Support Donald's Fight Against Amyloidosis

Hello friends,

As many of you know, my husband Donald has been diagnosed with systemic amyloidosis of his heart. He has lost a lot of weight since the onset about 3 months ago. He can no longer stand without his blood pressure bottoming out. Thanks to his good friend Roy and my sister, we've acquired a scooter, wheelchair, and commode for him. We are also getting a hospital bed.

The problem we are running into is a ramp so I can get him to his much-needed appointments and a general bathroom remodel, as he is unable to access the toilet and shower as it currently is. I don't know what other changes will be needed as we are waiting for the kidney biopsy results.

I have taken family medical leave to take care of him, but I am uncertain of what his future needs will be. Having a ramp and proper shower for him will greatly help us.

The biopsy came back with a final diagnosis of AL- Amyloid Nephropathy. Donald will now need a bone biopsy, cardiac MRI . His treatment is a full bone marrow transplant. We will have to travel to either Brigham Mass. Or Rosewell Park in Buffalo (All depending on where the specialist is.) It will be a difficult treatment. We will need some help with travel expenses and hotel stay. Any help will be greatly appreciated, and thank you in advance for all the kind words and prayers .

Donald has gone through a battery of tests this week .Today is his Cardiac MRI and his last test is a fat pad biopsy ( not scheduled at this time) , we will then hopefully start in his treatments.

It is because of the support from family and friends, he has managed to stay focused on his recovery. We can't thank you all enough.

We are looking at having to stay in Boston for at least 1 month. The hospital doesn't not have accommodations for spouses and the hotel rooms are 200 plus and they all have parking fees.. Another hurdle to overcome .

Donald had his first round of chemo, and it isn't working. He's tired and frustrated. He is no longer eating .

We are having to make decisions that are difficult for any family. We want to thank everyone again for their support and prayers.