Our recent ALS Adventure

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Active member
Oct 23, 2022
My PALS, Chuck, was diagnosed in June 2021. His progression has been very slow during this time with mainly loss of mobility in his legs. All along his lung function numbers have been 85-89%. In May, he timed out of the COMBAT trial with ibudilast. A month later, he started on the Healey regimen F trial. In early July he noticed that his breathing was affected when he slept on his stomach, but no other respiratory issues. In late July, he was struggling a little more with his breathing when sleeping.

At his ALS clinic visit at the beginning of August, his lung function was 41% which shocked Dr Bedlack. He said it was very rare to have such a quick decline. We immediately stopped the Regimen F drug to see if that was the culprit. We got a Trilogy NIV two days later and it helped him sleep. But in the next 7-10 days, he needed to use the Trilogy more and more; without it, he would have gasping/shortness of breath episodes. We had the Trilogy settings checked several times but nothing helped.

We spoke to Dr Bedlack on Thurs and he recommended going to the ER to check for pneumonia or pulmonary embolism, in the hopes the problem really wasn’t rapid ALS progression. The ER found clots in both lungs and immediately started TPA treatment directly into his right lung (that’s where the largest clot was). Since the procedure, he’s been off the Trilogy and breathing fine on his own, with some additional oxygen. In the last few days, he’s had lots of TPA infused into his lungs and been on IV heparin and is almost weaned off the oxygen. We’re hoping he came leave the hospital tomorrow.

The lesson we’ve learned is that shortness of breath needs to be checked out. We are relieved that he’s not in a phase of very rapid progression and had a fixable problem. The ER doctors were puzzled that we were so happy to get the blood clot diagnosis. When we explained that the alternative was looking into hospice, they understood.

We’re trying to get back on ibudilast as it really seemed to help Chuck. Dr Bedlack has to get a compassionate use approval from the FDA to get it, but he’s hoping to has approval next week.

It’s been a bad few weeks, but we know we’re going to keep seeing breathing improvements as the lung clots are dissolved. Hopefully we can put the Trilogy in a closet for the near future.
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For sure, any sudden, dramatic decline in breathing should be explored. Thanks for sharing, Lee, and I too hope you can shelve the Trilogy for a while.
I guess my main point is that our PALS may trend towards being sedentary which makes them susceptible to blood clots. Just be diligent in watching for problems that might be clot-related.
That susceptibility to both clots and edema is why [passive or active] range of motion exercises can be really helpful.
Lee, thank you for sharing your experience. Good to know.
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