I had good news, although my mood isn’t fitting the good news.

My pulmonary function test (PFT’S) went up, great! Yes! Yes! It was my last big blow which I thought I was going to hit the ground, but it was the strongest of the 4. It was 2.97; my last visit highest score was 2.85. I gained some airway. I still have to get back to my goal of 3.4 liters in the first ten seconds of blowing. That is 100%. I am not there yet. I have 400cc of air to go. Side point: I always sit when I do blow into the machine, because years ago they said I “had” to sit. The technologist asked if I wanted to sit or stand. I sat, because I was kind of taken back by the whole thing, but I am going to stand from now on. Standing is easier and I think I would be able to blow out more air. Back in the day I stood. I am not sure why they changed the rules. Maybe patients started to fall over. Sometimes you do feel as if you could pass out.

I knew I wasn’t going to zip back to 100%. It has only been 2 weeks post IVs. I have this crazy chart that I have mapped overtime and I am going to post once I add my newest scores on it. It visually represents this whole lung function situation much easier.

My chest x-ray was much better. My lungs were fuller and less bronchiectasis. All good signs!

My doctor’s plan: He wants me to come back in 3 months, thank goodness I get a break. He wants me to do oral antibiotics one month on, one month off, then one month on again for two full courses before I return. He doesn’t me to have any setbacks while my lungs heal and repair aiming to get back to my full 100%.

He wants me to get a chest CT, which I am surprised they haven’t order one yet. I think my doctor wanted to see where this chest x-ray was, and then go from there. He wasn’t sure about a fissure of mine. I am not exactly sure what that means, but I think lack of airflow in a certain area in my lung.

Then, depending how I will be at that point we will assess and figure if I should go on more oral antibiotics or not.

Tricky thing – and something I don’t like. Many CF patients do one month on, one month off, and then one month on of oral antibiotics. And when I say oral, I mean through my nebulizer, not pill form. I do not and will not become one of those patients. This one drug, called Tobi, is THE drug for me. I don’t have another option. I don’t want to build a resistance. They say it is difficult to do, it isn’t happening with me.

Sheila pointed out that maybe other CFer’s have other options, not me. I still think it is over-kill. Plus, my doctor said that there isn’t a lot of scientific evidence that with someone like myself, with high PFT scores already, if it provides that much benefit. He says it does with CFer’s with lower, but not necessarily higher.

There is my answer. I will work and do what I can to get it my lungs back to where they were over the next few months, and forever of course, but I am not going to do this antibiotic thing long term.

In addition, I don’t think I am going to get the CT. I have 3 months to decide, but I think I have done enough here and it isn’t going to change the plan, it will only give my doctor a better view of my lungs. I would rather have a repeat chest x-ray that has 30 times less radiation and go from there. Let’s do the drugs – I guess – let me get back to my crazy exercise self, see what my lungs can do.

I am agreeing to the antibiotics, but as you can see I have mentioned it many times here. I am resistant. I didn’t say anything in the office, because I get it. The drugs will give my lungs more opportunity to heal without having the pseudomonas “colonize” again. Gross word isn’t it. It is just more to do, and it just never ends – ever. I am not complaining because I had great news, but I have found NOTHING is easy with CF. There are easier things than others, but not ever easy. They say that CF is one of the most labor-intensive conditions; I would agree. CF is exhausting, period. I have so much work to do, and I have already done so much work – a mountain to climb.

Pseudomonas aeruginos is the main culprit in this story. It is a little bastard. It is stubborn as hell. When it sets in it last longer, penetrates harder, and is nearly impossible to get rid of altogether. If you do, it is probably unnoticeable because it readily comes back. I “colonized” it as an infant and forever it has found a home in my lungs. If my sodium chloride in my cells would flow in and out of my cells at a normal rate, it would clear it out; but that is not the story. My cells rode the short bus shall we say.

Perhaps, perhaps, the drug that they are working on for F delta 508 mutation, which is my mutation – the toughest and most stubborn of mutations works, maybe PA would have a minor role in my story. Fingers crossed because there is much work to do, yet.

Next step for my personally, I think I need to start swimming. If I wore goggles for I could wear my contacts, I think I would do it. Once upon a time at a CF conference, a post lung transplant CFer said that the key to his success post transplant had been swimming. I don’t have to do 50 laps, but that phrase has stuck in my mind all these years. Maybe I should bring it out and make use of it.

I do my recumbent bike and elliptical at home. I have been doing yoga the last 3 months, except I have been on hiatus since the IV drugs. I do weights, although not has hard and rigorous as years prior; I don’t really need to at this point. I have routinely run on a treadmill in the past. I have played tennis; I hike. I don’t ride my bike outdoors as much as I should – right now actually none at all. Whatever I do, in the mix of this, I need to do it 3 times a week – no buts. I am really good about this, have been for almost 20 years now. Ever-so-often you have to step it up, and because of the post transplant guy and him saying ‘swimming’ did it for him, it is calling me.

Now the big question where and I hope I don’t have to kill myself to pay for it. I am going to talk to the social worker through the CF Center, because there are programs to help pay for gyms, etc. It is a program created by a father who lost his son to CF. And he felt, CFer’s should never have to worry about paying to get what they need for exercise. I hope I can tap into that, or just tap into someplace that doesn’t cost a ridiculous amount to use a pool.

So, I say thank you to whomever is looking over me each day. Each day giving me strength, dedication, endurance, love, and care. A million thank you’s.