Polycystic Kidney Disease (PKD) Support Group

Wow.

Yes, thanks for this. I am learning a lot these days.

I have not gone on dialysis yet, but did meet with the transplant team from Swedish hospital from Seattle, here in Alaska this last week. So, I am beginning the barrage of testings, to be determined if I am a candidate to be put on the list. It would be interesting to know how long this will all take, and if I would be able to skip dialysis...... but I doubt that there are answers for that questions.

Hi Heather, this is really exciting that you've been examined by the transplant team. Do they say anything to you? I have a friend thats been put on a list here in upstate NY. She had to be taken apart and put back together again, and if that wasn't bad enough, they ask her to come in every month to be examined, blood work, etc. I guess with her it will go on as long as it takes to get a kidney. She also is not on dialysis and they told her the same thing that was in the article, but I don't know if she's going to make it, her GFR is dropping fast these days. Did they tell you where you would be on the list, if you are a canditate that is, I bet that you will be, no doubt about that. Keep us all posted and good luck to you.

Heather,
As my transplant clinic is out of state and I traveled there, my evaluation, start to finish, took 2.5 weeks. But that was for a dual liver/kidney transplant, so there were some extra tests (especially on the blood work side) and I had multiple tests in a single day. The faster you can get the testing done, the faster you can get listed, so find out exactly what you need to get done, what tests they'll accept from which doctors (e.g. will they accept the PAP results from your GYN and the mammogram results from your regular annual mammogram or do they require their own testing?), etc. Also find out what vaccinations they want you to have in an ideal world before the transplant (e.g. hepatitis B) so you can get started on those now; they shouldn't delay the process, but if you can get them going now, you'll be ahead of the game (and be sure you're up-to-date on the regular ones you should already have!).

One suggestions (among many): Get and keep copies of absolutely everything in a safe location and keep a calendar of when every test was done. Dates are critical as certain test results "expire" after a certain period of time (e.g. 12 months) and you need to ensure they are kept updated so you don't end up on the inactive list due to overdue tests (although in an ideal world, your transplant coordinator will help you ensure this happens...or better yet, you won't have to wait a year!).

Once you're listed, blood work will need to be done AT LEAST every month (UNOS requirement) if not more frequently (depends on the transplant center). They need to have the most up-to-date tissue typing and blood work available to ensure the system is updated with your latest information and they can start verify the match before you even arrive at the transplant center. Kidneys require the most thorough match of all organs, so tissue typing is critical (by contrast livers only require a match in blood type and body size).

Good luck and hopefully you'll get that kidney before you need dialysis or any of your tests expire. And do read the other post about talking about kidney donation; it really does help people find living kidney donors.

Norma, lists are state by state and NY is not particularly fast in getting transplants. I was on the list in NY and then transferred my credits to NJ (I lived in the Bronx and NJ part time). I was called for NJ and had no particular loyalties as to which state to get a transplant from. another friend from the Bronx waited 7 years for a kidney. my wait, in total, was nearly 4 years, nearly 3 on dialysis.
if you don't have a donor try to get on lists in more than one state. best is a state that doesn't have motorcycle helmet laws (they call bikers who don't wear helmets "organ donors"). FL is one, CT may be.
for you Ruth, I was listed at MD University, I understand they move pretty quickly, but NJ called first.
the workup is pretty extensive and with good reason. the aim of a good transplant center is quality, not quantity. they don't want to give kidneys to people who are going to cherish the precious gift and will have unhealthy lifestyles. they want to know that you are going for regular exams, mammos for women, colonoscopies etc. the aim is a long lived transplant. they want regular bloodwork which would explain your friend, Norma, going there monthly, tho most don't require you visit them, just that they get lab results.

Gosh Helen, I wasn't even thinking of myself for a transplant, I'am waaaayyyyy toooooo old!! haha. I doubt they would even consider me a candidate at my age. My hope is that I don't ever go into complete failure, thats my hope, but don't know if it's a reality at this point, buy maybe. My first thought would be to save the kidney for younger people, ones that have their whole life in front of them. I'am going to be
67 in Dec. UGHHH But a fact. I think about the young kids on this list, and cringe with fear for them, pray they don't have to wait very long. I think about all of them every day of my life! If there is anything I can ever do for anyone, please let me know without fail. lots of love to you all...

well one thing you won't be doing for them, Norma, is donating a kidney.
I wasn't referring to you so much Norma but just giving information about waiting lists in various states and about the reason for the extensive workups.
as to age, its just a number and there are lots of people in their 60s and older who are quite young, just as there are people in their 40s who are old. its a state of mind.
I often tell my grandsons I'm old, one day the older one, probably 9 at the time, told me, "you're not old, Grandma". I told him it was because he and his brother kept me young. to my surprise he said, "yeah, we do".

Helen,
MD has a very good reputation. Around here, a number of people actually go south to University of Virginia as they have a shorter list than MD. In the general DC area we're actually on the border of two UNOS regions, 2 (which covers DC, WV, PA, MD and NJ) and 11 (covers VA, KY, TN, NC, SC). The waiting times at the centers immediately surrounding DC are much longer than those at the center within the same region but further out, and the wait times in region 11 are shorter than region 2 (and I could drive to the University of Virginia in Richmond just as quickly as I could get to the University of Maryland or Johns Hopkins).

I'm in a unique situation as I need a liver along with the kidney, so I'm going out of these regions entirely. I need a center that's experienced with cystic livers and there are very few who have done one, let alone multiple PKD dual liver and kidney transplants. While our kidneys may be simple to transplant, the massively cystic livers are much more complex than a regular liver to transplant, not only due to the ridiculous size and shape, but we have some added complexities due to the nature of the disease itself: connective tissue abnormalities that affect the blood vessels and healing (and the liver had extensive blood vessel connections versus the single artery and vein for a new kidney) and massive requirements for transfusions. There are a few other nuances as well (I have them written down some place). It's essential to me to have a transplant team that's familiar with my disease and knows what to expect and isn't going to be surprised by what they find and will be on the look out for complications that are more common with PKD/PLD but they usually don't see with their liver transplant patients.

For anyone who's wondering about lists and regions and how they work, check out the UNOS website at www.unos.org. They have a wealth of information on how the allocation process works, what the various regions are and what areas they cover.

Cheers,
Ruth

Well, actually yes, I really do have a lot more to add about my meeting with the kidney transplant team from Swedish hospital in Seattle (here in Alaska). Get a load of THIS!!!! The surgeon who examined me was the same surgeon who did my brother's transplant about 10+ years ago!!!! He and the social worker on the team remembered my brother!!! And, my brother has been estranged from the rest of us for sometime (which is heartbreaking). So when I got home and emailed my sister-in-law to tell her about the surgeon (I was so excited) she whipped back an email telling me that I would stay with them during all of the 6-8 weeks of recuperation, they would take me to all of the appointments and watch over me!!!! They live nust north of Seattle. This was my biggest issue, as I didn't know who would fill that requirement (they don't put you on the list unless you HAVE a name/names for that position). My husband is an engineer, and I don't think he could leave his work. This was such an encouragement, I can't tell you. It's like God has been telling me this last year that "you don't know everything, trust a few issues to Me". Wow, I am still just giddy with the thought of reconnecting with my brother!!!!

I still don't know what's going to happen with my house where I have tons of houseplants and three darling kitties who are really my family, but I will take one step at a time.

I have no idea how long the waiting list is, at all. Don't know what to expect. But the surgeon sure did explain things well. He, unfortunately is retiring in a couple weeks, but he did give me a lot of confidence in the team. He said that they were the ones who began NOT using prednisone for transplants, and it has been followed around the globe. That's pretty amazing, as I remember the side effects on my mother, years ago.

The surgeon said that he thought I had plenty of room in my abdomen for a kidney, without having to remove one, which was good news, as I wondered about that.

Yes, the vaccinations.... I don't know where I am going to find those records..... I can't remember what I have had and what I haven't. I wonder if they can tell from the blood work. Also, they said that those pregnancies that women have, cause a lot of antibodies in the mix..... interesting, huh?

I am 0+, and from what I have read, that's a more difficult match. But again.... I just have to take one day at a time. I don't have a lot of energy these days, it seems that one or two doctor visits and tests, and I just come home and rest. I have to really work on some form of exercise, as that's always seemed to be the defining issue for me. Just walking around the block (although it's pretty cold up here in Alaska). Last night it felt good loading up the woodbox, walking up and down the stairs of the deck to the second story.

I do have much to be thankful for, and I suppose I need to keep focusing on that, and speaking of it, because, as my chiropractor says, I am a healthy person, besides my kidneys. At 61 I am healthier than a lot of much younger folks who don't take care of themselves. Yes, we have to care for these amazing bodies that we travel around in.

Blessings to you all!!!! Thanks for listening. I hope to get to know you all better.....

Heather

Heather,
I'm delighted to hear about your sister-in-law and brother; it's amazing how somehting like this can bring a family together again!

Don't worry about the houseplants and kitties. Just make out an instruction sheet for how to take care of them and chances are bevvy of people will step forward to help out once you get listed and you'll have your choice of people to select from to house an cat sit.

O+ isn't a more difficult match; there are just more of us so the list is longer.

The non-steroid protocol list becoming much more common worldwide. Basically everyone get prednisone in the hospital, generally a massive dose during the transplant and then a tapering dose while you're hopsitalized, but once you leave, barring any complications, you're on Prograf and Cellcept (and miscellaneous other meds) only, no steroids. Never say never, but the goal is no steroids.

For your shot records, check with your primary care doctor; if you've had the same one for years he may have the records. Part of my workup included extensive lab work for exposure to various diseases (e.g. coccidiomycosis, CMV, Hep B, etc.), but tetanus wasn't one of them. I guess when in doubt, getting a new DPT shot would be in order (better safe than sorry, you never know when you may run across a rusty nail). If you can get a copy of them, have them written down in a universal vaccination record (standard yellow shot record) or just get a printout of all of your vaccinations and keep a number of copies in a safe location (I have my international shot records plus a spreadsheet with all of the ones I've had since I was 24...active duty miltary helped with ensuring I had records).

You're going to get through this with flying colors. You've already passed the first hurdle of finding a place to stay and are reconnecting with your brother in the process! I'd say the miracles are already beginning!

Ruth