Advice about going back to Peritoneal Dialysis after trying Hemodialysis

[Vixibunny]

Hello,

My sister went on the kidney transplant list two and a half years ago after being diagnosed with renal failure, and until this past July, was doing Peritoneal Dialysis, which she was doing quite well on. However, starting in the new year this year, she had three minor strokes, and after the last one this past July when she was hospitalized, her nephrologist decided to switch her to hemodialysis, citing the strokes, and the fact that he wanted my sister to go into a skilled nursing facility to get PT, and no local facility had peritoneal dialysis equipment.

The problem is that she has been doing much more poorly these past two weeks on hemodialysis. She is so fatigued that she can barely sit on the edge of her bed, never mind do PT, and she has fluid buildup constantly in her face, hands, and lungs.

Her boyfriend and I have been trying to talk to her nephrologist about whether or not it wouldn't be best to bring her home, arrange for home health, and get her started back in peritoneal dialysis -- especially considering the fact that she has been on an anti-stroke med since her stroke in July, and hasn't had one since. So far he isn't calling us back, but think he might now that her boyfriend officially has Power of Attorney. But in the meantime, I'm hoping to see if anyone has any experiences like this, where they were switched from PD to hemodialysis because of stroke, but seemed to deteriorate much more on hemodialysis. If so, did you go back to PD, with the addition of an anti-stroke med? And how did you do after that? Any shared experience and advice would be a huge help, and a relief. Thank you!

[Darlenia]

Oh my, these types of situations are so sobering and heartbreaking. I think getting a second opinion is warranted. My experience isn't the same as yours but there are some similarities. My husband, a diabetic, was at high risk for heart attacks and strokes, so he was put on a blood thinner (aspirin) when he was middle aged. I assume your sister is on a thinner now too. My husband continued with aspirin as he moved from HD to PD (at age 69/70) and finally, a transplant (at age 71). Shortly after the transplant, he experienced a-fib and foot drop. (One nephrologist wondered if he had experienced a cardiac event while on the table, but the conversation shifted away.) Because of the a-fib, my husband was moved from aspirin to Eliquis, a more up-to-date thinner. The a-fib disappeared, but the drop foot remained. Some time later, his bad foot caught on a board, my husband face-planted, and had brain surgery to vacuum away hematoma that formed (because of the thinner). Following brain surgery, all issues disappeared including the foot drop. He was told not to take a thinner anymore. After a year went by, the a-fib returned and he was again put on Eliquis. So far, it's all gone well. So that's our history and our current status in brief.

In retrospect, the blood thinner didn't prevent him from experiencing both HD (which was harsh and created lots of blood pressure issues and fatigue) and PD (smooth sailing). Moreover, my husband was told by a transplant surgeon to move from HD to PD- because HD directly accesses the blood, increasing the potential for calcification of the arteries needed for transplant. (This may be only a problem for diabetics.) So we quickly made the switch. While your sister's narrative varies somewhat from ours, you, your sister, and her boyfriend deserve answers to questions. No one should feel uneasy about a given situation, that's not good for anyone. So I encourage you to seek professional advice - consider approaching another nephrologist, a cardiologist, etc. The more you ask, the more you will know, and the clearer the path forward will be. (If the blood thinners are the biggest issue in returning to your sister to PD, for example, a "watchman" device may be a replacement. If it's getting PT, then arranging in-home PT might work. And so on. ) Your sister is undoubtedly a lot younger than we are. She deserves a decent quality life. Both you and her boyfriend are lovely people for caring about her; not everyone does that. I'm sure there's a special place in heaven set aside for both of you.

[Bassetmommer NKF Ambassador]

I am so sorry and so with you when dealing with a stroke victim. I cannot give you advice about whether HD or PD would be better because it is not only a health matter, but a life style matter.

What I can do is talk to about bringing her home with home care. My sister, 77 yo, has been falling since January. She broke an arm one time. Broke her shoulder (clavicle) another time. And so , we brought in home care. 3 hours in the am, 3 hours in the evening until bed. Worked great, until it didn't. She started falling again. Face planted a couple of times, on her backside multiple times. One night, she fell three times and had to have lift assist from the Fire department. 3 times in one night. Well, even with the home care, she was falling when no one was around. And she ended up having a big incapacitating stroke and now is having to go to a nursing home. She needs 24 hour care and that is excruciatingly expensive for home care. oh, and the same thing about the blood thinners. She is on aspirin right now. She turned down Eliquis and is going to have the surgery for the Watchmen. Reason was for her inability to stay up right and not remembering to take meds. Now she is going to have to go into the Nursing home, we might go back to the Eliquis instead of surgery. Not sure yet.

What Darlenia said about the consequences of HD and blood clots and calcification is spot on. It also is harder on the body, especially in center. Any possibility of doing home hemo? She would need someone to train to learn to do it. Not sure, but you may be able to hire someone to do it, but most insurances will not pay for it. Her boyfriend might be able to do this. But, you do a shorter treatment, and your done. Much gentler on the body.

[Justicelover]

hello, first of all, do you know if the stroke was because of the high blood pressure?, and I know that hemodialysis is more aggressive than peritoneal, another thing is if she got the high blood pressure, she might be having heart failure, my boyfriend has high blood pressure since they did dialysis on him and that messed up with his heart, he was getting swollen feet and water retention at the end and we didn’t know it was because of the heart failure, one more thing, you can not wait for the nephrologist to call you back, you need to be on top of them or putting some kind of pressure in order for them to help you, and if they don’t give you the right answers, or you feel like they don’t care try to switch to another one, until you feel comfortable with a new one, my boyfriend nephrologist was visiting him at the Davita place maybe every 3 months, and I found out all of the things that I recommended you 4 years later when I started to help him with appointments and all of that