Polycystic Kidney Disease (PKD) Support Group

I haven't had a transplant. But others on here have; I'm sure they can offer you some great advice/warnings/etc.

I am also curious Viking Dude (love your screen name)! I should be having a transplant around the same time if my current donor option ends up being a match.

hi Dude and welcome!
first, good luck with your transplant, hope all goes well and easy for you and your donor - who by the way is a fantastic person for doing this.
it would be best to stay wherever your transplant is done for a week or so after because the transplant center will want to watch you closely for the first few weeks, some centers do it daily, to monitor your blood and make sure there are no infections.
many transplantees visit the transplant center for the rest of their lives with visits to their own nephrologists in between. but many transplantees don't live 500 miles away.
discuss this with your nephrologist to see if he/she feels confident in following up with the necessary bloodwork, exams etc. and possibly staying in touch with the transplant center.
fyi, the exams done by the transplant center include bloodwork, blood pressure checks, taking your weight (not to see if you're getting fat but to watch for edema (swelling)), taking your temperature (first year only unless you are sick), all things that can be done by your own nephrologist.
the first year post transplant is the most critical, once you pass that without problems your visits will be less often.
been there, done that, look forward to hearing about your transplant experience.

VikingDude,
Welcome! And congratulations on having a living donor...an angel on Earth!

Your transplant coordinator is the best resource for the exact requirements and expectations of the specific transplant center; each has its own protocols. Plus each case is unique, so it will depend on how you're doing.

I'm currently working with a transplant center out of state for a dual liver/kidney transplant (will need to have a deceased donor). In my case, post transplant I can expect to stay in the hospital for as few days as possible (probably a week or so, but often less than a week for the kidney only patients; the transplant teams generally want you out as soon as possible to minimize your risk of getting an infection...the last place you want to be when your immune system is signficantly impaired like it is post transplant is in a hospital!).

Once released from the hospital, I need to stay nearby for for 3 weeks to 3 months, depending on how I'm doing and how well my body is adjusting to the new organs.

After that period I follow up with my own nephrologist at home on a set schedule which will vary depending on how long I am post transplant and how well I'm doing (I think it's weekly at first, then every other week, then monthly for the first year (labs are also on an extending schedule, daily to weekly to monthly (and stay monthly for an extended period of time).

I only return to my transplant center for annual follow ups (required at my center, especially because I am also a liver patient) or when there are complications. They will always be my transplant center and any time there is a question about my transplant, medications, etc., that will be the center/team that is called, no matter who my nephrologist happens to be. I can calla them now with any question I have (even though I'm not actively listed, just waiting for my MELD score to increase enough to be actively listed...livers are a very different process) and will be forever.

Hope this information helps. You may be able to find more information online at www.transplantliving.org or one of the other transplant oriented website. You can also check your transplant center website; they may have their kidney transplant patient handbood available online (some centers do).

Good luck!!
Ruth

Congratulations are in order!!! That's wonderful!!!!

I just met with a kidney transplant team from Swedish Hospital from Seattle here in Alaska this week. As I will have to travel to Seattle (at the drop of a hat) I will have to stay near the center for 6-8 weeks with some one committed to being with me for 24/7. I suppose that each transplant center has a similar requirement, but I would make sure that all of your questions are answered in advance by your transplant team. Believe me, I understand the difficulty in planning these things ahead, even when you have a live donor. It's best to get all of the questions out there now. I am sure they will be glad to answer for you.

Blessings to you, and keep us informed.

Heather

The day after surgery, they will start weighing you to make sure that the kidney isn't failing. You will have lots of tubes in strange places that will gradually be taken out. They take your temp and do labs. Other than that, it is pretty much the usual post surgery routine. I was in the hospital three days and after I got home I was out shopping for a new tractor within a week. You will feel better than you have ever felt in your whole life! But you will tire easily and will need a lot of rest for awhile.

I had to take and record my temp and check the amount of urine output for awhile. I also had labs done a few times a week then it tapered off to once a month for the first year. The labs results not only indicates your kidney function but checks the level of the immunosuppressants to make sure that you are receiving the proper dosage. After the first year, my labs are done twice a year and a visit to the neph is twice a year as well.

I was only back to the transplant center once then went back to my local nephrologist group. But instead of being cared for by my pre-transplant nephrologist, I was assigned to the post transplant nephrologist.

When I had my transplant six years ago, I was on lots of meds and had to rigorously follow a schedule. The meds eventually tapered off and now I take just a few. I don't know how they do it now cause they are using different meds.

I take my meds regularly - this is a must! I am fanatic about keeping myself away from germs. I carry hand sanitizer and wipes and use them everywhere I go. I keep away from groups of children and am extra careful when around the younger relatives. I try to keep a healthy weight though it is often a losing battle. I keep active. I welcome each new day that I am alive to enjoy. So that is my drill :-)

thanks everybody!

This information has helped me enormously, I am meeting my donor and surgeon in a few weeks and will hopefully set a date. This information is worth its weight in gold, I had no idea what to plan on as far as work or daily routine or getitng family and friends to help out, Ican at least start planning with some certainty thanks to you guys. God bless!!

Viking Dude,
One thing I found incredibly helpful was to bring my husband along to ALL of my appointments, no matter how trivial they seemed to be (that included the GYN appointments and mammograms, even though he sat in the waiting room for those). We kept a big notebook and put all our questions and comments in the same notebook and at the end of each day, compiled a list of questions to ask each and every specialist as well as my transplant coordinator and the hepatologist and nephrologist (dual transplant; multiple doctors). By having my husband there, he heard many comments that I simply didn't catch; my emotions were in full swing and everyting I heard was through an emotional filter whereas he was able to filer out some of the emotion and hear the words (the emotions came later once he came to understand what all the words meant). IF need be, take along a tape recorder and record the sessions so you don's miss anyting. You're going to be getting a firehose treatment; there is so much to learn in a very short period of time and you want to be able to absorb it all and ask intellligent questions afterwards. There is no such thing as a stupid questions, just the one that isn't asked. So never hesitate to ask a question!

You and your donor should have different coordinators so there is absolutely no conflict of interest (your donor should also go through some independent counseling and evaluation to ensure there is no perception of pressure or coercion being applied for him/her to donate a kidney). This is perfectly normal and not meant to cast dispersions on you. The tranplant team just wants to be sure your donor knows what he/she is doing and is doing it in good faith with no expectation of any benefits other than the knowledge of savings another person's life.

Among the many poeple you'll meet should be a renal social worker who help you work through through the resources available for both you and your donor (e.g. you will be eligible for social security disabilty for a year following your transplant; you'll need to apply but it's basically an automatic approval process due to the very realistic expectation that the first year post transplant is the most difficult time and adjusting to the new organ puts you at a greater risk for catching other illnesses and decreases your employability options). You can apply pre-emptively and social security will keep your application on file and process it as soon as they receive notification of your transplant; it just expedites the process. You should also meet a transplant financial coordinator, whose purpose is to make the finacial process a breeze and expedite the process of getting all the approvals you and your donor need from your insurance company and Medicare. By law you insurance should pay for the costs for your donor testing and surgery as well as the costs for you and your donor's recovery and any donor-related post surgical complications (rare).

Keep copies of absolutely everyting you receive. It will be a bevvy of information, notes, pamphlets, files, test results, imaging studies, etc. You need all of this to keep all of your records straight and ensure you have all the tests needed to ensure there are no last minute holds on your transplant. Keep a calendar with everyting you need to do, when all your appointments are and when you're tests are completed. You will need to have tissue typing done at least once per month before the transplant and I believe your donor will need the same testing as well.

You can not pay your donor for giving you the gift of life, but many recipients often chose a token gift as a thank you for such an incredible donation. You know your donor best. A donation in their name to their favorite charity, a piece of jewelry in the shape of a kidney, a month of homemade meals or house cleaning services to they don't need to worry about that while they're recovering are all appropriate. Just don't make it cash; that violates the spirit of the law. A heartfelt letter of thanks if always welcome and generally means the most to the donor and their family...no token of appreciation can substitute for the sheer emotions put down on paper. TRIO and your local organ procurement organization (you can find them via www.unos.org) can help you decide on some appropriate tokens of appreciation as well as how to get involved in spreading the word about organ donation and honoring your living donor through events held int he community at least on an annual basis (donor sabbaticals, dinners, etc.).

This is a brave new world and you're very fortunate to have a living donor. I wish you both the very best. Please keep us posted on how you're both doing!

Gentle hugs and best wishes,
Ruth

Congratulation, Dude!

All the responses are dead on!

Be prepared for short term emotional changes.
You will be monitoring yourself for "output" for some months.
You may experience physical and emotional "ups and downs" as you and your body get accustomed to the new routine of meds and measurement.
There may be some effects from the meds as the right dosage is established for YOU over the first months. It takes a bit of time to establish the right balance for you. That's why you are monitored so closely!

I've had my transplant since 1998, and I have been on the same meds since 2000.

Best of luck!

CoachRichie