still having post op issues

[malibu82]

so last i wrote i was admitted into my local hospital, not heart hospital downtown and they were pumping me full of iv's and keeping me overnight since i was having fevers of 100-101+ since discharge. So they kept me on the iv antibiotics overnight which were a "broad spectrum" kind so it would cover everything. the next morning, my local cardiologist comes in the room and talks to me about my surgery and why i ended up getting it done (he had told me to wait back in january) then he asked the nurse who ordered the iv antibiotics. the nurse told him it was my primary care doctor. cardiologist said aww **** and left the room in a hurry. next thing i know, the infectious disease doctor came in and told me my incision looks great, the preliminary bloodwork doesn't show anything, and he doesn't know why they are keeping me here and giving me antibiotics. he told me they are doing more harm then good right now because if it is indeed an infection of the incision, then we need to let it show itself so we can treat it, but by pumping the iv antibiotics in me they are masking that now. he also said that when they gave me the ct scan the day before, he told them that if they saw anything, to send me right back down to northwestern hospital. then he said they did see something, but it does no good because 1 week after surgery, its going to look funny, and youre going to have inflammation. he seemed really mad at the staff that i was still there and getting these antibiotics. so i was discharged. i was told if the fevers still continue, to go back to northwestern, that they cant help me at this hospital. so there i was, lost again with no answers. i got home sunday morning. i felt okay all day sunday and monday, but still had fevers unless i took motrin. monday i started having pain under my left rib when i would inhale or exhale. i didnt think much of it because i had told the doctors before and they didnt seem concerned. also it didnt keep me from doing anything, the pain wasn't that bad, i was just aware it was there.
but then of course

tuesday morning i woke up and thought i was going to die. i could not breathe without extreme pain in my left rib area. i could not move without extreme pain. i had to call my husband who was sleeping upstairs to help me and give me my pain meds since i had a fever as well. i had to collect my thoughts and realized i need to go directly to northwestern. it was so painful but we took the 40 minute drive down there. no appointment. they got me in to see the surgeons nurse. she had no idea what it could be so sent me for an xray. they saw nothing on the xray. i took 2 norco and 2 motrin and was still in A LOT of pain. my fever was at 100.8. they had me wait 3 hours for the surgeon to get out of the OR and he came in to talk to me. he said the pain is from the retraction, and the fevers could still be just my body trying to recover, but to give it a full 2 weeks to see. so basically i now am in the worst pain ever in my left rib and now it has spread throughout my whole left side/chest and still having fevers. the heart surgery was the easy part of this whole thing. that site has never caused me the amount of pain this new rib/chest thing has. i can't believe it! anyone else get this pain after surgery? how long until it goes away? i feel like its going to slow down my recovery because i can not take deep breathes or catch up breaths without extreme pain.

sorry im always complaining but i dont know anyone else to turn to !

thanks jackie

 

[Lynlw]

I'm sory you are having so many problem AND such much unnessescary stress, caused by the run around they are ALL givng you. Did they at least do an echo to check the pain? Honestly it sounds alot like plueral or pericardial fluid (fluid in the sack around your heart or lungs) both pain and fevers CAN be caused by the fluid among other things. Justin has had pericardial fluid after a few of his surgeries and the only way they saw it were echos, his Xray looked normal.
THIS much pain is NOT normal after OHS. Especially this far out. I think you said your white count was normal when your were admitted a few days ago, did they do any blood work when you went for the pain?

 

[malibu82]

no they didnt. they said that it will just go away on it's own. it has eased up a bit, but still i cant take a full breath without the pain. and couldnt even think about not taking motrin for it. last echo was when the day before being discharged from OHS. so who knows. i guess i will have to wait it out!

 

[kfay]

Jackie, I agree with Lyn, I don't think what you are experiencing is normal. It sounds very much like it could be Dressler's syndrome (http://www.mayoclinic.com/health/dresslers-syndrome/ds00666), when I had this after my first OHS, I ran fevers for a while and also had pain like you are describing. It is not uncommon after OHS. I think they treated me with steroids, but I've read on here more recently that people were treated with large doses of NSAIDS. Obviously I'm not a Dr., but it gives you another thing to look into that may be causing this.

I'm sorry to say this, but now is the time you need to become a pain in the ass. I'd call your surgeon's service, tell him that you know what is going on is not right, and ask him specifically about Dressler's, an infection and how they have ruled out you don't have one, and if there is any fluid issues that could be causing this and how they have ruled it out. It doesn't sound like your cardio is going to be very supportive, but did you have a cardio at Northwestern as well? If so, I'd get them involved as well.

You're not complaining...you have a right to know what is wrong and to find a solution.


Keep us posted.

Kim

 

[ARGreenMN]

I've been having a pain in that same area - just under my left rib-cage for last couple weeks (I'm at 4 wks post-op today). But mine has only gotten really painful a couple times (and I went into what they call a-fib shortly after it both times). Otherwise it feels more like a sore muscle - just enough to be annoying. Or, sometimes I don't feel it at all (it comes and goes). I don't have the fevers you have either, although I think 100.8 would be considered a fairly low-grade fever, wouldn't it? Or are they worried about the fever? I've been telling the docs about my pain each time I talk to one of them, which has included at least three different cardiologists, two different general docs and several nurses (some with a lot of experience in this game). They're all basically telling me the same thing - they're pretty sure it's just part of the healing process. This surgery is a pretty big deal - they tear ya apart pretty good inside, and it takes a while for our bodies to recuperate. And there are usually some ups and downs. It surprises me a little because I had almost no pain the first couple weeks, and now am having this. And I've asked about that - why now??? But they're still not concerned. I asked about fluid buildup like Lyn said (esp. since my surgeon only uses one chest tube) but the x-rays and echoes have ruled that out twice now in the last week. I asked about something called a hiatal hernia - which is your stomach coming back up through the hole in your diaphram where your esaphagus (sp?) goes thru. Doc thought even if it was that, it'll get better as the diaphram heals and he wasn't concerned... He just offered me a prescription for a heavy-duty ant-acid... I said, no, I know heartburn, and this is no heartburn... I keep telling them I think that pain is what triggers (or is at least associated with) this a-fib and irregular beat episodes I've been having for the last week and a half. They don't disagree - they just say they're pretty confident it will heal in time, and the a-fib and other irregular beats will go away. I MAY be starting to get a little better the last few days - jury is still out - but I had a good day on Monday and a good day today. With a so-so day mixed in the middle. I guess as long as it keeps being two steps forward and one step backward, I'll eventually be a few steps ahead... That's what I'm going with anyway. Sorry, didn't help much, but just thought I'd mention that I do definitely have a pain under my left rib-cage...

 

[ottagal]

I will third that and agree with Lyn and Kim! I also mentioned this in my previous post to you, but will re-iterate that I too (like Kim) had post-periocardiotomy (also known as Dressler's syndrome) syndrome. I had the fever, chest pain and also shortness of breath and had to be re-admiited.
When my blood work came back negative for bacterial/viral infection, I was started on NSAIDS and then switched me to a low dose of prednisone over a 5 day period.

I sincerely hope that things get better for you and will look forward to an update on what the surgeon says. I too found the 'recovery' the hardest part. These speed bumps post-surgery can be the biggest challenge. It will get better...

 

[Lynlw]

I will third that and agree with Lyn and Kim! I also mentioned this in my previous post to you, but will re-iterate that I too (like Kim) had post-periocardiotomy (also known as Dressler's syndrome) syndrome. I had the fever, chest pain and also shortness of breath and had to be re-admiited.
When my blood work came back negative for bacterial/viral infection, I was started on NSAIDS and then switched me to a low dose of prednisone over a 5 day period.

I sincerely hope that things get better for you and will look forward to an update on what the surgeon says. I too found the 'recovery' the hardest part. These speed bumps post-surgery can be the biggest challenge. It will get better...

Justin has had pericardial fluid after a few of his surgeries, the first time was in 89 and they weren't as good at getting rid of it after the really long complex surgeries and it went on for months where he needed the fluid drained at least weekly. along with the steroids. Many of the other babies had it for a long time.

But his last couple surgeries, we catch it pretty quick because we call as soon as Justin gets a fever over 100 or pain, trouble taking deep breaths AND they do an echo. When they catch it early, often just motrin takes care of it and sometimes Mortrin, and like you, the low dose of prendisone.

I honestly don't know what to suggest since you've gone to 2 different hospitals (are they related?) but Kim had a good thought about calling the cardiologist if you have on at North Western if you haven't talk to them? I know you've had problems even getting them to return your calls, which I find a disgrace, right after OHS, when it is pretty common to hit a "speed bump"and many of the problems can be so much easier to take care of if they are caught early. It must be so frustrating Ican't imagine, if you were MY family member I can't imagine what i would do, but if things don't get better or get worse, I would keep calling until you get answers or AT LEAST some tests to rule out problems. I can't believe you've talked to so many different doctors about this and no one has done and echo yet.

ps do you have more pain or feel pressure when you are laying down or bending over If so make sure to tell them that too

 

[malibu82]

Thank you everyone for being so supportive. I'm going to be pro active tomorrow and call a few doctors and nurses until someone wants to do something about this. It makes me feel like they don't believe me and now I'm that annoying patient. This pain is unbearable unless I take 2 norco and 2 motrin. I only have 2 norco left. I'm scared they won't refill the norco tomorrow when I request it! Now they are going to think I'm a drug addict! I hate the meds and want a medicine free body but for now I have no choice.

 

[malibu82]

Lyn I do have the pain/pressure worse when laying down/bending over so I will tell them for sure!

 

[Ross]

Sounds like classic fluid accumulation to me. They need to be doing an echo to see.

 

[Daren]

Jackie, Please listen to what these people are saying. Get these Doctors on this right now. I dont want to scare you or give you more to worry about but ,I had the same problems after my surgery. I just thought oh well its nothing. The Doctors didnt seem that concerned even though I told them it hurt like crazy. No x-ray, no echo, no nothing for me. I am now looking at having a second OHS a year and a half after my first. I dont know if the problems I had post op caused any of this but I do know all my Doctors dropped the ball Big Time with me. Get this looked into now. Keep complaining until they get it squared away. If its nothing then, no harm no foul. If it is something you need it adressed now so it wont become something big later. Get Ugly Early Daren

 

[malibu82]

Okay so the update today is I talked to my local cardiologist who says he looked all of my recent labs/xrays over and he doesn't see anything wrong. He thinks the fevers are still probably a post op inflammatory response and the chest/back pain is from the procedure when I was split. He said it's normal and not to worry. I asked if I should get an echo, he said no, but we will do one in a month as a follow up to get back on track to just seeing him yearly. I told him it didn't hurt until Monday, and he said it's probably just everything wearing off and now you can feel it. He said the reason you don't feel worse pain at the incision site is because it's verticle but the other bones are horizontal so you feel things more upon movement. He said listen, you had heart surgery, you were split apart and opened up. You are going to have pain there. He called it Pleurisy.

So I will quit my complaining I guess there is nothing else I can do at this point. I have contacted everyone involved and been tested and retested. Oh well.

Jackie

 

[Ross]

Well if you can't breath, they better not say nothings wrong.

 

[kfay]

Don't start feeling complacent about all of this. Just because they can't "see" anything wrong at the moment doesn't mean that something isn't going on. Remain vigilant and if anything changes or if those fevers keep hanging on, start rattling on that cage some more. I hope you start feeling better soon.


Kim

 

[joanne6]

Adding my 2 cents. Pleurisy does refer to the lungs-not just from being cut open. Maybe it will get better on it's own but sounds like the amount of pain you are having is not just normal postop pain. If the pain does not start to improve I would keep at them until the docs do something.

 

[ALCapshaw2]

FYI, until your Surgeon Releases you, HE is the responsible physician for your after-care.
Your cardio probably walked out because he did not want to accept the responsibility for anything that might go wrong.
Frankly, I'm surprised the second Hospital didn't just tell you to go back to the hospital that performed your surgery.

That Said, it sounds like your Surgeon isn't doing a very thorough 'follow-up'.
As others have suggested, you need to 'Get on his Case' to determine what is going on and WHY you are having those issues.

I'm confused about your Rib Pain. Did you have a Minimally Invasive Surgery or Thoracotomy (through the ribs) incision or a regular Sternotomy (cut the sternum down the middle of your chest)?

'AL C'

 

[ARGreenMN]

I could be wrong of course, but I think I've been having the same pain she's describing, and I had had the regular sternotomy (think she did too?). For me it started at about 2 wks after surgery, and is just now starting to subside a little (4 wks after surgery). It's right under the left side of my ribcage or at top of the left side of my abdoman (if that makes any sense). Right where I think my diaphram would be at. My docs have been telling me the same thing - it's almost certainly just from being ripped open and it just takes a while for everything to heal up. I totally agree she needs to be comfortable with her care, including getting an echo (which I've had 2 of now since surgery to rule out fluid buildup). And that she needs to stay on top of it, and make more noise if necessary, I'm just saying I think it might also be possible that it's just that area healing up like her docs (and mine) are saying. Hope so anyway, for both our sakes!

 

[Cris N]

I'll toss out one additional possibility... one that I dealt with. I too had pain (no fever that I recall) - left side under the ribs. It was due to constipation- from the pain meds and the iron pills I was taking for mild anemia. I stepped up the stool softener and all the goodies to help the action along and felt much better within a couple of days.

 

[Luana]

Jackie,
I'm sorry for all the stuff you've had to go through so far and hope by now you're doing better.

 

[malibu82]

hi everyone

yes i had a fulllllllllllllllll sternotomy. i say it like that because its 19cm long. i didnt expect that!

good news is, each day this pain has been getting better. it is still there, but has eased up a lot. so hopefully it is just from the procedure. as for the fevers, i *think* they are getting better too, but it's hard to tell since i still take pain meds for the stupid rib/left chest pain problem.


thanks for all of your comments!