one day at a time . . .

Here we go again…

Exactly one week ago I finished IVs and just like the past few times, I’m sick again. Woke up with a fever 101.6. One week free.

Started oral antibiotics.

Is this a sign that I just won’t improve?

Am I fooling myself thinking I’m too healthy for transplant.

I wish I knew what to do…

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Comments on: "Here we go again…" (5)

  1. catchastar said:

    Hi – not sure how I stumbled onto your blog, but have been reading and wanted to say I am so sorry you’re going through this. I have CF, current PFTs @27% but not listed for transplant. My doctor told me about four years ago to consider transplant, so I’ve done the evaluation, but at that time had a number of medical issues to be cleared up. Since then I’ve been relatively stable, but recently gone down – not as quickly as it sounds you have, but slower. Your story strikes a chord with me for two reasons: 1) Dr. Schwachman at Children’s was my first CF doctor when I was diagnosed. He continued to see me even after he retired. 2) My husband is totally against a transplant and constantly tells me if I would only do this exercise or that one I would improve.

    Please keep letting us know how you are doing –

    • Wow! You’re my first CF connection where the husband os against transplant. My husband is in such denial. We recently went to nj for a 2nd opinion, and he basically stated I have end stage lung disease, ous pockets of mucus throughout my lungs, and ivs only scratch the surface. He took a sputum culture. My husband requested that my doc and the other doc talk and come up with one last valient iv effort. So I started last night. And my husband said “this is gonna work”… I told him it would only take care of the surface. Well, we shall see. Of course i’d like to avoid transplant, but I also know how my life has changed recently and being stuck on o2 and a wheelchair when going out is not a way of life. Good luck to you. Keep in touch. Are you from Mass? How old are you?

    • Hi. Ive had problems accessing my blog for quite some time. I finally regained access yesterday and ive been reviewing old comments. I just read yours and im wondering how youre doing. Id love to hear back from you ♡♡

  2. catchastar said:

    Hi – thanks for writing back – hope all is well, you haven’t posted in a while. Yes, I live in MA – I’m 48 yrs old. Wow – sounds really old when I type it out – but not ready to fold it in yet!!

    I’d love to PM you if you have an email you can share and talk more. Our husbands sound very similar – does he happen to be an engineer?

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