It's been a very long week here at NIH, but we should wrap up tomorrow and to be honest, I couldn't be happier about my test results.
So, first the news we all wait to hear about every four months. My lung function numbers were essentially all the same as last time. That means the nice little bump my FVC had in December is holding steady - and we all know it isn't thanks to my brilliant work out schedule these past few months.
Every time I come they ask me if I think I'm on the Pirfenidone. This is the way I look at it. I'm in the trial. If I'm getting it great. If I'm not then I'm just helping do the work to eventually get to the goal. I could make myself crazy trying to figure out if I'm on the real stuff or not. In the first few months, I did think about it a lot. But now, I've sort of settled down on that front. I can't do anything about it, so I intend to assume I'm on the drug and move on. The odds are in my favor, and if I'm not, I can't do anything about it anyway.
The other concern this trip was the increase in tummy troubles and joint pain. I saw a ton of doctors this week and none of them found anything. This is good news. No lupus, no other auto-immune stuff (although a few of those tests will take a few weeks to come back.) The x-rays of my joints etc. showed nothing. The inflammation markers they check for in the blood all were normal.
I am truly happy about this. It's good news. But, I also know the joint issues and tummy troubles aren't in my head either. I felt like I got a mixed response on this front - some seemed to think I could be having a minor GI flare up and others didn't know since all the tests were normal. Oh well. I guess more wait and see and hopefully it will just go away.
They finally managed to get my hives under control. That was a huge blessing! That was just miserable!
The other problem I've had this week is pretty intense lower back pain (lower than when we were dealing with the kidney scare.) Actually, sometimes it's hard to tell if it's my very most lower back, or my butt, that hurts. It's sort of in the tail bone area.
Last Saturday I took care of my godchildren (pictures coming) I thought perhaps lifting them and carrying them and playing horse with them etc. might have done something to my back. The pain actually started Sunday, but became worse as the week went on. Yesterday and last night it was intense and horrible. I didn't sleep again. I couldn't bend over. It hurt to walk down the hall or go to the bathroom. Thank God I was up here when all this started. It saved me a trip to the doc.
The trouble is a lot of the pain meds I can't take because they cause bleeding, and I'm allergic to morphine, which rules out many of the others. So, tonight we're trying another drug. It hasn't gotten rid of the pain, but it has knocked it down to a tolerable level.
For those that know Karen, I am happy to report she's doing fine this evening and everything went well for her too. But, you'll have to read her blog for her update. Grin!
So, first the news we all wait to hear about every four months. My lung function numbers were essentially all the same as last time. That means the nice little bump my FVC had in December is holding steady - and we all know it isn't thanks to my brilliant work out schedule these past few months.
Every time I come they ask me if I think I'm on the Pirfenidone. This is the way I look at it. I'm in the trial. If I'm getting it great. If I'm not then I'm just helping do the work to eventually get to the goal. I could make myself crazy trying to figure out if I'm on the real stuff or not. In the first few months, I did think about it a lot. But now, I've sort of settled down on that front. I can't do anything about it, so I intend to assume I'm on the drug and move on. The odds are in my favor, and if I'm not, I can't do anything about it anyway.
The other concern this trip was the increase in tummy troubles and joint pain. I saw a ton of doctors this week and none of them found anything. This is good news. No lupus, no other auto-immune stuff (although a few of those tests will take a few weeks to come back.) The x-rays of my joints etc. showed nothing. The inflammation markers they check for in the blood all were normal.
I am truly happy about this. It's good news. But, I also know the joint issues and tummy troubles aren't in my head either. I felt like I got a mixed response on this front - some seemed to think I could be having a minor GI flare up and others didn't know since all the tests were normal. Oh well. I guess more wait and see and hopefully it will just go away.
They finally managed to get my hives under control. That was a huge blessing! That was just miserable!
The other problem I've had this week is pretty intense lower back pain (lower than when we were dealing with the kidney scare.) Actually, sometimes it's hard to tell if it's my very most lower back, or my butt, that hurts. It's sort of in the tail bone area.
Last Saturday I took care of my godchildren (pictures coming) I thought perhaps lifting them and carrying them and playing horse with them etc. might have done something to my back. The pain actually started Sunday, but became worse as the week went on. Yesterday and last night it was intense and horrible. I didn't sleep again. I couldn't bend over. It hurt to walk down the hall or go to the bathroom. Thank God I was up here when all this started. It saved me a trip to the doc.
The trouble is a lot of the pain meds I can't take because they cause bleeding, and I'm allergic to morphine, which rules out many of the others. So, tonight we're trying another drug. It hasn't gotten rid of the pain, but it has knocked it down to a tolerable level.
For those that know Karen, I am happy to report she's doing fine this evening and everything went well for her too. But, you'll have to read her blog for her update. Grin!
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Kelly