Thalassemia Patients and Friends
Discussion Forums => Thalassemia-related Issues => Topic started by: marisa_c on January 11, 2007, 10:56:05 AM
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Hey everyone,
I thought I'd take this opportunity to share with everyone what happened to me last year that all Thal Majors (and anyone for that matter) should look out for in regards to Pulmonary embolysms/blood clots.
In July last year I noticed that my breathing was a lot heavier than normal, I do have asthma and was going through a stressful period in my life and thought it was just because I was run down etc etc. A couple of weeks of this passed and it wasn't getting any better, along with the heavy breathing I started to get sharp pains in my upper back. Anyone that has had a bad chest infection or has had pleurisy (inflammation of the pleura, the lining of the lung), the pain was similar. I had pleurisy the year before so stupidy assumed that it was another case of it. Strangely though I didn't have any signs of a flu or virus or infection which can cause pleurisy.
It just so happened that I had a check up with my Thal specialist that week, I explained my symptoms, he did a quick check of my chest and rushed me to get an xray and a lung function test. The xrays showed 5 large blood clots in my lungs, some of which had been there for months and months!!!!! Ahhh!!
I was immediatley admitted into hospital where i was put on heparin through a drip to thin my blood and the clots. I was also put on the blood thinner warfrin. I stayed in hospital for a week and recently just got off the warfrin tablets (was on them for 6 months as a preventative).
My Thal specialist explained that Thal Majors are more susceptible to PEs/blood clots, however, my blood clots could be non-Thal related. I'm currently having tests to find out what caused them, it could purely be because I was on the pill and the estrogen in the pill increases the chances of clots.
Ok i've basically written an esssay! Sorry about that! But my point is to make Thals aware of the symptoms of blood clots so you can catch them, if left untreated clots can travel to the heart and can be fatal.
Sometimes the constant monitoring of my health is mundane and annoying, but my blood clot incident reminds me how important self-monitoring is!!
take care everyone
marisa x
:wink
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Hello Again Marisa
Yes I have had PE in 97 and that was due to a port a cath I had..I spent along time in hospital trying to recover cause my clot dislodged and was starting to travel...
I know to well the symptoms..i was coming back from malta when mine happened...I was lucky that I had a blood test on the day I arrived back to australia and they picked it up...But I discharged myself...lol
On the monday..I seen Dr Berdoukas and he told me that I am lucky to be alive today...So I was admitted to hospital that day and was in there for 2mths nearly...
Take care
Theodora
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Thanks Smurfette and Marisa,
Does anyone take a baby asprin?. Our Heme advised that it was a good idea to take a baby asprin everyday to avoid blood clots.
Regards
Bharat
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Oh my gosh, how scary! I'm so glad that you guys are ok. :sadyup
Besides Theodora, how many of you have had blood clots AND a mediport? I was always wondering if there was a correlation between the high prevalence of blood clots in Thals and mediports, besides the fact that Thals are prone to blood clots to begin with. :huh
The only clots that I've ever had were due to my mediport (which I no longer have).
Bharat, I try to take baby asprin as often as I can. Many times, I forget to take it, so I end up skipping some days. :d'oh
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It's very ugly :-\ :wah
I'm glad that you now is good :hugfriend
My doct has said to me to be careful about this... but less about Major.
For tal Major the problem is the bad formation of red cell, plus the trasf blod. For my will caused only my Red Cell shape and the "red cell dead"(emolisis)
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Marissa and Smurfette,
Sorry to hear about your problems with blood clots. What a horrible thing to have to go through. I am supposed to take an aspirin a day, but I haven't been doing it. I may have alpha gene involvement in my intermedia, and I think I remember reading something about avoiding aspirin if you have that. I am going to have to look that up again. Jean
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Thanks Jean, it wasn't nice at all! But a good wake up call to pay more attention to my body's warning signs.
I'm going to ask my doctor about the aspirin, he hasn't mentioned it as a preventative as yet.
marisa x
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I'm going to ask my doctor about the aspirin, he hasn't mentioned it as a preventative as yet.
It's most-likely because you were already on blood thinners (ie, warfarin). :)
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Thanks Danielle, that's what I assumed, but saw him a couple of weeks ago when I was taken off the warfarin and he didn't mention it.
I'll email him :)
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One other blood thinner to consider is Vitamin E, which is a nutrient most thals are deficient in, making it a win-win situation. :wink
One thing to remember is that you should discontinue aspirin or Vitamin E one week before any surgery, to ensure proper clotting after the surgery.
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To respond to Danielle's question..I got the PE due to a port a cath.. It was very scary to go through that...But now I am all clear..I was on coumadin for a few years after that...But the last 6yrs or so I am not on any anti coagulation or any asprin...
I no longer have my port either.. I got it removed in 97 when the clots were discolved with TPA..yes I had that and it was one of the worst experiences I went through...
Take care all
theodora
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Hi to all,
Ironically my mother is in the hospital right now with a PE. They dont know how she got it, but they have her on heavy duty Heparin/Coumadin.
Generally speaking, what is the best treatment when she gets discharged? Diet? Excersise? meds?
Thank You,
Christine
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That's why they made me take out my port I've had for 14 years, they were scared for blood clots also they warned me that I shouldn't take the pill for that reason too.
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hello marisa, im new to this so bare with me ha... i read your story and coudnt believe how similar your condition was to my 16 yr old daughter, louise.. she to had back pain, difficulty breathing.. was first diagonesed with gastric.. then with my persistence 3 dys later and a good doc, found she has lots of blood clots in both lungs. she is currently on warfrin & heprin injections..we have since been back to a&e on two occasions, were she has two more clots in her legs.. ive read up on thal majors.. interesting news! so hopefully will be tested in a few months when her bloods settle. lou is a bubblely girl, goes to college, works and loves life. find this page a comfort to read... thanks guys.. keep up the good spirit!!
nuala
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Hello nuala,
Welcome to the forum. Good that your persistence paid off (good doctor's are a boon too) and you found out issues with the blood clot. This highlights what Marisa mentioned earlier. Thals better take care of their body and just don't ignore signs from the body. By the way, is Louise a thal? We would like to hear more from you.
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hiya im louise my mum has wrote you a message about my clots. i only found out that i have the clots on my lungs about 5weeks ago it really scared me and my family because i seen a doc first and she throught i had a gut problem and i didnt go back to the doc i would have died a coulpe of days later so its a good job that i went back!!!!
i didnt have to stay in hospital... which im happy about but im on injections and 9 warfrin every night which i dont like!!! when they found my clots my INR was 1.0 i got my self up to 2.9 over the weeks so they took me off the injection and i droped back down to 1.6 so im back on them now! i go for my blood tests 3 times a week. no i have shown my feelings... im ok haha!! i havent been tested for thal i will be in 6months though... now my mum has found out about it so could you exsplain more about it please because we are very new to all this and its quite scary!!!
thankyou for listening
louise nuala (mother) :wink
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havent been tested for thal i will be in 6months though... now my mum has found out about it so could you exsplain more about it please because we are very new to all this and its quite scary
It is not as scary as it sounds. You cannot be a thal(major) which is the severe form of thalassemia - so relax. Most of the posts on this site might be related to thal(major). The other form of thalassemia - Minor (which sometimes shows no symptoms) or Intermedia (which can be mild or severe). Usually, if the blood reports show the Red Blood Cell size smaller (MCV value) and the person is not Iron deficient, further testing (Hemoglobin Electrophoresis is a good test) should be done to find out if a person has Thalassemia (Trait)
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hi.. thanks for the info, off on nights now ugh!!
nuala