posted
Took rosebuds advice and went to the ER. First they thought it was just a small little clot that wouldn't be a problem. But then they drew blood and did an ultrasound and turned out to be a big clot and one they said was very serious. A DVT that they were worried could break off and travel.
They wouldn't let me leave, said I needed to be admitted now and they wanted to do an immediate CAT scan to be sure I wasn't throwing off little clots continuously.
They gave me an injection right away to help thin my blood and then READY FOR THIS ...
They said the PICC had to be pulled!!!
So here I am at 1:35am lying in a Cleveland Clinic Hospital bed, no more PICC line, and to scarred to sleep. What if something happens while I'm sleeping, how would they know? I don't have anything hooked up to me.
They say I'm gonna be here at least 2 1/2 days, and then be on coumadin for at least 4-6 mths. If they won't put the PICC back in here then the Dr who is treating me better not back out and refuse to order a replacement!
I didn't want to jinx it by saying anything but I was actually feeling some improvement while taking the rocephin. I hope everything doesn't rush back with a vengeance.
If you've been through this, had a DVT could you please share with me? I'm really worried and honestly afraid of going to sleep.
Thanks for listening.
Posts: 86 | From Fort Lauderdale, Florida | Registered: Sep 2010
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posted
Your going to be ok, I'm sure they will be checking on you as you sleep.
I didn't have this problem with my picc line. Others that have will post later I'm sure.
It is doubtful that Cleveland Clinic puts the line back in even when you are better. I'm surprised they aren't rolling there eyes at you already when you discussed the reason it's there in the first place (Lyme disease).
You may be one of the people who can't do a picc line. Therefore you might do better with a Hickman port which goes into the chest area.
Also, find out if they cut the ends off your picc line to do cultures.
Good luck to you.
-------------------- HERX is a Four Letter Word! Posts: 716 | From If you're going through hell, keep going......Winston Churchill | Registered: Apr 2007
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littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
I'm sorry to hear what you are going through- I don't have a PICC line so I have no experience. I'm scared to death of those things.
But (and I'm not sure the rate of remission) there are rocephin shots instead of IVS. I've known some to get a little better one them instead of the IV.
feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
chik~
ugggh, when it rains, it pours! The hospital did the right thing by pulling your line. If you were clotting, it had to go.
bigStan is right, some folks just can't do the PICC. Tracy9 is one. Maybe a port is in your future??
If you were feeling a bit better on the rocephin, that is a GOOD thing!! You can look forward to improvement with, maybe, IM rocephin or IM Bicillin....
I know it's difficult, but try to rest. your worry won't change a thing...honestly. what it will do is make you sicker. Maybe they can give you something to help you relax? Stress is not good.
Anyway, hang in there....you're being attended to and thank goodness you listened to rosebud!!
best, ff
Posts: 3975 | From usa | Registered: Aug 2007
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posted
Oh no! So sorry it turned out to be serious. It must have been very scary. I am glad they took your picc out, it was definitely necessary. I hope they are making you comfortable whilst you recover, you deserve a lot of TLC after what you have been through. I wish you healing sleep. Keep us posted
rosebuds mom
Posts: 118 | From Here | Registered: Sep 2008
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Dawn in VA
Frequent Contributor (1K+ posts)
Member # 9693
posted
I had 3 clots from a PICC. Not as serious as your situation, though. They pulled my line, put me on Luvnex (sp?) shots for a while, then on coumadin.
I definitely agree with Bea above about the HEMEX panel. You should get checked for MTHFR and MTR mutations as well, as these can also be a contributing issue.
I totally understand your fear about not sleeping tonight. I had the same thing. I don't think there's any comforting that fact; my anxiety was really high too, understandably so.
If you can't sleep, don't fight it and don't feel that you have to- just watch TV in your room, read a book, etc. Do some meditation for calming purposes and/or prayer for the same, and do some visualization exercises that that clot getting smaller and smaller until it's no longer there.
Tomorrow night my bet is that your body will be telling you it's OK to rest.
Above all, be gentle on yourself and avoid stress where you can. Don't even be remotely concerned about getting another PICC inserted in the other arm right now. Your DVT issue is more important. Once your on the coumadin, it may act as a preventative measure, so at least wait until your coumadin levels are up and steady.
Be well tonight. Saying some healing prayers for you.
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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posted
hi Everyone for your wonderful support. Sorry I didn't respond back sooner. But this has been one rollercoaster of a ride!
Ok so I'm home now. But the next day I a diff. Dr. comes in with a whole other story. I don't have a DVT, it is superficial but I still need to be on coumadin for 3-6mths. I ask why I was told it was a DVT, so very serious and that I needed to be in hospital for 2-3nights. He says maybe after CT scan was read the diagnosis was changed.
About 5hrs later yet another Dr., this time a resident, comes in and tells me you're being discharged, you should treat with over the counter anti-inflammitory medication like motrin, use hot compresses and basically SEE YA!!
Needless to say I do not have confidence in this treatment. I went from having a DVT that was extremely serious, couldn't leave the hospital, and being put on blood thinners for months, to no DVT, having a superficial clot, and still needing blood thinners, to being told yeah you got a clot but go to drug store and get some motrin and get out of our hospital.
I have an appt. with an internal medicine DR. on Fri. However, it seems my biggest fear is coming true, the Dr. who is treating the Lyme is actually hesitating to even see me now. I have an appt. for May 2nd, but he has commented that he may cancel that. And when I asked about putting the PICC back in, they said he is thinking on it. Shouldn't he want to see me a lot sooner rather than later?
I knew this guy wasn't exactly Lyme literate but this is ridiculous. I really need to find an actual LLMD.
****Dawn you were still put on coumadin even though it wasn't a DVT? I know coumadin is a pretty heavy duty drug and don't want to be on it if I don't need to be. However, I don't want to have any risks from a clot either.
How soon after your clot did they replace your PICC Line?
Thanks for all the advice.
Posts: 86 | From Fort Lauderdale, Florida | Registered: Sep 2010
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
So sorry you are going through this, but I think I can help shed some light on this one!
I have had five blood clots from PICC lines and peripheral lines. I am very, very well versed on this subject.
My last blood clot was in the upper arm, about 8 inches long. I can assure you that you probably did not need to be admitted to the hospital. Clots in the arms are RARELY serious. It's the ones in the legs that are serious. Clots in the arms are almost always referred to as superficial. Occasionally they will call them DVTs if they are near a certain artery ( I can't remember exact names now, I knew every one before!) I know it is subclavian and brachial, and they did call one of mine a DVT because it was near I believe the subclavian vein, in the branch, but in the brachial artery.
It's kind of misunderstood and they overreacted, is the bottom line, probably when they saw the size of your clot. I've had some that were tiny dots, and then this one that was almost a foot long, and the treatment was the same. Coumadin, hot compresses. Nothing else. Clots in the arm are not extremely dangerous like those in the legs are.
The bigger problem is repeated clots. The more you get, the more likely you are to get them. I can attest to that. My last two were at the same time, one from a PICC and one from a 4 day heplock. I am now on Coumadin for 2 years thanks to those suckers.
I have a genetic blood clotting disorder, Protein S Type 3. It has nothing to do with Lyme. I was born with it and it was responsible for recurrent miscarriages. It's not safe for me to have a PICC line.
I now have a chest port. It is a little controversial, but I'm on Coumadin and it's in a larger artery, so my current hematologist felt it was safe. I've had it for almost four months now and no problems. I never had a PICC line make it to 2 months.
I hope this helps. You won't be on Coumadin forever. You should be able to get another PICC line, especially if you are on Coumadin, but if you DO have a clotting disorder that may be up for discussion.
The best thing you can do is go see a hematologist and have them work you up and advise you. That's what I did.
Don't be too worried. I think the hospital overreacted, your DVT was NOT extremely serious, it wasn't even a DVT. I've been there. Generally NO clots in the arms are ever considered to be DVTS, only clots in the legs, but some hematologists will call them that if they are super close to the ?subclavian artery or vein.
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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Dawn in VA
Frequent Contributor (1K+ posts)
Member # 9693
posted
I was on Coumadin for maybe ~ 6 months. One of my clots was in the Subclavian. One of them was in the Basillic and pretty much wiped out that particular vein, and I can't recall where the third was.
The Luvnox shots were for the first 2 weeks; they are given while one gets one's Coumadin levels up to par, as it takes a bit to do so. Personally, I'd much rather be on it compared to NOT being on it in that situation. Being on it didn't seem to affect me in any negative way. You just have to make sure to keep your VitaK intake consistent and get weekly prothrombin time/INR bloodwork done.
I did not get a repeat PICC, as that was the third time in one month that I had to have mine pulled- the other two were for phlebitis (vessel inflammation).
I am certainly not a medical pro, so this is just my opinion, but if I were in your shoes I'd ask to be put on both. I don't know what the deal is w/one doc saying one thing, and others telling a different tale, but that whole thing seems rather kooky.
Did they do a repeat doppler? If not, that's extremely irresponsible medicine on their part. And also if not, I'd suggest that you definitely get one done ASAP. Heck, go the ER if need be and tell them what happened in order to get one done if your doc won't order it right away.
I really don't intend to be a big scary poster, but my experience was so not fun and I'm definitely an advocate for erring on the side of caution with this stuff.
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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***Tracy thanks for the info. You situation is defintely way worse than mine. They did tell me it was not a DVT and ended up telling me just to take motrin, they didn't put me on coumadin. Their story kept changing and this is why I am not too confident in there treatment strategy.
I do have an appt. with an internist on Fri. so I'll see what he has to say.
***Dawn those were my thoughts exactly. I'd rather be on them then find out too late that I should have been on them all along.
They didn't do a repeat anything before they discharged me. But my nurse knew how upset I was about all the contradicting information they were giving me and she suggested that when I went for a follow up that I should get a repeat ultrasound.
And I agree with erring on the side of caution.
Posts: 86 | From Fort Lauderdale, Florida | Registered: Sep 2010
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