Last week I was back at the National Institutes of Health for my one-year follow up from the Pirfenidone trial, as well as to undergo a lung lavage to donate lung fluid for research.
I don’t quite know how to explain this. Sometimes when I’m traveling to NIH and then home again it feels as though I’m traveling between planets – the planet of real life and the planet of ideal life where everyone understands and no explanations are ever needed or required.
When I was working I was always so exhausted that I felt as though I landed at NIH on the verge of completely falling apart. It was the only place I could really go where no one would bother me for several days. Even if I was doing well, there’s something about being “in the hospital” that the non ill people understand as some sort of line of demarcation. It was nice to be at the NIH and not be on the verge of complete and total exhaustion.
I was on the placebo part of the study for the Pirfenidone trial, but when the trial was closed it was agreed everyone would return in a year for a follow up. I’m not sure about the scientific benefit of this, but it had an emotional benefit for me. The trial ended right before I was to return for my three-year exam. Although I knew I’d be back someday, I didn’t get a funny kind of closure.
When you go to the hospital every four months, you get to know people. The lady in admissions always knew me. The technicians in the various departments and the nurses on the floor all knew me. I knew them too. I didn’t get to say good-bye, or “I won’t be back for a year.” That might sound silly, but I missed them and it was good to see them again. Rob and Phillip were my nurses this trip that I knew very well from the past. It was great to see them and catch up on what had been happening in their lives. They were eager to know what I was up to as well.
The lavage was a piece of cake. I think having done it before made it go even more smoothly. I really wasn’t nervous at all and sailed through the whole thing. The funny part was the day of the lavage I was like Elsie was when she and I did the lavages together (back in the good old days when you could go as a group.)
Elsie arrived in her bed and immediately asked the nurse if she could go to the gift shop. “Heaven’s no” was the answer. Elsie felt totally fine and wasn’t tired at all.
That’s how I was. I snapped right back. Within an hour I had passed the swallow test and was downing a tuna sandwich. My throat didn’t even get sore this time. The odd thing was it was the following day when I had the symptoms the drugs are supposed to create – feeling tired and having a mild headache. I’m not sure if it was some sort of delayed reaction, or if it was just that the visit was ending and all the associated stress that I wasn’t even aware of was draining away.
As part of the visit I got a complete work up. I had PFTs (pulmonary function tests), a CT scan, a lung x-ray, an EKG and lots and lots of blood work. Kevin did two 24-hour urines because he was checking my kidneys. They had been a bit off on previous visits.
It was a good news/bad news trip. The good news was I got cleared of any kidney issues after three years of suspicious stuff. The bad news was that there is new fibrosis in my lungs. As everyone assures me, it’s not “much” but to me a single extra fibrotic cell is one too many. My DLCO was down (to be expected with new fibrosis) but interestingly all the other numbers were up. Go figure!
The news of the new fibrosis did disturb me, however, even though I’m breathing pretty great. In the past when they’ve showed me my CT scan I’d put my nose practically right on the monitor. They’d blow it up bigger and bigger so I could see it. Even then I was never really sure if I was seeing what they were pointing at. I almost sort of played along because I wanted to see the scans and I didn’t want the docs to think there was no point in showing them to me.
This time I had no trouble spotting the fibrosis, even sometimes without assistance. Granted, it was only in a few places, but still, even I could see it. It also sort of alarmed me that on my x-ray the radiologist noted seeing a bit of fibrosis. Fibrosis is supposed to be really hard to see on an x-ray.
Even though my other PFT numbers were all great, and even better than before, it somehow doesn’t seem reassuring. I’ve been in HPSland too long to not be very aware how things can change. I’m now 37 years old, a ripe age for things to really start to change (on average). Am I posed at the edge of the cliff, or am I simply on a rolling gradual hillside? No one can say for sure really. Knowing that there’s new fibrosis, even if it is small, just makes that question seem all the more poignant.
I don’t quite know how to explain this. Sometimes when I’m traveling to NIH and then home again it feels as though I’m traveling between planets – the planet of real life and the planet of ideal life where everyone understands and no explanations are ever needed or required.
When I was working I was always so exhausted that I felt as though I landed at NIH on the verge of completely falling apart. It was the only place I could really go where no one would bother me for several days. Even if I was doing well, there’s something about being “in the hospital” that the non ill people understand as some sort of line of demarcation. It was nice to be at the NIH and not be on the verge of complete and total exhaustion.
I was on the placebo part of the study for the Pirfenidone trial, but when the trial was closed it was agreed everyone would return in a year for a follow up. I’m not sure about the scientific benefit of this, but it had an emotional benefit for me. The trial ended right before I was to return for my three-year exam. Although I knew I’d be back someday, I didn’t get a funny kind of closure.
When you go to the hospital every four months, you get to know people. The lady in admissions always knew me. The technicians in the various departments and the nurses on the floor all knew me. I knew them too. I didn’t get to say good-bye, or “I won’t be back for a year.” That might sound silly, but I missed them and it was good to see them again. Rob and Phillip were my nurses this trip that I knew very well from the past. It was great to see them and catch up on what had been happening in their lives. They were eager to know what I was up to as well.
The lavage was a piece of cake. I think having done it before made it go even more smoothly. I really wasn’t nervous at all and sailed through the whole thing. The funny part was the day of the lavage I was like Elsie was when she and I did the lavages together (back in the good old days when you could go as a group.)
Elsie arrived in her bed and immediately asked the nurse if she could go to the gift shop. “Heaven’s no” was the answer. Elsie felt totally fine and wasn’t tired at all.
That’s how I was. I snapped right back. Within an hour I had passed the swallow test and was downing a tuna sandwich. My throat didn’t even get sore this time. The odd thing was it was the following day when I had the symptoms the drugs are supposed to create – feeling tired and having a mild headache. I’m not sure if it was some sort of delayed reaction, or if it was just that the visit was ending and all the associated stress that I wasn’t even aware of was draining away.
As part of the visit I got a complete work up. I had PFTs (pulmonary function tests), a CT scan, a lung x-ray, an EKG and lots and lots of blood work. Kevin did two 24-hour urines because he was checking my kidneys. They had been a bit off on previous visits.
It was a good news/bad news trip. The good news was I got cleared of any kidney issues after three years of suspicious stuff. The bad news was that there is new fibrosis in my lungs. As everyone assures me, it’s not “much” but to me a single extra fibrotic cell is one too many. My DLCO was down (to be expected with new fibrosis) but interestingly all the other numbers were up. Go figure!
The news of the new fibrosis did disturb me, however, even though I’m breathing pretty great. In the past when they’ve showed me my CT scan I’d put my nose practically right on the monitor. They’d blow it up bigger and bigger so I could see it. Even then I was never really sure if I was seeing what they were pointing at. I almost sort of played along because I wanted to see the scans and I didn’t want the docs to think there was no point in showing them to me.
This time I had no trouble spotting the fibrosis, even sometimes without assistance. Granted, it was only in a few places, but still, even I could see it. It also sort of alarmed me that on my x-ray the radiologist noted seeing a bit of fibrosis. Fibrosis is supposed to be really hard to see on an x-ray.
Even though my other PFT numbers were all great, and even better than before, it somehow doesn’t seem reassuring. I’ve been in HPSland too long to not be very aware how things can change. I’m now 37 years old, a ripe age for things to really start to change (on average). Am I posed at the edge of the cliff, or am I simply on a rolling gradual hillside? No one can say for sure really. Knowing that there’s new fibrosis, even if it is small, just makes that question seem all the more poignant.
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