Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I feel like I'm falling through the cracks here...with a ticking time bomb in my arm.
Short recap, since I've already posted several times and most of you already know:
1. PICC line put in January 29th
2. PICC line pulled due to clot January 30th
3. Three weeks later, mentioned to nurse while getting weekly heplock (that's how I'm getting my IV Rocephin now) that pain and swelling were still present in my arm, how long should that be lasting?
4. She called Radiologist who said no, not good, I needed to get another ultrasound of my arm.
5. Got second ultrasound about a week later, on February 26. (LLD wanted it urgently, but weekend/herx/snowstorm delayed me.)
6. Next day, Friday, began getting urgent voicemails from PCP saying I needed to be immediately admitted to hospital, I now have a deep vein thrombosis in cephalic vein completely blocking all blood flow, and it is large. It has gotten much worse.
7. Called ER to find out how to get admitted. ER doc spoke with Radiologist, who said not an emergency, can wait and see a Hematologist next week. LLD and PCP did not agree, but I didn't know how else to get into the hospital, and by now it was Friday night.
8. On Monday saw Hematologist. He felt it could be treated outpatient, gave me Coumadin and told me to follow up with PCP.
9. Today: Day 4 of Coumadin. Saw PCP. Coumadin level is only 1.2, he said this is not good, this is a very scary situation, very dangerous. I asked him why I'm not in hospital, he clearly thought I should be but was deferring to Hematologist he sent me to and wasn't going to go against him. He instructed me to go right to the ER if I have chest pain. Was very concerned.
Okay, so I feel really really short of breath unless I'm laying down. I'm sleeping most of the time (may be completely unrelated to blood clot, I don't know.) My arm hurts more than yesterday.
I was under reacting to this situation for the last couple of weeks, but having two doctors feel I should be inpatient on anticoagulants for a potentially life threatening condition is making my ears perk up a bit.
I also didn't understand until yesterday that this is not the same clot, as I thought it was. It has grown significantly, is now in a deep vein, and is compeltely occluding the cephalic vein. The original clot was superficial and required no treatment.
What should I do? I see LLD tomorrow. I sent her an email saying look, dontcha think at this point, with the Coumadin not doing anything yet, I need to be hospitalized before this baby blows and it's too late?
Should I ask her tomorrow to call an ER and ask them to admit me? What do you guys think?
Am I doing the right thing? Is this something that she can even do? She is out of state, not known by any ERs around here.
I'm so confused, but not about this: the look on the faces and the words from my LLD and PCP clearly convey that I should be in the hospital.
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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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I'm so sorry Tracy. This is NOT something you should even have to worry about. The doctors should be taking care of this.
Personally, if I were in your situation I'd go to the emergency room and tell them all of my symptoms. I may even consider telling them I'm having chest pain. That should get you admitted.
I know it is awful to have to go back there, especially when you are feeling so tired but it seems like the best thing to do under the circumstances.
Please don't take any chances. If you feel like you are in danger, go to the hospital!!!
Hopefully someone who knows more about this will come along with more info.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Please go to the hospital.
Say whatever you need to so they can admit you.
Please Tracy.
I am very worried about you and that DVT.
Sending you Angels.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
You should be admitted to the hospital tonight. Do or say whatever you have to. And I think your IV antibiotics may be exacerbating a hypercoaguable state because of Lyme. You may need to be off meds while on Coumadin.
Posts: 2276 | From united states | Registered: Jun 2004
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posted
Tracy if I was you, I wouldn't bother calling the Er- I'd just go!
If they won't admit you, I would just refuse to leave, and say that with the worsening symptoms, the safest place for you to be would to be already at the hospital.
Posts: 115 | From USA | Registered: May 2006
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posted
I agree. This story has been scaring me for days/weeks... whenever I first read about you and your troubles!!!!
Make them check you out. Tell them you are out of breath, chest pain, whatever.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Go Tracy. You can also honestly say that you are having shortness of breath. If they don't take that symptoms seriously coupled with a KNOWN DVT, find another hospital!!!
You have gotten the run-around for WAY too long. They need to fix it. If something were to happen and the clot would dislodge, the best place for you is the hospital.
There has got to be something they can do for you. They can monitor everything there and give you the correct doses of Coumadin for you.
Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
I am concerned about your situation.
Yes, please go to the best hospital that you can, even if you have to drive a bit further.
Sorry, it does seem that your doctors should be dealing with this on your behalf. Does your llmd have an emergency number?
Posts: 2557 | From home | Registered: Aug 2006
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Tracy.....
Here is my suggestion.....CALL AN AMBULANCE!!! Don't be shy about this...STOP SECOND GUESSING AND UNDERREACTING .
Tell them you have chest pains!!! You will be given more of a priority status....You have to stop fooling around with this.
This is life threatening!!! I almost died several times because of similar situations of doctors and bs back and forth stuff....JUST PICK UP THE PHONE AND DIAL 911
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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I'm so sorry you are going through this. Am definitely thinking of you. Posts: 686 | From Northeast Georgia | Registered: Sep 2005
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Wow, thanks for all your responses; I was thinking of some of the same things, really highlighting my symptoms of shortness of breath, I do get some chest pains, my heart rate at PCP today was 112 which I see listed as a risk factor....
I considered going to an ER and not even telling them I'd started on Coumadin (since it hasn't done anything anyway) because then they'll think, oh someone is already following her.
I want to wait until I see LLD tomorrow. It's only 12 or so hours; my appt is at 10:30 am. I did email her with my concerns so maybe by the time I see her she will have gotten the email.
I think I'll just pack a bag and have it in the car. I am going to push her to help me get admitted. If it has to be out near Boston, so be it, but I'm thinking if I just had my two ultrasounds, which I know she has, and a phone call from her to an ER I should be admitted.
Just not the ER I've already been to; maybe a bigger hospital, like UMass in Worcester, which is on the way home from her office, or Hartford Hospital.
I think she will agree with the admission, no one has seemed more scared by this than her. With the Coumadin not changing the picture, which my PCP was very concerned about, I think it is enough to push for admission tomorrow.
Also I had a positive D Dimer test two weeks ago, it was at the ER when my brother was in (different ER, so no one would see it) and I keep forgetting to tell them that. It might not matter, since they already know I have a DVT.
Ugh. Not that I want to be inpatient, certainly not far away from home, but not really in favor of dropping dead either with two kids and a hubby to leave behind.
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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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
I say go tonight. You don't want to wait until you've waited too long. 12 hours may not seem long, but in this condition it could be.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Tracy,
Make sure though that they know how much coumadin you've had today, you don't want to overdose on anti-coagulants.
What is your normal pulse? That is above normal and tachycardia is a symptom.
posted
GO TO THE ER!!
Posts: 983 | From The sky | Registered: Feb 2005
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Tracy,
Does your LLD have admitting privileges to any of these hospitals? What hospitals does your PCP have privileges to? This has to be considered.
I understand your strategies and the reasons why, BUT if your symptoms get any worse please don't hesitate to go to ER.
Sorry you are going thru this,
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
Tracy please get yourself to the ER. The shortness of breath could be bad and the heart rate is also a concern. Please be on the safe side with this and please go.
My Mom had several DVTs in her legs and each time was admitted right away. They even gave her heparin, etc in the ER before they even took her up to the room.
Please take care of yourself and do not risk it. I am very concerned.
-------------------- Lyme, Babesia Microti, possible Bart. Posts: 173 | From A little south of sanity - PA | Registered: Jan 2009
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posted
I agree that this is potentially dangerous and you need to be treated in the hospital ASAP.
Thinking of you and saying a prayer that everything works out just fine.
Posts: 581 | From CT | Registered: May 2008
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Wow, hon, I just logged on. Please get to a hospital. Please. Write out all your symptoms if you have to. They need to hear how bad this is. And from where I sit, it's bad without some medical help.
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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posted
I have not read all the responses here .... but I'm weighing in anyway . . .
Tracy, Please Go To The ER Tonight.
I don't think waiting until your appointment tomorrow will change your LLMD's original decision which was for you to "go to the ER immediately." Nor do I think your PCP will change his position which was, "go to the ER immediately."
Both doctors have already given you their opinions -- and it seems they've given strong opinions. I doubt those opinions will change.
Go to the ER tonight. If they try to "triage" you there and release you, telling you to follow up with a Hematologist, tell them you're not leaving.
Demand to have a consult with the hospital's Hematologist on staff there. They DO have Hematologists on staff and on call.
ER medicine is often geared to much in the triage model, that is quickly assess the patient, refer them out to another specialist outside the hospital, and release said patient.
My sister went through a similar situation while being treated for a chronic MRSA infection. She had a PICC line, which occluded. The home health nurses just changed veins. Neither her doctor nor her nurses followed through on my sister's complaint of pain in the occluded arm and swelling.
Within a week, her blood clot went to her brain and she had a stroke.
Fortunately, she survived and the stroke left no lasting damage.
Please do not wait on this. You might have to be insistent with the ER.
I can't see how they can legitimately send you away at this time. They'd be leaving themselves wide open for a host of liability issues at this point -- especially in light of the fact that two of your primary doctors have insisted that you go to the hospital for treatment!
Much love, Fuzzy
Posts: 503 | From Maryland | Registered: Oct 2007
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bettyg
Unregistered
posted
tracy, call the ambulance NOW! stop procrastinating.
my husband's dad died of DVT after a train accident; went from his leg to heart in SHORT time.
do you want to be a STATISTIC? you've got your kids and blake needing you.
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Tracy....
Where are you?
Please keep us posted.
I am hoping you are sitting in the hospital right now
Getting the treatment that you needed from the beginning.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Does anyone have Tracy's number? Maybe someone could call and make sure she is alright?
Like everyone here, I am worried for her and hope that she is not responding because she is in the hospital.
lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Blake was on chat last night and said she was asleep and planning to go to her LLMD this morning. I can only hope she is now at the hospital.
Despite being told here, and on another forum where she posted, that she absolutely needed to go to the ER ASAP, she chose to ignore all the advice she asked for.
I too hope she is OK, and by now in the hospital.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I'm so sorry guys, your posts are so touching and make me feel so cared about. I did fall asleep about 9:30 pm (that's a first!) I was just so exhausted....just now getting all the posts.
Had I read all your posts before falling asleep I'm sure you would have scared me enough to go! But now I've already been to LLD and back, and here's the scoop:
I went with my bags all packed, fully expecting her to admit me. She called Dr. Horowitz as soon as I got there and he said no need to admit, just put me on Lovenox shots for a week and drop the Coumadin to 5 mg (yesterday PCP raised it to 7.5.)
He said to stop the IV Rocephin (boo hoo), he doesn't think I should have ANY line in me and risk any other blood clots until this whole clotting thing is worked out and resolved.
He said to replace the IV Rocephin with Ceftin for now, and once the clot is gone I can go back on IV Rocephin with guidelines and recommendations from a hematologist. (She had already been emailing him back and forth about my case, but called him once I got there.)
She feels strongly I need to see another Hematologist, and I have an appt with one on Tuesday. Although my PCP said the guy I saw is good, she said no way, I need a hematologist who is willing to follow me, this is a very complicated case, and not give me back to the PCP.
I am getting my Coumadin level checked tomorrow. She feels with all the abx I'm on, clotting history, etc a hematologist has to be the one following my Coumadin; it may be a life long thing, depending on what my clotting workup shows.
I guess I am a little confused about whether or not I'll be able to get IV again, but she said I will. My PCP said yesterday no way if I have a clotting disorder, so did the hematologist I didnt' like. I'll see what the new hematologist says on Tuesday.
So for now, I lay here taking my last dose of Rocephin (she said I could have a goodbye dose, knowing how long and hard I fought to get this) and Blake is off to CVS to pick up all our new prescriptions.
So I guess I'll be okay, but if I have chest pain I'll go to ER, but if it moves into my lungs I'll likely be dead before I can get to the ER from what I've read!
So confusing, but now we have the blessing of Dr. Horowitz, and my LLD said "He's the Man." She felt very comfortable following his instructions.
Thank you SOOO much for all your caring. It means so much. Now anyone want to come over and help me unpack? Fearing I might be stuck in some hospital way out in Boston, I kinda overdid it....
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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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
I called- no answer.....
Posts: 3905 | From USA | Registered: May 2007
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bettyg
Unregistered
posted
tracy, thanks for checking in.
please edit out LAST NAME of your dr. please in TWO places on your last note.
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