mngirl Posted November 30, 2005 Report Share Posted November 30, 2005 knew something was up when on Thanksgiving day I couldn't keep my eyes open to even eat dinner with my family. Then that night my new port site started to itch and get a rash. Friday I slept all day and the rash was getting worse. So I called into the doctor's office and asked about the port because I was told to really watch it. They told me that as long I as didn't have a fever I was okay, but that if I did get one, that I needed to get into the ER. Well...Saturday morning, guess what I woke up with...a fever, 100.9. We were in the Cities, which was 2 1/2 hours from home.I didn't want to go to an ER/hospital which didn't know my history, so we quickly packed up and drove as quickly as possible to get home. On the way back my husaband was making calls to anyone we knew to see if they could take the boys while we went to the ER. Luckily, we have some GREAT friends to hve 2 kids the EXACT same age as E & O who were willing to watch them for us until we knew more.So, we dropped them off and headed to the ER...and sure enough, when we got there my temp was 101.9 and the port was hot and not looking very good. So, they told me that it was probably going to have to come out. The surgeon came out and told me that I had 2 choices - to just have it taken out, or to sit in the hospital for a couple of days while they fed me as much antibiotics as possible and wait for the cultures to come back. If it was positive, then the port DEFINITELY had to come out. So, I have been in the hospital since Saturday. The cultures came back fine, they are not sure what the infection was from. The problem is that my left arm, shoulder and neck REALLY hurt - they even thought I had a blood clot, even did an ultrasound for one - so they definitley thought something was wrong. So I asked the surgeon today if that is going to happen EVERY time I get any type of infection. And the surgeon said that that is a possibilty. And if that is true, then they WILL have to take the port out.So, I am out of work until Friday, I have a dr appt tomorrow and an infusion on Thursday at which time my internal med doc is going to decide what in the **** to do about all this. They hooked me up to a heart monitor to watch the spikes in my heart rate which had been happening for 2 weeks. that morning that put me back on the Flornief (which he took me off because he thought it was causing the dizzies after I had spent the 18 days in the hospital a few weeks ago) and while on the monitor it didn't do it once! I just hope he doesn't think that I was making it up or anything, even my DH was concerned and was making me wear it to bed to make sure that nothing was happening. So...anyway...I am hoping that it was the med that stopped it from happening. So I am hoping that it was just the exhaustion of being in the hospital before that was casing it all. I am going to continue to wear the monitor and see if anything changes over the next few days.Now I have the next few days off work, which I am sure that they are just THRILLED about. I think that I have finally come to the conclusion that I think that I am going to start applying for permanent disability. I can't keep having things like this happen and try to keep working with getting some kind of reprecussion - which I know they can't do, but will anyway...plus, that work evaluation is supposed to be coming up. At least I can delay it a little longer since I was in the hospital again. But once that happens I am sure that I won't have a job. So, I need to make sure that I start this disability stuff soom, otherwise I will end up with no job and no disability.Anyway...that had been my past 4 days. Here is something that I am SURE you are going to be SO GLAD that I told you...I've only gone to the bathroom 2 times since Saturday and yet they didn't think that was an issue when they discharged me from the hospital! Amazing. I wasn't my dr who discharged me, I was a little mad about that, it was the surgeon and he just didn't have a lot to say.For now, I get to keep my port. But, it may not be for too much longer at this point. If I have to have it taken out, it better be before Jan 1st - when my new deductible starts...LOL...although I will fulfill that with 2 infusions, so that won't be an issue I guess.I have just SO HAD IT WITH ALL THIS....I CAN'T TAKE IT ANYMORE!I hope everyone else had a wonderful Thanksgiving...I would give anything for a good piece of pumpkin pie that I missed!~Lisa Quote Link to comment Share on other sites More sharing options...
taylortotmom Posted November 30, 2005 Report Share Posted November 30, 2005 Lisa,I am sorry you are having such a hard time. I, too have a port. Let me tell you- it hurt like crazy for about a month after I got it but then it was fine. I hope your's turns out as well or better- so, don't give up yet. It has been a huge blessing in my life. If you feel like you are about to be terminated, get that paperwork for disability started ASAP- it takes forever! Good luck!Carmen Quote Link to comment Share on other sites More sharing options...
Poohbear Posted November 30, 2005 Report Share Posted November 30, 2005 How HORRIBLE for you!!!! I wish you weren't going through all of this.Hopefully your Dr's appts later this week will shed some light. I know it's a hard thing to do but it sounds like you may need to go ahead (as you mentioned) and start applying for disability. It's a long and grueling process so go ahead and start it as soon as you can.Talk to your Dr about it too to make sure they are supportive and behind you! Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted November 30, 2005 Report Share Posted November 30, 2005 wish I could give you an answer about when it will get better for you... but all I can do is tell you I'm thinking good thoughts on your behalf. Nina Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted November 30, 2005 Report Share Posted November 30, 2005 Oh My goodness Lisa..I am so sorry that you are having such a horrid time... I really hope that things improvef ro you.. and that you start to feel better...keep us posted.. we are here for you!!HUGSLinda Quote Link to comment Share on other sites More sharing options...
Jacquie802 Posted November 30, 2005 Report Share Posted November 30, 2005 Hi, sorry to hear that you were in the hospital. This may be a silly question but what is a port???? Is it how they give u fluids?? or meds??? I agree with starting the disability. I had huge problems with my last employer and I am waiting to get on disability. I hope you feel better and get to go to the bathroom soon!!!!! Take care and keep us updated!Jacquie Quote Link to comment Share on other sites More sharing options...
Aprilmarie52 Posted November 30, 2005 Report Share Posted November 30, 2005 hope your dr can give you some answers. Feel better soon! Quote Link to comment Share on other sites More sharing options...
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