My wife has stage 4 CKD. Nephrologist today reviewed blood work GFR over last 9 months - 22 on 1/27, 16 on 7/12, 19 on 9/28, 17 on10/17. I had optimistically attributed low GFR to dehydration. Dr says, OK, but trend is downward and you should get prepared for dialysis and transplant. Lots of sobbing. He suggests a fistula for which he has seen improved kidney function. Can any of you please comment on this ?
Then he suggests starting the transplant process including her identical twin volunteer. After settling down we now see his objective is to get ready now while she is 65, very active and no symptoms. Again, your comments are appreciated.
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I am there too. GFR dropped from 15 to 12 in last 3 months. My doctor before had told me we can go straight to transplant without dialysis, but he did not expect me to go down this fast. I asked if I should get a fistula now, but he really encouraged me to do peritoneal dialysis instead. It can be done at home while sleeping. He said it is easier on the body and does not remove and then replace blood. I have been researching this and think if able, I will try this route as I am 66 and want to travel to see my granddaughter often. All I can say is do as much research as you can, ask as many questions as you can of your doctor and nurses and read what many wonderful people on this website have experienced. None of it is easy. But it also does not have to be feared. I am hoping one of my sons can be a living donor. Your transplant education classes will be of great value to you. Best of luck and my prayers for you and your wife.
I can only comment on the remark your neph made as to the fistula improving kidney function. My neph told me that in studies it has shown that people who get an early fistula, for some reason, takes longer to need dialysis.
Pardon my skepticism. No, your neph, as ours is quoting some studies which builds my confidence. See bmcnephrol.biomedcentral.co.... Again - no-brainer. Since my wife has an identical twin donor we
If you go to the search on this site and search for my posts, I have documented everything from getting the fistula, transplant eval and going on dialysis. Here is the fistula link
At stage 4 is the best time to prepare for transplant. With a twin as donor, the match should be expected at perfect 5 of 5 points. You r wife is very lucky to be in this position and for this opportunity.
I am 68 years old now and had my transplant 3 years ago. I was diagnosed with CKD +30 years ago. I had a lonng time to prepare with dialysis as the initial end solution. But I found a very good nephrologist (and my medical team) who have been with me through the journey (going 15 years with tem now). He stirred me towards transplant without going through dialysis. He provided materials and links to read on what dialysis does to the other organs of the (you should be educated) in this to.
My daughter was my donor (4 of 5 points.) And we started discussion (my medical team, donor, etc) a year from planned date. We got everything prepared and went through all the process (including ethics committee approval). We decided to get the transplant in 9 months when my eGFR went down to 8 (even if my nephrologist assured me that 5 eGFR is still fine.)
And I never regretted the decisions made. I am better than ever now and almost no restrictions. I have prevoius posts on my recovery journey that you can also read. Hope this helps.
Congrats on such a successful transplant and journey That is just incredible. So glad you are doing so well. What a blessing! Can you tell me what you mean by a 4 out of 5 points. Is that regarding matching?? I am 10 weeks out from transplant and the meds are SO hard to deal with. Doing my best. I have tried to see what kind of match my Living donor was but I don't seem to get a clear answer. What should I ask specifically. It was done at Mayo and I thought they would have told me and made it very clear. What does 4 out of 5 mean? I know that I am are risk for CMV because I do not cary it but my donor does. Would have liked to have known that before accepting this kidney. Don't take me wrong, I am beyond blessed and so very grateful in so many ways. God has been so good, always. I just feel like I am in the dark abut what kind of match we are and want to get some answers. Hope that makes sense. Any suggestions would be so appreciated. Again...so excited for you and how wonderfully you have done. GOD IS SOOOOO GOOD! ❤️
Please note that my response is based on my old notes that I gathered early on when discussing with my nephrologist on how to maximize the success of my transplant. He gave me 5 points to consider.
Blood typing (ABO compatibility)
tissue typing (HLA)
Anti-bodies to HLA
Percent Reactive Antibodies (PRA)
Serum cross-matching.
You can use BARD or ChatGPT to know the differences.
I had 4 volunteer donors and by just logic check, my brother would be the best match (twins are the best, but I don't have one). My daughter was very insistent so she got the nod. And luckily, she was 4 out of 5. We were told 2 weeks before the transplant.
This meant higher success factor, less medicines, lower rejection, etc.
At this point for you, this is just "good to know" - so my recommendation is to always look forward. Knowledge by research, confering with experts, asking questions ,etc. - then digesting the info and picking the right information. That really helps a lot. I still do because I continue to have unusual "conditions" that I can't differentiate if it's just getting old or kidney transplant related. The last 3 months are of and on stomach bloating, of and on sluggishness, etc. - but they are miniscule to where i would be now with the kidney transplant. So, I move on and enjoy everyday as a blessing.
Try to eat kidney healing foods. I posted earlier. Ask about PD and doing exchanges at home. Easier on the body until transplant and I lived pretty normal. You just need to stop and do exchanges. Mine were pretty quick but routine is key. You can also keep moving just take your bags with you and no machines needed. If power goes no learning curve either.
It is scary but you are blessed in a match if you have a twin and they are willing to donate. Usually a great match and you may be able to avoid diaylsis. Your doctor and hospital are the keys to your success!
Good luck and may God bless and keep you!!
I did PD 16 months then received a kidney transplant as my husband donated that put me at the top of the list. I used NKR they matched me and I am almost 2 years post transplant 12/14/23.
That is wonderful. A huge congratulations! And to your sweet husband for donating. That is so amazing and such a blessing. May I ask...did you go through any anxiety or depression, doom and gloom from the meds. I am having this almost every day and am praying, reading my bible, trying to overcome these meds and effects. My dr is changing me to envarsa instead of tachrilimus regular to see if it will help. Thank you for letting me ask. Trying to find answers. God bless!!
Sounds like my same situation had the transplant last January from a living donor. Prepare for lots of medication that they use for anti rejection etc. It took me around 6 months to adjust to all the meds and to start getting my energy back now at 10 months I feel great again good luck with your journey. .
That's great! Congrats! You are a trooper!!! I am almost to the 3 month mark but these meds have made me feel like there is a black cloud over my head of doom and gloom. Not like me at all. I don't know how to stop it. My Dr is going to start me on the long acting envarsas instead of my current tachrilimus. Praying that will make a difference. Did you have any anxiety, depression, gloomy feelings or dread every day due to the meds. Thank you for all your help. Trying to find answers. God bless you!! 😇
When my GFR was dropping, and they told me I should start preparing for transplant, get on the list for donors and prepare for possible dialysis, my GFR was in the teens as well. I did get on the list for donor kidneys because I was told it's about a 5 year wait. I however was feeling good (or so I thought) so I was kind of in denial that this was actually going to happen and waited too long. I ended up in ER & Hospital when my GFR Dropped to 3 and they started me on emergency dialysis. I was not prepared ahead of time and should have listened to the doctors. It was a world win of events from that time on. My family and friends immediately began the testing process to donate, and they were wanting to set me up for a fistula (as they did a temporary access for urgent dialysis). Because I was already on dialysis, they expedited the testing and was fortunate that one of my daughters was almost a perfect match. After just 5 months of dialysis, I had a transplant. It will be 1 year on December 8th. I never had to have the fistula but did dialysis for 5 mths (a fistula I believe needs 2 months before it can be used, that's why they opted out since I was getting a transplant soon.) I am feeling better now than in a long time. I never realized how sick or bad I felt until after my surgery and reaping the benefits of a properly functioning kidney. I would highly suggest to listen to the doctors and be prepared. Start looking for donors and have them start testing (it is a long process) I wish you all the best!
Congratulations on your match. In the mean time I found on YouTube a renowned Nephrologists Dr. Sean Hashmi. Check him out. How to keep your kidneys now and after a transplant.
I'm a little late in responding to hour post. Dialysis and transplant, of course, are treatments to take over kidney function. A transplant is considered the best option - a human organ always does a better job than a machine. Your nephrologist is right in urging your wife to skip dialysis if possible and go directly to a transplant. I wish my hubby (with the kidney issues) had done that. But, if a transplant doesn't happen, dialysis can either take the form of HD (hemodialysis in-center or home) or PD (peritoneal dialysis is in home or work). Please note that not all dialysis centers offer or support all forms of dialysis! So if a nephrologist is affiliated with a dialysis center with limited offerings, you may not be given all the choices. HD cleans the blood by accessing the blood vessels and PD cleans the blood by using a dialysate in the peritoneal cavity. There are some who believe that starting dialysis (either PD or HD) sooner than later helps to extend the natural kidneys performance or the patients well-being. But there is also information indicating that beginning dialysis early can also lead to an earlier death. Apparently some of this involves how eGFR is viewed and so on. (My hubby's dialysis determination was based not on eGFR but data re creatinine, BUN, and more.) You can read about debate here: acpinternist.org/archives/2.... The advice I would offer is to really study up on the various types of dialysis so decision making is well thought out. My hubby experienced both HD and PD. He switched to PD at the recommendation of his transplant center. The surgeon preferred patients be on PD because it didn't involve accessing blood and therefore it was less likely to lead to atherosclerosis in the arteries needed for transplant. As a diabetic, this was a particular concern to my hubby. Here's a wonderful website that presents the various forms of dialysis as well as a nice questionnaire to help you and your wife determine the best form of dialysis for your wife. lifeoptions.org/living-with... I'd like to state again that a "pre-emptive" transplant would be, clearly, the very best outcome of all. You're a wonderful, supportive spouse. It's really hard to be focused when things go upside down. But you've found your bearings! You're wise in asking questions and researching matters. Truly, lots of problems (and steps) can be avoided by simply being aware and proactive. It pays dividends. Thankfully, my hubby received a deceased donor kidney after a year on dialysis, so life is good for us right now. I think you and your wife will have a great outcome too. As one caregiver to another, I truly wish you and wife the very best!
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