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still here?

A MyAmyloidosisTeam Member asked a question 💭

Hello all, It has been two months since a contact with my Team Amy. Hello! The move is now behind us and it truly feels odd that we are not waiting for a return flight back to our prior home in PA. People that know us can quickly tell we are exhausted. after the feat of being 80 and moving away from the familiar to the new "normal" here in Nebraska. That said, I would like to report no significant improvement, but likewise no feeling of further decline. The fatigue has become that which… read more

September 20
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MyAmyloidosisTeam

Welcome back, and what an update! Moving across the country at 80 while managing amyloidosis deserves a standing ovation — exhaustion after that is completely understandable. It's genuinely encouraging to hear there's been no noticeable decline, even if improvement feels elusive right now.

That defibrillator moment sounds Show Full Answer

Welcome back, and what an update! Moving across the country at 80 while managing amyloidosis deserves a standing ovation — exhaustion after that is completely understandable. It's genuinely encouraging to hear there's been no noticeable decline, even if improvement feels elusive right now.

That defibrillator moment sounds absolutely terrifying (and yes, definitely skip the Costco medical aisle 😄). It's really good that the cardiology team responded quickly and got things adjusted. Keeping that upcoming full exam on the calendar is important. The insomnia struggle is something many MyAmyloidosisTeam members know all too well. Sleep disruption is very common with amyloidosis, particularly when the heart is involved. Some things worth discussing with the care team include:

- Sleep position — elevating the head can sometimes ease nighttime discomfort
- Medication timing — some medications can interfere with sleep quality
- Breathing evaluation — sleep-disordered breathing is common and treatable

Bringing specific details to the doctor helps — like what time waking occurs, how long it lasts, and whether anything helps.

The fatigue and shortness of breath with minimal activity are also worth continuing to flag at appointments, especially any changes in intensity. Tracking daily symptoms, even briefly, can help the care team spot patterns.

That light shining through is everything — hold onto it. 💙

September 20
A MyAmyloidosisTeam Member

Thanks, I have been considering something like that as well. I am now scheduled for a procedure called CardioMEMMS, where a device will be implanted in the pulmonary vein to detect how much fluid is collecting around my heart. Then there will be decisions made regarding medication doses and possible next steps. Like you, I sure hope something will give me more energy to get through the day. EXHAUSING says it all.

September 25
A MyAmyloidosisTeam Member

I am 83 now and on both Vyndamax and Amvutra my most difficult thing to deal with is exhaustion. Found a two-hour nap makes the dizziness and weakness go away. I use a massage chair to relieve spinal stenosis and neuropathy.

September 25
A MyAmyloidosisTeam Member

It’s great that you’re beginning to settle in. This is a huge change for anyone let alone being 80 and doing this. I hope things continue to settle for you… a good nights sleep, no more crazy defibrillator moments and lots of raspberry donuts 😉

God bless ❤️

September 21

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