My GFR is 15. My creatinine is 3.28. I have not started dialysis yet but my goal is to have a transplant before having to start dialysis. I have a donor and we are in the process of being tested. My donor is also in the exchange program so the likelihood of getting a transplant is good.
I don't have a lot of swelling, but I do have other symptoms like severe leg cramps, fatigue, dizziness, etc. I don't want to get a transplant too soon, but I don't want dialysis either. Does/did anyone have a similar situation from which they can share some advice? I'm just not sure about the timing of this whole thing. Should I wait for things to get worse, or should I keep moving toward transplant.
Are my GFR and creatinine levels enough to make this decision?
I'd appreciate hearing your stories. I'm so thankful to have this forum to reach out to.
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Reesee132
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Hello, I am 1.5 years post transplant and you have described my situation to a tee before transplant. What you are asking is..Is a preemptive transplant a good thing. I am hear to say yes! I had to have two weeks of Dialysis, it took more hospital time to put in a port / catheter to receive Dialysis than it was worth. I appreciate that the Dialysis helped me for a few weeks, but if I had been more diligent, I could have avoided two additional uncomfortable surgeries. Also, you are (as I was) in a RARE situation, don’t squander it (respectfully). Most people with CKD have years of pain, Dialysis, frustration which leads to other Mental and Health related issues. My sister was a near perfect match and she was a willing donor. I am lucky, I hit the lottery. As it sounds you can be too. Get the transplant if your team is willing and your donor is good to go. All those ailments you mentioned, get worse and can be debilitating, believe me, I have been there. They can cause additional pain and further damage. Also, there are no guarantees, unless you have already been screened / vetted physically by your transplant team with the weeks and weeks of physicals and a complete sign off, you have a ways to go. Again, if you are in a position to get it, DO IT regardless of GFR as long as your team supports preemptive transplant. Good luck!
Hi Reesee132. I am 4 months post transplant and I was at Creatinine level 6.2 and eGFR at 5 when I got Transplanted. I was working fulltime and was not on dialysis. I had no swelling, or visible discomfort to start dialysis except fatigue. I was very fortunate to get a call from waitlist and got the kidney before dialysis
I think at eGFR 15 you have quite some time on hand to actually get Transplanted. Post transplant life is a bit restricted. The medications have side effects and also your immune system will be compromised. Given the current Covid situation if you are not on verge of needing Dialysis, waiting on pre-emptive Transplant surgery is best option. Just my opinion.
I had my transplant on February 4, 2019. My GFR was 12 and Creatinine level was 3.75. I was never on dialysis. Prior to that I had waited two years. At that time my GFR was at 17 and slowly declining. I was on a plant based diet working with a dietitian. My nephrologist said no meat or dairy! I had seen an article how a man had received a kidney transplant that had Hepatitis C. Because it can be cured these kidneys can be donated. I met with a liver specialist and signed a waiver to receive a kidney with Hepatitis C. I did a 12 week treatment and no longer show signs of Hepatitis C. After surgery my GFR was 89 and my creatinine was.7.
If a kidney becomes available take it! I waited almost two years but when I signed that waiver it was within two weeks I got called. I had no pain after surgery and was walking the next day. I even went home a day early. I am so grateful for this transplant! I have a new lease on life! You will too! Stay positive! I had a lot of prayer warriors! Good luck!
I had a pre-emptive transplant from my wonderful living donor when my eGFR was 15 and am extraordinarily grateful that I did. Evaluations and arrangements for a paired exchange (should you need that) take time and you want to have time on your side to avoid dialysis. I was having symptoms related to my extreme fatigue and, as so many others will attest, I didn't realize how sick I was are until I felt well again after the transplant.
Hi Reesee132, Good Thinking on your part, preemptive KTR is more beneficial in my understanding as the internal organs have not been under the stress of dialysis, In my case my creatinine was above 5 - my wife was the donor. If you are 65 yrs medicare will pay for the donor & you, provided the GFR is below 15, If you are under 65 Medicare will still pay provided you are on dialysis,, unless otherwise you are arranging the financials - however between GFr 15 & 10 you may get a year of two. You can get all pre transplant testing done between you & donor - which gives you mental boost that you have a compatible donor. If you are below 65 yrs, Talk to your current Insurance and figure out how the pre testing transplant costs will be handled. ...In my view you are on the right track... Good luck !
Your dr. Will tell you if there are restrictions on what your GFR needs to be before they will transplant but a kidney became available when I was at 15 and had not started dialysis. The recovery was quick with a 2 day hospital stay. I was 72 at the time.
Move on with transplant! My creatinine was as high as 11.77 before surgery. I am 4 months post surgery and feel GREAT! My current creatinine has been a steady 1.1 since. All other numbers are now in the normal range. I was on dialysis for 3 months, due to surgery delay from Covid-19, and it wasn’t fun. It give me temporary relief and limited my freedom.
Thanks for all the advice! I appreciate you all taking the time to reply. I have my transplant orientation day on Tuesday so I'll have more guidance there. Blessings to everyone!
It’s as if I was reading my journey. I implore you not to wait. Proceed full speed ahead. I did a preemptive transplant to avoid dialysis and it’s been 2.5 years. Good luck you got this!
Hello. Its probably going to be a conversation for you and your to to both consider when is best. I would first confirm that testing is complete and the donor is a match. In my case I was on dyslisis and my creatinine level was 11.0 and GFR 4. I had to have mine done. If I had the option as you do, I would consider how fast the GFR and creatinine are changing and base my decision off of that information.
I am no expert. My GFR was 12 when I had my transplant. I had no symptoms. I would move forward with the transplant as soon as you are able. Getting a new kidney, for me, was the best thing I have ever done. It should make you feel better soon. I wish you the very best with your new kidney.
I was at 10 eGFR and chose a preemptive transplant even though I still felt pretty good and not on dialysis. I was 66 though, and worried that my health could change in a year or two, or I might have a sudden decline in function. .
I am however, a grateful transplant recipient. Even though I’m 11 years post, because of HGB issues, I still get labs monthly. My nephrology team likes to keep an eye on my numbers. Your numbers look concerning to me. If I was you, I’d be in close contact with my medical team - Before my transplant I recall having some of the symptoms you mentioned. All the best as you continue on your kidney journey. God Bless you.
Do it now. I had my transplant when my GFR was 12 and my creatinine was 3.58. I was swelling, always exhausted and tired of having a restrictive diet. Plus the fear of the unknown and what to expect when I got the transplant was always in the back of my head. Everyone is different and some people feel fine when their GFR is under 15, but most do not. I was very active and a runner, so when my GFR dropped, I noticed it immediately. I have been told many, many times by doctors post-transplant that I was lucky not to ever be on dialysis and it made my recovery that much easier. Good luck!
My nephrologist was all in on a pre-emptive transplant. You are not as sick when you get the transplant so you recover faster. Dialysis can introduce additional complications to the transplant. My creatinine rose from 3.5 to 4.5 in the last six months, and I was getting lethargic and mentally fuzzy. I got a living donor transplant 18 months ago and it has gone great. I have PKD and things that were sideways for 20 years were all better before I left the hospital.
My transplant center has been very cautious and has stayed open throughout this pandemic. If you and your donor are cleared and ready, I would not wait.
Hello Reesee132,I would definitely say to go forward with the transplant as you have a better chance at long term good health/transplant lasting longer than if you have dialysis first. My transplant center has told me this, but I have done it both ways..first was from my Mom with no dialysis before as a teenager and second I had 8+ years of dialysis before..I had trouble with getting dialysis access and required multiple surgeries to get a working fistula, went on peritoneal for a year and a half, which was every day 4x a day and had some issues with that,and finally ended up with a fistula using my femoral artery and saphenous vein for the remaining 7 years. I had a living donor that was compatible but I had very high antibody levels from the prior transplant and multiple blood transfusions, so they said they could not transplant until those antibodies went down, as they believed it would cause a rejection..I researched on my own,looking up other centers to see if anything could be done to remove the antibodies and ended up finding out that John Hopkins was using plasmapherisis to remove them..traveled there in between dialysis treatments and they said they could transplant me right away..but my insurance wouldn't cover out of state..so I returned to my hospital with all of the information and gave it to one of the transplant Chiefs who told me they would look over the information and the trials at John's Hopkins..within a week I was told they could do it at my hospital but it would be better if they came down a bit on their own first,then do plasmapherisis. After about another year,they were down enough to do the plasmapherisis then transplant. That was 18 years ago. I was just told about 3 months ago its time for another transplant and that it would be best to transplant without any dialysis before. I have 2 donors who were deemed healthy enough to donate, but we do not know if they are a match.. My hospital also participates in a SWAP program so my donors could donate to someone else that they match,if they don't match me,and I would in turn receive a kidney from someone else who does match me in exchange. I have been evaluated and now am going in for a in person evaluation with the entire team. ..I know some people do really well with dialysis, but it can put a lot of stress on the body, especially over time . Blood pressure issues, electrolyte imbalance, not enough fluids removed can,atleast for me,lead to congestive heart failure , then theres possible seizures,infections,over all poorer health,exhaustion,dizziness, tachycardia etc..with transplant I felt, feel,a million times better..even now with my gfr being at 18..it was 13 but I was able to bring it up to 20 for a while with change of diet and more exercise. Back down a little but still feel pretty good. Slightly tired, but nothing like when I was on dialysis. I haven't been admitted to hospital or to the ER in years......on dialysis, I was in almost constantly. ..so I guess ,long story short,I would definitely say get the transplant as soon as your team says its time! I have been able to live a much fuller ,better quality of life, work,even have another child with my transplant! I pray to God I will be able to have my third transplant without any dialysis before! Again, I know everyone is different, but for me I'd take transplant right away over dialysis any day! I wish you the best going forward and pray you have a transplant that lasts many many years and you feel strong and healthy again!
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