I’m home! Can you believe it? Because I’m having a hard time believing it’s real and it could last. So much has happened in the last few days, I feel writing a giant update on my blog is the best way to update everyone.
The general background:
After I got a cold around the 4th of July I was hospitalized for 3 weeks. I came home, not really better, and then got slowly sicker. I was home for 2 weeks, and then I ended up being taken by ambulance to a nearby hospital because my pulse ox was so low and my pulse was so high. I went home on oxygen. Less than a week after that, I was back at the hospital in Milwaukee and spent almost 2 weeks there.
The more specific update and recent details:
On Friday I did my PFTs. I was POSITIVE they were going to be at least a little better. On Tuesday my FEV1 was 34%, and on Friday I was hoping for at least a 39%. My reality was 30%. My FEV1 went down, of all things.
We’re all baffled. Dan and I, my parents, and my doctors are sort of stumped as to what the hell is going on with my lungs. My CT scan of my lungs was fairly clear and looked really good for a pair of CF lungs. It definitely doesn’t match my numbers, how I feel, or why I’m still on oxygen. My doctor, Dr. B, came to my hospital room and we had a very long chat about what the plan should be and where we go from here.
First, this all could still be viral. Dr. B said that sometimes it takes up to 12 weeks for a virus to clear the system of a CFer and since we’ve kicked the shit out of both the MRSA and pseudemonas with so many IV and oral antibiotics, it’s probably time to stop the IVs. I am on one IV at home to treat a couple little other random bugs that were growing in my last culture. We’re hoping and praying this is viral and will go away in the next 4-6 weeks and I’ll get better. I will work my butt off and get better.
My parents and I discussed the mannitol, and then I discussed it with Dr. B. When my mom started making it for me, I started using it more (almost daily) because I was no longer trying to make my supply last as long as possible. This coincides with needing prednisone more often, so I’m going to back off on the mannitol and go back to doing it 1-2 times per week. Hopefully this will reduce some inflammation in my lungs.
The prednisone could also be causing rebound inflammation now because I’ve been on such a high dose for so long, so we’re going to taper down the prednisone very slowly. It’s going to take about 2 months for me to get off of the prednisone, which is sad. I’d really like to sleep better, eat less, and have a slimmer face again.
A VERY exciting thing is I got approval for the new AffloVest – the vest that has no tubes or a box. It can run on a battery so you can wear it anywhere and you can wear it and be active. Like, I could be ironing and wear my vest. I could ride my stationary bike and wear my vest. I could wear it in the car or on a plane. It’s very exciting! I’m going to try to do my new vest 1-2 times per day along with 1-2 manual chest PTs. The more treatments the better!
When my new vest arrives next week, the first thing I’m going to do is wear it while I ride my stationary bike. I’m so excited to do that! The next key part of our plan is exercise. I must exercise. First, to kick my lungs into shape and second to lose weight. I need to lose 10-15lbs before I’d be eligible for transplant. I thought that was odd, but it’s what Dr. B said. I’ll talk about the T word in a minute.
I talked to my psychiatrist and Dr. B and we decided I can go back on the antidepressant I had to stop cold turkey to go on an antibiotic for my lungs. Dr. B and I don’t feel we’re going to use that antibiotic (Zyvox) all that often, since it was a major culprit in causing the terrible tachycardia, and some other reasons. So I’ll go back on the PTSD/depression/anxiety med that was working pretty well. Yay serotonin in my brain!
That’s our basic game plan. Med changes, lots of airway clearance and exercise, and good rest at home. Do those things and wait and see if I get better.
Dr. B presented me two (well three) other possible options to try.
1) Trying a drug called “cystagon.”
2) Being part of a clinical trial in Canada where I would receive inhaled nitric oxide.
The prescription for the cystagon had already been sent out. We’re waiting to see if my insurance will approve it, or if they’ll need a lot of paperwork to approve it. I’m not really sure what the drug does, or why I’ll be taking it - I clearly need to be reading medical journals instead of typing this - but Dr. Biller said it might help me, so I’ll try it
The clinical trial in Canada is an interesting option. I’d love to be part of that. The hard part will be it will require me to go to Vancouver for about 2 weeks with little to no notice. And inhaled nitric oxide. I need to read more about that in cystic fibrosis as well.
Dr. B brought up transplant. I’ve talked to her about transplant before, but it’s always been brought up by me because I had a specific question. Dr. B said that it’s an option, but she “doesn’t think we’re there yet.” And she told me that I need to lose about 10 pounds because my BMI is a touch too high to qualify for a lung transplant. Honestly, I’d rather be in this boat than needing to gain weight to qualify for transplant. I think losing is easier than trying to gain weight when you’re sick - and I’ve been on both ends.
So that is the update on my physical health. I’m home, but not well. I’m still happy to be home and working hard here to get better. It’s much better for my mental health – which I’m hoping to discuss in a different post soon.