Disclaimer – to those who don’t live this stuff every day, much of this information will fall into the “too much information” or TMI category. If that bugs you, skip this one.
I’ve been doing a lousy job of updating my health stuff on the blog and thus need to do some catching up.
As regulars know, I got a nasty sinus infection over Christmas, felt good at New Years, and then got another horrible cough/cold right after New Years. I’m not sure if they were related.
The last two days are the first days since the first of the year that I haven’t been coughing a lot. I’m still coughing, but only every now and then. My throat also stopped hurting, and I haven’t had a fever in four days.
I had been running an on and off low-grade fever.
The past two days I’ve had profound fatigue – the kind where you fall asleep at your computer! I was almost relieved when my period started and I had something to contribute it to that will go away in a few days.
Since I had the Murina IUD put in, my HPS female issues have been a zillion times better! I should star in a commercial for the IUD. I’m so grateful to Dr. Merideth for putting up with my fear and anxiety about the whole thing and for being so gracious and understanding. Had she not, I probably wouldn’t have gone through with it and thus would still be pretty much in bed for several days a month.
After about a year with the IUD, my periods even stopped for a while. Now I have a very mild one every two months or so – nothing compared to the old ones. The funny thing is even though the bleeding is much improved; I still get that profound fatigue, headaches, and cramps. That’s been me this week. I’m definitely not complaining as it’s such an improvement!
Earlier this month I went to see a new pulmonogist for the first time. Now that I’m not going to NIH every four months, it seemed prudent to start to build a relationship with a doc here.
Let’s say the jury is out. I’m not sure if we’re a good fit or not. I’m not sure if it even matters as if I started to nose dive on my PFTs, I’d be in a much bigger hurry to move back east. No matter what, since there is no lung transplant program in Kansas City, this is not where I’m going to live when I really need a lot of care from a pulmonogist. As long as he’ll order tests, I guess it doesn’t matter if we’re chummy.
Still, I was a bit unsettled.
I don’t expect any doctor I see to know about HPS. When they’ve heard of it I usually fall over from shock. I do, however, like to see a little curiosity about it. The first thing this doc. said was, “Oh, I’ve heard of that, but I’ve never read up on it as I’ve never had an HPS patient.” I was holding back not wanting to sour a relationship with a new doc – but in my head I’m thinking, gee, lucky for me I already have a diagnosis then. How do you know if you’ve ever had an HPS patient if you’ve never read up on it? HPS’ers are constantly misdiagnosed as having idiopathic pulmonary fibrosis or asthma. But, I didn’t get into it. He’s read up on it now! I gave him a copy of GeneReview, the ATS HPS handout, and a brochure.
We did PFTs and my numbers were down. Given the cold/cough, that isn’t shocking. My FVC was 77 and my DLCO was 60 – at NIH last May my FVC was 82 and my DLCO was 61, so that’s not too far off really. I’m not going to panic just yet, although I’m never happy when numbers fall. I’ll be very glad to get the next set done and see what happens then.
I’ve been doing a lousy job of updating my health stuff on the blog and thus need to do some catching up.
As regulars know, I got a nasty sinus infection over Christmas, felt good at New Years, and then got another horrible cough/cold right after New Years. I’m not sure if they were related.
The last two days are the first days since the first of the year that I haven’t been coughing a lot. I’m still coughing, but only every now and then. My throat also stopped hurting, and I haven’t had a fever in four days.
I had been running an on and off low-grade fever.
The past two days I’ve had profound fatigue – the kind where you fall asleep at your computer! I was almost relieved when my period started and I had something to contribute it to that will go away in a few days.
Since I had the Murina IUD put in, my HPS female issues have been a zillion times better! I should star in a commercial for the IUD. I’m so grateful to Dr. Merideth for putting up with my fear and anxiety about the whole thing and for being so gracious and understanding. Had she not, I probably wouldn’t have gone through with it and thus would still be pretty much in bed for several days a month.
After about a year with the IUD, my periods even stopped for a while. Now I have a very mild one every two months or so – nothing compared to the old ones. The funny thing is even though the bleeding is much improved; I still get that profound fatigue, headaches, and cramps. That’s been me this week. I’m definitely not complaining as it’s such an improvement!
Earlier this month I went to see a new pulmonogist for the first time. Now that I’m not going to NIH every four months, it seemed prudent to start to build a relationship with a doc here.
Let’s say the jury is out. I’m not sure if we’re a good fit or not. I’m not sure if it even matters as if I started to nose dive on my PFTs, I’d be in a much bigger hurry to move back east. No matter what, since there is no lung transplant program in Kansas City, this is not where I’m going to live when I really need a lot of care from a pulmonogist. As long as he’ll order tests, I guess it doesn’t matter if we’re chummy.
Still, I was a bit unsettled.
I don’t expect any doctor I see to know about HPS. When they’ve heard of it I usually fall over from shock. I do, however, like to see a little curiosity about it. The first thing this doc. said was, “Oh, I’ve heard of that, but I’ve never read up on it as I’ve never had an HPS patient.” I was holding back not wanting to sour a relationship with a new doc – but in my head I’m thinking, gee, lucky for me I already have a diagnosis then. How do you know if you’ve ever had an HPS patient if you’ve never read up on it? HPS’ers are constantly misdiagnosed as having idiopathic pulmonary fibrosis or asthma. But, I didn’t get into it. He’s read up on it now! I gave him a copy of GeneReview, the ATS HPS handout, and a brochure.
We did PFTs and my numbers were down. Given the cold/cough, that isn’t shocking. My FVC was 77 and my DLCO was 60 – at NIH last May my FVC was 82 and my DLCO was 61, so that’s not too far off really. I’m not going to panic just yet, although I’m never happy when numbers fall. I’ll be very glad to get the next set done and see what happens then.
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