So disappointed

[DanCars]

I've been on dialysis for about 5 1/2 years; first PD, and HD for the past 4 years. About 2 years ago, my friend got tested and was a 7/10 match and all was going really well, up until the end of 2018. In December 2018, I had an abnormal PAP and went for colposcopy. In January, I saw the OBGYN and was advised that I had pre-cancerous cells in my uterus. She said I could wait and get re-tested in 6 months or have a hysterectomy. Amazingly, knowing my circumstances, the doctor was able to do my surgery before the end of February and I'd received the go-ahead, for transplant, by mid-April. Now, since then, it has been absolutely disappointing and frustrating, beyond belief. At the end of 2018, my living donor was very close to final approval but now, since then, has had to have several more tests - because the time period had expired since her first round of tests. My transplant nurse has been on leave, since November/December and has not been replaced. There is nobody for me to contact and, as far as I can tell, there has been nobody on that end, trying to get my file ready for final approval and transplant. Five weeks ago, my living donor failed her 24 hour blood pressure "test" . They sent her again and we found out, today, that she has been refused as a potential donor because her blood pressure was reading too high on her second 24 hour blood pressure test. Two and a half years spent waiting for my transplant and right back to square one! Not only that, but I only found out, this afternoon, that I've not even been active on the transplant list during all this time because I supposedly had a live donor. I was just reactivated today, on the cadaveric transplant list. I'm O+ so my wait will be longer than most. I have so many blessings in my life and I try to stay positive but, I have to admit that it's getting harder to keep a positive attitude. I found out, in May, that my daughter is pregnant and expecting in January. I'm so excited but scared, too, that, at 46 years old, my life expectancy isn't looking so great and I may not be around that long, in my grandchild's life - or that I may not be well enough to enjoy it. I don't usually allow these fears and pessimistic outlook but, after the disappointing news this afternoon, I'm finding it even more difficult to keep up the optimism and positive attitude. I don't feel able to share these things with my family and friends, so I decided this was probably the best place to do so. Any advice or kind words are welcome 😔

[younglion88]

Man i hate that happened but stay encouraged and keep hope never give up i too am on dialysis for almost 6 years now since i was 25 years old i did pd for 4 years before going in center hemo i just try to stay encouraged and keep others encouraged as well i understand the helpless feeling but dont give up God bless you

[openitnow22]

why did you go from PD to in center thought pd was better

[KandRS519]

Hope everything worked out. Have you gotten your transplant?

[lymle85]

Shoot I have something similar, I?m in active on the transplant list because in beginning of this year I went to hospital and they check blood circulation in my feet and now two of my toe is dead and my other feet my heel is aLso having problem I won?t be active again till I remove them... but I?m scare n I don?t want them remove.... 😞

[lymle85]

Shoot I have something similar, I?m in active on the transplant list because in beginning of this year I went to hospital and they check blood circulation in my feet and now two of my toe is dead and my other feet my heel is aLso having problem I won?t be active again till I remove them... but I?m scare n I don?t want them remove.... 😞 been on since 17? my blood type should be able to receive transplant in 5 year now because of this I?ll have to wait longer... life is so in fair... just end it for me

[Haibara23]

Have you had a transplant yet? I hope everything works out. I also have a friend who is in the same situation as you, fnf hope she gets over it soon