lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
I just got out of the hospital for the second time in two months. I was sent home with a PICC line in my right arm in September after having Lyme meningitis (though hospital refused to diagnose).
Last Sunday morning I was awakened by terrible chest pain. By the time I got to the ER I was trembling, sweating, and unable to breathe deeply.
The doctor in the ER had me get an ultrasound and a blood clot was found in my arm.
She gave me a disgusted look as she pulled the PICC line out and said, "This is what happens when you try to use these long-term."
Anyway, I was admitted for overnight observation and started on anticoagulants.
My nervous system is very touchy and if I'm in pain I will often go into full-body muscle spasms and uncontrollable screaming.
Well, I felt like this was going to happen so I rang the nurse just before a full-blown pain attack.
They called a code and got a crash cart and tried to intubate me!
When the pain episode started to wind down they realized it wasn't a true seizure so they put me on ativan and I was able to relax enough that the body spasms stopped.
After that, forget it. They weren't sending me home. They had to get to the bottom of it. So, I tried to save them some trouble by telling them I have Lyme disease and one of my symptoms is full-out body spasms whenever anything causes me pain.
They wouldn't accept my answer. A psychiatrist was called in the next day. He asked me many personal questions but my answers sounded so "normal" to him. He was puzzled.
I then used the words "Lyme disease" and how I've had it for five years and he gave me an "aha!" look.
He said, "How come you repeatedly say you have Lyme disease when not one doctor here believes that you have it and all your tests come back negative?"
I patiently explained that Lyme disease cannot be reliably detected with any test currently available.
He didn't believe me, and asked for permission to speak with my husband. I said, "Go right ahead." Hubby confirmed what I said from his office at work.
So, next thing I know the doctor on my case comes into my room and says, "You wanna go home? 'Cause it's obvious you don't want to work with Dr. Whatshisname, the psychiatrist."
Thus ended my latest episode at WeenyHut General.
I cried buckets and buckets of tears all morning before my discharge because I was in terrible pain from the blood clot and wasn't being given much information about it.
And the Weenies were just puzzling over my "pseudo-seizure". Like that was the important thing.
Now I have to take Lovenox and Coumadin for several months. I have an appointment with my primary for later this week.
I guess what I want to ask you all after thoroughly rambling through this post is:
How dangerous is this blood clot? Anyone else with firsthand experience and success treating one?
I plan to ask my doctor a lot of questions, but honestly, I'm scared. I cried also because I'm so tired and I don't feel like defending myself anymore.
I feel like this disease is winning and I have become a confused wreck.
I don't know where to go from this point. Antibiotics aren't working for me, anyway. I have so much nausea and gagging since the meningitis, too.
This note doesn't make too much sense but I'm trying to get all my thoughts into one post.
Lump sum: I got a blood clot from my PICC line in my right arm and I don't know how dangerous it is, how long it will hurt, and what it means for my future in this war against Lyme.
And I don't give a fig what the doctors and nurses think of me at WeenyHut General, and especially not a psychiatrist on a fishing expedition.
Good night, All. Thanks for listening.
- Julie
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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It makes me FURIOUS!!!! to hear of your experience in the hospital!!! It's outrageous!! I wish you could sue them!!!
No wonder you cried buckets! How they handled you was emotionally abusive AND medically stupid. And, it's nuts that they didn't even really educate you about the blood clot. It must have been so scary. I can't even imagine how it felt to be treated by bunch of arrogant and ignorant docs.
I am on Coumadin because I have a clotting disorder that predisposes me to clots. It sounds like they've got you on the right meds.
It's SUPER IMPORTANT that you check on any medication you put in your mouth for interactions with the Coumadin and Lovenox. www.drugdigest.org is a great website to do this.
There are many drugs and Vit. K greens that interact. They need to be testing your blood at least 2x a week in my opinion to check on the level in the beg., and weekly after that. The test is called an INR level, or PT. It should be between 2.0 and 4.0 normally. Your dr. may want it a little higher.
Make sure that you get permission to get the results YOURSELF from the lab. Typically, they fax a copy to your dr.'s office - and they may not get it, or may not put it in your dr's box, or he may not get around to checking it. If they don't give you permission to get it from the lab, call your dr's office persistently until you get that result!!!Dr. office's can be incredibly incompetent.
Feel free to PM me with any questions.
Again, I'm so sorry you had to put up with that crap! It's just awful.
Anneke
Posts: 364 | From California | Registered: Sep 2005
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posted
Also, supplements can alter the efficacy of the meds. Look up "things that interact with coumadin" on google.
Posts: 364 | From California | Registered: Sep 2005
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posted
Julie, I had a blot clot in my right arm from a very roughly placed PICC line by an idiot. My whloe arm turned purple almost right away. Very painful!
I had to take the meds you mentioned for 6 months. The worst part is frequent labs to monitor the meds.They put a new line in left arm without problem (different Dr.).
My insurance only paid for 1 month of Rocephin. Not sure it was worth it! Be veru careful of any bruising anywhere on your body.
A NP dismissed mine and I almost bled to death from a kidney stone. Hope you are feeling better soon. Hugs, Cindy
-------------------- Cindy Posts: 227 | From VA | Registered: Sep 2005
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Been wondering how you were doing. Hubby and you share so many symptoms.
He is in the hospital again himself. Neuro saw him initially when he was having a good day and gave him a clean bill of health neurologically. Saw him again a couple of days later when his muscles were frozen up from a shaking spell.
This time we got the psychosomatic diagnosis although he did say that intermittent symptoms would seem to indicate an infectious process. Of course the neuro refused to believe the SPECT scan from Columbia and refused to order any additional tests.
Have you ever tried heparin or been tested for hypercoagulation? -- HEMEX lab is the best.
So sorry you are having all these problems. Hubby has had PICC lines in continuously for over 3 years and has never had any problems other than the line plugging up due to hypercoagulation.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Julie, I am so sorry you had to go through this terrible experience. We can all relate. I hope your coumadin treatment is short - that is ugly stuff. My daughter had a similar problem with picc line which finally led us to a hematologist. She tested positive for protein S deficiency, which is supposedly a hereditary clotting disorder. Neither her father or I were positive. LLMD says that it is "acquired", and I did find research to support that - chronic infection CAN cause clotting disorders! Hematologist put her on warfarin (coumadin), LLMD wanted her on lovenox. Tried warfarin for a while, but ran into problems with med interactions. Went with the lovenox, which worked beautifully. She now maintains with Boluoke (lumbrokinase), had a port put in two years ago, which still works beautifully. Blood draws, which used to be dark and thick are of a normal consistency.
This is just one more of the conditions that can arise from longterm infection that all lymies need to be aware of. Even if clotting doesn't occur, thickened blood does not deliver meds and oxygen effectively, therefore slowing down progress.
I strongly encourage you to try Boluok or another lumbrokinase once lovenox treatment is finished.
Good luck!
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Thanks, everyone, for your responses.
My LLMD did test me a couple of years ago and said I have hypercoagulation. I was taking nattokinase when the blood clot episode started.
Anneke, I'm going to write a list of all my meds and supplements and take them to my pharmacist this afternoon. Thanks for the advice about getting the lab results sent directly to me or being persistent with my doctor's office.
I just called to make an appointment at my doctor's office and told the receptionist I have a blood clot and was just placed on coumadin so I need an appointment right away. She says, "Hmmm, we really don't have any openings anytime soon."
I said, "Uh, well, we better find one because I need to be monitored closely."
She then says, "Well, we could see you at 8:15, 9:00, 9:15, or 9:30 tomorrow morning."
Thought she said there weren't any openings anytime soon.
Cindy, thanks for the heads-up about bruising. My dad is on coumadin and he has dark blotches all over his hands and arms. If he just bumps himself he gets a massive bruise.
Hi Bea, I'm so sorry your husband is in the hospital again. Yes, he and I do seem to share a lot of symptoms. I know how blessed he and I both are to have supportive spouses.
I think I'm done with PICC lines because I've had one 4 times and the IV antibiotics they delivered never really helped long-term. Every time I've had a PICC I've had something major go wrong, too.
Lymeout, probably my thick blood is one reason I don't get better with antibiotics. I will talk to my LLMD about a lumbrokinase after I'm done with lovenox. Thanks for the advice!
Thanks, everyone, for sharing and for your thoughts! Now, I think I will lie down for a few minutes before my son comes home from school.
Take care, Julie
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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Thought she said there weren't any openings anytime soon.
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