Just rambling and venting

My nephrologist is adamant about me getting a fistula placement for dialysis asap. He is having me apply for a program here that will help me pay for it. He also wants to do a biopsy, but that's not happening right now, I can't afford it. I had them look at my prior health records and in 2014 & 2015 my numbers were completely normal. March 2017 I'm on the verge of esrd. I'm trying to put it off, thinking there is no way I'm even close to dialysis, I feel too good! Sure I have some symptoms, but they aren't feeling like death! I got some iron infusions, I'm able to do more now. I feel like the people around me are being over dramatic, and I'm trying to to minimize it. Got to find a balance lol

19 Replies

  • I was the opposite. Felt my Dr was acting like I had a sore toe not CKD I got a 2nd opinion recently and feel much more relaxed. I don’t worry as much. You take care

  • It's easy to stress out on the details. Glad you're feeling better!

  • My doctor also has been after me to get a fistula-I fought the idea until my wife asked me to do it. I Had my fistula done about a month ago , but still need something else done to tie off veins or something .Very unhappy about the whole situation. Why is it the only answer to kidney disease is dialysis or transplant (if possible).come on can't the medical industry work on something to get our kidneys working again- In my case I don't have diabetes and they don't know what caused my disease. I hat the thought of dialysis and not eligible for transplant--if not for my wife I would just let nature take it's course- But we have to think positive and hang in there- God bless you.

  • I completely relate. My husband and I married July 2016, and I was diagnosed one year later. I scoffed at the timing. I'm not diabetic but have had high blood pressure since 2014. I do feel like it came out of nowhere, since my labs were all normal in 2015.

    One day at a time. I pray things get better for you. I've done some reading, and people say it's not so bad after the initial introduction to dialysis. I hope you find that to be true.

  • going for my fistula soon. not real enthused about it either. 62, diabetic, chronic pancreatis. then they ask how are you!.. lol.. i did not make transplant list at this time. have no other choice but dialysis. will do hemo in center, as i have no one to help with other methods. take care.

  • Hi

    It sounds like your from the America and know things are very different there, I live in the UK. My consultant didn' start talking about dialysis and fistula until my renal function was 11%. I finally had it done at 7% in June and it's still not being used. I'm like you I didn't feel ill enough for a machine to keep me alive.

    I'm struggling not now and don't think dialysis is far away. If your not happy talk to the vascular surgeon when you see them and be honest about how you don't feel ready. I did and she was really good and explained why they were doing it so early as mine required a two stage procedure with 6 weeks healing between them to get the best maturing fistula.

    Good luck


  • Thank you Charlene, Yes I'm in America, Alaska to be exact 😊 I guess I'm mainly dragging my feet until my next labs. I just need to know for myself where I'm at. I'm not ready for the transition to dialysis. I'm not sure how my life will change. I need to do some research.

    Best wishes!

  • They wanted me to have one put in way back too. I've told them I don't even want to hear the word "dialysis." I'm at 18% with one kidney and, though I feel absolutely awful all the time, I see dialysis as a last resort. Also, I've read how lots of hospitals are in cahoots with dialysis centers to recruit patients and get kick backs. John Oliver did a big story on it. I say, if your life doesn't depend on doing it, don't.

  • Yep, I got the vein mapping done too. You know the kick back theory is something I'm afraid of in my case too. Sorry you're feeling so bad all the time though.

  • I think ever nephrologist is different. I’m in the U.S. Needing a fistula isn’t just dictated by function, it’s also dependent on your creatinine, BUN levels and other levels like potassium and phosphorus. I’m end stage, and still don’t need a fistula. My function floats between 10-13%, but majority of my levels are in the normal range, so I don’t need to be dialyzed (spelling). I’ve done vein mapping so I’m ready if needed, and more than likely I’ll get one once I break under 10% function. It’s all about taking any meds prescribed on time, even if you feel good, and being religious with your diet to keep your blood levels in check. See a good nutritionist that isn’t turned off to the idea of going plant-based. You’ll be surprised by the positive change in numbers, and a boost in energy.

  • I'm definitely good about taking my medications. Trying to be careful of what I'm eating. So far the only diet restriction they've thrown at me is low sodium. I will have to read about a plant based diet.

    Have you had any issues with your iron levels?

  • Nope, I eat a variety of plant-based foods. Most of my diet is raw, but eat everything from fruits, vegetables, oats, sprouted grains, nuts, legumes, etc. I was restricted prior to my change to only 6 oz a day of chicken or fish, no pork and only 4 is of red meat a week. Even on that diet I was experiencing edema in my ankles, bone, muscle and joint pains in my lower half. It wasn’t until I changed to all plant-based that the edema went away, no more pain in lower half, more energy than before and my numbers are better. BUN was high 50’s, now down to 29, which is one point outside of normal. Creatinine went from 6 to 4.8, and function from 10 to 13.2. So it’s doing something. Oh yea, nausea also went away.

  • I think I will try this plant based diet

  • Just saw my latest numbers, BUN is down to 23. It’s probably been 10 years since I’ve been in normal range, creatinine is 4.73 from 6, and GFR is up to 14% from 10%, so it is working.

  • Any memorable sites that helped you in the beginning of learning to eat plant based?

  • I was fortunate to finda doctor who was on board with my decision to forgo dialysis until I felt it was time. I had a gfr of 11 when I was approved for transplantation and I was so happy to have the support of my nephrologist. It's important to have a team of people who respect your health wishes. It's also "better" to receive a kidney without doing dialysis first. Good luck!

  • My sister is ready to find out if we are a match. I'm having a hard time letting her. I will. But I'm not feeling great about it.

  • Hi Shey! I am having the opposite experience. Even before I was diagnosed with CKD4, my older sister would tell me she would donate a kidney if I ever needed one. Well, now I need one. Have been on PD for 2 years now, on the Transplant list, and now sis says she has read some negative issues relating to the donor surgery. I havent read anything negative, but I guess she is scared. I wish ppl knew how many functions the kidneys do for the body that will never be replaced with daily PD. I wish I could educate her, but it is a touchy subject. If your sister is offering, she must love you very much and wants to help you!

  • I have started my fistula process only because My wife asked me . I am not diabetic and have no family history of kidney disease but I am down to 11% function. I am 74 and raly still don"t know that I can be willing to live on a dialysis life still- so I know how you feel and I will pray for you and me.

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