These last few days have been very hard trying to face some terrible realizations. I know some said that maybe Bill was just protecting me by not showing his feelings. That maybe so but it is not about the house,car, bills,etc. it is about the ugly diagnosis. The last apt with that neuro was very difficult for me since I did not want to upset Bill by being too angry with the doc but I also felt the doc needed to know how strongly I felt about him wasting our time as time is not on our side. He hardly took his eyes off me as I listened to him make excuses and him studying the expression on my face. Just saying he does not do dna’s because Medicare does not pay for it. We are talking about a life here.
This is not a typical disease. Amyloidosis itself is rare but the herditary Amyloidosis (Familial) is even rarer because the bad protein is coming directly from the liver so a liver transplant is the only possible treatment. That in itself is not always a terrific option. Although his has attacked his nerves like cidp but it was not demyelinating meaning not mylin but the axons were being attacked, plus this disease attacks the Organs. Other types of Amyloidosis are studied more as there are more treatments for them although still rare. But they are soon to do some new trials on the other types but not the Familial type.Primary is the most known type.
This also means our two children need to be tested. They are worried also .
We have 5 grandchildren but they are too young to be tested as it would not show up this early. there were signs of this with the symptoms like carpel tunnel which my husband had surgery for maybe 15 years ago. My son has had this problem for a couple of years now. We have been in contact with a cousin who ‘s father died from this and we are checking with the doctor who treated her father. This affects men more than women. Our new doc is a researcher and wanted as much info as we could get from the family.. This does not mean anyone with carpel tunnel will get this it just is one earlier symptom. I guess with the economy as it is now I am truely worried about the research being cut off for this disease . Bill had a stomach biopsy and more blood tests and we will know more as time goes on if any of his organs have already been involved. I do suspect one right now. We can only hope for some new treatment to be discovered. They have checked his heart out with a echo-cardiogram and a thryroid ct scan has also been done.I had already made him see a cardiologist for ekg and eye dr this year but I am sure more organs will be tested. We will find out if we need to get him on a list for a liver transplant but we do not want this yet.
I have learned so much in the last week and I still cry but I have not stopped trying to learn about this disease. I know where the gene is located and what it is called. What I do not know is if it makes a difference . That is my next question. Bill seems resigned or else he is just not facing it. Not sure. What I have pushed for is getting things done here that are necessary. Our trust needs redone since we moved, things like this that should have been done before. He is a procastinator. I appreciate the wisdom you have Hope and wonder how you cope with things. What is your line of work? You seem so knowledgeable. I do not always know what to do next.
Maybe I should feel ashamed for taking up so much time with my grief when there are others (like the young child you talk about ) who should have a longer life to live but may never get there. I do care about others but I just am not ready to face the music and I do not know how to have faith. I wish I could be more like some of you who have gone thru so much more and you can still have faith. I have lost it somewhere down the line.
I have not found a amyloidosis support group yet but I will try again so I will not come here as often except to check on some of you.
Thanks for all you help.