I’ve had my kidney transplant - living, from my mom, for 32 years. I know that’s amazing and I’ve been so incredibly fortunate thus far. But I think it’s starting to fail, my GFR just dropped to 29 which puts me in stage 4 ckd after being in 3a w/ a creatine hovering 1.5 for oh probably over 15 years. Now it’s 2.18 and BUN also jumped to 50. I’m terrified. The fear of getting to this place where it’s failing but not quite transplant level terrifies me. My mental state isn’t good thinking of what’s in store for me and how hard the decline is going to be. I live a very active life, I run, I hike, and I love to travel, I’m less than 2 years married and we don’t want kids of our own so my entire life, all I want to do is travel and explore. I’m only 37. Im terrified all this is going to get taken away and my life is going to turn into hospitals and dialysis and feeling like sh*t and that’s not a life I want. This state of limbo where I’m not bad enough to get on a transplant list but just waiting for my health to deteriorate is leaving me feeling very helpless and depressed. I don’t know what to do (my anxious brain likes to be proactive). Any support or advice is greatly appreciated.
Terrified - just dropped to stage 4 CKD - Kidney Transplant
Terrified - just dropped to stage 4 CKD
I feel everything your saying and going through God Bless btw on ur transplant 32 years that's amazing mines is 23 years already and I'm in the same boat at u at stage 4 is not easy im so worried too scare I have been living my life so normal excersing being active is hard when the dr told me I reached stage 4 I have lost weight and don't really do excersise anymore I'm worried I don't wanna be on dialysis I'm refused it . Thankfully my husband helps me to be positive but there are times that I can't not deal. But anyhow I wanna wish u the best and be strong and hope everything would be ok
thank you! We can do this and are lucky to have someone by our side - my husband provides the positivity too lol
Look forward to the second time! You (both of you) did so amazingly well the first time and the second time you will only get better outcome! Believe in it!
I do! It’s the before and immediately after next transplant part.,.I grew up with my mom told me I was a completely dif child post transplant 
Thanks for the positive vibes!!
I have not had a transplant and I am on haemodialysis. However I get how frightened you are at what could be ahead of you. My advice is to start eating healthy now. Be very strict with everything you are eating. I know you probably are, just reading your amazing activities. I would then just concentrate on enjoying these things you love doing. I know when I look back to when i was at that stage, I was consumed with what was going to happen next. Read up in everything, so you know what could be ahead but keep living your best dam life. Yes your future might not be an easy one but you will just get on with it. It's always fear of the unknown. Once it faces you, just get on it with it. I don't mean to sound harsh but it's the reality. Every mountain on this blasted journey, seems impossible but you just keep taking small steps until you conquer it. You are young and you have a lot of living still to do.
Good advice, thank you
What you are feeling is totally understandable. However, do not let it ruin your life. Take charge of your diet. NO red meat, no processed foods. No additives, keep sugar in check. Eat as pure as possible and whole foods. Watch salt intake. Limit your caffeine and alcohol or anything that would stress the kidneys. Read labels on food and look for the least additives. I was told in 2018 that I would be on dialysis in six months. Just by changing up my diet and lifestyle, I stayed away from dialysis for six years.
See if you can line up a donor now. You know how long the process takes. I know this is not what you want to hear, but they make equipment now that allows you to travel with your own dialysis equipment.
That’s amazing to hear and good advice, thank you!
Hi, Don't panic. My gfr was 29 and my kidneys lasted another ten years. Enjoy everyday and when the time comes suffer a bit of dialysis and get another transplant. Positivity is your best friend.Good luck
Sean
Also good to hear! Thank you 🫶🏻
understanding how it can be frightening but remember stress isn’t good for you either will bring you down fast . I as someone mention held dialysis off for years I even had nurse come to my house five years before thinking I would start dialysis then but I did not and those years let me travel to Europe . I’m on dialysis now I can’t do all that I did but I still am able to do things . As soon as you get to 20 percent get on that transplant list wow what a blessing 32 years yes start looking for donors. Now some MN at not match I have ha
D six people try to donate but i am a gard match with high antibodies . I try not to let that get me down I try to think wow these people were willing to. Give me part of themself they tried how wonderful is that . Hopefully you will stay in stage four for a long time I know I did my ckd is due to pkd so it is an inherited ckd nothing I could do to stop it . But I could do thing like watch my blood pressure and diet and excercise there always something we can do to help us along the way . We have to take control of our bodies and it ok to cry to yell to be mad let the stress out as I said at beginning stress is not good for us .
Beachgirl has great advice. Please hop on the transplant list as soon as your eGFR reaches 20. There's a chance you you can go from one transplant to another without dialysis. When my hubby went into dialysis, his eGFR was 6, his creatinine was 8, and his BUN was over one hundred. A year later, he received a kidney with issues and now his creatine hovers around 1.7 and his eGFR is around 50. His team is happy with this outcome since his numbers are stable. Your current situation offers a good opportunity to garner more time on your existing kidney - through diet, exercise, medications, etc. Some diet changes may affect other organs. So, make sure your doctor approves of any diet changes you make. And stay positive - I've run across people with a second and even third transplant. I remember when only dialysis was available - transplants didn't become popular until the 1980s. Research is ongoing and strides are being made in both the biological and mechanical arenas. So living in the 21st century is a very good thing! The next few years and decades may well be transformative. Sending lots of optimism your way!
Thank you for your advice- and hope! You sound like husband about all the advancements we hope to have in my lifetime
just curious bc I’ve seen different things even on here… what diet or diet changes do you recommend or have been told? I rarely eat red meat. I do have a sweet tooth but in general I try to eat whole foods, we almost always cook our dinners, keep a balance of macros and limit super processed things (but I have a weakness for tortilla chips lol). I don’t necessarily watch my salt bc I don’t have high blood pressure and I workout/sweat a lot. I’ve only ever been told not to have grapefruit.
Lol. We've been told about all sorts of diets - it's enough to make you go crazy. The only diet you need to go on is the one your labs tell you to go on. If your labs are in the normal range, particularly re your electrolytes (sodium, phosphorus, calcium, etc.), then you don't need to make any changes at all. My hubby, for example, has diabetes. When his labs indicate he has issues - he restricts his sugars and carbs. He also had high blood pressure so his sodium intake was restricted. Consequently, keeping sugars, carbs, and sodium in check became his personal diet. Because of his immunosuppressants, he also can't eat grapefruit and star fruit. The health reports point the way. I learned the hard way. I thought I'd be a supportive wife and took out sodium out of our meals, I suddenly passed out in public. My personal doctor was shocked I had done that - my sodium was never a problem. So we are very different. Keeping things in the normal range is the way to go. It's also to get your doctor to approve what you're doing. Often, bloodwork may need to be done to make sure nothing goes upside down. Hope this helps.
hi. I had a similar situtaion to you. Had a deceased kidney tx that lasted about 30-31 years before I needed to go back on dialysis. I would echo would all are saying about getting on tx list as soon as gfr is 20, but mostly just try to continue to enjoy your life right now. Travel, have fun, go out, check stuff off your bucket list, etc.
Based on how active you are, it sounds like you are still feeling well which is great. Things started sucking a bit once anemia made me exhausted, even with epo shots. That was probably the hardest thing for me. Working full time when I felt like crap. And Fear of the unknown. I was a kid when I got my first tx. Now I would be doing it all on my own as an adult, which was scary. And something none of my friends could relate to.
Also I would get educated and figure out what type of dialysis you want to do when the time comes. I chose PD as that’s what I did as a kid- I hate needles and hospitals/clinics, was scared of Covid, and knew I would have to drive myself around as I live alone.
I had some setbacks w pd dialysis but am glad I chose to do it dialysis at home. It made life feel more normal, and they even allowed my cats to sleep with me as long as I locked them out during connect/disconnect. They say u can travel while doing dialysis but honestly I never did. Anxiety over missing a kidney call and road trips w equipment seemed too overwhelming. I was on the list about 4 1/2 years, and on dialysis the last 8 months, so even once gfr dropped to 20 I still had several years before needing dialysis.
I think being on the tx list and getting a bunch of kidney calls where other ppl ahead of me got it was probably the hardest part of all of this. Tbh after a while I didn’t actually believe I would get a second tx and sort of was just surviving there for a bit. But then I got the actual call, and have been doing well the last 1 1/2 years with my second new kidney. If u have a possible live donor that is amazing and something to explore more. A friend and my brother both offered and then changed their minds before even getting tested when it became real which was very hurtful at the time, but my first tx was a deceased donor and that one lasted over 30 years so…
Anyway I am so glad I never put stuff off like traveling abroad, etc. I know it’s easier said than done but plan for the future yet live in the present. No one is guaranteed a tomrow so live it while you can! The mental part of all of this is honestly the hardest part. As someone who has suffered from depression on and off my whole adult life I considered not doing dialysis when the time came, but am so glad I stuck it out thru the crappy parts to get another second chance. There were many nights while on dialysis where I would say out loud “ I can’t do this anymore” and yet somehow I did, and there was a light at the end of the tunnel…
Hope this gives you some hope but also perspective about what it was like for me. You are stronger than you think. Hang in there.
Hello SOct91, I'm so glad you got so many thoughtful responses. I very much understand your situation: I, too, have my mom's kidney and a couple years ago my function started to decline. I've had my kidney for almost 28 years and am already in stage 5; but I do feel lucky my mom's kidney lasted as long as it did. I've gone through, still going through, the same emotions it sounds like you're going through.
I don't have a lot to add that others haven't already said (living life to its fullest perhaps being the most important! but with regards to eating well I did want to mention that I found a private group on Facebook called "Natural Kidney Journey" which has really informed the way I eat. I don't follow their way of eating fully--it's quite limiting--but between what I learned there, my own reading online, and consulting with a kidney-savvy nutritionist I've concocted my own way of eating that, though isn't improving my kidney function, may be causing the decline to be delayed a bit.
Sending much warmth to you!
Don’t fret it will only cause it to deteriorate faster rather than worry step back and Thank God , then make sure you hydrate, hydrate, hydrate and maybe give the kidney a little break. I’m in the same place was down to 18% and went thru getting on the list. I thought all was good and for some reason I ended up in the hospital with dehydration which was the best thing for me as I learned that I wasn’t drinking enough water- 8 -10 glasses a day it’s really hard but you may find if you do that count will go back up. Good luck I hope this helps. - and I hear you I’m scared too- the only difference is I’m 64 and will only be able to get one more kidney - even scarier.
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