I was at my hearing aide appt cause I've had some issue when I get a call from my kidney docs nurse. She asked me about the results of my recent 24 hr urine, a few more about symptoms (nausea, loss of appetite, some shortness of breath, little swelling) and said she'd talk to the doc. 15 minutes later she called back to say he was referring me to the transplant center! WHAT! My eGFR based on the creatinine clearance was 21. It's been steadily decreasing no matter what we've done. My initial reaction was to burst into tears but that wasn't an option cause I didn't want to scare the hearing aide tech. So I drove home and now I'm contemplating curling up into a ball and crying my eyes out. Course it may be a week or more to get a call from them and I can't really do anything until then. I'm supposed to see the dietician tomorrow but I'm not sure if I should bother at this point. Since my Graves Disease can come back if I get too stressed out I need to relax and just see what happens.
Well, well, well: I was at my hearing aide... - Kidney Disease
Well, well, well
Hi Horsie63. I’m so sorry you’ve had such an upsetting day. But before you cause yourself dehydration from tear shedding (and I don’t blame you one bit), please get a hold of your nephrologist and voice your confusion and your concerns about this. I have never heard of one with an eGFR of 21 being rushed onto a transplant list. Unless your specialist somehow may have misinterpreted something you said that caused him/her to think that you have an interest in this at this point. Get them to be clear about what you want. Don’t be pushed into anything you don’t want and/or are not ready for.
I have days like this too. You’re in my thoughts and prayers dear. Blessings. 🙏
Thanks Sammi. Transplant is the option I prefer as I really would like to continue working. I like my job. I'd rather get this done now while I'm still relatively heathy and avoid dialysis as I don't really have the friend or otherwise connections for a living donor so waiting what could be 3-5 years for a deceased donor puts me age 62-64 range. The "rush" is due to the protein leakage which going plant based, taking Losartan, has done nothing to help, and in fact it's gotten worse, even with my HBP well under control. I can't eat, I'm nauseous most days, just generally feel like crap.
I know it is sad news, but they are just preparing to get you to a place in case. Here where I am, you can't even get in to start the process until under GFR 20. It is a long process and then you wait. So be glad they are getting you going and do not fear. Frist of all, it is a precaution. it does not mean you HAVE to have the transplant until YOU feel it is necessary. There are many of us with much lower numbers who are not going for transplant until we feel it is time. I have been down to GFR 13 and i know some who are down below 10 or more. So relax, go through the tests and get on a list. It is peace of mind to have it done with. But you do not have to have the transplant right now. OK?
Hi Horsie63. Oh my! You're very fortunate - You actually have a nephrologist who is referring or arranging for you to see a transplant center! Transplant centers often refuse to see anyone without a referral or recommendation letter from a nephrologist. Sadly, some with end stage kidney disease are never given the opportunity because of underlying conditions, compliance issues, etc. So, your nephrologist feels you are a great candidate. You, indeed, may be one of those few who completely bypass dialysis via a "preemptive transplant". In our case, my husband was in deep denial and refused to acknowledge his condition. I had no idea how resistant he was to a transplant until I happened to overhear his nephrologist discussing it in a zoom meeting - "As we've discussed before, dialysis is an option but the best treatment is a transplant..." My husband instantly replied, "Oh, I feel great! I don't need a transplant! We don't need to talk about that until I really need one!" I literally flew across the room, put my face on the screen, and asked the doctor to "Please tell us more!" The relief in the doctor's voice was noticeable...and the conversation eventually ended with, "I'm recommending you (hubby) for a consult at the transplant center. And remember, 'happy wife, happy life!'" To make a long story short, my hubby did indeed wait too long to get on the list. (Denial is terrible - it blocks reality.) He was forced a couple of weeks later into emergency hemodialysis, then peritoneal dialysis. While going through all those life-altering events, he also had to navigate getting on the transplant list. It took an enormous toll on him and on me. If you can skip all the dialysis steps, you will have saved yourself a lot of trouble and enhanced your life exponentially. (A transplant, more so than dialysis, returns you to a near normal life. My hubby now has a transplant.) So put your fears away and dry your tears, and be jubilant. You have an amazing nephrologist who is leading you to the ideal outcome - carefully and smoothly and with forethought. Simply follow his guidance. Sending my expectations for a great outcome your way!
Hi Horsie
I'm sorry this has caused you such upset. However as others have said, your consultant is just thinking ahead. I have just recently started dialysis and my gfr was at 6%. Now I look at gfr levels at 21% as still being high! I was in Losartan and it did absolutely nothing for protein leakage. Sometimes when they increased my dosage my gfr would go down by 5 %. How are your iron levels? I had some shortage of breath etc and have only found out, I have been extremely anaemic for the past year. My consultant never addressed this. I know you don't want to go on dialysis, I was exactly the same. However I now realise its better to have the groundwork in place for dialysis and having a transplant. Maybe look at changing your BP medication and ee if that makes a difference. Definitely stick with the plant based diet. I hear flaxseed are good for proteinuria. However do your research first. Wishing you all the best x
Unfortunately, people often view GFR as the be-all, end-all of all tests. It's not. As kidney function declines, attention focuses ever more intensely on all the lab data - particularly creatinine, BUN, and more. As my husband suddenly spiraled into dialysis, the nephrologists attention was largely riveted on those specific factors and blood pressure; GFR (which factors in age and sex, etc.) was never mentioned. This is understandable if creatinine and protein levels within one's body, for example, are flashing high alert warnings at a given time. In my hubby's case, his blood pressure suddenly became uncontrollable; only dialysis could bring it down. Bottom line, the narrative being told by all lab data is highly important.
I think what got my neph concerned and ready to refer me was my 24hr urine results, the fact that I suffer from nausea, loss of apatite, diarrhea, weight loss, and mild swelling. I'm very small with not much in the way of muscle mass so that's why he wanted to do the creatinine clearance and that shows me at GFR of 17 with increasing creatinine at 2.42. I thought we weren't in such a hurry and never expected to hear from him until my next appt on Sept 22. Who knows. I'm waiting to see it the transplant center calls, if not I'm still in a holding pattern.
I so feel for you. The situation with kidney disease can give you highest of highs and lowest of lows. I think that's because one can indeed influence some test data through our diets and more. In my hubby's case, he managed to get off all insulin, he had low sugar levels, and GFR showed great promise. It's when our lives were turned upside down that we suddenly noticed that more factors were at play than we thought. I'm impressed with you and your nephrologist for being vigilant and doing everything possible to make things go well. Who knows, maybe you can keep that creatinine figure stable for years to come. And, if not, a new kidney may come to pick you up and give you a wonderful outcome. Everyone deserves to have a quality life.
I think it just hit me for a loop. I've been doing the plant based, mostly, probably 90/10 plant with some chicken thrown in. Taking meds, got BP under control, thought I'd at least be stable for awhile. Because of my small size (4'9" and 92 lbs) the doc was thinking the normal eGFR wasn't accurate so we did the 24 hr urine and I guess the results we're good. I've been blessed with great docs, both my PCP and the specialists I've seen, but a good part of that is them listening to me and me doing exactly what I've been recommended based on that conversation. We discussed transplant months ago along with dialysis options with the goal of hold off any as long as possible. I know my kidney disease is self inflicted as I ignored the the BP thinking it was nothing by "white coat" syndrome. I was wrong. My diet was crap full of fast food, processed foods, etc. There's much to say about getting smarter as you get older...lol. But it is what it is and I'll deal with it as best I can. Thank you all for your comments, they've been very supportive and helpful.
Hello, All I have to say after those great comments is to keep your dietician appt. You might learn some helpful nuggets you never considered. God bless.
Horsie63, we all feel what you said, it is a nightmare one after the other and we have no control. But your egfr is 21 in your case, in this group we have some less than 20 like me and others less than 10 and we all still trying hard to hang in there. I hope it is not too late about missing your dietician appointment , you may learn something promising. Don't give up just yet.
Hi Horsie63 - It will likely be a while before there is a kidney available. Your doctor is being proactive by getting you on this list. I can tell you I felt the exact same way…even told my doctor I was not ready. I was afraid that as soon as I got on the list a kidney would be available. He assured me that would be unlikely and that if I was not ready I could turn a kidney down. I was on the list a little over 2 years and never needed dialysis. Prayers for you. I know this is stressful.
You keep living your best life. I know the resisting to bust into tears feeling. On the bright side a transplant might just do the trick. Throw up some Hail Marys and try to enjoy the circus that you never bought tickets for. Prayers your way.
Well just when you think you have ii bad you call your friend and find her husband just died of a rare abdominal tumor…sick in Jan dead by may. I feel so bad for her and she lives 2 hours away so I don’t see her as often as when I lived closer.
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