Delaying dialysis: I'm 64, with CKD. Good on... - Kidney Disease

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Delaying dialysis

fleo
fleo
25 Replies

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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Philipjm

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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steve680
steve680
in reply to Philipjm

"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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Philipjm
Philipjm
in reply to steve680

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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steve680
steve680
in reply to Philipjm

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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WYOAnne
WYOAnneNKF Ambassador
in reply to steve680

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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steve680
steve680
in reply to WYOAnne

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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WYOAnne
WYOAnneNKF Ambassador
in reply to steve680

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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Bassetmommer
BassetmommerNKF Ambassador

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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Mr_Kidney

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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fleo
fleo
in reply to Mr_Kidney

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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Mhusband27

I have not been on this board long enough to know, and if you dont mind sharing, Mr_Kidney, are you on dialysis now? What modality? Are you on a transplant list?

Have you heard about the advances the medical arena is making in transplanting organs (pancreas/kidney) from deceased, Hepititis C people? Johns Hopkins has successfully transplanted 10 kidneys.

I have an appointment this week to talk to a Hepatologist at my Transplant Center in Atlanta to discuss the study. I am thinking positive since they have no O+ blood types currently in the study.

During a recent GA Transplant Foundation seminar, I learned Type O+ blood type persons are waiting 8 years to receive a deceased kidney in the GA area. Florida is getting faster transplants. My renal nurse said a PD patient of hers (in the Atlanta area) decided to get evaluated at Vanderbilt and was transplanted in 90 DAYS. Incredible. I need to find someone who lives in Nashville for the aftercare, but Vanderbilt is only 3 hrs 45 mins from ATL (if I can get out of Atlanta fast enough! The traffic here is horrible!!).

Just some late-night info!

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Mr_Kidney

Currently, I am not on dialysis. I have done a lot of research on CKD in the 18 months since I found out. I went to the Kidney Smart class about a month after finding out and that provided me with a wealth of information, including the various modalities I would eventually have to consider. When I was satisfied that I was mentally ready to delve into the prospect of dialysis I looked into all types.

The first one I considered and immediately discounted was In-center HD. Why I decided it was a "No" for me is the restrictions. A lack of control over my life was never going to be a viable option for me. Their schedule, their time, their rules, their atmosphere, and there is no way I want to turn my health and my life over to someone else for control. I'm retired and I enjoy my life. I travel a lot. I have an RV and I can and do take off at any time for a few days, or weeks or even months to go where I want.

PD was too cumbersome for me and it was also too much of a disruption to my daily life. It didn't seem to be as effective and long-term to seriously consider.

What I did find that would fit into my lifestyle with minimal disruption and the least controlling was Home Hemodialysis, HHD. I did my research, read a great book called "Help, I Need Dialysis! How to have a good future with kidney disease" by Dori Schatell, MS and Dr. John Agar. I've spoken to many folks doing in-center, PD (all forms), nocturnal HHD and in-center, and HHD. The ones I've met and talked to that were on HHD are the healthiest and happiest with their choice. There are too many reasons to discuss here as to why but it just seemed to fit me. I was fortunate to be invited to the homes of two folks (at two different times) doing HHD while each was dialyzing. I'm still hoping to contact someone who does HHD from their RV when they travel but as of now, that hasn't happened. I've spoken to my doctors and all are on board when and if I should have to go down that road. I still haven't ruled out nocturnal HHD but frankly, it seems a bit disconcerting to my mind to be asleep while I dialyze and I'm not sure that would be something I could do. At least not now.

Transplantation was not something I could seriously consider. I did my research and spoke to my nephrologist and for personal reasons, it isn't something I could consider. But hey, that's me.

I've heard of the studies you mentioned, my daughter actually lives in Nashville, and I have extended family and a grandson who live in Atlanta, but as I mentioned, transplantation is not something I could seriously consider.

Good luck as you investigate the opportunities open to you.

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Mhusband27

Thank you. You are so eloquent in your writings!

I am single and live alone, so no form of home hemo was available to me (they require a partner/roommate...whatever).

I considered transplant b/c I am tired of the nightly cycler dialysis; ordering supplies; stacking boxes in my bedroom; being so concerned about my diet (cooking is not my strong suit); tiredness...blah, blah, blah.

My brother (ex-military and lives in NC) backed out from being my transplant care helper; my sister (also in NC) backed out from being evaluated as a donor. It is what it is.

You have a GREAT attitude and have provided so much information in a kind and empathetic manner.

I wish you a Happy Holiday and healthy New Year!

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Mr_Kidney

Thank you for the kind words. If I can go a bit further in my choice of HHD. I don't know how much research you have done but let me share some additional information. Doing HHD does not always require a care partner. If you use the "buttonhole technique" (I've attached a link about it at the end of this post. It's as simple as putting in earrings through the "tunnel" created from the piercing. It's not the same as using injection type needles. I've seen someone using it and like the article states, the most important thing to learn is the angle you enter the AV fistula for each treatment. The rest of the knowledge and expertise comes from successful completion of the training and lots of practice to become comfortable. If you want more information on this let me know and I can give you the contact information to have it sent to you.

kidney.org/atoz/content/but...

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Mhusband27

Thanks. I think I'll chk out the book you have mentioned a couple times.

I see my Nephrologist on Tues (best doctor I've ever known). I will read the link you sent me and then inquire about HHD with my doctor. I am one of his most compliant patients and he tells me b/c of my excellent labs, it has put the FMC dialysis center where he is also chief Nephrologist in the rank of Top FMC Clinic in Atlanta (calculated with averages of albumin, phosphorus, etc. numbers). I am saying that only to emphasize that he trusts me and knows I am mechanically inclined. I agree with NO in clinic Hemo. I see the folks sitting in their recliners 3 days a week, and without being too judgmental about the view, it is definitely not for me.

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Philipjm
Philipjm
in reply to Mr_Kidney

Hi MrKidney,

I started on CAPD 3 years ago and moved to HD after 18 months due to a peritonitis infection, bad news!!!

Started in centre HD 3 times a week, within in a month I asked to move to home HD with nxstsge machine.

6 weeks later installed at home, 5 times a week for 3 hours at a time to suit me.

Within 3 months I changed to nocturnal hhd, every other evening for 7 hours while I sort of sleep.

I get 115 litres of clearance each session which is almost as good as a transplant, I do now have choices, transplant or continue hhd.

My bloods are really good now, live an active life, can travel with my machine with a little organisation.

Going to Australia later this year.

I do have control over my life now and consider myself to be normal, whatever normal is!! Best wishes on your journey., stay positive and enjoy life.

Philip

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Lbw62

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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Mhusband27
Mhusband27
in reply to Lbw62

How old is your daughter? Is she doing well?

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Lbw62
Lbw62
in reply to Mhusband27

5 weeks post transplant tomorrow. So far things are heading in the correct direction. Fingers and toes crossed and continued prayers for a full recovery so she can lead a healthy life! Wishing you all the best!

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fleo

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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Margie5967

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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fleo

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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rabbit01

I am currently at 12% and have selected PD when the time comes. I see the PD surgeon on 8th Feb so imagine that I will be fitted up with the pipe work for dialysis after that. I had to go sick from work since June as I was feeling very tired and sick and have been breathless for a couple of years so you are doing very well not to have any symptoms. That said I am with you in that I intend to delay going on it unti I absolutely need to. I am only 52 so I need to return to work and am hoping that once I am on dialysis I can do that.

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Carillon

Stay off as long as you can. Watch your salt intake. Lose weight and stay fit! Good luck. Ps I’m in the same boat!

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