I learned from my transplant coordinator on December 23 that my transplant hospital is now going to require that I get reevaluated every YEAR (instead of every two years) since I am now 6 years on the Wait List and getting closer to a possible transplant. It confuses me because even the nephrologist says that in Georgia, an O+ patient has about a 10 year wait on the waitlist.
I’m asking in this group because you guys have been transplanted and perhaps many of you were on the Wait List instead of getting a live donor and I want to get your feedback on whether this seems normal to have to do yearly reevaluations.
I personally believe that the requirement for a yearly reevaluation is predicated on the fact that I am now 66 years old and not that I am close to being transplanted (which according to the nephrologist would be 4 more years from now).
Your thoughts and comments will be appreciated.
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TaffyTwoshoes27
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Although I received a kidney from a living donor, I know that my Transplant Center required yearly evaluations regardless of age. Maybe your Transplant Center is simply changing their protocols. Keep strong!
I find my hope and patience with my Transplant Team waning. I am alone and with Covid, hanging on by my fingernails while I stay alone (thank the Lord for my cat!) at home 95% if my days. It takes all my mental and physical strength to hang on!
Merry Christmas to you! Waiting is so challenging and patience is equally challenging. I wish you the best and hope that you will get your kidney soon.
I was on the waitlist for 9 years and I am O+. I have a friend who is also O+ and was on the waitlist for only 11 months. There are a lot of factors that go into getting an organ, blood type is just one of them. If you have a great HLA match, someone else is in the hospital or has antibodies to the donor, that can bump you up the list pretty quickly. Transplant is just making sure they are prepared if you get bumped up on the list.
Hi! The one year evaluation is normal. In our case, we even had to supply quarterly labs and updates. Since you're 66 years old, your center will likely offer you a kidney with conditions - kidneys from older donors, from an overdose victim, etc. These kidneys can come up very quickly for transplant. Having up-to-date info on the patient means less for the center to do to you when you show up after you receive the call. And less likely for you to be rejected at the operating room door. From the start of dialysis to transplant took exactly one year for my hubby. He received his kidney at age 71. By the way, we, too, were given a much longer wait time so we were unprepared when we received the call - keeping a small overnight bag packed and ready to go is a good thing to do no matter what happens. Sending encouragement - a bright tomorrow awaits you!
Thank you for your reply. I'm a little more at ease now with the new "yearly evaluation" rule my transplant facility recently sprung on me after all of the feedback here indicating that I must be reevaluated yearly.
However, I have been on the wait list in the Atlanta area since 2015. This year will be 7 years. I think that's excessive (since I am quite healthy, active and have great labs at my dialysis clinic) and I was originally told 3-4 years to transplant when I started Dialysis in 2016. Around the time that I started Dialysis in 2016, UNOS in the Georgia area (at least) changed it's protocol and allowed people that had been on dialysis longer to jump up higher on the wait list if they had not been evaluated for transplant due to issues with their BMI, A1C or other health problems. Once they were evaluated and passed the evaluation, they jumped up higher on the list and passed everyone else. That's a continual process and the wait list is actually a fluid list and not a List consisting of 1, 2, 3, etc.
I was also disappointed recently to learn that in 2018 (according to documentation I found while filing) indicating my PRA was "0". Now, my transplant facility says they are using a more stringent algorithm and my PRA is now 72.
Also addressing your comment about accepting an older kidney, I am signed up and have been for the KDPI initiative since 2015 to accept a kidney from an older patient. I even had signed up to be a test subject for the Hep C+ drug, "Epclusa", but my transplant facility dropped the study (the day after Xmas 2019) after I was completely approved for the study (which meant TWO complete evaluations for transplant in 2019).
It is difficult for me to stay hopeful and positive when new information or rules continue to have been negatively introduced to me this year. I try my best to stay mentally healthy as I talk to a psychologist on a regular basis.
I do not have any other resources of assistance to get evaluated in a city outside of Atlanta and in a different region. That, to me, is very disheartening and depressing. But, still I soldier on and leave it in God's hands.
I can definitely understand your disappointment when you have spent so many years on dialysis and on the waitlist. It does seem very bleak, but I surely hope that where there's a will, there's a way. You're right - many stumbling blocks can get in the way. Thankfully, your PRA is still under 80% so that does keep the door open. And it's wonderful that you've agreed to a kidney transplant with conditions. That definitely works in your favor, too. I'm not sure which transplant center you are with in Atlanta; apparently there are more than one with Emory seemingly being the leading center there. Perhaps a change or addition of a center in your city would work out well, if that fits within your interests and parameters. My hubby was listed at two centers and his primary center willingly shared lab reports with the other so that was nice. Interestingly, both were in the same region. I've placed a website link at the bottom of this post regarding outcomes of the various centers in Atlanta and throughout the US that you and others may find useful. Like you, I find the entire transplant process to be complex and mysterious. Keep on keeping on, warrior! You've come this far, please don't stop now. This community cares about you as much as I do. So please stay in touch. Hugs!
I initially evaluated at Emory University (a 3 day process) but in 2015, they were having problems with their personnel and communications with evaluating patients. After I asked my nephrologist to refer me to his preferred transplant hospital, Piedmont, in Atlanta, I transferred to it.
There are three transplant hospitals in Georgia. There are quite a few people on the transplant list. In fact, Piedmont Hospital said they are in the process of evaluating or have waitlisted about 1300 kidney patients alone. I have also been told by Piedmont's transplant social worker that listing at Emory and Piedmont will not increase my chances of getting transplanted as they are only 15 or so miles from each other in the Atlanta area.
I became friends with someone that listed with Emory after the 2015 personnel issues, and she said that it had improved when they did a house cleaning of personnel and hired new staff. Unfortunately, she died while waiting on the Emory waitlist.
It seems an odd coincidence to me that the Internist that reviewed my blood results in 2012 and completely overlooked my GFR of 25 was educated at Emory University Medical School. When I first saw her in 2005, she noticed my blood pressure was high and did not inform me that high BP could result in diminished kidney function nor did she prescribe BP medication. It was just by coincidence that I happened to see her again in 2012 at a different facility.
Thanks again for your kind words and encouragement. It is a very frustrating and overwhelming challenge day after day. As I said, I guess that it is in God's hands and I pray daily.
My transplant center requires monthly labs and annual appointments with some retesting. The retesting is based in part on underlying medical conditions. For me in addition to breast exams and PAP smears (I would no longer be getting PAPs done annually at my age of 68 but the transplant center has been requiring them), they also require cardiac tests (EKG, stress test and imaging) and vessel imaging in my pelvis area.
I have a new case manager so am hoping we can get the pelvis imaging done while at the transplant center the end of March. Possibly the PAP and breast exam too. That would leave me the cardiac testing which I was able to schedule all on one day this past May…It sure helps when I can get this all done with fewer trips since I’m still working.
BTW if they decide to move me from active to inactive status due to the improvement in my renal function, my nurse case manager told me I’d still have to get labs run monthly and the annual tests with the annual appointment. So, nothing would really change with this routine if they move me from active yo inactive status.
Jayhawker
You should know my answer is"bull". These Transplant people play with lives. Do you think my Nephrologist is thinking about me or any of her charges this Holiday Season? Well, NO!! The older I become, the worse the care is. Nephrology disconnected their after hours emergency number and took down the patient portal so I cannot ask a question or as such. I think I mentioned this before, but at 59 my Nephrologist told me I can choose death and she would not stand in my way unless I was in my twenties. I don't know when everything became so difficult. Kiss your cat and don't give up. 👍
I agree about the lack of real empathy for their patients at the dialysis clinic. I ask questions that they don't even know the answer to! When my diastolic was going up, I asked my nephrologist what could be the cause. She didn't know. Thankfully, my cardiologist is a very kind man and he said it was due to water retention. I was prescribed carvedilol and he said take it anytime my diastolic got over 90. I do home PD and what I started doing is taking my blood pressure before I got off the machine and sometimes I do two or three STAT drains and then it comes down. My cardiologist has even prayed for me at the end of our telehealth or in-person appointments. He's a great guy!
Wow. I don't have one of those Doctors. I do have my friend Chris, of whom, earned his PHD and is now an MD. My other friend got her PHD this year in Eastern medicine and is now a Doctor of eastern medicine. I think about you a lot and am always sending good Karma your way. Get on instagram. They have Cats of Instagram. I resisted when someone told me to get on there, because I think that stuff is a time buster. I did anyway. The pictures of cats are really relaxing.Let me know if you do and I can send you my information. Husband and I are sick with something. Somehow, I got it first and he was next. I really hope we can stay out of the hospital for once at the cusp of the New Year. 🐈
Thanks for the kind thoughts. I am humbled that you would think of me.
I do have an Instagram account that I made years ago. I don't get on it very often. It is under the same handle as I use here on health unlocked ("mhusband27"). I'll get on it today and see if I can see some cute cat photos and waste my time since I'll be alone with the cat on New Year's Eve! At least she can't drink champagne either! Lol.
I hope you and your hubby feel better (btw: my last name is really "Husband". Weird....I know!).
Oh, BTW, re: your doctor’s ofc taking down their portal: late in 2021, my cardiologist office changed their telehealth software as well as tweaked some other software for their firm. They weren’t able to do telehealth for a few weeks while their staff was trained. Maybe that’s what’s happening in your case? Everything has to be so HIPAA compliant and secure that many doctors aren’t coughing up the money to do upgrades.Well….here’s to a better year! Happy 2022! 👍🙂
Hello,I was on the transplant list for five and a half years. With my blood type I was told the wait would be 7 years . My transplant clinic also required yearly evaluations. Good Luck hope your transplant happens soon! Happy New Year!
I'm on the other side, of the Pond, to you so I can't really comment- except to suggest that, just maybe, you ARE Closer to a Transplant than you think. I was Transplanted after Four Years, of Hemo-Dialysis, which is 'about right' over here.... that was in July 2013, a while back now. Blood results seem 'Fairly Stable', total Kidney Function about 45-50% with just one kidney (some Tests have said 35% still Not Bad).
Can you maybe 'Speak' to one, of your 'own', Consultants about this- COVIC notwithstanding? As I said I can't really comment further Mhusband27- other than 'Good Luck' and...
Mhusband 27 where I live it is every year , I have to get labs every month they told me cause I’m not on dialysis yet. My kidney function is like 12 percent .they said if I was on dialysis they would just get it from the dialysis center the labs they need . I had one offer but that when I found out I had high antibodies so it would not work for me my PRA is 80 at first it was 78 they told me it could go up different. reason but this is going to make me harder to match . I understand the age thing I am 65 and my transplant center has an age limit which is 71 not a day older and they don’t want living donors over 65 I don’t do a lot of social media but I have friends that do so I ask them if they will post my story on there Facebook page and they have and if you belong to a church ask them to post a story about you needing a kidney to their Facebook page this will help in looking for a living donor while you are waitlisted on the National list my prayers are with you
Thank you for your reply Beachgirl!I pray and try to stay positive, but these last 2 yrs (as I am sure everyone can relate) have been lonely b/c of social distancing.
I do belong to a church but have not been able to attend in-Church gatherings b/c most of the members in my church are quite conservative and have taken a cavalier attitude about mask wearing and identifying those who are vaccinated or not. It's sort of like a "don't ask, don't tell" environment.
I asked the Church secretary, who posts emails constantly for prayer for people with needs, if she would post about an upcoming procedure I was having, but she never did. When I questioned her about it, she said she would be glad to pray with me and talk to me anytime but never gave a reason why she does not post my prayer requests. It hurts my feelings because she will post about members' extended family that have never even attended that church, but she will not post about my need for a kidney. I've had lunch with her and helped her through her hip replacement surgery. I do not know the issue at all. I must add that I was not a member of the church very long, approximately 3 years, before the lockdown for covid. I was contributing monetarily, but later decided to do charitable contributions to the American Kidney Fund and other religious organizations.
Even my current transplant helper, who is in great health at 79 years old and a member of the church for a long time, is tired of wearing masks and has an attitude of that this virus is not going to stop her from shopping five grocery stores a few times a week plus multiple thrift shops at least one day a week. She has a daughter with eight children and that family refuses to get vaccinated.
I finally was able to kindly and gingerly tell her that her health and my ability to get transplanted are very intertwined. I told her that if she were exposed to covid, my Transplant Hospital would turn me away if I were called for transplant b/c she tested positive for the virus. She was kind enough to ask her granddaughter, who lives with her with her baby and husband, if she would be willing to help me if that scenario arose. The granddaughter was very kind and offering her assistance if necessary.
I too have to do monthly labs -- through my dialysis facility (one vial goes to the Transplant Team) -- and then have an appointment with the nephrologist assigned to the dialysis clinic for a checkup after the lab results. I have demanded to continue doing the nephrology appointment virtually, although one of the clinic staff told me that most people are coming to their nephrology appts. I don't know if that has changed somewhat since the omicron variant has spread so quickly, but in a way, they have tried to shame me into coming into the clinic when the office is a 35 mile round trip and I feel that I am healthy enough and in good enough shape according to my labs not to need constant face-to-face meetings with the nephrology team.
Anyway, I'm doing my best under the circumstances. It's still a challenge to constantly eat food and then have the nutrients dialyzed out of my system. I feel like I rent food!
I can certainly empathize with your age and antibody issues. Imagine my shock and dismay when I was told in 2020 that my antibodies were zero and then not even a year later was told that my PRA is 72. It sort of took the wind out of my sails and I'm still recovering.
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