Hi there, and thanks in advance for anyone who has anything to provide – I greatly appreciate your help.
My dad is 63, and has MDS with 20th chromosome deletion. He’s had Crohn’s most of his life, and was diagnosed about 3 years ago. He was given 2 years to live, due to the fact he was already very ill, underweight, and not in condition to receive any treatment aside from epogin/nupogin (excuse spelling on those) injections and blood transfusions.
The past 3 years have been awful, no two ways about it. My mom takes care of him full-time, we’re all close, and it’s been a slow decline.
None of the treatment stuff has helped, only blood transfusions. For a couple of years he was getting 2 units of blood once a month or so, when his crit hit 27. They’ve sped up quickly, and he’s now getting 2-3 units every other week.
Last week, he wound up in the ER because he hadn’t eaten for a week and was incoherent. He took 4 units of blood, tons of fluids, 2 IV antibiotics, and wound up staying 2 nights. He admitted later that he’d kind of lost himself in the haze and they’re now talking palliative care.
…except now, exactly one week after having 4 units of blood transfused, he’s down to 27 again.
I’m afraid that he’s going to be getting blood on a weekly basis. It’s getting worse, there’s nothing we can do to treat it, so we just try to improve quality of life. I doubt it’s long before we head into hospice and at that point, it’s a matter of days/weeks before he’s gone.
So for anyone who has seen family/friends go through this, can you provide any insight into what happens when the blood transfusions get to a weekly schedule? How long does he have before it goes even more downhill?
On a good day, my 6′ tall dad is about 110 lbs. He’s skin & bones.
I realize that this isn’t any exact science, but given that this board is directed at individuals who have/know people who have/had MDS, I’m hoping to get a first-hand view on this.
Thanks again for anybody who has any info/input. I greatly appreciate it.
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