I haven’t posted a health update (or much of anything else) in some time. I’ve had some huge life events and I really, really want to record them. These days, however, I am as busy with HPS work as I ever was working as a journalist. Sadly, I’ve also been having some health issues. This means there are only so many hours in a day that I am really productive, and I need to spend them working on some HPS work. It’s important stuff, or I wouldn’t put aside things I know I need for my own well being. (And, it isn’t something that will go on forever.) Sometimes you just have to bite the bullet and hunker down!
That being said, I had a not-so-wonderful doctor appointment on Friday. I mentioned it on facebook, but didn’t go into details. Facebook is not a blog after all. And, this way I figured the people that really want to know what is going on will click through and read this. I’ve always been committed to sharing my HPS journey, but some forums seem better than others for the purpose.
I love my PCP Dr. Kennedy. It wasn’t a good visit, but it wasn’t because of him. Living with HPS is a journey, and along that journey there are certain milestones. More often than not, they are not happy milestones. We pass them. We get upset. We cry and have our grieving moments, and then that milestone becomes a new normal. Sometimes the milestones actually have little significance medically. Instead, they are a psychological milestone – something that holds some special meaning to us due to our own journey.
Friday was like that for me. For those who talk to me regularly, you know I’ve had a hacking dry cough for two years now. Sometimes it is worse, and sometimes it is better – but it never goes away. Since October it has been more on the worse side. If I talk on the phone too long I get out of breath and start coughing. If I’m exercising my cough prevents me from continuing rather than being worn out from the exertion. Sometimes I cough so hard that I wet my pants, even though I felt no need to pee. Sometimes if I have a coughing fit too close to a meal, I’ll throw up my dinner. The cough makes me tired. It makes me feel sore, as if there were a little man living in my chest using my chest bone as a punching bag. My abs feel like they should look awesome for all the aching they do (but they don’t – not even that up side!)
The cough very much affects day-to-day life. I avoid places where groups are gathered and a reasonable amount of quiet is expected (like church). Very well meaning people offer to get me water and dig through their purses for cough drops. You accept them because you just can’t explain in such settings that all the water and cough drops in the world make absolutely no difference. You’re sitting there hoping the cough doesn’t get so bad that you throw up on the spot!
For these two years I’ve been very worried that it was too easy to blame the cough on my pulmonary fibrosis. While my pulmonary function tests (PFTs) aren’t exactly fantastic, they also haven’t been that horrible either.
Working with others with HPS for more than 10 years now, I have some insight into the usual pattern of decline. Some patients get a cough much worse than others. I haven’t really seen anyone else with such a bad cough so early in this process. I can’t help but think that doesn’t bode well for me. I told a doctor several months ago that I was concerned all that coughing, even if it weren’t caused by the fibrosis, would cause further injury and accelerate the fibrotic process. She told me not to worry, that this isn’t how it works. Still, I wasn’t satisfied with the answer. Why isn’t it how it works? Since honestly, we don’t seem to really understand how it works (if we did we’d have better treatments) how could she be so sure? Is she right, or was she just trying to make me feel better?
There are times when the cough improves. Lately, we’ve had such cold weather. Even if I don’t go outside, my cough seems to be much worse. Then, when the temps go up into the 40s to 50s again, the cough improves. That, combined with the link to exercise, had me thinking (maybe hoping) that my asthma was just very flared up.
Since October I’ve seen an ENT to rule out a cough because of post nasal drip. I’ve had a test done on my esophagus to look for modality problems or GERD. I do have GERD, but according to the test, all is well in that department. There were no findings that would explain this.
Convinced the recent worsening was due to asthma (I also have asthma) I went to see my PCP thinking I’d just get handed a script for a breathing treatment, a nebulizer – something like that.
No such luck. It seems my PFTs don’t show asthma that would warrant such an intervention. I’m already on steroids etc. for asthma. He didn’t feel there was anything else that would make a difference. I take a medication to help control the bronchial spasms. He renewed that script, as well as the one for my emergency inhaler and asthma medications, but that was it. It seems that at least here, there are no other explanations for the cough except the progression of my lung disease.
My PFTs have been down twice in a row now, and my last CT scan did show more fibrosis on it.
I was upset, but holding it together pretty well. And then the straw came that broke the camel’s back. My mom has moved to Colorado and lives at 7,000 feet. To get to her house, we have to go over a pass that is 11,000 feet.
When my dad lived in Colorado several years ago at 8,000 feet, I felt like I was having a much harder time breathing. Everyone does, whether you’ve got lung disease or not. It’s part of adjusting to the altitude. Still, when you’re lungs aren’t healthy to start with, it’s harder to cope with the insult. I had asked for an elevation test to determine whether I might need oxygen in Colorado. I really didn’t think I would, but still, didn’t want to be in a rural community with people who know little of pulmonary fibrosis and less of HPS and find myself in a crisis.
When I got the results, it showed I needed oxygen above 11,000 feet. Somehow that had been good news. I expected I’d have the fatigue etc. below that and have to take things slow, but I’d be okay. Dr. Kennedy (who I trust) suggested that even though I didn’t absolutely need the oxygen in the test until 11,000 feet, that during the test I was sitting at rest. I wasn’t shopping, or climbing stairs or doing laundry or playing with the dogs. He said I should plan to have oxygen there in case I need it to do the things I want to do.
With all my usual scripts, I went away with a script for liquid oxygen.
Somehow the news that nothing could be done for my cough because it was probably caused by the PF, coupled with the oxygen script just sent me over the edge. I managed not to cry at the doctors or waiting in the hospital for my ride. But, when I finally got to a place where I could, I fell apart. I talked with a few HPSers on the phone and cried.
It seems like more of a psychological milestone than a medical one. After all, I don’t yet require oxygen in my day-to-day life. For many, that is a huge milestone. It is a physical, tangible, for-all-the-world-to-see development that your lungs are crappy and they aren’t getting better. This wasn’t even that.
Still, I have many happy memories of Colorado. The realization that I just can’t go there without all this concern and planning and do what I please was a psychological milestone for me.
I couldn’t help but think of my friend Elsie. The anniversary of her passing had just gone by. I was with her at NIH when they told her she now needed oxygen. She took it so well. Even though I knew she hated it, she knew she needed it to keep the rest of her body healthy in hopes of getting a transplant. It was still a big milestone. She also got her transplant center referral that trip too. I was so glad I could be with her. I knew how upset she must be. She did have a cry and didn’t pretend to be happy, but she took it all in stride ready to do battle with the next part of the process.
My PFTs are now what hers were when we were in the clinical trial together. We tried to be roommates whenever possible and schedule our hospital admissions at the same time. It is not lost on me that she is now no longer with us. She had leveled out for a while when she was getting the drug (she was on the active drug.) Her big drop came after the trial had ended.
Right now, there is no trial for me.
I’m better than I was Friday, but I’d be lying if I said I wasn’t still feeling raw. My concentration is horrible right now, and there is so much to do!