I haven't been posting as often b/c I'm not getting any comments so I'm guessing no one's reading this. But it's good for me to write and I want to continue it in case someone finds it one day and it can help them out in any way.
Was doing ok until I got some kinda of head/ sinus cold. I was blowing my nose like crazy and at night it would get stopped up. Good thing was I didn't run any fevers! I thought I was getting better but it was draining into my chest making me congested and my numbers went down some. Doctor had me come in and do a swab in my nostrils and throat. One nostril came back with the CMV virus that I got from my donor. The majority of people have it and don't know b/c it lays dormant until something causes it to at up. So the one doc put me on an anti-viral which my insurance didn't want to cover so that took some time to get over-rided by my doctor. Then, the other doctor comes back from vacation and I find out that not to worry yet b/c it's only a problem if it gets in my blood. So I had to go back in for bloodwork. Good news is it wasn't in my blood so they said nothing to worry about and don't need the meds.
Well, I still had something going on and it had gotten worse so I left messages and had to go back in the next week anyways for bloodwork for my Immunosuppressent levels. Got to talk to the my favorite doctor and he had me do a breathing test and checked me out. He could barely see up my nose it was so inflamed and full of crap. Then when he looked in my throat, he could see gunk draining in a thin line from my sinuses down to my lungs! He said my sinuses are horrible and said we needed to work on that first before cleaning out my lungs. So he told me to take Sudafed, Afrin, Benadryl, and put me on some antibiotics. I was actually able to cough some mucous up that was yellow for them to culture to see if any bacteria or anything else could be growing in my lungs. In my last few cultures over the months, I had one weak bug and one that was very resistant to just about every antibiotic...not good! He said it probably isn't that one b/c the one thing it's sensitive too is an inhaled antibiotic I have been on for several years. Seems to be the only antibiotic that bacteria rarely builds up a resistant too. So after a few days I got the call from clinic saying that it was neither bug and just a light growth of oral flora which is not uncommon to see since it's in everyone's mouth. My sinuses seem to be getting better and should be a ton better after my sinus surgery Jan 3rd and then later a bronch for my lungs.
I'm at least happy that it seems so far, I will be spending Christmas and New Years not in the hospital or severely sick and/or on oxygen!!
Tanya - there are silent lurkers out here who definitely read your posts, keep up with your story, and learn from your experiences. Please keep posting!
ReplyDeleteanother person who is always reading but never commenting... even without a comment were still rooting for you and sending good vibes youre way.
ReplyDeleteAw, thanks! Glad to know there are still people reading it. I'll try to keep posting more up-to-date after the holidays. Hope you all have a great X-mas and New Years!
ReplyDeleteHey Tanya! Long time no type! I can very easily guess who your favorite doctor is. I got a bad head cold about 3 months ago. Mine also went down into my lungs. It was the first chest cold I've had post-tx. I did freak a little when my pft's dropped but after a few weeks they climbed back up. Hope your sinus surgery goes great. I keep meaning to get back on the One Breath Chat. Do you still get on there? TTYL Happy Holidays! - Kevin
ReplyDeleteAlso a lurker! Your kinda one of my heroes now. When things seem bad in life, I think of the picture of you giving the thumbs up sign while hooked up to all of those machines and I realize just how awesome people can be.
ReplyDeletegood news!
ReplyDeleteI wish I could be half as tough as you are. Happy new year to you.
ReplyDeletedon't stop the blogging! I check in from time to time also. My husband had his tx on 5/20/10 and his new lungs have CMV. He previously didn't have it. The virus broke through and right now he's on IV meds to get it under control. Here's his blog address: fahrjr.blogspot.com
ReplyDeleteTake care!
You'd be surprised how many people read your blog. You'll find that a lot of pre/post Tx people go online to find transplant blogs- the blogs both comfort them - knowing that someone is going through what they are going through - and it educates them.
ReplyDeleteI"m so very sorry to read of all your issues, it must be so frustrating and difficult. I had a lot of issues (GI, CMV, infections) post transplant (though no surgeries). I never thought I would see the day that I'd get any use out of my new lungs. But about the 1.5 yr mark, things started to really improve and now, 12-years later, life is still going swell with this amazing, borrowed lungs.
Here's hoping your 'day' will come soon and these problems will all be behind you!
Hi Tanya - Aline here - thanks for directing me to your blog. I had no idea how complex this entire situation was for you. I really appreciate the education on this condition, because my experience with CF/Transplant patients patients is quite limited. I really admire your strength and fortitude.
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