In Limbo
It's been a while since I've updated about my health, so I will take a moment to get everyone back up to speed:
That's where things complicated. At yesterday's appointment it was clear that I was making small amounts of progress in some areas and that I'm also starting to decline in other areas. What's tricky is that it's hard to determine of the previous antibiotics worked against the 'new' bacteria and the virus is what set me back, or if the oral antibiotics weren't enough and it's the 'new' bacteria setting me back. So the big question is: To treat me with more strong oral antibiotics or another round of IV antibiotics?
With most CF patients it would be an easy decision just to start IVs, but since IVs are such a big ordeal for me, it's harder to 'pull the trigger.' After reviewing my breathing tests, blood work and x-rays the covering doc called me last night to say that she is leaning toward IV antibiotics but will email my regular CF doc over the weekend and let her make the final call. She also would like to wait and see what my preliminary culture results are on Monday to see if the 'new' bacteria is still present. Since my IV line placement is such a complicated thing in and of itself, it wouldn't be able to happen until mid-late next week anyway, so to prevent my lungs from getting any worse she started me on another round of strong oral antibiotics to cover me until a decision is made. Even the oral antibiotics are complicated because the my bacteria is only sensitive to about 6 oral antibiotics and 3 of them I can't take because they aggravate my pancreatitis, so my options are super limited. Still with me? I should hear a decision by Monday or Tuesday the latest.
Since my last health post I've also welcomed a new endocrinologist to 'my team.' I was reluctant to add yet another specialist to my ever-growing list, but she seems like she will be a useful asset in keeping my bones healthy. I've been osteopenic (the stage before osteoporosis) for years, but my bone density is quickly decreasing and I'm right on the edge of osteoporosis...not where I want to be. Like everything else, my treatment options are extremely limited because most treatments will hurt me in other areas. I'm going to hold off on any treatments for now until I see what my bone density is in May.
I wish everyone a happy and healthy weekend. And if you should think of me, feel free to cross your fingers for NO IVs.
- The last time I posted a health update, I was taking three oral/nebulized antibiotics to combat a 'new' bacteria that had taken up residence in my lungs; knowing that this bacteria was bad and would be hard to treat.
- I felt like the antibiotics helped a little, but still didn't feel great and haven't felt up to exercising in almost a month.
- Literally 2 days after finishing said antibiotics (a.k.a. last weekend) I caught a virus. The virus ignited my inflammatory process, causing my blood clots to regrow on one side.
- About 4 days after catching the virus my lungs began to quickly decline. Damn it!!!
- I was scheduled for a follow-up with my regular CF doc next Wed., but had to move the appointment up to yesterday as a "sick visit" with a covering CF doc.
That's where things complicated. At yesterday's appointment it was clear that I was making small amounts of progress in some areas and that I'm also starting to decline in other areas. What's tricky is that it's hard to determine of the previous antibiotics worked against the 'new' bacteria and the virus is what set me back, or if the oral antibiotics weren't enough and it's the 'new' bacteria setting me back. So the big question is: To treat me with more strong oral antibiotics or another round of IV antibiotics?
With most CF patients it would be an easy decision just to start IVs, but since IVs are such a big ordeal for me, it's harder to 'pull the trigger.' After reviewing my breathing tests, blood work and x-rays the covering doc called me last night to say that she is leaning toward IV antibiotics but will email my regular CF doc over the weekend and let her make the final call. She also would like to wait and see what my preliminary culture results are on Monday to see if the 'new' bacteria is still present. Since my IV line placement is such a complicated thing in and of itself, it wouldn't be able to happen until mid-late next week anyway, so to prevent my lungs from getting any worse she started me on another round of strong oral antibiotics to cover me until a decision is made. Even the oral antibiotics are complicated because the my bacteria is only sensitive to about 6 oral antibiotics and 3 of them I can't take because they aggravate my pancreatitis, so my options are super limited. Still with me? I should hear a decision by Monday or Tuesday the latest.
Since my last health post I've also welcomed a new endocrinologist to 'my team.' I was reluctant to add yet another specialist to my ever-growing list, but she seems like she will be a useful asset in keeping my bones healthy. I've been osteopenic (the stage before osteoporosis) for years, but my bone density is quickly decreasing and I'm right on the edge of osteoporosis...not where I want to be. Like everything else, my treatment options are extremely limited because most treatments will hurt me in other areas. I'm going to hold off on any treatments for now until I see what my bone density is in May.
I wish everyone a happy and healthy weekend. And if you should think of me, feel free to cross your fingers for NO IVs.
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