on Aldomet in a low dosage. In the following 2 months, they increased my dosage a few times and it seemed to be working OK.

The first week of Jan. '08, I started feeling badly, and my blood pressures at home were really starting to elevate. By the end of that week I was consistently getting readings of around 180/120. We were pretty scared so of course we called our OB. Over the next 2 weeks, they added a couple meds to my regimen. But after those 2 weeks and I didn't really respond, my OB was very concerned. I was also spilling large amounts of protein in my urine, but seeing as I was way too early in my pregnancy for preeclampsia, she had a feeling something else was going on.

I was admitted to the hospital on Jan. 8 '08 for testing and observation. They also started me on some IV meds to try and get my BP under control. I met with a nephrologist (kidney specialist) who suspected that I either had lupus, or FSGS (focal segmental glomerulosclerosis). In order to be sure, a kidney biopsy was ordered. For the record, it was no fun!!!

The biopsy results showed no lupus, but positive on FSGS. FSGS is, simply put, kidney disease.
http://en.wikipedia.org/wiki/Focal_segmental_glomerulosclerosis
http://www.nephcure.org/Info_aboutfsgs.html
They're not really sure what causes it, it can either be genetic, or it just happens randomly. FSGS basically scars the kidneys and leaves permanant damage. My biopsy showed that my kidney function was hovering just above 20%. Turns out that my reduced kidney function is what had been causing my high blood pressures fot the last 2-3 years.

We were also told that after the baby was born, I would need a kidney transplant. Pretty scary news... Husband and I were completely overwhelmed; our whole world got turned upside-down in a matter of a few days. Everything that we had planned for our futures was now uncertain.

I left the hospital after 10 days, and was sent home on total bed rest for the rest of my pregnancy. When I was discharged, I was 13 weeks pregnant. The high risk OB told me that getting our baby here safely would depend on keeping my BP under control, but even that was not a guarantee. We found out shortly after this that we were having a girl, and we named her Amelia Grace.

When I was almost 21 weeks pregnant, I woke in the night to terrible contractions that were almost immediately back to back. Within 5 minutes my water broke; we rushed to the hospital but deeo down we both knew that Amelia was just too tiny and there would be nothing they would be able to do. Amelia Grace was stillborn on 3/11/08 at around 2 a.m.. She was very tiny- around 12 oz. & 11 inches long, but she was perfect & beautiful. The doctors told me after Amelia was born that I had had a placental abruption, which is a result of high blood pressures during pregnancy.

The last 3 months have tested us beyond anything Husband and I could have imagined. We have cried and yelled, sometimes we have taken it out on each other, we have questioned every belief we thought was unshakeable. And we have loved each other more that we ever thought we could.

The greatest desire in our hearts that we have always been sure of is our desire to have a family. The doctors told us that it would be gravely dangerous for me to get pregnant again before I get a kidney transplant. And for the last 3 months, we have had very little information and sometimes very little hope. We didn't know anything about the transplant process and how long it might be- we didn't know if I would be sitting on a transplant list for years, or if we would ever be able to have the family we have dreamed about.

But we have finally gotten things in motion with the Mayo Clinic here in Jacksonville, and I am now on my way to getting on the national transplant list! We began all the testing and consultations yesterday, 6/24/08. I have decided to start this blog so I can keep family & friends informed while we take this journey together.

I must say that i have the BEST family and the BEST friends anyone could ever hope for. One positive thing about this whole experience is that we have come to see how much love and support we have. We have been just amazed by the kindness and selflessness of the people we know and love. I cannot say this enough- I don't know how we could have gotten through any of this without all of you.

So, our journey is really just now beginning. Please continue to keep us in your thoughts and prayers. There are still many obstacles along the way.

All our love,

Erin & Rick