My Brother's Short Experience with Amyloidosis
My brother, Douglas Scot Fitzgerald, was 46 years old when he traveled with the angels on Dec 12, 2002 to retreat to a better place! His story is an unusual one: his youth did consist of IV drug use but during the last years of his life he was a happily married husband with his own successful landscaping business. His one complaint in life at that time was "severe swelling and pain" in his knees. Over the years he had been treated by Rheumatologist for Gout and then for Rheumatoid Arthritis after the meds for Gout no longer worked. Even with the pain he still managed to have a great landscaping and design business, specializing in designing ponds and waterfalls; to make your yard as "unique as you". In July he went to his doctor stating that the meds where not helping at all and he was having a lot of pain. And now it was also in his shoulder. This doctor decided to treat him with one of the newer infusion drugs, Remicade. He had his 1st IV infusion towards the end of July with no results. Two weeks later it was repeated; but this time he noticed he became extra tired very easily. He reported this to his doctor who said it was just part of the side effects. But he was getting so tired and more pain he was no longer able to work his 14 hour days and even started to take days off (unlike him). He constantly contacted his doctor who still said not to worry. So he went in for his 3rd treatment and within days (the first week of Sept) he was rushed to the hospital with severe chest pains. His local hospital was so sure it was a heart attack they sent him by ambulance to the nearest major hospital, Yale New Haven University Hospital. After running more tests they did not agree with this diagnosis and thought it might be a blood clot in his lungs or heart and test where scheduled immediately. They did an angiocardiogram to scan for blood clots; as well as numerous CT Scans. But they where clear and the doctors where stumped. But this catheter caused a tear in one of his arteries and blood leaked into his back causing another serious problem, which was resolved.
Doug spent many days in ICU because his blood pressure would never stabilize. He went through many, many CT scans over numerous parts of his body. Involved in all of his problems were his: kidneys, liver, bone marrow, nervous system, brain, and stomach/intestines. He did have his gall bladder removed and came home for 3 days but spent most of Sept until his death in Yale Hospital; most of it in the ICU. He had some good days when he knew what was going on and who everyone was. But in the beginning of Dec. he had a massive heart attack and was legally dead for over 30 minutes but was bought back. By this time he had to be on kidney dialysis continuously to survive. And his brain damage left him with a "foggy" memory. There were many specialists on his case: Rheumatologist, Cardiologist, Gastrologist, a Renal specialist and many others.
At first when it was discovered he had Amyloidosis, sometime in Nov. they told us it was Primary, but within weeks they said it was Secondary. His wife had been told he had approx. 18 months left. Towards the end they were baffled and said it seemed to be Secondary but was spreading like Primary. We had a family meeting with the doctors who told us everything from how the organs where suppose to work, to what the Amyloidosis was doing to the organs and that it was irreversible. They also told us that there was no treatment they could use because when they tried to treat the Amyloidosis, because of the Hepatitis C, his condition rapidly decreased to a serious mode. We told him that Doug never wanted to live on machines like a vegetable and that was where he was headed and no narcotic they had decreased his pain level at all. And most of the time he couldn't talk and all he did was lay in bed for the last 40 days. He didn't even watch TV. We did bring in a CD player because he was a drummer in his own Christian Band and made 2 CD's at one time. He always loved music. He even managed to make his way up on stage with the Grateful Dead numerous times and jammed with them he was so good on the drums. He loved Rock & Roll!
So finally, as a family we decided to shut off all of the life support. We were told it could take hours or days but, thankfully, by 2:10 am that morning his suffering was completely over. We had watched him for the last 8-10 hours watching him sleep as he went into a light coma and so his passing was very peaceful and without pain.
He leaves a daughter, 2 grandsons, a wife, 3 sisters, his parents, nieces & nephews, and many other relatives & friends.
We have since learned that FMF is now in our family so we will be having some genetic testing done; this could possible be the cause of Doug's Amyloidosis. Untreated FMF leads to Amyloidosis.
Here is a poem my brother wrote before he passed:
Journey With God
by Douglas Scot Fitzgerald
Every day is a Journey with God
>From the early morning sun rise
to the going down of the same
As I walk in the light, he shows
a narrow path for me
As I journey down this path
His word directs my steps
He teaches me along the way
When I run into varies temptation
to go to the left or go to the right
God invites me down the narrow path
There's never a dull moment
walking with the Lord
When your steps are ordered by the Lord
He shines his light at the end
of the narrow path
I've made it at last!