Life as you knew it has ceased to exist.

[Opti]

Jul 21, 2021 16:01:16 GMT -5 finnime said:

Soooo, DH's test results continue to be stable! His creatinine has come down quite a lot (a good thing) but otherwise no changes really. He's a bit anemic.

I have a Zoom meeting for the living donor program at the end of next week. I'm going to commit to the Zoom, but nothing beyond that at this time. DH is convinced he'll remain stable indefinitely. Also, as my siblings and DS pointed out, DH has not done well recovering from prior major surgery. Plus DH does not want me to undergo the donor process.

The donor program people have an entire process that they onboard you to, including extensive testing, the next step after the Zoom meetings. They would expect to do that in August. I'm not going to do that, not now. Maybe not ever. 

I am grateful he's stable now. One quarter year at a time . . .

Thank you all for your good wishes.

Is he eating things to increase the iron in his blood like beans, grass fed beef, etc.?

[finnime]

Jul 21, 2021 16:49:39 GMT -5 Opti said:

Jul 21, 2021 16:01:16 GMT -5 finnime said:

Soooo, DH's test results continue to be stable! His creatinine has come down quite a lot (a good thing) but otherwise no changes really. He's a bit anemic.

I have a Zoom meeting for the living donor program at the end of next week. I'm going to commit to the Zoom, but nothing beyond that at this time. DH is convinced he'll remain stable indefinitely. Also, as my siblings and DS pointed out, DH has not done well recovering from prior major surgery. Plus DH does not want me to undergo the donor process.

The donor program people have an entire process that they onboard you to, including extensive testing, the next step after the Zoom meetings. They would expect to do that in August. I'm not going to do that, not now. Maybe not ever. 

I am grateful he's stable now. One quarter year at a time . . .

Thank you all for your good wishes.

Is he eating things to increase the iron in his blood like beans, grass fed beef, etc.?

No, not now. The problem with almost all iron-rich foods is that they are rough on the kidneys. Protein is the most problematic, but dark leafy greens and whole grains are also culprits.

[Opti]

Jul 21, 2021 16:53:58 GMT -5 finnime said:

Jul 21, 2021 16:49:39 GMT -5 Opti said:

Is he eating things to increase the iron in his blood like beans, grass fed beef, etc.?

No, not now. The problem with almost all iron-rich foods is that they are rough on the kidneys. Protein is the most problematic, but dark leafy greens and whole grains are also culprits.

Does he drink enough? The older you get the more protein you require according to some of my reading. He could take supplements, but I think whole foods are better. And you get most foods in many forms. Beans can be canned beans, puree, and even the very popular pastas made of beans. I think Explore Cuisine is one of the better pastas containing beans. 

If I were him, and I am not, I'd try my own version of a diet to test what I can and cannot handle. Keep a food diary. Try things, see what is really hard on his kidneys versus what is said to be hard on kidneys. They probably do not match exactly. I was anemic when young, and now I like greens, eat beans, and am limiting my beef even though I like it. I used to load up on iron rich foods when I gave blood. Ironic thing is they will take my blood when I am overweight, but not when I am at my preferred weight. Weirdness.

[pulmonarymd]

High protein diets are exactly the wrong thing for someone with kidney disease. Studies have shown that restricting protein has a favorable effect on renal function. In addition, the anemia related to kidney disease is related to the underproduction by the kidneys of a protein necessary for red blood cell production, so iron by itself will not be helpful, and could be harmful. In addition, unless he has a severe anemia, it is unlikely to be the cause of fatigue, which is more likely due to the kidney disease. Fluid restriction is also something that is done for these patients, as fluid retention and the development of heart failure would be one reason to institute dialysis.

Managing someone with failing kidneys is a complex and difficult proposition, best left to professionals. Taking the advice of lay people can result in tragic outcomes. Unfortunately, I have seen the result of people who have done so in these situations, some of which have been fatal.

[finnime]

TY, pulmonarymd.

I have gotten some gratuitous advice from a number of people that is not helpful at all. The nutritionist who is part of DH's program believes I/we are doing the right things in his diet, and I think the fact that he is stable is proof of that. I'd been so worried that he would be on a downward slide. He feels good, even better than he has in a long time. Every day is one more to the good.

[jelloshots4all]

Hugs finnime! I'm glad to hear he is stable.

[finnime]

Thanks, Jello.

Interesting, I had my annual blood work done last week and I, too, am a bit anemic. I'm going to add OJ to our diet to help boost the iron we are getting.

[Opti]

Jul 22, 2021 14:14:13 GMT -5 pulmonarymd said:

High protein diets are exactly the wrong thing for someone with kidney disease. Studies have shown that restricting protein has a favorable effect on renal function. In addition, the anemia related to kidney disease is related to the underproduction by the kidneys of a protein necessary for red blood cell production, so iron by itself will not be helpful, and could be harmful. In addition, unless he has a severe anemia, it is unlikely to be the cause of fatigue, which is more likely due to the kidney disease. Fluid restriction is also something that is done for these patients, as fluid retention and the development of heart failure would be one reason to institute dialysis.

Managing someone with failing kidneys is a complex and difficult proposition, best left to professionals. Taking the advice of lay people can result in tragic outcomes. Unfortunately, I have seen the result of people who have done so in these situations, some of which have been fatal.

Weirdly I did not recommend a high protein diet, just posted that I have read in general older people are said to need more protein. And unlike you, I didn't think fin was in any danger of taking my advice without vetting it. I would guess she is dealing with medical professionals that deal with kidneys. With any failing system there are multiple approaches to take. And it is wise in my lay person's opinion to not assume you fit the one size fits most approach that some medical professionals will take.

In the end, it will be up to what the husband is willing to do and what advice he may or may not take. And many beans are not that high protein in and of themselves. Some government programs find some low enough in protein they classify them as vegetables not protein.

I don't do a high protein diet for myself, I am just aware that many options are not equivalent and plan and eat accordingly. Scary lay person leaves thread. 

[pulmonarymd]

Jul 24, 2021 18:05:06 GMT -5 Opti said:

Jul 22, 2021 14:14:13 GMT -5 pulmonarymd said:

High protein diets are exactly the wrong thing for someone with kidney disease. Studies have shown that restricting protein has a favorable effect on renal function. In addition, the anemia related to kidney disease is related to the underproduction by the kidneys of a protein necessary for red blood cell production, so iron by itself will not be helpful, and could be harmful. In addition, unless he has a severe anemia, it is unlikely to be the cause of fatigue, which is more likely due to the kidney disease. Fluid restriction is also something that is done for these patients, as fluid retention and the development of heart failure would be one reason to institute dialysis.

Managing someone with failing kidneys is a complex and difficult proposition, best left to professionals. Taking the advice of lay people can result in tragic outcomes. Unfortunately, I have seen the result of people who have done so in these situations, some of which have been fatal.

Weirdly I did not recommend a high protein diet, just posted that I have read in general older people are said to need more protein. And unlike you, I didn't think fin was in any danger of taking my advice without vetting it. I would guess she is dealing with medical professionals that deal with kidneys. With any failing system there are multiple approaches to take. And it is wise in my lay person's opinion to not assume you fit the one size fits most approach that some medical professionals will take.

In the end, it will be up to what the husband is willing to do and what advice he may or may not take. And many beans are not that high protein in and of themselves. Some government programs find some low enough in protein they classify them as vegetables not protein.

I don't do a high protein diet for myself, I am just aware that many options are not equivalent and plan and eat accordingly. Scary lay person leaves thread. 

You were giving dangerous advice. Suggested he kept a food diary to see which foods are tough on his kidneys in addition to other things including iron and fluids. People with chronic kidney disease are followed by nutritionists who advise people on what to eat and what to avoid. People who have chronic kidney disease who are close to dialysis can have strict nutritional requirements based on their fluid balance, potassium, etc. your advice, if taken by people who are looking for some hope can be dangerous. I do not have the expertise to manage these people and am careful in what I advise. Not following professional advice can lead to tragic consequences. The reason most physicians do not give advice on line in these cases is that without knowledge of the case, you can give incorrect advice

[finnime]

DH continues to be stable in his kidney disease.

He's had other health issues, including a tear in his hip cartilage which has made it very difficult for him to get around and for which he will need surgery, and a virus or something that made him acutely ill while we were vacationing. That illness caused him to be hospitalized for two nights. Although his lab values were screwed up from the illness, the ones tracked for CKD showed no increased problems. That was a huge relief. I was worried that the illness stemmed from kidney shutdown.

I had a series of meetings with the kidney donor team to evaluate my participation. Unfortunately, donating would mean I would have to stop taking NSAIDs for the rest of my life. I have osteoarthritis in my knees and hands that requires me to take ibuprofen and extra-strength Excedrin. I tried going without for one week and suffered too much to consider going without indefinitely.

So we beat on, boats against the current, borne back ceaselessly [. . .] (The Great Gatsby, F. Scott Fitzgerald)

To relate to money management, we are extremely fortunate in having both Medicare (primary) and BCBS Federal Employees Plan, available to retirees of the federal government and their families. No out of pocket costs beyond prescription medications. If DH were only covered by Medicare and supplements we'd be looking at tens of thousands of dollars just this year. The hospital determined once DH was improving that he didn't (any longer) meet the criteria for an inpatient, so was changed to observation status. That meant that Medicare part A did not cover the stay, but part B applied at a much lower reimbursement rate.

[TheOtherMe]

My dear friend who is on dialysis was notified by mail on Friday that he is now on the transplant list at a hospital in Tennessee.  Now he needs a donor.