Facing eventual dialysis and need to decide whether to do it when time comes.

[Doremikid]

Hi, I am new to this forum and would like further info and insight from those on hemo. I am 78 and have Crohn’s disease, not active and am not on any meds for it. However, have had a couple major surgeries to resection my small intestine and colon removal. I, therefore, probably cannot have PD, a disappointment, because of scar tissue. This is an assumption on my part as my nephrologist referred me for a vein mapping for fistula, but never discussed PD with me. Are there others on this site who have had or have Crohns and are needing or are on dialysis. More questions to follow? Thanks..Kitty

[Jayhawker]

Welcome to the forum, Kitty🐶

I’m still waiting for dialysis. I’ve been in renal failure since January of 2017 but haven’t yet been placed on dialysis. My first nephrologist spent a lot of time with me in patient education to help me select the renal failure treatment option I want to pursue.

So my first question is whether your nephrologist has referred you for patient education or not at this point. If you haven’t had formal patient education yet, I’d strongly recommend that as a starting point.

There are some online patient education classes that will also provide information.

davita.com/education/kidney...

And finally, if I’ve learned anything as I've tried to deal with my own chronic kidney disease, making assumptions without having candid conversations with our doctors is not helpful. I often say to my doctors that I want to know exactly what they are thinking in regard to my case and my care, i.e., current and future care, even if it’s bad news. Many of my doctors respond by saying they’ll tell me everything even if it’s bad news. I then thank them.

I can’t deal effectively, even if that means getting my affairs in order so I’m ready to pass on, without accurate information. I sometimes think that doctors underestimate the strength and resiliency of their patients. They certainly seem to do that with me rather frequently.

If I was in your shoes I’d want to KNOW definitively whether I’m a candidate for PD or not. If not, I’d want to talk about the option of in home hemodialysis either with a partner or solo home hemodialysis. Either home option would allow me to dialysis daily. More frequent dialysis is better than less frequent dialysis. More frequent dialysis cleanses our systems daily which is closer to what our kidneys do naturally.

And finally I’d have a candid conversation about my overall health. For me, I decided when going through the renal failure treatment education classes, that I would deny treatment if I had other serious medical problems. Why? Several reasons:

1. I’m the last person living in my family so there is no one else to consider when making my decision.

2. If I have serious heart problems (eg, serious chronic heart failure) I realize that I’m unlikely to feel or function well on dialysis. In this situation I may well try dialysis before automatically discontinuing treatment just to be sure my assumption is accurate...

3. If I have another terminal illness, e.g., cancer, I’d definitely deny treatment.

I’m not sure age would play a major role in my decision to deny treatment. Rather, for me, the choice to deny treatment will be based solely on overall quality of life while on dialysis.

But these are clearly both difficult and very individual decisions. However, I don’t think we can, any of us, make our decisions without full and accurate information.

Your nephrologist and you need “to talk.”

Jayhawker

[Doremikid in reply to Jayhawker]

Thanks for the candid response. It is helpful. I have been educating myself and just received a free book, “Help, I Need Dialysis” by Dori Schatell MS &Dr. John Agar”. It is very thorough and I will study it before I talk to the doc again. I will also attend the next series of classes that the Fresnisius Dialysis Center offers periodically. I feel that if I am well informed, I will have a better talk with the doc...certainly will have better questions for him. Will let you know how it goes. Thanks again! Take care.

[Jayhawker in reply to Doremikid]

Wishing you nothing but the best as you make your decision.

Jayhawker

[KidneyCoach NKF Ambassador in reply to Doremikid]

Dori is a fantastic person. We've known each other some 25 years. You may also want to check out kidneyschool.org which is very informative. I've been on dialysis nearly 20 years.

Blessings

[MinnadeParis in reply to KidneyCoach]

Can I ask you if you travel not just the occasional weekend, but a few weeks to explore a foreign country. Do you go out often with friends while at home. These are some of the considerations I would have to make in my case. I’m very interested in how ppl w advanced stages and on dialysis approach daily life. The reason I ask is that I have a BIL that has been on dialysis 8 yrs and that is his life.

Thank you for an honest answer

[Bunkin in reply to Jayhawker]

You hit the nail on the head. I absolutely agree!

[MinnadeParis in reply to Jayhawker]

Jayhawker, thank you for such an honest response. I suppose I’m “lucky?” To be in stage 3 and desperately trying to stay there. However I’ve done the numbers (I’m 74) and dialysis of any sort is not a path I feel that I would take.

[Jayhawker in reply to MinnadeParis]

I’ve just had a successful deceased donor transplant, a treatment option I NEVER expected if pursue! That being said, the transplant won’t last forever, so I’ll eventually be faced with a decision regarding dialysis. Of course, I’ll enjoy this wonderful working kidney as long as possible! BUT I turn 70 this Aug. Assuming my donor kidney works for 10 years or a little longer, I’ll be about 80 years or age as the need for dialysis resurfaces. At that point my age will factor into the decision more than it would have when I made my initial response to this post.

FYI—with my donor kidney my GFR comes in between 64-67. That puts me in the “normal range” for a person of my age. Given your age your GFR may actually be in the normal range (above 60) as well. Depending upon how fast your renal function deteriorates together with your age and other medical conditions, you may never reach the point where you would need dialysis. It took close to 9 years for my kidneys to deteriorate from GFR of 50 to GFR of 15, renal failure. Even in renal failure for a little over 3 years I made it to a transplant without dialysis. My BP was decent without meds. No fluid retention and my electrolytes remained in balance with careful dietary management.

So, you just never really know how CKD will progress. It’s such an individual thing for each of us,

Jayhawker

[SN23]

I recently joined a closed FB group called Natural Kidney Journey that has for the first time given me hope and direction. It is all about eating right and whole food plant based with no oil. Though it may sound hard at first, it is very possible and has shown results for many. There are no fads involved just good old eating wholesome and home cooked. Since you are so close to dialysis I would say why not take a look. It may be life changing. My prayers and best wishes.

[WYOAnne NKF Ambassador]

Welcome to this wonderful group!

If I can give you any advice ...it is to learn all you can about CKD! Knowledge makes this whole process less scary. And the more you learn, the easier it is to become your own advocate. Whether it is to find out more about your labs, other tests or getting an honest answer from your doctor, you need to speak up for yourself. This is your LIFE and your HEALTH and you need to have a good understanding of what is going on so you can ask appropriate questions. And you also can't make informed decisions about your own care without becoming more knowledgeable about CKD.

Best of luck to you. Please know that we are here for you.

[JimVanHorn]

So I also had cancer for eleven years (prostate) and my creatinin and BUN levels have gone up. I am in stage 4 and I have been to a nephrology training session (about 2 hours). They taught me how to eat and what not to eat. When I followed the diet (which is my medication for kidney problems) my creatinin came down one 1 1/2 points! So I am close to starting dialysis now and I had a left wrist fistula and they will be using a blood vessel on my lower left arm for dialysis. The operation was taking a small artery and a small vein and connecting them. The operation took about 1 hour. Now I have a vein in my arm to use when I need dialysis, I did this a year ago and have not needed it, but I am ready to go. I wish you well and hope you are not eating Potassium, Sodium or Phosphorus and drinking the correct amount of water daily (ask your kidney doctor how much water you should drink).

[Doremikid in reply to JimVanHorn]

I am having an AV access surgery this Monday. Did you have much pain and how long was your surgery. Thanks..ljust a little anxious!

[Doremikid]

Thanks everyone for your wise words. Am busy learning and forming new questions...like how much water should I be drinking. Lol

[Kidneyworks]

Just asking... have you found a dietitian who works with chronic kidney disease pre dialysis?? I work with CKD 3&4. But I’m in Northern California, not sure where you are located.

Sandy

[Doremikid in reply to Kidneyworks]

Yes, I have found a wonderful dietician who was very thorough and has given me great guidance and recipies

[Jayhawker in reply to Kidneyworks]

Are you a renal dietician? And, if so, do you have suggestions as to where we can find renal-friendly vegetarian recipes? (I'm good for breakfast and lunch but haven't really found many recipes for dinner. I've begun using nutritional yeast which I'm adding to dinner recipes. I'm learning to cook tofu. But it would be MUCH easier for me to convert to a vegetarian if I could find some renal-friendly dinner recipes.)

I just saw a renal dietician as a part of my work with a kidney transplant center. (I'm going through transplant evaluation right now.) Anyway, this dietician didn't have a lot of guidance regarding where I could find renal-friendly vegetarian dinner recipes.

I've got my dietary targets from my regular nephrologist which are based on my renal labs. I'm relying on the following for protein sources right now:

1. Egg whites (and occasional whole eggs)

2. Greek yogurt (one serving daily)

3. Nutritional yeast

4. Tofu

5. Special K Protein (suggested by the renal dietician as a possible snack food option)

6. Black beans or garbanzo beans (1/2 c serving)

I don't eat all of these each day. But I'm striving for 40 g of protein daily. I'm concerned as to how much of that needs to come from high value plant-based protein sources, i.e., complete proteins.

And, I'm truly struggling to put this into something I want to eat for dinner at this point. So, I'd greatly appreciate any ideas you or others could give me

Jayhawker

[MinnadeParis in reply to Kidneyworks]

sandy/kidney works I am looking for such a dietitian. All my labs are normal so my neph says I don’t need a totally restricted renal diet, however, I have IBS. No dairy, minimal gluten, etc. I can’t find a dietician that could incorporate both issues. I an in Ca also. Plz DM me if you can help