Sunday, November 22, 2009

Update

I just wanted to give a quick update. I did PFT's on Thursday and my FEV1 was up to 40%. Still very disappointing and incredibly low, but much better than 27%. When my doctor stopped by my room this morning he told me he thinks I've made a lot of progress in the past three days especially. He said he can see that I'm improving physically and emotionally each day. He is very optimistic and thinks that I can be up to 70% by the time I have PFT's again this Thursday. I, however, am not quite so optimistic but at least it gives me a goal to work towards. I'm terrified at the thought of going home with such low lung function, so I hope he is right.

I'm still having quite a bit of chest/back pain. After extensive observation, it has been determined that the pain isn't coming directly from my lungs, but that it's more muscular. They think that the tissue between my ribs has become sensitive from all the coughing and heavy breathing and that the muscles throughout my back have just been so overworked that they spasm every now and then. Also, my body is quite intolerant of the hypertonic saline they've been giving me during treatments. It tightens my chest up almost immediately and the pain just worsens from there.

The last blood test they did showed that my Tobra levels are high. Four days ago they were right where they needed to be, but at some point over the past few days that changed. They were so high, in fact, that it had started to affect my liver function. Needless to say things have been adjusted and I'm now being given a lower dose fewer times a day.

Overall I feel SO MUCH better. My energy is slowly returning and I feel a noticeable difference in my lungs every day. My sister in law and my dad both told me that I finally look like "Jenny" again. Things are getting better...

4 comments:

  1. I'm glad you are beginning to feel better. I know what you mean about HS. It does me that way too I used to take it but not anymore. I had to do an albuterol inhaler afterwards. I believe you can be back to 70%. I'm very optimistic. My pfts once dropped to 50% well that was after the inhaler they were 40 something before it and I bounced back to 90%. So have faith and just fight! You can do it. I'm praying for you darlin.
    God Bless

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  2. Costochondritis (the inflammation from coughing) SUCKS. Pardon my language, but that is about it. I've had that too, from lots of coughing before. The best thing for it is high dose ibuprofen (helps with inflammation) and according to my mom, who also has lots of costochondritis, organic cherry juice. It's nasty, but she says it helps.

    Are they planning to keep you for 2 weeks or longer? I know this also sucks, but if I were you I would push to be kept longer than 2 weeks if your PFTs are not up high enough. For me, 2 weeks is never long enough on IVs, and I would suspect that since you have had such a drastic drop you would probably do well on a 3rd week. Like I said - another week sucks, but it might be helpful. Just a suggestion... I am so glad to hear you are doing so much better, though!!! I'm praying for you too.

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  3. Misha-thanks for your vote of confidence!

    Cindy- I quickly discovered that ibuprofen seems to be the only thing that takes the pain away. If it continues when I get home I may have to try the cherry juice.
    I am nervous to see my PFT scores this week. My baseline is 90%. I'd feel comfortable going home at 70, knowing that I would work hard and hopefully continue to get better. But I just don't know if they'll be that high, and going home any lower than that scares me. I've also considered a third week, as hard as it would be.
    But I'd see if they would be willing to let me do home IV's for that last week. I NEED to be home with my baby.

    Thank you both for your thoughts and prayers!!!

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  4. If ibuprofen takes the pain away when narcotics don't, it sounds like it is DEFINITELY something like costochondritis. I would continue taking high-dose ibuprofen for a few weeks. As for the cherry juice, if you do try it, get the plain stuff from the organic section. It is NASTY!!! I will warn you.

    As for home IVs - hey, they let me do them for a 3rd week, and I live in Rexburg and my numbers at that point were much higher than mine are now. (AND this is after almost a full year of telling me there is no way I would ever be allowed to do home IVs because I live so far away.) I've found that being very up front with the doctors is a must - tell them you don't feel comfortable going home at less than 70% at a minimum, that you feel like a third week would help you get back on more normal footing, that you don't want to let this go on long enough to cause permanent damage, etc. Also, make sure that you bring the idea up with either Dr. Liou or Dr. Carveth, since the other attending physicians aren't always that clued-in to CF or what Liou and Carveth want.

    Also - another thing you have to do to get the home IV okay is really commit to them that you will be absolutely compliant at home... keep doing the 4 therapies, exercise, etc. I will not lie, it makes for a boring and exhausting week. But it is SO much better than being in the hospital. (And I agree, you need to be home with your baby!)

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