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.
Tuesday, July 29, 2008
Uncle Skip, part II
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.
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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.
Sunday, July 27, 2008
The Birdhouse
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.
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.
Wednesday, July 23, 2008
My Uncle Skip
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 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/
Monday, July 21, 2008
I can't sleep
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.
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.
Tuesday, July 15, 2008
I am listed!!!!
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!
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!
Friday, July 11, 2008
EXCITING NEWS!!!
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!
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!
Tuesday, July 8, 2008
May Clinic: Day 4-ish
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.
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.
Tuesday, July 1, 2008
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Rick & Erin at the Biltmore House, Christmas '09