Approximately 3 months ago I started the process of getting on the kidney transplant list. At the time I was referred for transplant by my nephrologist because my GFR was 16 and we both thought dialysis was looming. I started the process and went through all the testing required to be listed.
Early this week I heard from my transplant coordinator, I am now listed. The good thing since I started the process was that my GFR Is now 20. I am listed for a “preemptive kidney transplant” hoping that I will receive my transplant before I need to go through dialysis.
Has anyone ever been in a similar situation and if so did what was your outcome? At what point do you move forward with transplant?
I have been very luck so far. My kidney failure symptoms have improved. I just wonder how long this will last 😞. I want to be totally realistic, I know that with my disease process I will eventually go into End stage CKD.
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Socky
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Good morning. I didn't have to go through dialysis. I was very lucky. Make sure to tell the world you need a kidney. I was afraid, but don't just wait til you get the call. I put it in the paper, which I felt funny doing. Put it on social media. Whatever you have to do. My living donor came from Maine, and I live in NJ. She didn't even know me. I was told to put it out there, even though I was terrified. The more that people know this, hopefully someone kind will come along and help you. I wish you the best, and hope your symptoms still stay improved.
That’s what I’ve been told to do and yes I too feel terrified. I am not the type to share my personal life with everyone, especially people I don’t know. Very few people know that I have CKD beside my family. Only one of my colleagues knows about my diagnosis. I go to monthly meetings at my hospital for lectures on CKD and never stay for the support group afterwards. I just don’t know how to speak to others publicly about what I’m going through.
Thank you for your advice. I know that I will eventually have to muster the courage to tell my story.
I totally understand how terrifying it is. I am like you, not wanting the world to know my business. I am a shy person, and I think it would be hard to talk about publicly. I went online, so I didn't have to talk face to face to anyone. I hope you can get through this. I wish you the best.
So my I felt like I could have written your post. I have IGAN hovering at gfr of 17 reactivating to active status on the list for a preemptive transplant. I want to do it while I’m still feeling good enough to go through the process and have the time to accept the right deceased donor. It’s tricky because knowing your kidney could fail at any time but trying to keep your current kidney as long as possible and not go on dialysis. Keep me posted on your journey.
Hi. My husband had ESRD and got a preemptive kidney transplant in 2017. He got lucky because I was a match so I was his donor. He was on the list and then the transplant team told him to start asking family and friends to be tested if they were willing to be donors.
I started tests around Sept 2016, once everything was good to go, we could have gone through the transplant by Jan 2017 but due to our daughter's school schedule and help from our parents, we didn't have the surgery until April 2017.
It's been a long 2 years so far since my husband had other complications after the surgery but now he's stable.
So if you find a living donor, they will probably perform the transplant after your donor has undergone all of the testing and is cleared for surgery.
They told us they would rather do the transplant while he's still young and can recover quickly versus waiting for the symptoms to get worse and then do the surgery. Best of luck to you!
I looked back at his records. Pre transplant his gfr was 9 on 4/3/17. Three months before that on 1/12/17, gfr was 12. Transplant took place on 4/26/17. Gfr went up to 48 and increased slowly from there.
I had a preemptive kidney transplant six years ago. I was born with a single kidney, but didn't find out until years after having my kids. It was a quirk the way they discovered it. Too long of a story to fit this space, ha! I'm in my sixties and was diagnosed with CKD over 15 years ago. With a good nephrologist and adherence to a kidney-friendly diet, I maintained my single little bean for quite awhile. It eventually started waning, and when my gfr hit 15, they put me on the transplant list. I was very nervous and in denial, especially since I felt so well. Why would anyone want to opt for a major procedure like that, only to be on immunosuppressants for life? "Talk to the hand," I kept telling my nephrologist. "I'm fine." (I was actually scared sh#tless!) I was in denial so badly that I actually turned down the first offer of a possible match I got via a phone call in the middle of the night. "Give it to someone more in need than I am," I told the coordinator. (You can turn down offers, and they just call the next possible match). My doctor lectured me at my next visit. He said, "You may feel well, but your labs prove differently. You're gfr is now at 13." So that woke me up, and I was VERY lucky to get a call a few weeks later. I told the coordinator, "I'll be there!" I received a cadaverous kidney (no family members were a match for me). I recuperated quickly and walked with my son down the aisle at his wedding one month later. I know how blessed I am to have been given this gift when so many others are on dialysis and still waiting. The immunosuppressants are a bit of a challenge, but this is my new normal and I've never looked back. It is a personal and daunting decision to make, and can be scary. Nobody can decide for you. But I think you'll just know when to take the leap. Best of luck to you. Oh, and by the way, my kidney was from a young man. So sometimes I pee standing up. Ahaha! Kidding! 😂
wow, sinxe I am goinf through a similar patch, your stoey came out to my fees, and I felt like if you had been writing my story. I've been at GFR 13 for about 3 years sinxe listing. I also receives a call, ans said the same. You made me realize I have been in denial. Thank you for yoir story. It's encouraging to know what happens afterwards
My husband of over 40 years has the genetic PKD and was scheduled to have a fistula surgery for future dialysis, but a week prior to this surgery he got the phone call that a kidney match was found. He had the transplant late Nov 2018 and for two months all went great. His GFR was 13 before surgery and now 34, 6 mos after. Each month he gave a blood sample to UNOS and they found the match. His brother had this same disease and his wife was his match for the transplant. My husband felt very uncomfortable to advertise for an organ and would not allow me (a healthy woman) to see if I could match someone and do a 'swap'. He did not want me going through a serious surgery for him. The kidney is doing well that he received from a person who had a tragic accident,but hubby has had several medical setbacks and his energy is not restored yet since FEbruary due to the setbacks. My frustration is he won't talk to me about how he feels or thinks. He is retired and I work full time. He has hours alone to think which is good and bad. I wish he would share with me 'anything'. I hope his energy will return, and his dr. last week said it would. I wish you a great experience.
Thank you for sharing your experience. I hope that your husband makes a full recovery and that he regains all his energy. Continue to offer him your support, some of us have a harder time opening up than others. I will Praying for both of you.
HI Socky, thanks for your kindness and prayers. I am always supportive, kind and do anything for my husband no matter what. I don't nag him or anything, but for me, inside, I am breaking emotionally due to how he has shut me out of how he is doing and his thoughts. It's not like we were married a year ago, but over 40 yrs ago. we have no kids, just us two. THe only thing I am not coping well with is 'this' uncommunicative person whom I love so much. I see a counselor but he refuses. It is very very difficult for me. thanks for listening. The emotional part is the area I feel the doctors do not focus anything about. I partly understand that, but what about 'me'?
Sorry you are going through this. I remember my nephrologist told me that there is always a chance that getting a transplant may actually make me feel worse than before transplant. I wonder if that’s what has happened to your husband. Hang in there. 🙏🏽 Sending you good vibes and a big warm hug.
Wow what an amazing story! I understand a bit what your going through. As a person waiting for a kidney for 6 years, I felt embarrassed to ask for a kidney. For me, it is too much to ask of someone. My family of 5 people will not donate to me. It is just how they feel. I know they are scared. They have kids. They see all what I go through. It hurts me honestly, but I don't show it. I don't want anyone to feel they have to help me. As I see it as my disease and my problem. I know it sounds weird... But thats how I was raised. Be humble and be greatful.
I still need a kidney and I am listed at UCSD and Sharp in San Diego California, where they have a registry, kidney banking program. This is how it works.... You find a donor but they don't match you. But that donor gets a voucher if they donate to a stranger who matches, and you get a voucher for life for the next matching kidney that comes along, if you ever need one in your lifetime. Its like an insurance protection. All of this is completely free for the donor. The person who donates gets a voucher for the very next immediate kidney, if they EVER have any problems in their lifetime. I think its a fantastic program! A real win win for both parties. You don't need to go anywhere if you live out of state. Just your local transplant program who participates in the national kidney registry (UNOS). Its called the Kidney Registry. A sort of kidney banking system. If you ever need a kidney, you will never have to be on dialysis. You will never have to look for a kidney like everyone else on dialysis does. You have your voucher for a new one since you donated. If you like, and if you still want to donate, you can donate to me in my name (even if we don't match, I get a kidney). And you get a kidney if you need one. I hope this makes sense. My name is Margaret, I am 39 years old. I am in San Diego California. I have an autoimmune disease that killed my kidneys at age 28. Have had 2 blood transfusions so my antigens are at 98% so very hard to match any deceased cadaver kidneys. The waitlist in California is 10-14 years now because so many people are waiting. You may contact me on Facebook or here on this app. Or by e-mail at mechruszch@gmail.com. If you have any questions, I'm happy to answer them Thank you for being a caregiver to your husband. It really is rough. He may just want to hole up and deal with his grief alone in the corner. He doesn't want to hurt you or burden you. I get it. I am there myself in ways... If you want to talk, I am there for you
I have PKD and last July, my nephrologist said it was time to go to the transplant center. That was scary. He and the people at the center strongly encouraged me to ask for a living donor, because that kidney will work sooner and better, and the preemptive transplant will fix the issues before I got to dialysis. My GFR was 15 and sliding downhill fast.
Now, you have you ask for the donor. The center participates in the donor exchange program if the donor doesn't match, so the critical step is finding the donor. It was hard to ask for something so huge for myself. The preposterous idea that someone should have a part of their body cut out to make me better was a challenge. I asked at my church, because people that would do that are found their. I got up in front and made them gasp and cry when I asked, and made them cry again when I told them I had a donor. It was the pastor.
Transplant was Feb 7, and I was better before I left the hospital. Stuff that had been screwed up for 20 years is better and some other stuff got better too. You don't know how sick you were until it stops. I have not had issues with the operation or the meds. I have certainly been blessed through all this. My wife has been alongside for the whole adventure. My donor is doing great and is back to his triathlon training.
So, you have to ask. Depending on your blood type, the cadaver kidney wait time can be many years. The donor gets you to jump the line and get healthy before you are horribly ill. Good luck and may you be as blessed as I was.
Your story almost drove me to tears. 😔 Thank you so much for sharing. I congratulate you for being so brave. I’m very happy to know that you had such a positive outcome. May God continue to Bless you. 🙏🏽
Socky: It is encouraging to know GFR may still improve as in your case. It buys time. What is IGAN? Does wait-list as desirous of "preemptive kidney transplant" slows you? I am just asking here. I am trying to help my sister who just went stage IV last month but still lucid and with mild swelling in the legs. Good luck and god speed. I am new in learning about CKD, ESRD etc.
I had a preemptive kidney transplant in May 2015. I was diagnosed with CKD in 2004 at stage 4. At the time, my son who was 23 told me that some day he would be my kidney donor. In 2014, when my GFR had dropped to 15%, my local nephrologist recommended that I go through transplant evaluations as it was time. My son reminded me of his desire to be my donor. When I thanked him but told him that I preferred to go on the waitlist as I was concerned about him, he told me that he was going to donate a kidney no matter what and that I was his first choice. Bless his heart. We ended up being a match. He had to lose 30 pounds, which he did in 3 months. He was so determined to give me a kidney. I was down to 8 % function prior to transplant. I didn’t realize how sick I was until after receiving my kidney transplant when I felt so much better. Earlier this month, we celebrated 4 years. We are both doing well. I’m thankful everyday for his extraordinary gift of life which allows me to live life to the fullest. With kidney Transplant joy and thankfulness,
Thank you for sharing your story, it is inspirational and motivating. It is so up lifting and gives me Hope. 🙏🏽 Congratulations for your 4th anniversary!!! May God continue to Bless you and your son with a lot more healthy years!!!
Snd your son is fine I hope my best friend gave me his kidney . I am so blessed . Life is better after transplant. I am coming up on my One year kidneyversary.🙏🏽 my friend is fine and Kidd is goodHis only complaint is the traffic in Los Angeles LOL
At the time in 2008 in California, pre-emptive kidney transplant was not allowed. So its good you were able to do it. You should multicast. If you have the money too travel out of state, do it. txmultilisting.com Get that kidney and avoid dialysis. Its a who mother beast on dialysis. Do everything you can to avoid dialysis. But prepare for the worst and get a graft or fistula in. If you want PD, then u need a catheter surgery. Try to avoid the chest catheter at all costs. Very painful and its strait into your heart so its easy to get infections and go septic. If you feel sick at any time go immediately to the er or call your nephrologist. People with kidney failure get super sick quickly. Within hours.
I never went on dialysis. I knew that would be another hurdle so I went on a plant based diet. My kidney function was at 12% GFR and my creatinine was 3.7 before my transplant. I followed the plant based diet for 2 years and accepted a kidney with Hep C. After my transplant my GFR was 98 and creatinine was .7. I immediately felt I had more energy and felt great. It’s been 14 weeks and my meds are still being adjusted. I am on 12 weeks of treatment for Hep C (Mavyret) and after 8 weeks no signs of Hep C... I take each day as it comes but my transplant team is the best!
I hope your son is fine. my best friend gave me his kidney . I am so blessed . Life is better after transplant. I am coming up on my One year kidneyversary.🙏🏽 my friend is fine and his only complaint is the traffic in Los Angeles LOL
It’s definitely a shock when you find out your kidneys are failing! There are so many emotions that you will go through. My GFR was at 17 when I found out. My creatinine was at 3.7. At the time I was living in Michigan but had been planning to retire in AZ as I had bought a condo in AZ six months prior. I moved to AZ and found a DR who immediately referred me to a nephrologist. One of the things that helped me was his comment that this is just another chapter in my life. I was referred and began taking kidney education classes. I had to go through a battery of tests but was ecstatic that I had no other issues! It was two years later when the transplant team told me that patients could now accept kidneys with Hep C because medications had improved! I waived and within two weeks I got the call! At the time of my transplant my GFR was 12 and creatinine was 3.71. After the transplant my GFR was 89 and my creatinine was .7. I had no pain whatsoever after the transplant and I was walking the day after surgery. I did so well I went home a day early. I also changed to a plant based diet which definitely helped me. You will need a caretaker for two weeks after the transplant. You won’t be able to drive. I was lucky that my son who lived in Boston was able to take care of me. While getting my labs done after the transplant I met another transplant who told me her GFR was at 6% and did not go on dialysis. I knew dialysis was not for me as that was a lot of other issues to deal with. I am 4 months past transplant and my meds are still being adjusted but that’s ok. I wish you the best of luck! Stay positive!
Hey Socky thats great that your GFR improved. Did you follow any strict diet or medications that help improve your GFR? my husbands GR has dropped 3 points after being stable for 5 years. He is CKD stage 4 and we are evaluating our options to go on dialysis and also reactivating on the organ donor list
I was diagnosed with stage 5 kidney failure due to PKD that was in July 2017 and I stayed off dialysis and got my kidney from someone that offered me theirs in May 2019. I make sure I ate right, exercised, and take every med I was supposed to on time. I hope you get yours before you have to start dialysis.
We all know how incredibly difficult it is to search for a living donor. We feel anxious, vulnerable, that we don't want to be a burden...it's hard. But I was determined to do everything I could to avoid dialysis, so when my GFR was in the low 20s I wrote and practiced "my story". As difficult as it was, I forced myself to tell others about my need by sharing my story (I never directly asked anyone to donate). Amazingly, several friends did contact my transplant center. Most were ruled out, but one went throught the evaluation process and was my donor. I was transplanted when my GRF was 15 so I totally avoided dialysis. It was extremely hard to tell so many people about my personal health, but I am so glad I did.
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Thank you for being a caregiver to your husband. It really is rough. He may just want to hole up and deal with his grief alone in the corner. He doesn't want to hurt you or burden you. I get it. I am there myself in ways... If you want to talk, I am there for you
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