So today I took the first step for getting on the kidney transplant list. I attended a series of meetings. The first meeting was with a transplant coordinator, then with a social worker, then I met with a transplant surgeon and finally with a kidney dietician.
It is so surreal for me. I was diagnosed with kidney failure in June and as I sat there I still can’t believe that it’s all happening to me.
So much information to take in.
Does anyone have any tips or advise on what I can do to be physically or mentally prepared for transplant?
Or can you share your memories or feelings about when you went through your transplant consultation?
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Socky
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I recently was transplanted and would be happy to talk to you about my experience of the process! It's definitely a surreal experience and I'm excited for you that you've embarked on becoming listed!
In short, getting your bag packed for "the call" can be a great first step once you are listed. Keeping active and staying with your prescribed diet will keep you healthy and active on the list. It will also make post transplant smoother, since your body will be in a healthier state and will be in a better position to heal.
I remember being overwhelmed at my evaluation. My brain went to mush and i couldn't follow everything they were saying. Your coordinator should have either given you or will be sending you your transplant manual. Reading it every so often will keep you fresh in what to expect and can help to ease your nerves since everything you need to know will be in the packet.
Keeping an updated list of contacts, medications with dosages, when and how you take them and insurance information is important as well. It goes in your go bag! Keeping a day of your meds in your go bag, and a snack that is none-perishable if needed can also give you a leg up when the time comes since you won't have to pack it in a hurry. Of course with that, making sure those meds and snack isn't expired!
If there's anything you'd like to know outside of this little blurb, feel free to message me! I'm excited for you and this will be a worthwhile journey!
It is a lot! Reading it in small chunks might help you absorb things easier. I know for me, I wasn't familiar with the manual until about 3-4 weeks after i started reading it. It may seem daunting now, but as you go through everything and asking questions it'll become more manageable and you'll become a pro at what to expect. Keeping a running list of questions is what helped me through. I read through it the first time and wrote down every little thing I could think of and I called my coodinator the next day and bombarded her with said questions. By the end my manual was grey/black from all the clarifications and notes! These did me a lot of favors during post transplant training when I was doped up on pain meds and stressed to the max!
I think it's great that your getting on the list, I received my transplant a year and a half a go and things are going great, the best advice I can give you is to stay active, watch your diet and for heaven's sake don't miss any dialysis treatments, people don't know how important it is to go and to stay your entire treatment time, and lastly while you wait on that call from the hospital with your new kidney don't get discouraged and lose heart because it's coming, wake up every morning expecting your phone to ring as a matter of fact say it every morning that my phone will ring today, expectation brings actions. I'm pulling for you Socky & please post it when you get that kidney GOD BLESS YOU.
It is exciting going through the evaluation in thinking things will be so much better when I get off dialysis{ was on for 2/12 yrs}, Then when I got the call, It was scary thinking about the surgery. Almost 7 yrs ago I recieved a transplant and all is good. after transplant there will be some bumps, especially with medications, but well worth it. GOOD LUCK !!
Oh Socky I am so excited for you! Being listed is a very good first step! In addition to what the others have said I want to tell you to keep thinking positive. I was listed at two hospitals and waited for two years. Take your phone every place you go because you will worry about missing the call. Be excited about getting a new kidney—it’s truly something to celebrate! Welcome to the club!!!
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