My past stays were due to cancer complications, surgery, pancreatitis. This time my lungs finally got pissed about being ignored for so long. It all started with night sweats which lead to fever spikes and then pain every time I inhaled. My lungs felt tight, gunky and generally pissed off at me. I had the choice to try IV meds and steroids at home. But after talking to Randy & my mom decided it was time to "go big" and get admitted.
So today is day six of my stay and things are going very well. I get respiratory percussion treatments four times a day. My lungs are getting really cleaned out. I'm also on some really high powered antibiotics and some steroids. The steroids make me feel a bit manic in that I'm not sleeping well and have lots of crazy energy. Can you say lots of to do lists? It seems there are to do lists & projects all over this room right now. And of course I've only done some because I think of new to dos as fast as I do them (if not faster).
The antibiotics are my biggest cause for concern right now. Yes they are working. However, I'm running out of antibiotics that can effectively fight the bugs (psuedomonas aeriginosa "PA") in my lungs. PA is a very smart germ. Once it has encountered a new antibiotic it learns how to defend itself from future attacks by changing its structure. So as time goes on an antibiotic can become less effective against it and then basically is of no good at all. This is called resistance. Right not I have a strain of PA that is resistant to almost every antibiotic except one or so. This means a few things: 1) eventually this PA could grow out of control and damage my lungs beyond repair, 2) if I am transplanted there is somewhat of a risk of having this PA strain in my sinuses or trachea and transferring it to the new lungs. Either possibility is scary and not good. This realization hit really hard one night after talking to my infectious disease doc. I cried and struggled to come to terms with my own possible mortality.
So much has happened lately and the possibility of getting transplanted down the road has always been a hopeful goal to focus on. If the bad bugs exclude me from that it would be a hard thing to cope with. After a night of talks with Randy, my mom, and friends I felt much better the next day. What I've come to realize is that I'm doing everything possible to stay well and still enjoy life. If transplant happens it happens. If not I'll be prepared for that too. Either way I'm doing all I can and the rest (including this nasty PA bug) is beyond my control and I'm trying to find peace in that. Of course I'm not perfect and yes crying is allowed and frankly an honest expression of it all.
Of course it's not all gloom and doom dear reader. If you know me you know I can try to find a bright side on a dark rock in a dark cave in the pitch black night. Lately I've been in the cave too long but I'm emerging stronger than ever. So here's the upside:
- The PA in my lungs is a small population. So for now it may not be an issue for transplant purposes.
- Considering all the setbacks my body has taken related to the cancer "cure" it's amazing how well the lungs have held up. I mean this is the first time I've done IV antibiotics since December 2009. Thank you lungs!!!
- Duke, where I was evaluated for transplant in August, specializes in transplanting Cystic Fibrosis patients that have drug resistant organisms. They have a policy that I need to be cancer free for two years before transplant. Due to my radical cancer surgery and clean nodes I'm hoping an exception might be made if I need a transplant sooner than that. My local oncologist feels my treatment cured the cancer and no waiting period is necessary. I plan to touch base with Duke soon to find out their current assessment of my situation.
- This wake up call is prompting Randy & I to evaluate doing some things that we've been wanting to do now. Why wait?
P.S. Right now I'm hoping to get out of here by this Friday Feb 11 or Saturday Feb 12.
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Much love from the Welch family! Hope to see you soon!
ReplyDeleteI love love love you darling Stephanie!!!! You inspire me to no end. XoXo.
ReplyDeleteWow Steph. You are very strong.
ReplyDeleteHi!
ReplyDeleteI know I've never posted here on your blog, but I figured since I was giving you advice on CF2, I'd check out your adventures here too so I'd get the whole story of what's been going on and such. I had no idea you had pancreatitis too! Oh my! I've had approximately 20-25 (seriously) bouts of pancreatitis as a child. (some short, just a few days, and some for many weeks) It SUCKS, to put it very ineloquently. I cannot think of a worse ailment besides extreme shortness of breath/air hunger and desatting. It is truly horrible and I'm so sorry you went through it. If you should ever suffer from it again, allow me to suggest my own favorite "liquid" of choice - POPCICLES! I ate popcicles by the truckload when I was in that middle phase, on a liquid diet. If you like them, they are simply awesome. And most hospitals keep them in the kitchen, or you can request to have some sent up to the floor! (or buy them if you're at home, of course)
Whenever I feel especially bad now, or think something is intolerable, I just think back to the bout of pancreatitis I had when I was 8 that was SO bad, I could not eat for 6 weeks. Yes, that's right, 6 weeks - NO food or *drink*! (I was on liquid nutrition via IV) I was ready to eat paper by the end, haha. :) So, just remember, even crappy things always come to an end, just take it one day at a time. :)
Anyway, I'm glad you're out of the hospital and feeling better now. I loved to hear the story of your little piggy, too. We all need a buddy at home, and in the hospital too. As for me, I have a cat at home. :)
I enjoyed your blog from what I've read so far, I hope it helps you and brings you enjoyment to write. Take care!
Sandy/Sevenstars from CF2Chat
I think it's so great that you are planning for when a transplant will be needed . . .yet still living with such optimism and hope! If you hit any walls with transplant centers I know that UPMC in Pittsburgh, PA will transplant with VERY pan resistance bacteria (I had Cepacia) they are a hospital that is not scared by "high risk" patients. Might be worth keeping them in mind. I can give you contact information if you ever need it :) Keep on Keeping on!
ReplyDeleteI realized I've been in la la land and not keeping up on blogs much, so I just popped in to catch up on where I left off. Bummer all around, but it sounds like you have made some peace with your choices and that your health is going to cooperate for a while with you. When I read your blog I try to put things in perspective - in my case, my gratitude today was that for now I still have stable health; on the flip side, I see you relishing how supporting your husband has been with you through this, and i don't have that (though hopefully in sobriety I will). We all have our battles, I suppose. I picked up a book, "The Power of Now" (I think, something like that) by Eckhert Tolle that I have been inching through, trying to digest and actually apply - I haven't read enough to gush over it to you, as a yoga practitionaer the ideas probably aren't all that new to you, but it might still be a helpful read. As for the yoga - that might be an awesome thing. Maybe once you're out of the hospital we can make a date - even if it isn't yoga, coffee or whatever would suffice <3 Much, much love to you!
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