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!

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

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

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

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

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

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