Skip to main content

Where was Heather?

I think this past week I set a record for this blog. I don’t think I’ve ever gone so long without blogging – but to be honest, I felt like crap. And if I’m not even blogging, you know I’m not feeling well.

Last Tuesday I started to feel yucky. I was congested, felt like I had a sinus infection, sore throat and a cough. I was pretty sure it was a virus because I was already on an antibiotic.

Regular readers will remember I’ve had this rather embarrassing problem for the last year in that I’ve contracted some kind of skin infection. It seems isolated to my breasts, but as the sores heal, they bleed. And being that I’m an HPS’er, they really bleed. I’ve missed work over these things bleeding. It sometimes bleeds so badly I look like I’ve been in a horrible accident, or shot or something.

One of the doctors I saw in New York (more on that later) put me on an antibiotic for that. It has helped, but hasn’t cleared the infection.

At any rate, this was a pretty good antibiotic and everything coming out, just to be disgusting for grins, was clear. Why pay a copay and cab fare just to go in and have someone pat you on the head and tell you to drink plenty of fluids and rest?

So, I was just going to tough it out.

By Thursday I had been unable to sleep for two days thanks to my coughing. Even my neighbors could hear me. And the cough seemed to be kicking up the old asthma. I felt tightness in my chest and felt irritation every time I breathed out.

Every little thing made me very out of breath, like just walking to the bathroom.

Okay, I said, so much for the virus. I need help.

I called my doc but couldn’t get in for another 24 hours. I guess the heavy breathing on the phone wasn’t convincing enough. So, I went to urgent care.

Because I didn’t feel like my oxygen levels were low – just that I was working harder than normal to breathe – I opted for urgent care rather than the ER.

I spent about seven hours there and got sent home with Tussinex. This stuff is great for coughs – but it does make you very sleepy.

By this time I’d coughed so much that my stomach muscles were incredibly sore and I couldn’t cough up the junk in my lungs. My back just hurt. My joints were all hurting.

The cough medicine put me out for about 24 hours straight. In the meantime, however, I got very dehydrated. When I started to feel a bit better and tried to get up to fix some dinner etc. my blood pressure dropped to 90/56. Normally I’m trying to keep my blood pressure down, and I hadn’t even taken my blood pressure meds that day because I slept through my dosage time.

My back was killing me, especially where the kidneys are – so it was time to get tanked up on fluids.

Donna put me on germ patrol with instructions to stay away from people and to wear a mask if I went out. I pretty much spent the next few days in bed. I’ve got disability paperwork etc. to work on, but I couldn’t. Even working on the computer or talking on the phone was wearing me out and making me cough like crazy.

When you have HPS, getting a cough is even that much more scary.

I can just picture these foamy macrophages in my lungs getting angrier by the minute and calling for those fibrotic cells to rush in and “fix” the problem. I know that’s probably a simplistic look at it, but still, nothing going on in my lungs can really be good.

Today I finally was about to talk on the phone just a bit and do a little housework – I do mean a little.

I can’t believe a simple cold has screwed up my system so much.

Thank God I’m already on disability leave – I’m pretty sure I would have missed about five days of work over this latest little episode. Other people can just “suck it up” and go to work sick, but for an HPS’er, these things can become serious quickly and can’t be ignored like that.

It’s just so frustrating when you want to be getting things done and you can’t even when you try. But at least I didn’t have the added stress of worrying about work.

My family is on my case about my long-term plans, and I don’t know what they will be. I’m very worried about returning to traditional employment because of things just like this – it isn’t that you miss work every day, but between the NIH visits and the routine “little” HPS issues and even just a cold – it isn’t long before you’re missing way too much.

Comments

Popular posts from this blog

Ratner's Cheesecake

Here's another recipe from Toby! Thanks Toby......and I'll get the others posted soon! Ratner's Cheesecake and plain cookies Ratner's was a Jewish dairy restaurant in the lower East Side of Manhattan. This recipe, from my disintegrating, no longer in print Ratner's cookbook, is the closest I've ever gotten to reproducing the rich, heavy cheesecake my mother made when I was a kid. It's worth the time it takes to prepare and every last calorie. Dough Can be prepared in advance. Makes enough for two cakes. Can be frozen or used to make cookies – see recipe below. 1 cup sugar 1 teaspoon vanilla extract 1 cup shortening 1 teaspoon lemon extract 1 cup butter 2 eggs 3 cups sifted cake flour ½ teaspoon salt 2 cups all purpose flour 1 teaspoon baking powder 1. In a bowl, combine all ingredients with hands. Refrigerate 3 -4 hours, or preferably overnight. Filling (for

The next generation with Hermansky-Pudlak Syndrome

I'm so behind on posting about the trip to Puerto Rico. Since the episode of Mystery Diagnosis on Hermansky-Pudlak Syndrome ran right after we got home, it's been a little busy. These, however, are my favorite pictures from Puerto Rico. I know, not pretty senery etc - but these little guys and gals inspire me. They are the next generation of folks with HPS, and if we keep up the hard work, they will live better lives because of it. They motivate me.

Some good news about Pirfenidone

Below is a press release from Intermune, the company that makes Pirfenidone. They have essentially reviewed the various clinical trials going on, and decided that Pirfenidone is safe and well tolerated. That would pretty much go along with what we've observed in the HPS community as well. We have a few folks that have been on the drug since the late 90s and continue to do well. Of course, as a journalist, I do have to say consider the source - but at the same time, as someone in a Pirfenidone trial, it's good to know. Results of Comprehensive Safety Analysis of pirfenidone In IPF Patients Presented At European Respiratory Meeting - Analysis shows safety and tolerability of pirfenidone across four clinical trials - VIENNA, Sept. 14 /PRNewswire-FirstCall/ -- InterMune, Inc. (Nasdaq: ITMN ) today announced that the results of a comprehensive review of safety data from four clinical studies were presented at the 2009 European Respiratory Society Annual Congress in Vienna, Austria