Finding a specialist for Essential Thrombocythemia

Posted by j123n @j123n, Sep 4 7:22am

Hi there. My husband has "pure" ET (which I'm assuming means it is from a genetic flaw, but I really don't know) and has been on hydroxy for years. But two years ago he got a DVT in his leg and is now on a heavy-duty blood thinner - Lovenox, a twice-daily injection. (There were serious complications that landed him on Lovenox from one of the more common oral blood thinners, including a clot in his heart.) Since the onset of the DVT and the introduction of a blood thinner he has developed multiple foot ulcers. They are incredibly painful and often get infected. He has been seeing a wound care specialist once a week for over a year now to treat them, but can't seem to get rid of them. When one finally starts to heal another pops up somewhere else. These ulcers have reduced a once healthy active man to someone who has difficulty walking to the mailbox. We are losing hope and the doctors here in southern New Hampshire have no solutions, other than to switch him from Hydroxy to Interferon, which so far has not changed a thing. I think its time to find a specialist for ET, but I don't know where to start. Any guidance would be much appreciated.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

@nohrt4me

Dad had leg/foot ulcers that would not heal. Some patients develop this after years on HU. Going off HU seems to be the right move if that's the culprit, but ulcers still may take awhile to heal.

I am 6 years in on HU, but so far ok. I am 70 yo F with ET-CALR.

I think you're right to pursue specialist treatment.

I have never heard of "pure" ET. It sounds like the current doc has something specific in mind with that term. You might want to ask what he means?

I wouldn't have any problem asking my current hematologist if she could send me to to university hospital research specialists if we ran into problems she couldn't handle. Most docs now are relieved when you ask for a referral for something puzzling or suggest it themselves. The referral places like to know your original doc is involved because they get all the pertinent history, and once they figure out the best treatment, they can turn you back over to the original doc.

Jump to this post

I appreciate it. Thanks for weighing in!

REPLY
Please sign in or register to post a reply.