Journal entry by Sue Covel —
Caring Bridge is a wonderful way to keep in touch with family and friends about Howard. Right now he is doing fine so I don't expect to have many entries, but if you sign up you will get notified of any new entry.
Life is what happens when you are making other plans. That is what happened to Howard and us in September 2019.
After months of being tired for no apparent reason and then becoming short of breath with minimal exertion, testing began. An angiogram gave the diagnosis of severe cardiac Amyloidosis, a very rare, serious and often misdiagnosed disease. Like many other diseases there is no cure and nothing you can do to prevent it.
However, in May of 2019 the FDA approved a new drug that slows the progression of the disease. It is a wonderful step forward in helping patients with this disease, however the cost of the pills is $225,000 a year. That price is way out of our budget so we applied for help from Pfizer. Praise the Lord Howard was approved and is getting it FREE. He has been taking it for about 6 weeks with no side effects. He says he feels good except he says "my get up and go has got up and went and I can't find it" and he does like to sleep a lot!
It is presumed that there are MANY thousands of patients that have Amyloidosis, but are misdiagnosed and given incorrect medications that do more harm than good. Amyloidosis is rare and only about 4000 new cases a year are diagnosed so very few Drs. know much about it. Our very well recognized cardiologist in Buffalo said she knew very little about the disease and sent Howard to a Amyloidosis specific center at the Cleveland Clinic for further treatment and followup. It is a wonderful, caring and knowledgeable facility. Previous tests were reviewed and new ones done to determine which of several kinds of amyloidosis he has. It was found to be the type that did NOT need chemo as part of the treatment, just the pill.
While in Fl he can have virtual visits with his Dr in Cleveland or go to the Cleveland Clinic near Miami. When we get back to Akron in May he will have genetic testing to see if he has the hereditary type. In that case our children have a 50% chance of developing it and would have to be tested immediately. We have no knowledge of any of his relatives who have had it and we hope it isn't something that our children will have to deal with.
We are praying that this $650 a day pill will really slow the progress of the disease and we will have more years to enjoy life together and with our family and friends. Your prayers would be appreciated. God bless you as 2020 begins.
Life is what happens when you are making other plans. That is what happened to Howard and us in September 2019.
After months of being tired for no apparent reason and then becoming short of breath with minimal exertion, testing began. An angiogram gave the diagnosis of severe cardiac Amyloidosis, a very rare, serious and often misdiagnosed disease. Like many other diseases there is no cure and nothing you can do to prevent it.
However, in May of 2019 the FDA approved a new drug that slows the progression of the disease. It is a wonderful step forward in helping patients with this disease, however the cost of the pills is $225,000 a year. That price is way out of our budget so we applied for help from Pfizer. Praise the Lord Howard was approved and is getting it FREE. He has been taking it for about 6 weeks with no side effects. He says he feels good except he says "my get up and go has got up and went and I can't find it" and he does like to sleep a lot!
It is presumed that there are MANY thousands of patients that have Amyloidosis, but are misdiagnosed and given incorrect medications that do more harm than good. Amyloidosis is rare and only about 4000 new cases a year are diagnosed so very few Drs. know much about it. Our very well recognized cardiologist in Buffalo said she knew very little about the disease and sent Howard to a Amyloidosis specific center at the Cleveland Clinic for further treatment and followup. It is a wonderful, caring and knowledgeable facility. Previous tests were reviewed and new ones done to determine which of several kinds of amyloidosis he has. It was found to be the type that did NOT need chemo as part of the treatment, just the pill.
While in Fl he can have virtual visits with his Dr in Cleveland or go to the Cleveland Clinic near Miami. When we get back to Akron in May he will have genetic testing to see if he has the hereditary type. In that case our children have a 50% chance of developing it and would have to be tested immediately. We have no knowledge of any of his relatives who have had it and we hope it isn't something that our children will have to deal with.
We are praying that this $650 a day pill will really slow the progress of the disease and we will have more years to enjoy life together and with our family and friends. Your prayers would be appreciated. God bless you as 2020 begins.
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