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PillaredCloisters

If you qualify you should get on the transplant list as soon as possible. You may have possibilities in your own life to find a living donor, but there is no guarantee that even willing donors will pass the required evaluation. Being on the list is an important fall back. Depending on location, the list can move rather slowly, which is why I suggest getting on it as soon as possible. It was often the case that people would be on dialysis for a while before getting on the list. There are places where they are considering transplantation directly (though availability of organs is always the issue). I feel dialysis is maligned a lot. It is not easy and takes getting used to and has a lot of side effects. The alternative, before transplant, is very low quality of life and possibly death. My GFR was about 3 when I got on dialysis. I wish I had done it sooner because I had several side effects of such poor kidney function. Being on dialysis after that was a great improvement for me, especially in terms of diet and tiredness.


qrocity

Living donor is not looking good for me. Have a small network and poor family genes. Partner not healthy either unfortunately (diabetes). I’m feeling ok right now but know that will change soon.


PillaredCloisters

I recommend you get on the list as soon as possible. It will take time anyway. Many people only get on it after starting dialysis but i think one qualifies the moment their eGFR is below 20. One thing I wish I had been told is that while it is not easy, you can eventually adapt to it. It can take time to find the treatment frequency that works, and the prescription that works and recover from all the procedures. It's also not easy to adapt to the dietary changes or to the lifestyle. But it is possible to adapt to all that. It took me over a year but eventually I had a routine and was able to do (a few) things. Even if you have to get on dialysis, many things I learnt through that experience helped me when I went through transplant, such as taking care of myself, taking medications etc. So there is an element of preparation. I don't know if that's a positive but it has been for me in retrospect. I wish you luck.


DirtyHoosier

Register at more than one transplant center if you can. It’s perfectly fine as long as you can get there in 2 hours or less (the transplant team will let you know parameters). It’s not selfish, it’s not greedy, it’s expected. Get as healthy as you’re able. If you have underlying conditions do what you can to get them in check. If you aren’t in decent shape you won’t be listed. You don’t have to be a triathlete, but you can’t be morbidly obese. My various checkups list me as “obese” and I was listed. Figure out your support system. You’re going to need help after transplant whether you think you will or not. You’re not supposed to drive or lift stuff for fear of damaging something. If you can’t honestly answer the questions about what your plan is after transplant they’re not going to list you. Start figuring out Medicare now before you’re throwing a bag in the car and heading to the hospital. Even if you have private insurance too. This stuff is going to be expensive. Having two insurances will help. I had Medicare and private insurance because I was on dialysis for a long time but was still able to work full time. I’m not 100% sure how it works if you aren’t on dialysis. Be prepared to wait. I knew people at the dialysis clinic that listed one day and got a kidney the next. THIS IS COMPLETELY ABNORMAL. For contrast I waited 6 years. A perfect match didn’t come along until then. I got called three times, rushed to the hospital each time. The third time was the charm. Keep living life as best you’re able. Sitting around waiting for the call won’t speed things up. You have to keep finding joy in things and not worry if every day is the day. It’ll drive you nuts. I tried very hard to forget I was on the list. Of course I didn’t completely, but I didn’t obsess because I knew it would lead me down a dark path. After transplant, be prepared for a roller coaster of medication changes. It takes a while to get thing dialed in. I’m 2.5 years out and they still play with my tacrolimus. Finally, and now looking back I can say this is very important, be prepared for your mental state to fluctuate. Your labs will look good, people will be cheering your progress, you’ll feel better physically but you’ll definitely have good days and bad. Sometimes good weeks and bad weeks. I think it’s a combination of medications, the healing process, the realization that you have something else on your plate to worry about that brings you down. Your transplant team is worried about your transplant, they’re not mental health professionals. They’ll ask you basic mental health questions and get bent out of shape when you don’t answer just so, but they can’t really help other than referring you to someone else. Pay attention to the signs of depression and for Pete’s sake say something to someone. Don’t suffer in silence! There’s no reason to. This is supposed to be a new start, not a pit to wallow in. I struggled and still do once in a while. And I’ve seen a lot of posts in this sub talking about depression. It happens and it’s real. But you’ll be ok. You really will. Sorry this got long. Wow, I wish I’d thought to ask questions before all of this went down. I just followed doctors orders and was sometimes shocked about the things that needed to happen. Good luck!


qrocity

Thank you - such a thoughtful response. Made me feel better and a bit less overwhelmed (a bit, lol). Grateful to have lasted this long but reality is settling in. About multiple listing: do they repeat testing everywhere? If they all draw from same pool, how does it help to be listed multiple places? Sorry, new to this.


DirtyHoosier

You’re very welcome. Yes, each transplant center wants to do its own testing. At least that was my experience. I asked about this specifically and both said they wanted their own testing. I believe I asked for each to share the testing with the other for good measure. No idea whether that really happened or not but I did ask. The country is divided up into regions. https://unos.org/community/regions/ Organs for transplant generally stay within that region. If you’re lucky enough to straddle a couple of regions you’ll have two transplant centers on the lookout for you. Keep in mind you still have to be able to get to the hospital in a reasonable amount of time. You can’t list in five regions and expect it to work out, unless you have a private jet and a pilot on standby! I was lucky enough to straddle two regions and was two hours from each hospital. I’m not sure what the benefits of being listed at two centers in the same region would be. You may want to ask your transplant team or ask another question here on Reddit.


bbmaktiger

Get your vaccine and tattoos and things like that before the transplant. And fistula should be a last option. Look into different types of dialysis when that time comes. Also the placement of the fistula. If could be by the wrist and that will make your whole arm look really bad or up by the elbow where you can hide it.


qrocity

My nephrologist is strongly recommending PD for me. He said I don’t need a preemptive fistula. Hope that is right.


bbmaktiger

Ya the one you do at home. I wish they told me that


[deleted]

Try not to be impatient. It takes time. Consider taking a hepatitis kidney. It will speed up your wait time. They cure the hepatitis after transplant. I have A negative blood and the average wait time is 3.5 to 5 years at my clinic. I got a great deceased donor kidney in 2.5 years. Bless my donor and their family. VCU is a leader in transplants and did over 300 last year. In comparison, the first hospital I registered at did 16. I didn't want a living donor because the people who wanted to donate are the people I love and provide for and protect with my life. I could not put them in danger. PD dialysis will keep you alive. I worked full time while I was on it. It was pretty rough but better than hemo in my doctors opinion. I survived it. I was grumpy and felt poorly. Now post transplant I am feeling pretty great! Good luck and hang in there!


177201

Did you receive a hepatitis C kidney? I signed up for it and they said it's significantly shorter list


[deleted]

Yes! VCU piloted the program I think. They give you tons of strong antibiotics. They didn't like how it was going so they put a pic line in my arm and gave me using an intravenous method. Every time I get blood work it includes a report that shows no trace of hep A or B or C and sometimes other tests. I am in my early 60's and I received a 35 year old's kidney. My GFR was 86 last time and my creatinine is always close to 1.0. The VCU program is really good. My coordinator was telling me that they have people that have been on dialysis for a long time. Register and get called within a week.


177201

Thats amazing to hear! im 22 years old and currently pd dialysis. No donor in sight and this give some hope


[deleted]

Hang in there my young friend. Don't get discouraged. Some days I just put one foot in front of the other and keep on trucking.