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Thread: The whole story..its a long one. :)

  1. #1
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    Default The whole story..its a long one. :)

    Like I mentioned in my introduction, the condition hit me in June of 2009. Started as an ear ache in my left ear. I tried over the counter medicines and some home remedies to no avail. I went to my general practitioners office and saw one of the Dr.'s there which he prescribed an antibiotic but not one in the penicillin family because I have an allergy to them. Did that for a week and it didn't get any better. So he prescribed another, stronger antibiotic but I still got worse. My ear was killing me. I was on a heating pad nightly. Holding cold cans of soda or water to my ear to relief my pain. Then the other symptoms started. The coughing and the running nose. I thought I was getting a cold especially when friends were mentioning that they were getting sick too. Working with the public, I can catch anything. So I finally saw my regular general Dr. and she told me that the ear infection should be gone with all the antibiotics that I have taken. So she called a ENT and asked his opinion. I was put on another antibiotic, pred, some pred ear drops and major dosage of ibuprofen and an appt to see the ENT on Monday.
    I went and saw him. He looked at my ears and asked the general questions. Took some of the fluid out of my ear to get it tested and did it itch. He put me on another antibiotic but told me to continue with the rest of the meds till I was done and we would recheck.
    I started coughing so hard that I couldn't sleep through the night, I thought I threw my back out, could hardly walk around my house. I also was working during this entire mess too and having a really hard time breathing especially in the heat. I went to visit my Dad for his b-day and I was miserable. I drove home with a water bottle up against my left ear-crying all the way home. I went back to my Dr. cause I thought I cracked a rib or something cause it really hurt when I coughed. So she looks me over again-tells me I have a heart murmur(?) and gives me two breathing treatments to see if that helps. Because I told her that my ribs hurt she ordered an X-ray.
    I had just gotten a physical w/ bloodwork in May and was given a CLEAN BILL OF HEALTH. So this was scaring the hell out of me. Like what the hell is going on. So I had another appt with the ENT on the last fri of July so I went to him that morning and I was running a fever of like 102 and my ear was not getting any better. So he called my Dr. and suggest that it was looking like Wegener's or something else.
    So I went to work for a bit and she called me with the results of my x-rays telling me I had masses. Her nurse was going to call back with an appt for a CT. Then to swing by her office for bloodwork. So I did the CT and I went to her office. I was getting blood drawn when she came in the lab and saw that I was out of breathe just sitting there. She said that she was getting her nurse to run me around the office a couple times to see what my oxygen saturation was. IT WAS 90!! She was what am I going to do with you. She asked what else I had to do that day. I told to fill a script but I didn't make it. She called me and asked if she called me in to the ER would I go. Umm hell yes I will go. So I went. The Er thought I had a blood clot in my lungs. But after my CT came back and some blood work which my inflammatory markers were through the roof I was thrown into ISO. I asked why but they couldn't tell me cause they didn't know. So then I was taken upstairs to ICU and ISO. Getting blood drawn, ultrasounds, x-rays and such.
    They did a hatpin biopsy which they didn't get enough tissue to confirm that it was wegener's. So the next day, I found out by meeting my surgeon Dr. Sherwood that I was getting an actual lung biopsy. FUN! So he showed me my CT scan and I had polka dotted lungs. Told us the procedure and that it would be the next day. Well surgery day came and I went in late. Then there were problems with my surgery because of how inflamed I was they couldn't get all the tubing down my throat without my saturation plummeting so they had to cut me open wider and then my ribs are closer together then a normal person so that was another challenge. But I came out ok. I woke up, coughing and scared cause I had the tube in my throat still and the respirator alarm going off. I was so happy that I had a nurse that calmed me down. So I stay in the hospital til Aug 14th. Then was sent home on tons of meds and isolation from the public. Had to wear a mask the entire time from when I was first put into iso at the hospital til before x-mas.
    My ribs still hurt. I have a hard time taking deep breathes. I can't do as much as I use to. I can't walk up hills and talk at the same time or I run out of breath and my fingers will start to go numb. I tried to hand wash my car- HA! It was depressing that I couldn't do it as well as I wanted to. The humidity lately has been making hard for me to breathe. My liver is tender so I have pain there most of the time. My Rheuma and regular Dr. would like me to lose weight but its hard when I am so limited.
    I am scared that because I am working and with the public that I am putting myself at high risk but I have bills to pay.
    I feel bad for putting my hubby through all this but he seems to deal with ok. I think we have gotten stronger. My bro was a champ with help us out with when I came home from the hospital to watch over and help out around the house. My relationships with my Dad, my sis and bro have improved ALOT and I am so grateful. I am scared but I try not to think about it. I try to keep happy as much as I can but I freak when I feel a pain or get a cold or anything.
    So thank you for reading and I hope this helps in some way to let you know that we are not alone.
    Weggies UNITE!!

  2. #2
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    You have to do what you have to do. Try not to over do it, rest when you can.

  3. #3
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    Quote Originally Posted by Carly Hedge View Post
    I am scared that because I am working and with the public that I am putting myself at high risk but I have bills to pay.
    I feel bad for putting my hubby through all this but he seems to deal with ok. I think we have gotten stronger. My bro was a champ with help us out with when I came home from the hospital to watch over and help out around the house. My relationships with my Dad, my sis and bro have improved ALOT and I am so grateful. I am scared but I try not to think about it. I try to keep happy as much as I can but I freak when I feel a pain or get a cold or anything.
    Wow. you have been through the mill! Have you tried getting any vacanations to help with bugs etc? I work in the sewage industry and was concerned about being able to return to my current employment. I had every vacanation I could get on the NHS which did not contain 'live' bodys and to date ( not long - 6 months) have not had any problems.

    Us men like to have someone to care for so I'm sure that hubby is fine. Makes us feel useful.......except when the big match is on the TV

  4. #4
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    Yep, I had to get the *killed* versions of the swine flu, regular flu and then the long named one for pneumonia. But other then that nothing else that I know of.
    Weggies UNITE!!

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