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Kidney Disease
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Delaying dialysis

I'm 64, with CKD. Good on sodium and potassium, but high in creatinine at 7.0,GFR around 10. Nephrologist wants to proceed to PD but I have no symptoms (fatigue, edema, nausea, shortness of breath, etc) and feel good. I'm okay with having surgery for access but want to defer dialysis until the ckd had an effect on my life, work, and ability to function, then proceed to dialysis.

Any thoughts are appreciated.

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Hi Fleo,

You do have a very positive attitude which is the best medicine.

I started pd at 10% and after 18 months started HD, then home HD and now nocturnal dialysis which is as effective as a transplant!!!!

Dialysis transformed my quality of life, I have never felt ill but I did notice a huge difference within 1week of HD, this nasty illness creeps up on us and we do not know we are poorly.

I want on the transplant list at15% egfr with a hope of a transplant before I needed dialysis. Been for two but at the 11th hours was a no go.

You need to work with yiur renal team and listen to their advice but the final choice will always be with you.

I wish you good health on your renal journey.

Philip

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"nocturnal dialysis which is as effective as a transplant!!!!" I understand, but dialysis is never effective as having a new kidney; dialysis does not make new red blood cells. I'm glad you're doing well.

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Hi Steve,

You are correct, nocturnal dialysis is so much gentler on the body and does give excellent results, transplants are not guaranteed to work and for some people does not always work well and many can have a bad experience coupled with the fact you have to take really powerful drugs for the rest of your life which can have their own effects on your health.

I was just expressing my feelings that I now have choices

Philip

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You're right. Transplants are not guaranteed to work and the drugs you take for it can cause a lot of side effects, including cancer. Glad you're doing well on dialysis.

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Please realize that just because there are some people out there that think a transplant is not for them....due to immunosuppressant use long term and a threat of cancer......does not mean that for the majority of us it isn't a TRUE GIFT OF LIFE!! I am living WELL 19 years post transplant with a kidney that worked right away, with a steady creatinine of 0.9 and no sign of any cancer. Just because it does happen don't assume it will happen to you. Remember......have a positive attitude!

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Thanks for the information. I just had my transplant evaluation yesterday and got approved to get put on the transplant list. Congratulations on your great success with your transplant. If you don't mind me asking, did you have a live donor?

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My transplant was from a 16 year old deceased donor. I was told that deceased donor kidneys usually stop functioning in 5-12 years and I would need another transplant. And here I am 19 years later and going strong! Best of luck to you.

Keep us posted.....

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It is good to be prepared but the decision is yours. But make sure you are informed about the consequences of delaying the dialysis. There is a lot involved with becoming toxic and the stress on the body. See if you can go to a center and see what is involved. Get the information about having home dialysis. There was mixed reviews that I found when researching information:

academic.oup.com/ndt/articl...

sciencedaily.com/releases/2...

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You seem to have things in hand and so far have been given very good advice. Normally, I don't suggest books and such but this sounds like the right time and place. When I was diagnosed with CKD almost 18 months ago I did my research. My GFR was 32 and I thought dialysis was on the horizon. Through webinars and newsletters from various organizations, I came across this book.

Help, I Need Dialysis!" How to have a good future with kidney disease by Dori Schatell, MS and Dr. John Agar. I bought it through the Medical Education Institute, Inc. It's textbook size with about 14 chapters. They range from Chapter 1 Become Your Own Expert to Chapter 14 Resources. In between the chapters deal with how your kidneys work, how dialysis works, the various modalities for dialysis, choosing a clinic, Care Partners, and How to Protect Yourself in the Hospital.

I've been through the book twice and will be going through it again in the coming days. The resource section has a wealth of information and contacts (phone numbers and websites) for any and all issues we face as we work through CKD, up to and including Dialysis.

There is no slant to the information in the book. It provides all the information you need to guide yourself through this process and for me it was beneficial. Hope it helps.

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Mr. Kidney,

Thanks for the reference recommendation. I have found myself reading numerous books and reference material with much contradiction. I will check it out as I move further through this journey. I believe I am prepared for my meeting with the vascular surgeon next week to discuss access. My nephrologist is recommending a fistula as well as the PD catheter (primary) to have the fistula as a backup if the PD catheter fails or gets infected. This seems logical to me which I will probably agree to after talking to the surgeon. Since I have feel good I'm looking to defer starting dialysis and would like to have the surgeon do a "buried" or "embedded" PD catheter but am not finding much information on the subject. I trust my doctors but having been in healthcare for over 30 years I know the value of knowing your options and being prepared to make your own decisions.

Thanks,

Fleo

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My daughter has creatinine at 15, GFR between 3-5. She was ok not working and just resting at home. Given that family was ruled out as donors we started the vein mapping to prepare for a fistula. She had no symptoms at that point but given it can take a few months for the fistula to heal. We got a call for a kidney and are almost 3 weeks post transplant. So I would say start the process but delay as long as you can as long as you feel ok. Best of luck!

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Lbw62, thanks for your response and encouragement. I am comfortable with being prepared for what is surely inevitable. Your daughter had an awesome outcome, hope it goes great for her with the new kidney.

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Hi Fleo,

I am CKD 3.

Creatine 1.24.

Bun 14

GFR 57.

Would you mind sharing what your GFR was at the time that you were diagnosed?

Would you mind sharing your story?

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Margie,

I am happy to share and hope it is helpful to you. I'm a 64 yr old male, diabetes for 20 years, about the same for hypertension. Both controlled.

In 2012 I had routine blood test for my primary physician (Internist). My labs came back high in Potassium (5.6), Creatinine (1.9), BUN (80). Prior to that everything was in range except my A1c which was 9.0. Well, my doctor called me and asked me how I was feeling, I said fine, he told me to go directly to the ER due to my labs, which I reluctantly did. They did all their testing, the new labs were slightly better, but still diagnosed with acute kidney issue, hyperkalemia and with a lecture about taking potassium supplements and diet (I was on a high protein diet) they let me go home.

My Internist referred me to a Nephrologist and I was diagnosed with CKD III even though my Potassium and Creatinine dropped back in range, but still on the high side. After freaking out a bit about having kidney disease I was off to google. I became more conscious of my diet and started learning about CKD. Also, completely stopped taking all NSAIDs, I so wish I could take back the habit of frequently taking Advil for minor aches and pains, big mistake.

Through 2012 - 2015 I hovered right on the line between CKD III and IV, my creatinine up slowly near 2. A1c was compliant at 6.2 still had hypertension. The prior years of diabetes and hypertension along with over use of over the counter medicine had already damaged my kidneys. My diet got more focused, lowering my protein and potassium intake. Phosphorus, calcium, and albumin were all still in range. Carried on do some things to help my kidneys but could have done more.

2016 I had further upward creeping in my creatinine in the 2.6 range, no issue with sodium or potassium, Nephrologist send me for a renal ultrasound which came back clear of kidney stones or obstructions. Next was an MRI which was unremarkable. By the end of the year my creatinine was at three and on New Year's eve I had a renal biopsy which just confirmed that the damage to my kidney was due primarily due to diabetes along with hypertension, the diabetes very much in control, less than 6 A1c, hypertension was still elevated even with BP meds (stressful job).

In 2017 I was pretty stabilized at CKD IV, trying to be compliant, but began feeling very tired with shortness of breath, a bit slower mentally, etc. I still worked in my business 50 hours a week or more but it was a real grind. My Nephrologist sent me to a Cardiologist (Stress test, EKG, EGG), a Pulmonologist (lung test), and radiologist (chest x-ray). At this point I woke up and went back and looked at all my labs since 2012 did some simple research and noticed my CBC labs (Complete Blood Count), specifically my Hemoglobin, RBC (Red Blood Count), et al trending lower and lower. I was focused on the Hgb which had stayed around 11.5 for 3 years (already anemia, then started dropping to 10, 9.2 then 8.5 then I went to my doc and asked for a new CBC. My Hgb had dropped to 7.8 which is close to blood transfusion territory, and I felt like crap. My doctor had missed the fact that I had anemia, not sure how as it's a common illness with CKD but I suffered for 5 months. Immediately started on a weekly treatment of Procrit which help my body produce the red blood cells that my kidneys were unable to generate. So a weekly trip to the doctors, blood test and an EPO shot, in a few weeks, I started feeling better and better. If my Hgb was over 11 I felt great, full of energy, if my number was below 8.5, felt sluggish.

2018 on Procrit, creatinine again was creeping up in the low 3s potassium, sodium good, albumin dropping just under the lower end of the range, calcium just under range, and for the first time phosphorus was over just over the high, These numbers put me solidly in CKD IV, which should have jolted me but I was feeling good, taking my medicine and doing some of the things I needed to do, then came June 2018 and my creatinine was at 4.1, albumin low, phosphorus high, calcium at the bottom range, sodium and potassium in range, Doctor was a bit concerned, 24 hour urine test, a number new renal test, HIV, Hep C, etc. I didn't get my next labs until mid October (the delay was on me and other distractions). The next test came back with creatinine of 7.1 and a GFR of 8, I freaked and so did my doctor. New renal panel 3 days later, still had a GFR of 8 (Stage V) , got another renal ultrasound then another round of test shortly before Thanksgiving. My doctor was concerned I was making a 2,000 mile drive (RT) for TG holiday and made me call him before leaving as he expected for me be sick and having. I felt good and had no problem with the trip. Took another renal panel before going and had an appointment the day after I got back from my trip.

Creatinine 7.0, GFR 8, phosphorus 6 still okay on sodium/potassium, Now my doctor was concerned talking dialysis, setting up a meeting with Dialysis center and a vascular surgeon. Now I was way down in the weeds doing research, reading books, , academic abstracts, everything as it hit me what was coming. Once I had a very basic understanding of the dialysis options (in center, home hemodialysis, and Peritoneal dialysis) was more comfortable. I had read a few books along the CKD highway so I wasn't too surprised, but it I a shock to suddenly be facing a major life event that will affect not only your life but others close to you.

I had the meeting at the dialysis center which is very basic if you had done any research but still informative as you see the various equipment and PD catheter. I got the pitch to use the services of the center and left, then got a call from the vascular surgeon the next day and made an appointment, I decided to go the APD (automated Peritoneal Dialysis) based on a host of reasons. My surgery is schedule for early January. I still don't have symptoms of kidney failure, I did start having itchy skin due to increase phosphorus, but with taking tums with meals has that under control.

I'm getting the PD catheter access surgery to be prepared when I start dialysis and I put off the surgery for an extra two week, which is a risk if I need dialysis sooner than the catheter is ready and they have go have a temporary access through my neck, but I really don't want to start dialysis until I'm having issues. I own my business and still work full time so I'll stay the course.

Regrets:

When I first discovered I had CKD (Stage 3) I wish I had:

Taken the disease more seriously, immediate dietary changes, immersed myself in learning about the disease, make lifestyle changes, thrown out all over the country pain meds, learned about all the important labs, advocate for yourself, develop a strong relationship with your Nephrologist and if they aren't a good fit, find a doctor that fits your needs. Vet what you hear, from doctors, friends, on-line, everywhere. You get a lot of inputs, and there are many different options, so you needed to be educated enough to understand the issue and choose what you want to do. I'm talking to myself as much as you,

Probably most important is a step you have already taken, joint group and forums of people who are experiencing CKD and have personal knowledge of the disease and have so much experience. I've been on this road for six years and feel like I'm just getting to the starting line, now the fun starts. I only joined this forum a week ago (my first online experience with others). I don't know how my situation would be different if I had joined 5 years ago, but I have to feel I would be better off. You will do well to engage with and listen to the experiences of others, that is my plan.

Lastly, I'm learning that being and staying positive is a major trait for a positive outcome, that is where I'm at now, trying to get that mindset and to keep a since of humor.

Hope that helped. I apologize to all the more knowledgeable folks on this forum for any misspelling or inaccurate use of medical terms. I didn't check my records so any lab numbers are from memory,

Good luck!

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