I am female, 72 years old with high b.p. and type 2 diabetes. My gfr is 17. Although not needing dialysis yet my kidney team has been providing me with great info on dialysis and supportive non dialysis. At this point, I am leaning toward non dialysis. I am wondering if anyone in this forum has chosen this route.
I feel blessed to have found this site and think you are all so kind, non judgemental and helpful
Welcome to the site and thanks for nice comments. I am 79 and at level 3b. There will likely be others in your situation to answer your question. Am sure it is a hard decision to make.
It certainly is a hard decision. Mr_Kidney has made some very valid points and I will read the book he suggested
Hi and welcome,
I hope this helps you. Like you I also have T2D and HBP which caused my CKD. While I was researching the ways to slow the progression of this disease I was also checking on my options. I found a book called, "Help, I Need Dialysis! How to have a good future with kidney disease." The book was written by Dori Schatell, MS and Dr. John Agar. The book does not offer one modality over another. It offers you the pros and cons of each method available. I ordered it from Medical Education Institute, but it is available from Amazon and it is not expensive.
I have a home on a large piece of land which I've turned into a bird sanctuary, and I enjoy traveling in my RV. I didn't want to lose the ability to enjoy those things. Reading the book cover to cover, four times already, I made the decision that should I ever need dialysis, I would select HHD. After discussing this option with my nephrologist, we both agreed that it would fit into my lifestyle with minimal disruption. So far, after 3+ years I've slowed the progression enough to where I don't worry about dialysis as much. It's very calming to know that should I ever need dialysis I have options and don't have to give up my life or my current lifestyle.
Again, I don't know your personal situation, but it might be a good idea for you to take a look at this book and see how it fits into your lifestyle and whether or not it provides you with viable options.
Best of luck.
Thank you so much. I will order that book. I hope you continue to enjoy the lifestyle you have created
Thanks Mr K. I have downloaded it to my Kindle from Amazon. Best to be informed for the future probability and not be in denial.
I fully understand. When I was diagnosed and then began my research I was amazed at how much I depended on the doctors to be open and honest with me, and they weren't. Once I got over the shock of that realization I started implementing my own ideas to stay on top of my health. I built a care team, started tracking my labs with a spreadsheet, and I went a step further and looked into my options if dialysis became a reality. It's amazing how much that book helped me. After I read it twice, and spoke to my nephrologist and he concurred with my decision, it became so comforting to know that if that time ever came I wouldn't be stressed out about what to do. I made the decision far in advance and it was great. Since then I've gone back and re-read the book two more times and it has only strengthened by resolve. Each time I've read it I come up with some new information. I even started to subscribe to Home Dialysis Central. I get the e-mails and I save them should I need to refer to them. It has made the future bright and seem like there are no barriers in front of me. I expect that before this year is out, I'll read it again for the fifth time.
Take Care
Thank you for this information. I will check out Amazon and get the book. I'm an 87 year old female but feel as if I'm 65! I only have/had some moderate digestive problems and controlled hypertension. At this point, I definitely would consider dialysis, but I feel completely uninformed. So, the book will be very helpful. My current kidney doctor feels as of I'm too concerned and hasn't even suggested a renal diet. Instead, he's cutting my HP meds to try to stem the decline. Yet, my GFR dropped to 26 from upper 40's and my creatinine is 1.94 in the past few months. I put myself on the diet and will be putting myself in charge of my own medical issues. I'm in the Central Florida area and find it so difficult to find physicians that get involved and follow up. I had resided in a college town before that had a medical school and hospital and I truly miss being able to access solid medical treatment.
I'm considering dialysis at this time because I love my life and family and enjoy the limited but nice life I have. I only retired two years ago from a professional job and there are days when I regret doing so!
And I love this site. So happy I found it.
I am 79 and completely understand your post. I also live in Central FL and have similar experience with co-ordination of care. One has to be very pro-active.
I’m a 67 year old female in Stage V but not yet on dialysis. I grew up in a family with a father who had CKD. Eventually he received HH dialysis. My mother and I were his HH dialysis care providers. We did this for close to three years. My father did not have a fistula; so we provided his hemodialysis via a graph. It was definitely challenging. But he had no infections. Eventually his heart simply stopped beating.
Unfortunately, my father had so many severe medical problems by the time he started dialysis that he did not feel or function well while on dialysis. It was definitely not a good experience for him overall; although, it did give my mother and the family time to prepare for his passing. On a personal level I greatly appreciated having those extra years with him, although, it was difficult to see him so sick.
Having lived through this with my dad I made decisions regarding my own care:
1. I’ll use dialysis if I’m otherwise fairly healthy; dialysis would have me feeling and functioning fairly well
2. If I have several serious additional medical conditions I will choose comfort care as dialysis will not lead to me feeling or functioning well
My dialysis preference is PD dialysis.
But I was very surprised and pleased to learn last November that I qualify for a kidney transplant. All my data fell well within the normal range. I was actively wait listed for a deceased donor kidney on January 10, 2020.
So at this point I’m still not on dialysis. However, I’m prepared to start when my nephrologist tells me it’s time. I’m waiting for a deceased donor kidney. I was told I should receive a kidney in 2 to 2 1/2 years. That means I’ve got about 22 months to go. (This is a rough guesstimate, of course.)
Naturally all of this is a personal decision for each of us. Have you talked with your medical team about your options? It helped me a lot to complete patient education on renal failure care with the nurse practitioner in my nephrologist’s office.
Clearly my situation has taken a positive and completely unexpected turn for the better. I hope you are able to make a decision with which you are at peace.
Jayhawker
So pleased and excited for you. Hope the transplant happens. I appreciate your sharing your deeply personal journey about your father. The honesty displayed in this forum is greatly moving. I am just beginning getting as much info as possible re dialysis. My kidney team has been awesome but of course the final decision is mine. Thank you to everybody for the feedback
Thanks for sharing your history with CKD.
Hello, In the first instance I would suggest trying to keep your own kidney function going as long as you can. I was diagnosed when I was at 17% and told I would be on dialysis within six months. But through diet and lifestyle changes I extended that to 5 years! I am pretty sure that I could have done even better than that if I had of tried harder. Of course I know that some people will decline faster than others but it is certainly worth trying to slow it down if you can.
Secondly, I dreaded starting dialysis. I put it off till I was down to 7% which in hindsight was silly as by that point I was feeling so unwell. I then started peritoneal dialysis. In an in UK and my experience of how they handle the transition from pre dialysis to needing dialysis over here was not very good. I never once met anyone who could tell me what life on dialysis was like.
All I wanted to say is that (in my case) the thought of it turned out to be far more frightening than the reality of doing it. I have been on peritoneal dialysis since November 2019 and it is working really well for me.
All the best.
Thanks for your response. It has given me food for thought
I like what you wrote. Most people seem to think that dialysis is an extension of their downward spiral...that dialysis is negative and unrewarding, a slow excruciating path to death. This is simply not the case for most people, including my husband, who are on dialysis. In the US, patients are literally brought through the "valley of death" before implementing life enhancing dialysis...and it's not a pleasurable experience in any way, shape, or form. The moment dialysis was implemented, my nearly 70 year old husband improved remarkably. Now, after two months, he's regained his stamina, fixed his anemia, controlled his spasms, regained his appetite, stabilized his blood pressure, fixed his sleep pattern and more. He was initially put on hemodialysis (which created few, if any, issues for him) and is now transitioning to peritoneal dialysis. He's also busy going through the tests for a transplant. In the meantime, he drives himself back and forth to the dialysis center. At the dialysis center, there are others doing the same thing - some are clearly employed while others are retirees. Yes, a few do look unwell but most look marvelous. So, I'd like to encourage everyone to work through their decision making in the right frame of mind - don't let depression (common for people with chronic health issues) and assumptions (so many horror stories) influence the outcome. It's your body, you're in charge of its treatment and direction. Make your decisions with logic and care.
Well thank you very much. Before I started dialysis I lived from blood test to blood test and it was soul destroying to see my kidney function gradually dropping and knowing that without intervention I was going to die. It was all I thought about. First thought in the morning and last thought at night. I was so scared about going on dialysis but it has been fine. I just wish there was a program where people on dialysis can do a presentation or meet with those about to go on it. I felt very alone. So pleased to hear that your husband is doing well too.
I know exactly what you saying. It's indeed "soul destroying" as you watch yourself or a loved one spiraling towards what seems to be death. I was so anxious and alarmed as I saw my husband fading away that I finally asked my own doctor to help me as I couldn't sleep any more. Like you, my head was filled with thoughts of death...constantly. As you suggested, it would have been great to be better informed, to ideally meet and talk with those already on dialysis. Dialysis has been a bright light at the end of a very dark tunnel. Thanks again for mentioning your experience.
I agree! Although I grew up with a father who had CKD and ultimately received in home hemodialysis, his experience was all that I knew. And, as I said earlier, he didn’t have a great experience on dialysis because he had so many other serious health problems (heart disease, heart failure, hypertension). So my mind was full of bad memories related to dialysis.
I kept telling myself that I was much healthier than my father had been, but the negative memories persisted. My nephrologist talked with me numerous times about how patients feel on dialysis; he spent an extensive amount of time with me to try to help me understand what most patients experience with dialysis. He also talked with me at length about how healthy I was aside from my renal health. But the negative thoughts persisted.
I initially joined this forum specifically to hear first hand what others experience with dialysis. I needed more stories, current stories. Thankfully those participating in this forum were gracious enough to share their experiences with me. They candidly shared the ways they fit dialysis into their lives; the ways they live with dialysis.
I can’t overstate how helpful that has been for me. I was able to create a vision for life on dialysis. It was a life that would be well worth living. I realized that I’d be able to do everything I enjoy doing while on dialysis. I learned from others who moved from stage v without dialysis to stage v with dialysis. They have each talked about feeling much better after starting dialysis. Most say they wish they hadn’t waited so long to start dialysis.
While participating in this forum I also completed the transplant evaluation process. I didn’t expect to qualify still believing that I had other serious medical conditions that hadn’t yet been diagnosed. (My father had been so very seriously ill with so many medical problems; I found it hard to believe that I wasn’t having similar problems...) Once again I was very surprised. My transplant evaluation data all came out well within the normal range (other than my renal function and anemia).
Now I finally believe that I am overall fairly healthy. I’m thankful to have qualified for a transplant. I realize that I will likely be placed on dialysis before the donor kidney comes. However, I’ve been ready to start dialysis for close to 2 years at this point. And that is specifically due to the support provided by many who participate in this forum. This forum has been so very helpful for me.
Jayhawker
Yes...this!! Some people will continue to deteriorate after dialysis for any number of reasons BUT a lot of people will be greatly improved! Each case must be evaluated on its own, keeping a firm grip on one's own mental health. So, it's important to reign in those rogue thoughts and moods (so omnipresent when that down cycle begins) and look carefully at the entire picture; it may be a lot rosier than one thought!
I too have decided against dialysis for various reasons in the knowledge that it will shorten my life span but I'm a true believer in quality over quantity and dont wish to spend my time in hospitals on machines. Its a personal choice, sometimes hard for family members to understand and accept but my loved ones have come to terms with it. I can admire your consideration of this option and hope you and your family are at peace with what ever yo decide. Kind thoughts. Willow.
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