With all Respect and to the Memory of my Father.

Hello I would like to tell the story of my father. He passed away at the age of 59 (1946-2005).

Unfortunately there's not too much I can say his case resembles 80% or more of the people here in the memoriams.

He was diagnosed late just as most; we suspect he had Primary Amyloidosis, (Multiple Myeloma) for maybe 2-4 years before a DX.

He would have survived more then likely years with myeloma(it was only in stage 1) but the Amyloidosis that attacked the heart which was the main area it affected him took him down quick.

From what i have seen you don’t need Mayo clinic, or Boston unless you live there sure. His team of 4-6 Drs. worked just as hard , got him finally diagnosed within 2 days, but his first cardiologist did not catch it(took 1 month later after he switched cardio's that the quick dx happened). Depending on how bad it damaged the heart (stiffened), there was a limit of what could be done in his case since it was severely damaged.

All they could do is try to relieve the symptoms like using prednisone to relieve swelling, and maybe one or two others. Many diuretics (need to be careful with some of them as they lower blood pressure) , Thalidomide ,all the other conventional treatments, including some alternatives his team used at the end to help his blood pressure and his level of awakeness (fatigue).

It all depends on if it is caught early.If caught early it will not defeat you so fast and maybe can be controlled(possibly more).

In his case now looking back he started feeling tired a few years back, in the first months of 2005 he wanted and told me to walk with him because he wanted to get into shape thinking that was the problem.

He went out of town after that and during a recreational trip all the sudden he could barely walk without gasping for air, or becoming extremely fatigued.

He went 3 days like this out of town and when he came back he went to his internist and the Dr. did not like what he saw in the x-ray.

He was later that day admitted to the hospital and had tests done and checked for blockages.

After switching cardio's he was dx'ed fast(took a month of the 1st cardio testing for other things.)

The amyloidois gave him Congestive Heart Failure which could be broken down into 2 subgroups. Restrictive Cardiomyopathy, and Diastolic Heart failure.

His ejection fraction was fine, the problem in his case was do to the heart muscles being stiffened(restrictive cardiomyopathy) caused by the amyloid, his left ventricle did not open enough to get sufficient blood into the left ventricle.

LVAD's only work for ejection and i dont think there is a device to make the heart open up more to recieve the blood needed which was what he needed.

He could have went to a different country and get a heart but more then likely he would have not survived the flight and i think the surgery.

As time passed he was still ok, alot in bed, but could talk and do eveything as a normal person would, but he could only venture out for short periods then he would be very fatigued and had to rest alot after.

After 3 months things got worse, his blood pressure was dropping lower then it was. It was already low and since he did not speak too much tome about this i am guessing he had a pressure of 85/?, after the 3rd month it dropped fast to the 50's/? and he was getting all his meds intraveniously including Dopamine which helped keep his blood pressure up and provigil 2x200 mgs. a day to try to keep him awake.

By that time his team have tried it all, all the different types of blood thinners, medication to make the heart work better and not strain it(forgot the names sorry).Thalidomide, and cocktails of 5-8 pills i seen in the prior months.

By now after 3 months he was bad, could not walk anymore at all , blood pressure around 65/? , he passed out when we took him to the restroom and didnt even know it,and the swelling in the legs and abdomen could not be reduced anymore. He was in the hospital for many days and all his team finally told us there is nothing more they can do. They tried it all over the prior months.

He came home the next day by Ambulance and with Vita's Hospice care. He made it thru the night and talked but he said he had to force himself to talk. I always asked him are you feeling pain and he said no but that he feels like crap.

He died the next day 3 and 1/2 months after confirmed DX,he died in the month of May 2005.We knew it was coming and the Hospice nurse told us theres a good chance he will go today.She was right, and she even got it down to within 1 minute before he passed.We were all present with him, and so was his lawyer which came to say hello and had to see this happen.

I thought he might get lucky and collapse (less suffering)like others I have read, but he did not, he suffered bad and fought it till the end which led to unbearable suffering on his part.

The last 15 days were bad, the last 2 days multiply that by a bit, and the last 8 hours multiply that by 20. It was so bad I could not look.But he could not walk so there would be no collapse(less suffering). I almost wanted to end it for him poor guy. No one deserves to suffer so badly in the final hours. He did manage to tell us in slurring speech “It’s over, Bye bye(2 times)" 1 hour before his passing.

Hopefully the info about his medical will be distributed which it will about how much the thalidomide slowed down the amyloid progression and may help someone else.

He lasted less then 4 months and 1/2 from his first major symptom which hospitalized him.3 and 1/2 after confirmed DX.

All of you that read this that have someone with severe heart damage due to primary amyloidosis dont push your family member or friend to fight too hard, as much of them cannot and its a losing battle, especially with the medications they have which are zero for it(When it is severe, and in the heart).But not necc. when and if caught early.

Comfort and be there for them and when its their time it will happen no matter how hard they fight.But i must add if its caught early you might be able to battle this.

My father fought too hard, he was a combat soldier in his younger days which might have contributed to his fighting which did not help, only prolonged his suffering by days or possibly weeks.

I want to thank his team of Drs., Cardiologist Philip D.
Zinn which tried his best and got him Dx'ed within a few days, Joseph R. Holahan (hematologist-oncologist)who managed to slow his amyloid production well(but it was too late because of prior damage), and the others which I did not meet. There were 3-4 others all specialists. Also Vitas Hospice which helped during his final hours(which they also work at your home 24/7).

I snuck when i could and peeked at his medication and saw they tried and used all the weapons in their arsenal to save him, but it did no good when his heart was damaged too badly.I know they tried all, i saw the cocktails he was on the first 2 1/2 months.

We will miss him, and never forget the horrible things he went thru for 4 months (though there were good periods too, but without too much mobility).The good days and the bad, hospitalized each month for days.

I will end this here because no need for more, he took all that they could give him, his heart was too weak for stem cells or bone marrow. He suffered major swelling at all times(legs, abdomen), and they basically fought for 4 months to keep his blood pressure high enough including his edema in the legs and abdomen controlled.

Rest in peace father and no pain as i studied your disease an i knew the outcome(prognosis), the others did not , as i told them he would fall fast they did not believe me and got very angered by what i told them, but in the end all is ok(somewhat). I am sad you are gone, you will be missed by many and i am comforted that you are not suffering anymore. You held on at the end just as when you were younger in your elite special forces unit.

You will not be forgotten ever and we miss you(not just us but all of your many friends will remember you). You were too brave(strong) which led you to suffer more then needed but that’s ok, you wanted to live !!!!

Love from your son Ori .