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devineone
@devineone

Posts: 24
Joined: Aug 22, 2018

AL amyloidosis

Posted by @devineone, Wed, Aug 22 8:53am

My husband is an ESRD patient for 3 years on hemodialysis recently he was diagnosed with AL Amyloidis he is getting the chemo treatment recommed on his 3rd week. Unfortunately his his dialysis sessions have been very rough as his blood pressure drops as they try to remove more fluid. This is what led to the diagnosis of AlAmy in the first place. Docs don’t seem to have many cases of ESRD and ALAmy so I am wondering if any one has any info Thank you

REPLY

@devineone -you may want to cross-post this to the kidney and bladder group, also. I'm sorry to hear of this setback. Is your husband a candidate for peritoneal dialysis? It is gentler overall on a body, in my humble opinion. [My husband was on PD for 5.5 yrs before transplant]. In the course of diagnosing my kidney disorder, amyloidosis was the first one considered, then set aside.

@gingerw

@devineone -you may want to cross-post this to the kidney and bladder group, also. I'm sorry to hear of this setback. Is your husband a candidate for peritoneal dialysis? It is gentler overall on a body, in my humble opinion. [My husband was on PD for 5.5 yrs before transplant]. In the course of diagnosing my kidney disorder, amyloidosis was the first one considered, then set aside.

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thank you I will do that. as far as PD we will ask, he did not want it originally bu we can see now what they say. AMY did not cause Kidney failure.

@divineone Just a comment about the rarity of some forms of Amy. Current thinking is that I have Gelsolin of some form, but it may be Evans Syndrome. Gelsolin itself is diagnosed in less than one person per million each year, so that means less than 300 per year in the USA. A few years ago my cardiologist said he had "Hundreds of Gelsolin" patients, and that I did "not look like any of them." About all you can do is keep going and keep searching. Oh, and have a good laugh sometimes at the stupidity we all face. https://bit.Ly/1w7j4j8

Liked by gingerw

@gingerw

@devineone -you may want to cross-post this to the kidney and bladder group, also. I'm sorry to hear of this setback. Is your husband a candidate for peritoneal dialysis? It is gentler overall on a body, in my humble opinion. [My husband was on PD for 5.5 yrs before transplant]. In the course of diagnosing my kidney disorder, amyloidosis was the first one considered, then set aside.

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@devineone – my kidney disorder is caused by a very rare immune issue, less than 50 in the world ever diagnosed. The amy was first considered seeing that the renal pathologists had never seen a live case of what I have, only read about it in journals. Like @oldkarl alluded to, keep poking for answers, and please reach out to us, let us know how you both are doing
Ginger

@oldkarl

@divineone Just a comment about the rarity of some forms of Amy. Current thinking is that I have Gelsolin of some form, but it may be Evans Syndrome. Gelsolin itself is diagnosed in less than one person per million each year, so that means less than 300 per year in the USA. A few years ago my cardiologist said he had "Hundreds of Gelsolin" patients, and that I did "not look like any of them." About all you can do is keep going and keep searching. Oh, and have a good laugh sometimes at the stupidity we all face. https://bit.Ly/1w7j4j8

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Thank you.

@devineone My grandma used to get dialysis. A few times she had treatments they took too much fluid and she passout blood pressure dropped
I was there the one time with her. The guy who was doing her treatment. Well he had three patients he was attending too at once. Two borh passed out, blood pressure dropped. I watched him immediately start squeezing an iv drip. Trying to push fluids back in them. He said to me the machine wasnt working correctly and it over did the treatment.
Question could they be taking too much fluid at once or taking it out too fast? Something maybe to ask the Dr about?
I am also going to have Lisa @lisalucier move your message to another board too.
I wish you and your husvand the best.
Jackie

@travelgirl @devineone Following is my humble opinion; I am not a medical doctor, nor do I play one on TV. The passing out could be due to removing fluid too fast, and blood pressure drops. Hemodialysis is really hard on the body/other organs, as the toxins build up in the system, then get removed 3x a week. Peritoneal dialysis allows toxins to be removed everyday, and the body/other organs maintain a more even keel of activity. In today's world of dialysis, unfortunately, a technician is assigned multiple patients at a time. You have to learn to understand the machines and processes yourself, so you can spot when there is an issue. As the number of people needing dialysis grows [but number of dialysis centers don't keep expanding], people are pushed through at a speed that may not be optimal to that individual. The center doesn't want to hear that you need 4 hrs rather than 3 or 3.5 -you're taking up space which equals money as they are paid based on number of patients processed. You and your doctor have to insist, and that's where becoming your own advocate comes in. May i humbly suggest going to http://www.rsnhope.org and see all the information there. If anyone is in Los Angeles County area on 15 Sept, there is patient education day happening.
Ginger

@travelgirl

@devineone My grandma used to get dialysis. A few times she had treatments they took too much fluid and she passout blood pressure dropped
I was there the one time with her. The guy who was doing her treatment. Well he had three patients he was attending too at once. Two borh passed out, blood pressure dropped. I watched him immediately start squeezing an iv drip. Trying to push fluids back in them. He said to me the machine wasnt working correctly and it over did the treatment.
Question could they be taking too much fluid at once or taking it out too fast? Something maybe to ask the Dr about?
I am also going to have Lisa @lisalucier move your message to another board too.
I wish you and your husvand the best.
Jackie

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thank you Jackie but the low blood pressure is caused by his Amyloidosis

thank you Ginger, he is on 3.5 hours and was once extended to 4.5 hours which does make a difference. Our best option would be 5 hours or Nocturnal however, very few centers offer this in our area. yes long and slow may be the only option.

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.

My husband has finished his 90 day treatment on CyborD the numbers are very slightly improved so the doc said to continue on the same however because of his ESRD and this AL Amy he seems to be deteriorating every day, no appetite, no energy and very low BP we give him midodrine 10gm 3times a day to try to get bp up however does not seem to be working as effectively as previously. He is 76 years old, has anyone been in this situation, eg; ESRD previous to being diagnosed with AL Amy ? PS he is on Peritoneal Dialysis since the onset of the AMY previously was on Hemodialysis for 3 years.

@devineone

My husband has finished his 90 day treatment on CyborD the numbers are very slightly improved so the doc said to continue on the same however because of his ESRD and this AL Amy he seems to be deteriorating every day, no appetite, no energy and very low BP we give him midodrine 10gm 3times a day to try to get bp up however does not seem to be working as effectively as previously. He is 76 years old, has anyone been in this situation, eg; ESRD previous to being diagnosed with AL Amy ? PS he is on Peritoneal Dialysis since the onset of the AMY previously was on Hemodialysis for 3 years.

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I would like to invite @oldkarl back to this discussion as he has amyloidosis and has a ton of experience and knowledge to share and may have some insight on ESRD and amyloidosis.

@JustinMcClanahan

I would like to invite @oldkarl back to this discussion as he has amyloidosis and has a ton of experience and knowledge to share and may have some insight on ESRD and amyloidosis.

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Yes that would be fine. Thank you

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