Frustration

[Gnusgal]

Now, I wasn't sure if I should post this in the coumadin forum, or the post-op forum... I decided to post it to the coumadin forum so that Al might see it and lend some advice or just some support.

Since my ICD implant on Dec. 30th I seem to be having nothing but trouble. And I don't know if I should just blame poor timing/luck, the ICD location, coumadin, or what! But the fact of the matter is, I've not had these problems with my 4 pacemakers that I've had and I wasn't on coumadin for any of them (but then, they were in my abdomen, not my shoulder)... So it makes me wonder, could it be the coumadin???

Last Friday the area around my ICD got VERY warm (noticibly warmer than the rest of my body) to the touch, and at home my temp was 99.1. I ended up going into the ER and spending the night in the hospital for observation to make sure I didn't have an infection. All blood work came back normal and I was sent home. Well, that night I started feeling more sore than I had in quite some time. I passed it off as just being a result of the doctor poking at the site earlier that day. But that soreness has continued (and gotten worse on occasion) and I think the area is starting to swell up! Even the school nurse (who I've had checking me every day so I don't feel crazy) said this morning that it seemed a bit swollen. So now I'm wondering if I'm starting to bleed around the ICD again (remember, a week after the initial implant, they discovered a hematoma and I had to be opened back up to drain it). I REALLY don't want to have to go back into the hospital! I've been in the hospital, or visited the ER every week since Dec. 30th! I'm ready for a break!

So, Al, my question (sort of) is, do you think that my coumadin (or the lovenox when I was on it right after the surgery) could be playing a part in my struggles with recovery? And if it is, is there anything to be done about it???

Thanks for listening to me whine.

 

[Guest]

I have been seeing a guy for an infected hematoma around and ICD every day for the past two weeks (even Sat & Sun). His doctor was off the first weekend after the implant and the doc on call decided to give him big warfarin doses to get his INR up quickly. Worked too well. Then he had to get IV antibiotics, spent Christmas in the hospital etc. Then he had a reaction to the antibiotics that caused a GI bleed.

There is probably no easy answer at this point - as if there ever is. I think that you have to be very careful. You just have to follow the doctor's instructions.

 

[Karlynn]

Niki, so sorry to read that you are still having problems with your ICD implant. Something good HAS to be coming your way.

You remain in my thoughts and prayers.

 

[Gnusgal]

Guess what-- I've sprung a leak! There is a clear, pink fluid practically pouring from my incision. Guess I'll be going back in...

 

[McCln]

So sorry Nikki. Good luck and keep us posted. At least you are taking care of yourself.

 

[Mary]

Gee Whiz Niki,

"If it weren't for bad luck, you'd have no luck at all. . ."

I am so sorry you're going through this. Surely there are blue skies ahead.
Mary

 

[tobagotwo]

They really need to start taking you seriously when you go to them with a problem. This is awful, what you've had to go through, considering the ignorance and callousness of those who are supposed to be caretaking your health and well-being.

One approach might be, when they say, "Well, we don't see anything actually wrong, so we are just going to prescribe Tylenol and send you home," reply to them, "This is causing ____(problem), and feeling like _____ (how it affects you). You and I both know that's not right. It's not enough to say you did a blood test and sent me home. You need to give a reasonable explanation as to what is happening, or look further until you discover the problem."

The device was prescribed and put in by doctors, and those doctors are responsible for it not becoming a threat to your health. While the phrase "First, do no harm" doesn't actually appear in the Hippocratic oath, in Epidemics, Hippocrates did write, "As to diseases, make a habit of two things?to help, or at least to do no harm."

Best wishes,

 

[Nancy]

I surely do agree with Bob. SOMETHING is causing these problems. This thing should have been well on its way to healing up. The continuing problems suggest strongly that there is something causing it to not heal. If we, as laymen, can see this, why can't your doctors.

I've been watching this for a while, and I think it's time to INSIST on getting some concrete help before it becomes a full-blown infection. You've got too much going on in your chest to allow that to happen.

I don't think your doctors are doing right by you. Please take care.

 

[EVELYN]

Hi Niki

I agree.....SOMETHING IS WRONG!! I would be yelling and screaming to anyone who would listen by now. Find Someone who can help you, girlfriend.

Evelyn

 

[Karlynn]

Niki, just a thought. What is the ICD encased in and is it the same type of casing that your pacemaker is in? Just wondering if something about the physical aspects of the ICD case is causing a reaction in your body. Nothing more than a shot in the dark on my part.

 

[Granbonny]

Niki

Niki

Been 22 hours since we heard from you. Hope all is well. Bonnie

 

[Abbanabba]

Oh Niki, I'm so sorry you're still having problems with this. I'm with Nancy 100% - you should definitely be well on the way to healing by now, not still having these problems.

I hope you'll have something more positive to tell us when you get back on-line again.

Sending hugs and best wishes your way.....
Anna : )