PTE Secondary after kidney Transplant Experiences

@l0lag0lag0b3, am I understanding correctly that you have post-transplant erythrocytosis (PTE) and for this reason you may have a nephrectomy of your native kidneys? Or it may be possible to treat with ACE inhibitors (angiotensin converting enzyme inhibitors) and ARBs (angiotensin-receptor blockers)? Do I have that right?

Yes Colleen, I do have PTE secondary, the issue is that ARB/ACEI are not able to suppress the EPO, consequence is that the RBC count is not decreasing - which causes the blood to become thick and ultimately resulting in blood clots & possibly a cardiac event. Typically the EPO should be under control in 12 - 18 months ( the GFR has been in upper 70s all the while) but I have not been fortunate with reduction of RBC count . The other alternative is to have phlebotomy done every so often.. problem is that every time you get phlebotomy done the Iron panel parameters drop down drastically. ( I have had phlebotomy done once 500mL but that just lasted for 3 months)

Reason I am looking for experiences in nephrectomy is: There is a debate whether native kidneys nephrectomy should be done before or after the Kidney transplant ... I am interested post kidney transplant - native kidneys nephrectomy experiences.
Regards

Thanks for explaining. I think you might be interested in these related discussions by @stephanierp and @jolinda

- PKD Transplants: Did you remove your second kidney? https://connect.mayoclinic.org/discussion/pkd-transplants-did-you-remove-your-second-kidney/
- PKD kidneys removed at time of transplant https://connect.mayoclinic.org/discussion/pkd-kidneys-removed-at-time-of-transplant/

Thanks Colleen for the references, Found @stephanierp initiated blog useful, it gave me hope for post transplant removal of Native kidneys. Can you share logistics for a dialogue with coordinators of Dr Prieto. team.

@l0lag0lag0b3, Dr Preito and team are part of the Kidney Transplant Program at Mayo Rochester. Here is a link to the Kidney Transplant program. You will see "Contact Us With Questions" on the 1st page.
https://www.mayoclinic.org/departments-centers/kidney-transplant/home/orc-20203197

Hello to all my Friends

After 3 years of struggle with PTE secondary, I finally have a taste of success !

I must have read at least 30-35 case studies on this issue world wide & at one point I began to think that I am refractory to the treatment of ARBs... almost gave up.

Finally with lot of analysis and self reflection and determination .. I changed my doctor after lot of back & forth with him (Dr) .. he was rigid and not willing to budge...finally going against advice of all people near and dear to me ! I switched to a new doctor in less than 3 months PTE secondary issue for now has been resolved. (Proof of concept has been verified) I will always wonder what was my old Dr's inhibition... ( I want to forget about him real fast)

Now for the first time in 3 years my CBC diff. profiles looks Normal.... yeah I feel extremely positive & this has given me a psychological booster.

Regards to all

Hello, @l0lag0lag0b3, Congratulations !
I am thrilled to learn of your success! You are indeed the master of research and determination for all of the research that you have studied. After your 3 years of struggle with PTE secondary, you deserve your 'Taste of Success'. finally have a taste of success !

Will you share with when you had your nephrectomy? Was it performed at Mayo? What are some physical improvements are you currently experiencing?

@stephanierp and @jolinda - I invite you to meet @l0lag0lag0b3 and to join his celebration.

Thanks Rosemary,
Basically here is the highlights of this episode:
- At start of the issue, first I was recommended to take Slow release iron... no change .. in my view it was a mistake because iron supplements boost RBC count, after 3 months that was discontinued.
- then switched over to 25mg of ARB ... no change
- After 6 months switched over to 2x25 mg of same brand... no change ... It so happens that my sister in law as taking 100mg of the same brand for 6 years no adverse effect on the kidney GFR. I started actively reviewing case studies and the finding were that this brand of ARB does not impact the Kidney function GFR adversely as against some other brands.
- I asked him to move directly to 100mg ... request fell on deaf ears of the Dr
- after 4 months - he agreed to 2x50mg of ARB, 50mg am, other 50mg pm... no change. (Somewhere around this time frame I had Doppler ultrasound of the new graft done for Renal artery Stenosis.and ultrasound of abdomen. all that came out ok.)
- Suddenly I was curious why am/pm of 50mg of ARB ..what is the caveat I read the ARB manufacturer's note that included with the original package .. procured it from th CVS pharmacy, it clearly states take 50mg am and 50 mg pm does not give you full 24 hour coverage. ..but 100mg gives a full coverage for this brand..... Dr still remained adamant- when I showed in the brand note from the pharmacy. ( all case studies reveal the if there is no infection of the old kidneys and if max dose of ARB is not effective switch over to ACEI.
- At this point my kidney function was still holding out good in lower 80s with no infection (bkv/cmv/ebv) to consider a nephrectomy.
- finally I decided to move to another Doctor.( all my folks were upset) .. The new Dr gracefully accepted me. Upon reviewing situation, the new Dr, she said take 2x50mg of ARB of the same brand @ same time 9.30am. ... 3 months later .. here I am in disbelief...
Question - why did the Old Doctor waste my 3 years .. I will be completing 4 years this July. Thinking about this raises my BP, Makes you wonder...
btw:- If you do not watch RBC /HCT/Hb .. it can lead to clot formation.. PTE secondary typically occurs in cases where the graft is performing normally but good % of PTE secondary recipients are susceptible to cardiac events.
Regards