Blood clots after AA

[flyguy]

Hello- It's been a while since I posted. Had dx lymphoma of AA about 4 years ago and got ATG 3 years ago with no success. Couldn't tolerate IST meds but have slowly improved in last 1 1/2 years to have mostly normal lifestyle and blood numbers. HG 11-12, RBC 3, and PLT 70. No medication required and active lifestyle for 71 year old.
Last month I felt sluggish and feverish and went to doctor. He found blood clot in lung and pneumonia and a week later a second clot in leg. I'm now on Coumadin to thin the blood and prevent more blood clots. I was surprised to find that I developed clots with PLT count of 70.
I now read that a history of lymphoma and/or AA increases our risk of clots, strokes and heart attacks. Has anyone else had a related illness since or during AA? I guess I sort of thought that if I dodged a freight train, I couldn't get run over by a car ;-(
Thanks,
Flyguy-- Ron

[Neil Cuadra]

Ron,

It does seem that having lower than average platelets would lessen the chances of blood clots, but that's not the only factor involved. Risk factors for clots include slow blood flow, excess substances in the blood, injuries, age, weight, and of course certain black marks in your medical history. Even being tall is considered to be a risk factor for blood clots! Perhaps your platelet level kept a clot from forming sooner.

In any case, the issue now is how to take care of it. What is the treatment plan?

[evansmom]

Is there any chance you have developed Paroxysmal Nocturnal Hemoglobinuria (PNH)?

[flyguy]

Originally Posted by Neil Cuadra

Ron,

It does seem that having lower than average platelets would lessen the chances of blood clots, but that's not the only factor involved. Risk factors for clots include slow blood flow, excess substances in the blood, injuries, age, weight, and of course certain black marks in your medical history. Even being tall is considered to be a risk factor for blood clots! Perhaps your platelet level kept a clot from forming sooner.

In any case, the issue now is how to take care of it. What is the treatment plan?

Hi Neil and evansmom,
Thanks for the posts and suggestions. Rather than have my family doc treat me for the clots I opted to see the hematologist who cared for my lymphoma and AA. He thinks the lymphoma isn't a factor in the blood clots and has seen others with PLT levels less than mine develop clots. I was put on Coumadin in the hospital and am having a really hard time getting the level low enough to stop my bruising, nosebleeds, and hematomas. He has cut the Coumadin down from 5 mg twice a day to 1 mg one day and half mg the next. Maybe my platelet count IS a factor in attaining the correct level for the blood thinner.
Neil, I'm sure there are lots of factors that go into the risk formula for thrombosis and embilism. I guess ultimately, life is a risk factor! The longer we live here the more there is gaining on us, statisticly. I wasn't aware of anything I could have done to lessen my risks but am activly committed to treatment even if it means wearing support hose indefinitely:-(
I think all activity or inactivity is a compromise. I exercise for my heart and risk bruise and hemorrhage from thin blood-- Guess lots of decisions boil down to enlightened judgement versus Quality of Life.
Thanks
Flyguy-Ron

[susansr]

Hey Ron,

I too have been away from this website. sorry folks. Just read about your issue with blood clotting.
Did your doctors consider injections of other meds instead of treating you with coumadin?
As a fellow AA patient, I thought we would not be prone to developing blood clots. Wrong!! There are other "clotting factors" that allow even us to develop this problem.
I had a deep vein thrombosis in my calf following a trip to Italy this summer.
The treatment plan was an injection for 3 months daily of "Enoxaparin"; it belongs to a different family of blood thinners than coumadin.
I sent you an email with more details.
Hope this is helpful.
Susansr

[MDSPerth]

I am no expert but can only give this comment. Paul is on EPO to help elevate his red blood cells. This has worked well raising them from 90 to at one stage 153. However, his doc has adjust the frequency of the dosage because they don't like them to sit above 120 (despite the fact that that is lower than the 'normal' range) because of the increased risk of clotting. Its hard to get your head around when platelets can be at 24

[flyguy]

Originally Posted by susansr

Hey Ron,

I too have been away from this website. sorry folks. Just read about your issue with blood clotting.
Did your doctors consider injections of other meds instead of treating you with coumadin?
As a fellow AA patient, I thought we would not be prone to developing blood clots. Wrong!! There are other "clotting factors" that allow even us to develop this problem.
I had a deep vein thrombosis in my calf following a trip to Italy this summer.
The treatment plan was an injection for 3 months daily of "Enoxaparin"; it belongs to a different family of blood thinners than coumadin.
I sent you an email with more details.
Hope this is helpful.
Susansr

Hi Susan,
Great to hear from you again. I remember that you like to travel and glad you made it to Italy. Never heard how your trip to England went a couple of years ago. Yep, I considered my blood to be too thin to get a clot, but we are "special" folks, I guess. My platelets were at about 67,000 when I got my clot. I'd been diagnosed with pneumonia a week before and didn't respond to oral meds and got a DVT in leg and went to ER. CT scan found several clots in my lung and one in leg. They kept me 4 days in hospital with IV antibiotics and IM lovanox (Enoxaparin). Was discharged with Coumadin 2 mg a day and directions for one injection a day. First INR/PT level was 6.6!!! I got vitamin K pill immediately and the injections and Coumadin were stopped. I'm now on 1 mg tablet a day and no injections. I've been back 5X and only last visit did PT drop to 1.6. Doc and PA both said they have never seen a patient with such a strong reaction to Coumadin. Some patients get 10mg a day.
I wasn't on any trips, but had been taking lots of naps because of the pneumonia. Before I got sick I was riding my bicycle up to 60 miles a week and going to yoga and gym 2X weekly. I guess we just keep on getting the payout from winning the "poopie lottery". It took almost 2 months to start getting energy back, but I'm well on the way again. What dose of Coumadin are you on now and did they prescribe those terrible rubber support hose for you? Did you get a strong craving for green salads? The vitamin K in them must make it appealing since the body knows the blood is very thin. I'm supposed to get PT monitoring for at least 9 months and may get to go on baby asprin indefinitely after that. When you dodge a train like AA, you don't expect to be run down by a car! It doesn't seem fair, but nobody said it would be, did they?
Thanks again
Ron

PS-- didn't get email from you but new address is rondewees@att.net

[susansr]

Ron:
Sounds like quite an awful experience you had. Thankful you're on the mend and hope you can return this spring to biking and flying? again.

I was never put on coumadin. My doc just had me get the injections daily for 3 months and that was it. There was no follow up. It was assumed the deep vein thrombosis would be dissolved or "no health threat" after the 3 month treatment.

Will try to resend the original email.
Susansr