Hi Everyone, it’s been quite while since I have posted anything, but what I just went through tonight still has me wondering if I made the right decision.
I was working tonight, when I received a phone call from my transplant center. I was offered a kidney, and I refused it.
I just had a doctors appointment approximately a month ago and my doctor and I agreed that I am stable, or am I just in denial? I now wonder if I made the right call.
I have IGAN, also know as Berger’s Disease. I have stage IV CKD. I am not on HD, my GFR is 22. I am 40 years old and have made many life style changes since my diagnosis and I for the first time in a long time feel great! I have had some weight loss, my energy levels are up, I exercise regularly. I am work full time, I have three young daughters and a very supportive husband.
I fear that undergoing a transplant at this time may affect me negatively. I fear rejection, I fear medication side effects, I fear the so things.
I was listed not even a year ago, and I was actually shocked that I got “the call”. I also felt that maybe there was someone out there that is on dialysis and has been through more and is more deserving at this time.
I don’t want to regret the decision I just made. 😔
Has this happened to any of you? And what would you have done in place?
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I'd have done the same, especially at this time with the corona virus spreading through the world's population.
22% GFR can last years if you're lucky. I think the point at which dialysis is necessary is closer to 10 % GFR for most people, ideally it's best to avoid that.
I would have made the same decision. If you are not on dialysis, your numbers don’t reflect any immediate need for treatment and your life style currently is active and feeling great, why op to go through a major surgery. Be confident in your decision and don’t stress about it. Stress can cause you issues that you don’t need. Stay strong and healthy. Keep moving forward and living your healthy and active life with your family. God bless you!
I have received a kidney transplant a year ago and I am still having a lot of complications. Whenever I take the medications I always feel bad; I feel like throwing up, headaches, stomach issues, confusion, nerve problems, blurry vision and the list can go on. Kidney transplant is not for everyone. Try to live with your own kidneys for as long as you can that is the best option. I know many people who choose not to get a transplant and stay on dialysis for all their life. These are some things to think about before you make any life changing decisions. Good luck and have a wonderful life with peace and love.
It absolutely happened to me. We spent 3 hours deliberating what to do and ultimately rejected my offer as well. A year later I received a living donor transplant in a swap with a total of 6 people. When we made the decision to reject my offer we agreed then that there would be no regret or what ifs because you see that ship has sailed. So I say to you, onward and upward! Keep doing what you are doing but add in to the mix searching for a living kidney donor so you control your timeline and continue to allow deceased organs to try and assist dialysis patients. I love your heart and thought process! God bless!
I had a transplant 20 years ago. I have never regretted that decision I made. Yes, the first year was a little "rough." My body was getting over major surgery and adjusting to the immunosuppressants. I learned to let my transplant team know if I was having any problem or issue. My team adjusted my meds several times that first year in response to my side effects.
I went back to work full time. My husband and I travel. We have been to Europe, Nova Scotia, Caribbean, Mexico, and visited friends in the US.
I saw my daughters graduate from college, get married and now I am a grandma.
I guess what I am trying to tell you....don't be afraid of a transplant. I know that every person is different and experiences things differently. My transplant team was there for me and helped me get where I am today - living well!
Only you can really answer whether you did the right thing turning down this kidney. Maybe your next "call" will be a better match and will work out better for you! Sometimes, that's how things work out.
Take care and continue to let us know how you are doing! God bless!
Hi WYOAnne, i have written you in the past. My spouse of over 40 yrs received his donated kidney Nov 18 and not until Jan 2020 did he have his first good blood lab result. It is August and he tells me he still feels worse now than before his transplant 20 months ago. We have no idea if he will feel better a year from now. It hurts me emotionally to see all the things he used to do 'gone' and him sitting around the house most days since transplant. The first 14 months were full of assorted problems: rejection, red and white blood counts super low, CMV virus while also dealing with a new diabetic 2 medication regimine to follow. His numbers with blood work since Jan to now are good, but he still feels worse. So we wait and wait. I work full time from home due to covid now and don't wish to bring this virus home to him if i was still working at my office at a campus. I am so very happy you have been able to live your life fully and travel. We are not able to do that yet, and I hope one day we can. All my best.
It's important to remember that transplanted kidneys don't last forever. As long as your GFR is not at critical level and you are asymptomatic, it is generally best to get as much time from your own kidneys as possible.
I’m not much younger than you and am now 6-months post transplant, but I was stable around a GFR of 22 for at least 7 years before it began to drop. I was lucky enough to get a live donor transplant offer right at the point I needed dialysis at a gfr of 5. I was otherwise healthy with no major symptoms. My advice would be to look after yourself and your health and your own kidneys for as long as possible. While transplants are a blessing, you need to be ready (often the decline in health gets you to that point), and as you’d know, they don’t last forever and the drugs increase your risk of other health issues, so really, in my opinion, if you feel well and the numbers are stable, then you’ve made a choice that will hopefully allow you time to get there on your own terms, when you feel ready - there comes a point where the benefits outweigh the risks and the side effects. Trust your choice. All the best!
Totally made the right choice. With a GFR of 22 I am surprised you were even active on the list. I was evaluated last January when my GFR was 17 and was put on the list as inactive. They still worked up potential living donors, but inactive on deceased donor list. When GFR fell below 15 I was “active”. I was blessed to have found the perfect match and was transplanted 7 months later at GFR of 10. Doctors all agreed it was perfect timing. Transplant was needed, but we had also eeked out more time with the native kidneys. It a balance between transplanting too early and waiting too long that you need dialysis. Best of luck!
I was at 20 gfr for at least 5 years, but I lived a very disciplined life... diet, long walks, stress management (which easier said than done ) but I had a terrible doctor who kept on giving me medication which every time I took my gfr started going down...When you get an offer ..check to see how compatible it is ( I am ignorant about cadaveric kidneys) ... at some point you will observe the gfr dropping down in larger intervals and moment you go on phosphorus binders... pretty much you have at most year or more for a transplant or you will go on dialysis.
Of these are my experiences... I am sure you will make the right decision... Best Wishes.
I was transplanted at GFR 5 not yet on dialysis. I was mostly symptom free even at this low GFR. My kidney disease was diagnosed 8 years ago at stage 3. Every year I lost functionality little at a time. I was transplanted successfully two months ago and so far recovering good.
I refused one call early May due to Cov19 scare and mostly since I was not mentally prepared for the huge hump of surgery. I spoke to my Neph the very next day and she assured that it will be ok to go for the Transplant surgery even in these conditions. I got another call the very next week ( lucky!) and this time Me and my husband decided to take the call and proceed.
I am glad I had the transplant just in time before dialysis started
I initially refused a kidney because I was going on a cruise with HGTV Property Brothers Cruise and would lose the money I spent. I had signed a waiver for a kidney with Hepatitis C and was called within two weeks. I went on the cruise, ate better, slept better and exercised. That week my kidneys improved slightly. I was on a plant based diet and had no meat or dairy. When two months went by (Dec and Jan) I prayed I hadn’t made a mistake. I was fortunate and got called in February’19. I am so grateful I got the kidney transplant. My Creatinine was 3.75 and my GFR was 12%. Best decision I ever made. One never knows how fast the kidneys will deteriorate. Don’t be afraid of the transplant. I’m happy, I have a new lease on life.
You absolutely made the right choice a million times over. My center tried to push me into a transplant at the same stage as you, famous place. My nephrologist called me for a meeting, his words “ a transplant is not a panacea”, he always tried to encourage me in the past, he knew that I wasn’t interested in transplant or dialysis, he thought that when the time came that perhaps I should consider a transplant.
He sent me for evaluation because it was his duty as my doctor to do so, but never dreamed that a kidney would be available within a couple months, he thought I would be on the list for years, to make a long story short, the center was so compelling and so aggressive and with such a stellar international reputation, I decided to go along with them, I had high antibodies, they said it might not be so easy to find a match when I really needed it. I was all set, the day that i was scheduled to report in, I twisted my ankle on their shuttle bus and broke my ankle, the transplant was cancelled and as result I lived 4 years of relatively healthy life without drugs, all I can say is Praise God, he sure was looking out for me. I did get a transplant from a live donor from church actually, never had to be on dialysis, unfortunately for me it’s been one complication after another, it’s a 17 months of sickness, I probably could have kept going longer, I was still with a GFR 14.
Keep your kidneys as long as you can, keep doing what you’re doing and don’t let them talk you into a transplant before you’re absolutely ready, money plays a big role with these centers, I’ve been doing a lot of investigations. Good Luck to you and I wish you well.
Be your own advocate, if you trust your local nephrologist, take his advise, mine has saved my life more times than I can count since this transplant.
Hello 1917, I read your response about 17 months of problems and that was my spouse' situation after his transplant Nov 2018 through Jan 2020 so so many kidney problems (rejection, red and white blood counts super low and CMV virus). The problems are over as of 1/2020 to present month, but he feels worse now than before transplant. He used to be somewhat active doing things outside, rare now. Never does any hobbies and for me to watch all this play out it has emotionally crushed me though I am supportive of him. Do you think you will feel better later? My spouse is now 61 recently. I wonder if a year in the future he does feel better. His GFR had been 13 and now it is in mid 40's. I wish you all the best. I really do.
As a two time kidney transplant recipient, I understand you and your spouse’s frustration. I am so glad his labs are looking better than in the beginning. I want you to try and take my next thoughts and really think about what I say. This comes from my own personal experience with my second transplant. I am not a doctor, but I think some of what your husband may be experiencing is depression. Having a chronic disease, going through major surgery, taking all the immunosuppressant medications, and dealing with the complications early on is a lot for a person’s physical and mental health. Have you specifically asked your husband how he doesn’t feel well? What symptoms he may be experiencing? Have you spoken with his transplant doctors, a social worker, or therapist? I know many people who say, “I don’t need a therapist. I’m fine.” But the truth of the matter is people don’t like to ask for help even if deep down they think they may benefit from it because of the “stigma”. If you are able, seek a therapist who specializes in chronic or medical issues. And as his spouse, you should also consider therapy or speaking with someone you trust. Yes, your spouse is the one who had the transplant, but you are dealing with a lot too. Seeing a therapist has been as important as getting my transplant. I will have you both in my thoughts and prayers and hope you will soon be able to enjoy life as you want.
My spouse of over 40 yrs, never on dialysis had his transplant 18 months after waiting for one, and now it is 20 months later and he questions his saying "yes" to this organ because for him he feels worse now than before his transplant. He was down to 13% GFR when he received the donation and my fear was his going on dialysis (I was looking into "at home type". The first 14 mos he had so many constant problems with rejection, and then blood chemistry and the CMV virus from donated kidney. Jan 2020 was his first good blood lab results and still now too., but he still does not feel well and does very little compared to his physical go,go before. It overwhelms my thoughts often to see and wait 'if' he will one day feel good. I am thankful to the person who donated their organs to others, but my spouse and i question this decision we made.
It’s incredibly personal how each of us responds so you are likely to get a lot of different responses. I felt well on EFGR of 22 . I got to 5 before I was transplanted, that drop can be slow or sudden and a lot depends on how you body deals with the decline. I was extremely lucky even at 5% I coped although I was retaining a lot of fluid. Perhaps your best option is to have a discussion with you nephrologist about how stable they think you and for how long If you are in the list take yourself off the list so you don’t get put in the difficult predicament again.
If you do face a transplant in the future don’t be scared. It’s ok. Stay open minded and trust your doctors.
Yes. I was 15 when I was transplanted the first time. A cadaver kidney lasting less than a month. The second time I was 18 and heard the phone call about another cadaver kidney. I ran out of the house, grabbed a bus and spent the rest of the day at a mall and then a movie. When I got home my father told me I missed the call. I was feeling good, having fun and did not want to spoil feeling better than I had in a long time. I never regretted my decision.
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