Mayo Clinic Connect
My husband who is on hemodialysis wants to switch to PD. We were just told if the stomach has too much fluid it is not recommended. He has AL Amyloidsis and hemo cannot pull enough fluid. As his BP drops too low. Any information would be appreciated
Liked by cehunt57
@devineone Was it a nephrologist who told you about the fluid issue on the stomach? We know several people who had to go the hemo route because they could not tolerate PD. But check with a good nephrologist. Unfortunately many want hemo because it is more lucrative [$$] for the Dr and dialysis clinic. I hope that after research, your husband can go the PD route.
Liked by Rosemary, Volunteer Mentor, cehunt57
the reason for him to go on PD is that it is a lesser strain on the heart than Hemodialysis, which is what the amyloidosis is causing, and when he is on HD his BP drops and they cannot keep taking fluid. We have a consult coming up with the PD surgeon in another week. He is very weak and they may not be able to perform the procedure
Liked by Rosemary, Volunteer Mentor, cehunt57, Ginger, Volunteer Mentor
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@devineone PD is definitely easier on the body and all organs. I really hope your husband can qualify for the procedure and start on PD. You both will be in my thoughts and prayers.
@devineone Did your husband have the procedure? How is he doing now? How are you holding up?
Yes but they cannot use it for another 3weeks, hopefully. Meantime the fistula flatlined twice first time they were able to clear it but today they could not,which we figured, so they put a catheter in his chest and dialyzed him. The Amy is really taking its toll building fluid in conjunction with no kidney function it’s a real problem. Only hope is that the CyborD treatments for Amy will work. Has had 5 treatments and will not know until the 12th treatment I am told. Very tough
Now that he has had the PD surgery and waiting for it to heal before they can use it , he is at the hospital on SLEDD dialysis, his feet and ankles and legs are so swollen he cannot get on a pair of socks, also you cannot touch is legs as it is very painful,, he can barely get up from the bed to the wheelchair and from the wheelchair to the toilet, can he possibly do PD at home with my help, I am so scared. He is 76 years old and due to the AL Amyloidosis has taken a turn for the worse, the fluid build up is a combo of no kidneys and AL AMY. Doctors are trying all they can at his request.
Liked by Colleen Young, Connect Director, cehunt57
Hi @devineone, I moved your message to the discussion you already started in the Kidney group. I think @rosemarya and @gingerw will appreciate the update.
@devineone I hope you and your husband can speak with a social worker, to help address these terrible side effects. Sure wish the meds for Amy would hurry up and work! When will the 12th dose be done? Can they do any pull off of fluids with a syringe, or is that not possible? Holding you both in my thoughts and prayers.
Liked by Rosemary, Volunteer Mentor, Colleen Young, Connect Director, cehunt57
@devineone, I continue to think about you and your husband, and keep you in prayers. I know how uncomfortable he is with all that fluid. I hope that you soon learn something positive about the new treatment.
I don't want to burden you with questions at this point, however I am wondering if there is any talk of anything to relieve any of the fluid or discomfort? Or even any kind of inpatient PT that can be preformed while in bed?
It sounds like you have a dedicated group of doctors, and I always add our doctors and nurses and caregivers to my prayers.
Liked by cehunt57, Ginger, Volunteer Mentor
Thank you so much he is currently on SLED dialysis which is sustained low efficiency dialysis it is done on a gurney for 7-8 hours in a hospital right now 3 days MWF and maybe next week also this Puts much less stress on a he heart and keeps the blood pressure in check his BP h has hypotension with a systolic reading around 75-85 When it hits 90+ we are thrilled. This is mostly due for o the AL Amy. We are waiting for the PD catheter to heal. In the meantime the fistula can no longer be used and they put the only in a chest catheter. The AL Amy treatments going on to the 6th week so 6 more weeks before we know the if there is any improvement. Prayers needed and welcome
@devineone, Thanks for explaining the SLED dialysis to me. I am not very well versed in the dialysis vocabulary, and many folks are surprised because I spent some time on dialysis before my transplant. I was 60 yrs old at that time. I began with an emergency line in my neck that was referred to as "rabbit ears". Then when that began shutting down, I had a more permanent line in my chest. My nurses made sure that it was secure and stayed out of my way, and sterile. That is my only experience with dialysis.
I can relate to the low BP readings. I hope that you will be seeing some 90's in the near future. I can imagine, from my experience, that your husband is very weak at this point. Probably sleeping a lot? I want to tell you that even if you think he is asleep, that he does feel your presence when you are with him. My husband would sit quietly by my bedside, and when I opened my eyes and saw him for a brief moment, my heart was filled with love and comfort. And I felt some happiness when he left my presence to take a break (for his own self care) He had to be real careful about touching me because that hurt me so much, too. It was hard for him, as it must be for you. But I assure you that you are the best 'medicine' that he needs right now. You and the good care that you have described are his blessing.
Waiting for answers and uncertain futures make it feel as if time is standing still. You are now 1/2 way thru this particular waiting period. I continue to say prayers on your behalf. That is what I believe, and what I have learned matters the most.
Are you currently near your home? Do you have family or friends to support you and be with you?
-from Rosemary with hugs, hope and prayers.
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