Find live drug-addict donor for preemptive kidney transplant?

News has it that recipients are treated for hepatitis C with 95% curative antiviral. This new approach, FDA-approved(?), expands the pool of both cadaver and living kidney donors, hopefully shorten wait time. Yes?

[Minyminuskidney]

Hi, So UCSD is promoting this. I sat down and asked several doctors if THEY would accept a "high risk" kidney? They all said YES. Ive had so much stress and heartache with dialysis. Ive had one kidney already that failed after 2 years from cellular rejection. Now waiting 6 more years after waiting 4 the first time. California has the LONGEST WAITING LIST. So here is my take. I plan to educate myself to the hilts on hep c kidneys. Im not crazy about going on heavy immunosuppresents then getting hep c antivirals. I want to know about more hep c cases. They explained that there is a high risk donor pool of kidneys. People who are drug addicts are the highest risk, prostitutes, people who have anal sex w men, and people who frequent prostitutes. He said the guy who just got caught who owns the patriots, the billionaire is considered a high risk kidney donor. Its all just really science. I personally don't care if the person was a drug addict. I do care if the kidney has aids or any virus that will kill me. My problem is, my antigen level is at 98% meaning I will only match with 2% of the available donated kidneys that match me! So I must consider widening my donor pool acceptance. I have to go out of state but my Medi-cal wont pay for it. Thats another headache. Im so sick of dialysis and it keeps me from working in my career. Tired of being broke and living on SSDI pittance. I follow a lot of new technology out there such as Miromatrix and the UCSF kidney project. Within 5-7 years, they should be available. 10 to be sure. So if I can just make it that long with a high risk kidney, My chances of avoiding dialysis are great. My advice is for you to do everything in your power to educate yourself about getting the best kidney possible. Ask the transplant center, what your monthly antigens are? Try to calculate where you are on the list. And consider multicasting. at txmultilisting.com

[Hidden in reply to Minyminuskidney]

Minyminuskidney: Thanks a million. I am so lucky to have kind and sharp member in this community to so quickly respond and be so useful. I certainly hope you will get another lasting transplant in no time. Me, my family, my sister who needs kidney are rooting for your success, which you so richly deserve. A quick question, what is antigen level and monthly antigen? Thank you again and again. Jerem

[Balap in reply to Hidden]

%PRA = Panel Reactive antibodies expressed in %

person is not sensitized if he has a PRA of 0%

person with PRA of 80% is highly sensitised

[Hidden in reply to Balap]

Belap: Thank you. Jerem

[Balap in reply to Hidden]

I think his PRA is 98%

[Hidden in reply to Balap]

Correction: Balap, not ..... Sorry. Jerem

[Minyminuskidney in reply to Hidden]

Hi Jeremiah C0! Sorry it took so long to get back to you. I appreciate your reply a million times!! You better believe it! I have my brains but not my body. I do massive research every single day, so that I can get off of this blasted dialysis and get a kidney transplant. I have another caveat with these high antigen levels. Which I mentioned are at 98%. Is it you or your sister who needs the kidney transplant? I just want to dress my message to the correct person. Anyway, please ask me anything you need to because I now am a SME or Subject Matter Expert about transplants and dialysis. Also a little bit knowledgeable about multi listing and going out of state. The only tough part about getting listed out of state is getting insurance to cover the 20% that Medicare doesn't cover. If you are under 65 and NOT on dialysis already, and NOT disabled according to the Social Security Administration (SSA), then you most likely wont get covered for a transplant in another state. Im trying to finaggle every little angle that I can to get covered. Or else it will cost me $12,000. out of pocket which is about the 20% Medicare wont cover. Other states don't take Medi-cal state insurance. Yes the bullshit is REAL. This is why it is so hard to travel out of state while on dialysis. Im referring to travel on hemodialysis in center. Travel is a little bit easier on PD on cycler machine. Unless your on PD dialysis, but then flying with the clycler machine through TSA requires a formal doctors note. Even then in 2009 TSA had never even seen a dialysis machine. They had to X-ray, swipe, scan, and examine in secondary. I might as well strapped a bomb to my chest. It caused me to miss my flight. I was so embarrassed as I was traveling from California to Las Vegas for celebrating my 30th birthday. And very grateful to be ALIVE at 30 years old. I already had had 36 surgeries because of dialysis! Anyway after landing and taxi with my airport bomb to my hotel, Baxter will deliver boxes of dialysis liquids to your hotel room though for free.. I rented a car and drove back. Cheaper than missing my flight because TSA cant understand how Peritoneal Dialysis works.

Don't even get me started on traveling to Maui Hawaii trying to use In center hemodialysis.... That was a nightmare from Hell. I spent my 33rd birthday in the ER on my Maui Vacation (first time traveling to Hawaii) Wasted 3 vacation days because the clinic couldn't read my TB report from my clinic. Then they wouldn't accept the chest Xray from their local hospital! I went 5 days without dialysis and very swollen and sick. The ER doc said in 16 years of practice in both Los Angeles and Hawaii has he ever seen a single case of TB. But the Fresenius in Hawaii refused to dialyze me. They also never told me that my Medical-cal insurance would not pay for the 20% that Medic-Cal was supposed to pick up. They never told me this when I made my appointment a month ago. I know Hawaii time is slow but.... I believe they jerked me around with the TB tests because I refused to pay the $380. in cash up front. I told them to send me an invoice and I will bill my insurance myself as an emergency. Or they can sue me. Yes the bullshit surrounding dialysis is REAL. Don't forget there are only 2 tiny clinics on the island and traveling across the island takes 1 hour 45 min each way. This Hawaii trip was a gift for my birthday and from graduating from Cal Poly SLO. hahahaha! Fresenius doesn't care. They want their $380. cash up front before they start dialysis. I tell all my doctors my story, They are just horrified and infuriated how far gone for profit dialysis has gone. Its expensive being poor and sick! So whoever says travel is easy on dialysis, OBVIOUSLY has NEVER done it before.

[LisaSnow in reply to Minyminuskidney]

Are you waiting for your second transplant? What is your reservation about HCV donor?

[Dara3351 in reply to Minyminuskidney]

I accepted a kidney with hep c. I had my transplant 12 weeks ago. I am taking 12 weeks of Mavyret and after 8 weeks my blood tests show no sign of hep c . I am on prograf and cell cept. Was on 4 pills a day, then 3, now 2 as they added 10 mg of prednisone. My phosphorus and magnesium were low but watching my diet and no longer take them. Not happy about the rise in my glucose but hey, it could be worse! Watching my diet and working with a dietician....also taking valcyte and dapsone and famotidine. Hoping for the best!

[Hidden in reply to Dara3351]

Dara3351: I am so happy to hear from you who just happen to experience what I hope my sis will once we learn how to get started. I am happy for you also. Can you tell me why you took Hepatitis C kidney? A wish to avoid dialysis or just shorten waitlisting? Was there considerable conflict between immunosuppression and antiviral treatment? I must also learn the dizzying list of meds you are taking. In the end the kidney is working, that’s what counts! Congratulations. Jerem

[Dara33 in reply to Hidden]

When you are dealing with Stage 4/5 kidney disease you begin to do everything you can to get on the transplant list. After taking all the tests, mammogram, Pap smear, colonoscopy, dentist, labs, etc...it’s a relief to know I didn’t have any other issues other than my high blood pressure. I have heard that the waiting time was 5 years...I had seen an article paper about an elderly gentleman who excepted a kidney with hepatitis C. Because nowadays, the medicine is much better and it can be cured. I met with a liver specialist at the transplant center and we went through all the information that I could expect and I signed a waiver to except a kidney with hepatitis C. Within two weeks I got the call. I knew I would never go on dialysis. It’s just that dialysis was just another level that had its own problems. When I got the call, my GFR was 12 and my creatinine was 3.71. After my transplant my GFR was in the 90s and my creatinine level was .7. I am on a 12 week program for the Hepsie on a drug called Mavgreat! I have three more weeks to go in treatment however my labs have already come back that there’s no sign of Hepatitis C. I have my days when I am tired and my meds are still being adjusted but I feel so much better and staying positive! I hope everything works out for your sister.

[Minyminuskidney in reply to Dara33]

Dara congrats!!!! Thats so awesome! I think you did the smart thing by a pre-emptive transplant and avoiding dialysis all together. That was not an option for me when I began dialysis in 2008 at age 28. Neither was getting a high risk kidney. I asked my doctors if they would get a hep c kidney and they all said YES. And like you, they would do everything possible to avoid dialysis. So that tells me a lot. Dialysis is a beast of its own kind causing a billion more problems. I know young healthy men with hep C from tattoo's. So how do you feel now? Do you feel sick from Hep c at all? Medicine and science is really amazing. I speak with other dialysis patients about would they accept a hep c kidney? they all are too scared. So hmmm a bit of a conundrum. I would think being on dialysis is more scary than having hep c! I suppose it's the stigma of people with Hep C. Ie drug addicts, prostitutes.... which I know, is really ignorant. A high risk kidney can mean one guy who slept with a prostitute one time. Therefore I am signing up for that high risk kidney! I want to live and I cant live on dialysis. I know people say, dialysis is saving my life. But really... IS dialysis saving my life? All the problems it has caused me.... It's not a quality of life.... being broke and attached to a machine 3x a week unemployed on SSDI just isn't my idea of a life. Maybe for 6 months but it has now been 6 years. I call that incarceration.

[Dara3351 in reply to Minyminuskidney]

The medicine today is far better today than ages ago. I am on a 12 week program of Mavyret which is three pills a day. By the time I was into my 6th week I had no signs of Hep C in my blood draws. I have 12 more days and I am done. Will have 3 lab tests to check this week, September and December as follow ups. In three more months I will be done with Valcyte! I found some sites on FB that were support groups and one woman claimed her husband got off of dialysis through diet. Not sure if that’s true but I really worked with my dietician ( gave up meat and dairy). I am just so thrilled that now I am only on one BP pill twice a day. I just have to get up and exercise more! I feel so fortunate that I have great Doctor’s in AZ. They say it’s normal to lose about 20 lbs of fluid after the transplant. I really can’t say that I had any side effects of Hep C ...other than heartburn which led to me vomiting...my liver enzymes have improved...now my meds have been adjusted because wbc was low! I was drinking about 2 liters of water a day and I am trying to get to 3 liters hoping that might be better. Do you have a dietician? I know when you are on dialysis your protein needs are much higher. Hope you get that kidney....hang in there!

[Gotthecall_123]

I had Hep C while on dialyses wouldnt even look at me for the,list until i was cured of it got on a clinical trial about 3 years ago 3 monthe 2:pills a day and i was cured 22 years later i got my transplant💪🙏😝

[Hidden in reply to Gotthecall_123]

Gotthecall_123: Was Hepatitis C considered so bad, that you ended up way way back in the waitlist? I understand that for some hepatitis C produces no symptom, did waitlist maker consider that in its nearly inscrutable methodology? You said 23 years, you must have tried to speed up, any tips for the rest of us yet to apply for transplant for the 1st time? Thanks. Jerem

[Gotthecall_123 in reply to Hidden]

Sorry i meant 2 years the nurse who set up my appointment with transplant coordinator Didn't read my file correctly it clearly said i had Hep C as soon as my transplant coordinator read my file she said who sent you here we will not offer you a transplant if you have Hep C so i had to get cured and start all over again it took 2:years to cure the Hep C and another 2 years to getmon the list i guess i was blessed 2months after making the list,i got the call my nurses said that was very unusual it usually takes a week or year or more to get the Cole 💪🙏😝

[Minyminuskidney in reply to Gotthecall_123]

Holy crap! I thought you said you waited 22 years on the waitlist because of having hep C! SMH! I was sweating that!!

Congrats on your new kidney!! Take good care of it. It is your life! Like a battery. Soon new innovation will rid of us dialysis all together. And the loooong waitlist. If I didn't have an antigen problem, Im sure I would have a kidney by now. Ughhh I just want to go back to work so I can afford to live.

[Gotthecall_123 in reply to Minyminuskidney]

Stay💪Man your a warrior 🙏and most importantly never ever give up😝

[Minyminuskidney in reply to Gotthecall_123]

If I understand you correctly.... You have Hep C. And you have kidney failure or kidney disease? Regardless, were you on dialysis already when you went to be on the list at the hospital? if you were already on dialysis with hep C, how long did it take from beginning dialysis to getting the call for a transplant? And where do you live? What hospital were you waitlisted at? Anyway... Congrats!!! So awesome to be free of hep C and dialysis! Thats the way to go!

[Gotthecall_123 in reply to Minyminuskidney]

Ok so i be had HepC for about 10 years before being diagnosed so it was in the filethe first time i went to meet with transplant coordinator to start the riggerous testing and many appointments as soon as they noticed i had hep c appointment was over iwas told to get liver specilist so i did thankfully they got me on a clinical trial for a new drug the cost would of been 62.000 2 pills a day for 3 months anyhow that took 2 years from start to cure🙏So then i had to start the testing again it took me another 2 years to make the friggen list unbelievably I GOT THE CALL 2 months later i just had my 1 year post may 24 th💪🙏😝

[Minyminuskidney in reply to Gotthecall_123]

YAY!! THAT IS AMAZING! WOW! I WOULD MUCH RATHER GO THROUGH 4 YEARS OF HELL CURING HEP C! 2 YEARS CURE, 2 YEARS WAITING, ONE WEEK ON WAITLIST. YOU ARE LUCKY! BUT GOOD FOR YOU! MIRICALS DO HAPPEN AND IT JUST PROVES... PEOPLE WITH HEP C CAN GET TRANSPLANTS!! It would have been smarter if the transplant center just listed you for a kidney transplant then cured you of hep C after the transplant. Makes so sense. Since they want people like me to accept hep c kidneys then take more pills to cure the hep c after transplant. I want to find a doctor who will explain the logic of this....

Technically, I can wait longer on dialysis (which makes you sick and hard on your body, keeps you disabled) and wait for a non hep c kidney-long wait time, OR accept a hep C kidney which will make you sick/take more meds with immunosuppression , but a shorter wait time on dialysis which makes you sick. What a conundrum!! In California the waitlist is so long... years 10-14 that we almost have to take a hep C kidney. Especially id patients are young on dialysis preventing them from staying in the regular workforce. So its like a dammed if you do a dammed if you don't.

[Minyminuskidney]

Yes it broadens the rage of available kidneys. My transplant people are saying I need to accept a hep c kidney because my antigens are so high. It sucks because 2 pregnancies mage my antigens high. Men don't have to deal with pregnancies, so their antigens aren't as high. Its biased and unfair towards women who can have children. 50% of the population has higher antigens because of giving birth yet on the waiting list there is no algorithm to factor that in. Yet there are algorithms for age, diabetes, location, and prior transplant.

[Gotthecall_123]

Hi ive never heatd of a HepC kidney?mi was told they wont gibe you a transplant if you have hep c because your liver will end up being damaged thats why it took me an extr 2 years to get the meds and a cure bit when i did it it was a clinical trial so i guess it wasnt 100% gaurenteed thankfully it did🙏 I was at the point,of gibing up but i dug deep and found the strienght to,complete the proses habe they offered thempillsmto cure hep c