Topic: Yes Tracy, in fact you DO have a blood clotting disorder!
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
ARGH....went for follow up visit with Hematologist today. She got my records from 2003 from Yale New Haven hospital where I clearly remembered being told I had a blood clotting disorder that was causing my multiple miscarriages.
Sure enough, there it was. It was a different test than the many they ran; it was Protein S but Yale did in some sort of way that subtests different parts, and they just ran it as one test.
So now I will have it run again, but of course it all makes sense; I've had two blood clots from my IV lines.
So now I have to be on Coumadin while on IV. I'm glad it got figured out, as my arm has been swelling up and down each day. I also realized I didn't know when I should consider it swollen enough to go to ER; today it is 2 cm larger than yesterday and day of insertion.
We agreed that if it reaches 4 cm larger, I'm off to the ER. When I had the first blood clot, it was 6 cm larger.
I'm so glad I finally got this figured out, and that I am going to be on the Coumadin. I feel much safer about the whole thing. It will be interesting to see if the test still turns up positive now.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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feelfit
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Member # 12770
posted
good luck Tracy and keep a close eye on things. It may just be swelling from insertion trauma right now as the line is new. Are you doing hot compresses?
This helped my swelling and redness go away after a week.
However, I never had clooting problems, so just keep a close eye on things....seems like you have things under control.
Best, Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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posted
Sheesh! That's scary that no one figured this out earlier... esp in light of your clotting problems.
Hope you do well on the coumadin.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Haley
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Member # 22008
posted
What is the specific test for checking if you have a blood clotting disorder? I am having a port put in and I think that I may have something like this. I am seeing my Dr. tomorrow. Do you get Petechia(little red dots everywhere). Do you have other symptoms besides swelling?
How long have you had your IV line? Is it a PICC line?
Sorry about all the questions.
Posts: 2232 | From USA | Registered: Aug 2009
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posted
I wish you sucess on this one Tracy!
Posts: 261 | From Piedmont | Registered: May 2008
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richedie
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Member # 14689
posted
Tracy, do you have Lyme and co-infections as well? What were the signs you had a blood disorder? Makes me wonder now.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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bettyg
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tracy, best wishes; 6 yr. error in not releasing the info in written form so you could check to see what the results were.
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Tracy9
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Member # 7521
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Haley, there is no one test; they drew 24 vials of blood yet missed this one test I'd had back in 2003.
I had a PICC line in January and within 24 hours had a blood clot. The symptoms were SEVERE pain and swelling. I didn't even know about the swelling, the visiting nurse came and measured my arm and sent me straight to the ER, where they did an ultrasound. They saw the clot and pulled the line. I felt like I was dying, I had such severe chest pain and shortness of breath.
Then I had ten weeks of IV through heplocks. I got a blood clot in one of those too, so they wouldn't do them anymore. In fact all the veins in my right arm are ruined because of doing the IVs that way.
Back in 2003, I was going for fertility treatment. They told me I had a blood clotting disorder that had probably caused my multiple miscarriages. This is why I saw a hematologist this time after getting the first blood clot, because I remembered being told that, but they found nothing.
Evidently it is Protein S, and you can do the test in one shot or in subtests, and it was in the subtests that Yale New Haven found the clotting disorder.
The hematologist had just done it in one shot, and it showed normal. So now I will have it repeated, although obviously I have my answer.
I feel better now and not so paranoid about my arm swelling; it's been up and down 2 cm off and on since I got the PICC last Friday. The hematologist said it it gets to 4 cm larger, get to the ER. Being on Coumadin should keep me okay, though.
Now if I can just get my meds...five days with the PICC line and still no meds.....
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
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Member # 7521
posted
Actually upon researching it a bit, what I have, Protein S Deficiency, is extremely rare.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
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Member # 7521
posted
Found my notes from the hematologist appt today.
What I have is a Protein S Type III deficiency: free Protein S antigen is reduced, the total Protein S antigen level is normal.
When I was worked up after my blood clot in my PICC line by the hematologist, only the Protein S antigen level was ordered, not the Free Protein S antigen, so it was completely missed.
Prognosis
10 fold increased risk of thrombosis.4
Venous thromboembolism develops in 60-80% of patients who are heterozygous for Protein S deficiency.
The remaining patients are asymptomatic, and some heterozygotes never develop a thrombosis.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
So I guess there is no way for me to determine if I have this. I guess you got lucky. Good for you!
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
You can determine if you have it if you have the test for Protein S deficiency, all three parts of the test, not just the total antigen.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
<<<<< Tracy >>>>>,
Glad they found out what the problem is finally, prayers going up for you !!!
Just Silverwolfi
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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Haley
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Member # 22008
posted
HI Tracy,
Sounds like a scary experience. Thanks for all of the details. What is IV through heplock. I guess that is what I had. My veins are messed up from all the IVs. That is why I am nervous about getting a port. I feel like there may be issues with my blood and I can't afford to lose any more veins.
Posts: 2232 | From USA | Registered: Aug 2009
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Heplocks are peripheral IVS, like the kind you get when you go to the ER and they give you some IV fluids; they are temporary. I had to get a new one every week.
I think a port is a much better option, it saves your veins. I tried to get a port, but could only get another PICC Line. The PICC saves your veins too, you aren't getting constantly poked and building up scar tissue.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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