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My annual clinic appointment was today, a month late for my 2011 annual, but that’s where it belongs in the timeline. Overall it was good news, but we had some very good dialogue with the doctor about quality of life vs the PFT numbers and what the picture is now and what it looks like for the future. Prepare yourself for a long post because I really don’t want to break this one up over the week.
Good news first: I’m not dying. I’m also not expected to be on the transplant list any time soon. The rest is a big bag of mixed nuts that will take us a while to sort through. I really hope that you find this informative as an “aging CFer” to know what is ahead for those younger than me and also encouraging and transparent for those in the same inning as I am – that’s 33 for those new to the site.
For one, my PFTs are down 3% from 39% to 36%. They put me in the box for PFTs this year for the annual check-up, which measures 2 additional things: diffusion of O2 into the blood and the amount of air that gets clear in and clear out. My diffusion is excellent, which means that my body performs at a high level of gas exchange so I can still get oxygen when my volume is low. The test also showed that I am (this is what we remember hearing and then Googled it) gas-trapped: I’m breathing in deeply, but then all of the air doesn’t get blown back out. This eventually leads to high concentrations of carbon dioxide because the air is depleted of O2 and then can’t get back out. Protocol: new broncho-dilators. We are going to try an Atrovent/Albuterol combination for 4 doses and then try Spiriva for a few days to see which one makes me feel better. He said that I am not to take both concurrently.
That brought up the nagging question about my quality of life and why they won’t put me on IVs to feel better. I was both happy and sad about the answer, you’ll soon know why, too. In the last 2 years of being healthier because of compliance and much higher body weight, I have new susceptibility to IV meds that were once resisted by my bugs. Back then was my worst: I was down to having 2 meds to push on an infection that required that much intervention. I have at least 3 new meds that could work so we asked why they don’t put me on two of them to feel better and push transplant back further into the future. This is where I just about choke up because we used the “t-word” again. I also asked about how they determine the give/take between keeping PFTs up with IVs and saving IVs to stay alive while listed for transplant.
/gulp!
I got a very long answer, which finally made me understand the big picture and the methodology they use in their practice, combining results with theirs, Duke, and Pittsburgh to evolve the best course of action as CFers progress to late-stages of the pulmonary disease. /gulp They don’t save the IVs to keep you alive for the long-haul awaiting transplant here because listings typically aren’t very long; they use them as a gigantic cocktail just before and after transplant to kill all of the bacteria from the diseased lungs that course through the bloodstream during surgery and can land all over the body, including the new lungs. They essentially go all-in as in poker. They want as many weapons as possible to kill everything in an anti-biotic sort of chemotherapy. The light bulb went off in my head then: they really are preparing me for transplant… just not any time in the near future. My team is very, very good at what they do, and now I’m putting my life into their hands even more because I trust their combined science and wisdom in treating so many of us each month. I’m trusting them that they are making the best long-term decision to deny me 2%-5% PFT points in exchange for saving me from a life-threatening infection post-transplant.
On the note about pushing that event horizon further away, we got onto the topic of the chest tightness. He listened to me wheezing and then spaz when he made me “blow out the candle.” The discussion switched to reflux at that point. Solving that has a lot to do with delaying transplant because I may be acid-washing my lungs every day now, so I’ll be having a swallow test with barium and a 24-hour pH test to see what the pH levels are just above my stomach. I really, really, really, really, really don’t want to do the pH test, but if it means going longer with these airbags, I’ll do it. Did I mention that I really don’t want to do that? If I do have reflux, we’ll do a Nissen fundoplication to prevent acid from entering the esophagus when the stomach churns and contracts.
But wait! There’s more!
My weight and appetite have been a bit of an issue, but they aren’t super concerned about it because I’m not diving off the deep end with my weight. I was 120 this morning, but a 23 BMI puts me at 134 +/- 5lbs to avoid the issues of being overweight with CF. I told them that my problem is simple, but I don’t have a fix for it, thus it’s complicated. Here it is:
- I don’t feel like going through the effort of making my 1,000 Calorie breakfast because I’m not hungry in the morning
- I’m not hungry because I’m not exercising
- I’m not exercising because I’m so darn tired every day and take the entire weekend off now to stay strong to fight infections
They worked it backwards and put me on mirtazapine (Remeron) to stimulate my appetite. It’s classified as an anti-depressant and I discussed it further with Sue, who told me that it has excellent results for those it works for (most) and no one really has any side-effects. I need to gain 15 pounds, and that is what this is good for. Anyone have experiences with Remeron that helped them gain weight?
Then…
After we’d been home for a while, Sue e-mailed me to call her. She said my liver enzymes were up to 100% elevated from my ER visit levels in November, so they are putting me on ursodiol to help my liver cope. It’s not because of excess drugs that we take as CFers, rather it’s the gunking up of the liver in the same way our pancreas gunks up. Yay! Another medicine! Of all of these changes today, I’m the least concerned about this one, but I think this is the one that caught Beautiful by surprise the most.
All in all, we were very happy leaving clinic knowing (finally really knowing) why they have been and still are refusing to put me on IVs when I feel like crap. Until my numbers show something else or I: have recurring fevers, go on IVs every few weeks just to keep me alive, my blood gas shows higher concentrations of carbon dioxide, or heavy hemoptysis, my life remains as-is in the aging CF status quo. To quote my doctor’s best line today: “You’re walking around with the lungs of an 80-year-old – you’re not supposed to feel good,” when I told him that I just don’t feel as good as I used to.
Keep your stick on the ice. We’re all in this together. Oh, and go read Beautiful’s account of today, too.
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CF Fatboy is a small business owner flourishing in Tampa, FL. He and Beautiful have been married for 5 years and are doing everything they can to ensure they have a long life together.
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