Sorry For Being So Quiet Lately…

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bravest_hero_i_knew_amyloidosis_rectangle_magnetThe holidays were a little crazy and my father’s health had taken a turn for the worse. He passed away January 12 due to complications of Pneumonia and Amyloidosis and my heart aches every day.

Amyloidosis is a rare disease that occurs when a substance called amyloid builds up in your organs. Amyloid is an abnormal protein that is usually produced in your bone marrow and can be deposited in any tissue or organ.  Many doctors, patients, and supporters are hoping it gets classified as a cancer in the next few years so it can receive more research funding.

Amyloidosis StampHe was diagnosed with Amyloidosis about three years ago.  The Amyloidosis had ravaged his kidneys leaving them functioning only barely above the need for dialysis.  6 Years before being diagnosed, he had 1/3 of one of his lungs removed because they thought it was cancer.  It turned out to NOT be cancer, but they could not figure out what it was.  They sent samples to research centers all over the country but we never heard back.  It is now assumed that it was Amyloidosis.  The research just wasn’t available at that time.  His doctors on Long Island sent him to Boston to see if he was a candidate for any clinical trials or stem cell transplants. Unfortunatley, they deemed him too sick for both.  They did help my parents understand more about this disease, and gave him a chemo regiment to start with to help slow the progression of Amyloidosis down.

knock_out_amyloidosisHis doctors on Long Island followed the regiment prescribed by the Boston Doctors  and thankfully he had regained some kidney function back.  After 18 brutal months of chemotherapy, they deemed him close enough to remission as you can get, and they stopped the chemo drugs.  His immune system never regained its strength and food still tasted funny to him.  He continued to lose weight and got weaker as the days went on. The last few months he was on oxygen as needed.  He fought so hard for so many years but this battle proved to be too much.

We could tell he was tired of fighting.  He started getting his affairs in order, but didn’t want my mom to tell me how bad he was doing.  Even when he was in the hospital he would tell me he was feeling a little better and was joking around with me.  When I would talk to my mother I would hear the other side, how he cried out at night because it was so painful for him to roll over in bed, how she had to get him a heated blanket for each room just to keep his body temperature up, How he didn’t want me to see him that sick.

Amylodosis ribbon magnetThe weekend before he died my mother started telling me about things he was saying, and what symptoms he was having and my mind knew it was his body shutting down, but my heart couldn’t accept it. I already had a flight booked for the following weekend, but in my heart I knew I would be flying home sooner.  For a few days they thought he had Tuberculosis and informed my mother that there were to be no visitors except her and his brother who had already been visiting him every day.  I told my mother I didn’t care, I wanted to see him. She told me not to change my flight to just see how the next day was.  I got the phone call early the next morning that he only had a matter of hours.  I booked the next flight home. Tony drove me to the airport, dropped our house key off at his moms so she could check in on the cats and took the next flight in.

Tony has been my rock, just holding me at night and letting me cry and just having a knack for saying just the right thing to comfort me.   I couldn’t have gotten through this without him.

In the end we got the call  from the CDC that it was in fact, NOT TB the day after he passed away.amyloidosis awareness Because It matters

If you feel so inclined,  you can make a donation to the :

Boston University School of Medicine
Amyloid Research Fund
72 East Concord Street, K-503
Boston, MA 02118

Make checks payable to Amyloid Research Fund.

You can also make donations online.

 

 


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3 thoughts on “Sorry For Being So Quiet Lately…

  1. Maryann D.

    So sorry for your loss. My dad passed away in 2013 after being ill for a long time also. It is not easy at all to go through. My sympathy to you and your family.

    Reply
  2. Ann "Paws" Staub

    So sorry for your loss Diane… my mother also passed away recently on Dec. 17th from cancer… I can’t imagine having to deal with being sick for so long… Mine was only hospitalized for 2 weeks before she passed away so it was kind of a shock… The first week, doctors though she had pneumonia. Then they finally found out her breast cancer had spread to her lungs and she also had liver failure. It’s definitely tough. Glad you have someone to support you through it.

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