New on transplant list.

[6V53]

After years of slowly decreasing kidney function, I was recently listed for kidney transplant.

[Cap21_NKF Partner]

Once placed on a transplant waitlist it can take an average of about 5 years to find a match. If you are not already on dialysis, consult with your GP about seeing if that treatment option is suitable for you while you wait for a transplant.

[6V53 in reply to Cap21_NKF]

I have a regular nephrologist who is tracking me. I've been fighting this thing for 26 years. I also have a rare blood type (B-) so I'm expecting a longer than normal wait (unless one of my live donors pans out). I take tons of meds and do my best to follow my diet.

My question is: does everyone feel the fatigue and misery that I do? I can't work a full week anymore. I also have difficulty with energy for recreation. I'm trying not to be a couch potato, but I can't handle a lot of activity.

[alanteague in reply to 6V53]

Yes finances and social life are affected. Try other avenues of social life that are healthy and cost free if possible. I joined dog walking group, beach walks,chess groups, volunteer at places with card playing, playi g music etc. I was told four year wait list but got very lucky and only waited eight months. Deepak Chopra 21 days of abundance free online worked for me. I hope you find your way.

[JackN in reply to 6V53]

I have the same blood type and waited 3 years, 9 months which is below average. I don't think your blood type should hinder you. You should check average wait times at various facilities in your area and note that you can be listed in more than one place. Good luck!

[6V53 in reply to JackN]

Good ideas. I am listed at 2, but I live in remote Alaska and Seattle is the only center close enough to get to in time for a deceased donor transplant. The air ambulance could only guaruntee 8 hours and the center 6 hours or less to list active.

Live donor is still a viable option at either center because it can be scheduled.

[JackN in reply to 6V53]

Wow, that's tough. Anchorage doesn't have a center? 8 hours is fine, I ended waiting an extra 12 hours or so because a bunch of livers came in and livers don't last as long.

[6V53 in reply to JackN]

No, Seattle is the closest. I can make to Seattle in a about 5 hours on commercial, if everything goes my way. If I get called at just the wrong time, our local puddle jumper will be shut down for the night and I would probably have to pass on the opportunity.

I expect that like most things, if I did make it in 6 hours to the other center, when I got there, there would be a wait anyway. That seems to just be the way things are. I understand not wanting to wait for me from so far away if there are others closer that would have a better chance of a successful transplant.

I once had to wait 14 hours for a medivac due to weather and our only road in has been blocked by avalanches multiple times in the last 2 weeks. Two Summers ago, we were trapped by a forest fire that blocked the only road and made flying hazardous. So, we roll with the punches and do what we can.

[JackN in reply to 6V53]

Wow - well, if you miss an opportunity another will come along soon. My first one wasn't viable, my second one came when I was on the NY Subway (I live in Boston) and the donor had hep C (this was prior to the new treatment) so I turned it down and got the call again about three weeks later.

[larrymontague826]

I also experienced extreme fatigue. When your hemoglobin gets below 8 or so you have no energy. Mine was so low that it got to affecting my mental status. Once I got on dialysis and my transplant that all improved dramatically. Good luck I hope this helps you some.

[WYOAnne NKF Ambassador]

Have you had your blood count checked lately? You could be anemic and that's the cause of your fatigue. All anemia is also not caused by iron deficiency. When I was on the transplant list I was getting weekly injections of "Procrit". It built up my RBC.Talk to your nephrologist and see what he has to say about your fatigue.

[TeacherMommy in reply to WYOAnne]

I agree with Anne. Epoetin injections have been amazing and have helped me keep working while on the transplant list (I have taken it in the forms of Aranesp, procrit, and retacrit). When very anemic, it has been hard to have a positive outlook because I have just been too tired, which has then led to more worry. We keep a close eye on my hemoglobin numbers and when I have been able to keep the anemia at bay with the injections everything has seemed easier. It is worth checking out in my opinion. Good luck!

[DoylerOz]

Hi. I have a transplant of 27 years but am now at stage 5. I am experiencing the same fatigue. I feel so weak in the mornings. By mid afternoon I feel a good bit better. I am seeing my nephrologist next week and going to have a long chat.

Sending much love xxx