Everything is happening to fast

[sadsunfl0wer17]

I’ve been told that I have 15% function last month and my Cr was about 4.9. My doctor called and said my Cr is now at a 6. And that I should prepare for the transplant within the next 3 months. During this time I feel great, I look great but on paper, on blood test I’m a ticking bomb. What were your values the last few months before transplant. Creatinine, GFR, Potassium, blood pressure??? I’m just in a panic because will I start feeling bad within these next 3 months? Tell me your experiences

[Darlenia]

Hi! So very sorry to hear of your situation. My hubby, too, had numbers in your range and was feeling relatively well until a few months before everything went upside down. He was at the transplant center for a consultation when it was discovered that his blood pressure had shot up to the 240/140 range. The suddenness was shocking. He was immediately hospitalized to prevent a heart attack or stroke. Medications failed to bring it down so hemodialysis via a temporary chest catheter was brought in to do so. When we asked why this had happened when numbers were relatively stable earlier, our nephrologist stated "kidneys can simply quit like that." In hindsight, my husband was also in denial much of the time. We should have gotten on the kidney transplant list much sooner and/or started the process for a proper dialysis port (catheter, fistula, graft, etc.) which would have prevented an emergency hospitalization and the additional steps to move from hemodialysis to peritoneal dialysis. It appears you may be close to getting a transplant. If so, that's great! Some manage to transition to a new kidney without ever going on dialysis. You may have enough time to accomplish this too. (In our case, my hubby received a kidney transplant after a year on dialysis.) Sending positive thoughts your way that you will have a great outcome. You deserve a great life!

[ArsenalFan]

My numbers right before they put me on dialysis(PD - That is the way to go). Cr 10.6 less than 10%. My Neph waited so long because I felt great worked full time still was active including scuba diving. II was on PD for a year then rec'd my living kidney from my wife back in 2013.

[OperationKidney]

Hi love, I wasn't much older than you are now when I was diagnosed so I can empathize with the toll chronic illness takes on us when we're so young. Since I didn't catch it until I was 26 my creatinine was at a whopping 19 when I finally got to the hospital. The good news is you're hearing this news now so you have time to prepare, and hopefully because you're still young your chances are finding a donor kidney will be much better than if you were significantly older. Sending so much love your way and please don't hesitate to send me a message if you ever need to talk. 💚

[PostivelyJo]

My EGFR was 4/5 and creatinine 6.80 or 680 uk. I was on a lot of bicarbonate and 2 meds for blood pressure plus a phosphate binder and an EPO injection once a week.

Reading this back I now realise things were quite bad but I never felt that ill. Looked fine but ankles and legs got quite swollen . I also needs to sleep a lot. I reckon I was a week or 2 away from dialysis when I got the call.

I suppose the last 6 months the decline did speed up .

Best of luck with it all .

[RhenDutchess123]

I knew about my Kidney Disease for 23 years...once I regressed to around 20 GFR it did go faster down to 12...I "thought" I felt fine...but my Labs were starting to show the signs , my Blood Pressure was spiking, and I did not want to get into an emergent situation....I started PD about 1 year ago...and after about a week I realised how sick I had been...I do PD at night on my Cycler and feel so great I really dont care for a transplant and all that goes with that process.., but I am also 64 and I imagine if I was younger I would consider it...If you have a Donor you may get transplanted sooner...but if you dont you may need to do Dialysis while waiting to help keep your other organs healthy and give your new Kidney the best chance...PD is gentle and easy to learn and does not damage your veins..Dont wait until you feel terrible because you dont have to...Take Care of You..❤

[DexterLab]

I have PKD, and my nephrologist was of the opinion that I could just go on for a long time. My blood pressure was under control and I was otherwise ok with a Cr of 3. Then it all changed. My Cr jumped to 3.5 and kept climbing. He said time to go to the transplant center and think about recruiting a living donor. Two months later I get my initial eval at the transplant center and they also emphasize lining up a living donor. Bunch of test and 3 weeks later I am on the transplant list. My Cr is approaching 4, and I am starting to feel lethargic and getting some brain fog. The scariest part was asking for a kidney donor. I ended up asking at my church, both because they are a friendly crowd and the kind of people that would do such a thing. Ended up with my pastor as a matching donor. Transplanted in early February 2019. Cr was up to 4.5 and I was really dragging. Church members came to the hospital to be with our families and others were praying back home. And it was a Jesuit hospital. Felt like the fix was in on my behalf.

I was better in 4 days. Cr down to 1.3, BP was fine without meds and I had bony ankles for the first time in 20 years. I am okay with the meds. My outfit did not use Prednisone.

My nephrologist said that you had to look past the lab test numbers and see how the person was actually doing. Sounds like you are doing well even with crummy numbers. But, the numbers do give a trajectory for where your kidney function is headed. If you can get the transplant before you end up on dialysis, it avoids some potential complications and you recover faster since you are less I'll to begin with.

It was such a whirlwind of activity in seven months from thinking I was ok to being transplanted. I am doing great kidney-wise, but I am really ready for this pandemic to be over. Good luck.