Welcome to A Million Miracles.

In February of 2008 I was diagnosed with an incurable, progressive and terminal condition called Idiopathic Primary Pulmonary Hypertension (PH). In retrospect, we can trace this illness back to at least January of 2004, but you can have it for several years before you notice any symptoms. My diagnosis came after I was hospitalized for what ended up being almost three weeks - spent consecutively in three different hospitals - two of them being in ICU units. Over the past year we have been sending email updates to family and friends concerning my medical/physical journey as well as lessons I'm learning as a result.

These are those emails. There's no rhyme or reason as to when I send out another email update. It just happens when "the Spirit moves." But whenever I write and send one, I will also post it on this blog.

Sunday, February 1, 2009

#34 - Weight Woes

Date Sent: Sat, Jan 17, 2009 at 9:16 AM

At 32 weeks pregnant I had only gained 5 pounds, between week 32 and 33 (when I was hospitalized), I had gained an additional 7 pounds (of swelling)! During the several days in the hospital before Harrison was born, I gained LOTS more water weight (because I was in right-side heart failure). At 34 weeks Harrison was born - and he weighed 5 pounds even. So, in essence (if you take into consideration the extra blood flow, placenta, amniotic fluid, etc.) I had LOST weight while I was pregnant. A week in the hospital of eating NOTHING, and two weeks of barely eating anything resulted in me being 20 pounds lighter when I was discharged than before I got pregnant. That wasn't the ideal way to loose weight, but I was SO EXCITED to look down at my legs or at my face and see them thinner! In the eleven months since I was discharged, I have gained the entire 20 pounds back. I know that sounds like so much weight to put on so quickly, but when you consider the fact that the only "exercise" I got was walking up the steps in my house a couple times a day.... I just hadn't cut back my food intake enough to match my lack of physical activity.

Most winters (Feb/March), Aaron joins his family to go skiing in Utah for a week. This year he's taking Alex with him, while I stay home with Harrison. I can't handle the elevation of Park City (7000 feet on Main Street). Actually, looking back, that's how we know that I've had PH for at least 5 years, because 6 years ago when I accompanied his family I did just fine. But 5 years ago when I went I struggled, and 3 years ago I had horrible altitude sickness the whole week - I could barely walk around the hotel room! So, anyway, Aaron's decided to get his "skiing muscles" ready for the trip (since this past year he's focused on me rather than exercise). So, last week he started on the treadmill (walking backwards uphill on it does wonders for those muscles!). I decided to start too.

One of the updates I sent last week talked about my experience last Friday, when I finally "got back in the saddle again." I ended up going about 10 minutes at a speed of 1.3 mph (which is quite slow). Well, every day since then I've gotten on again, and as I get stronger I've been going slightly faster, and slightly longer. Yesterday I went 20 minutes at 2.2 mph (with oxygen on) - and I wasn't tired or winded afterward! That meant that I ended up walking .75 miles. That's still not far, but a HUGE improvement from a year ago!! Sometimes when people increase their energy output they also increase their food consumption. This past week I've been careful that I didn't do that. I felt GREAT! So much more energy!

Then yesterday came ... and it hit me ... I felt HORRIBLE! It felt like I had "increased" the strength of the iv meds. I was having all the side effects again - I was exhausted, my bones hurt, had a headache that wouldn't go away, I was nauseous.... So, I got on the scale... As of this morning, I've lost 4.5 pounds in one week. IMPRESSIVE, eh? I guess it was too much too fast. My body is getting slightly more medicine since I have slightly less body mass. It's been so long since I've gone through an increase, that I forgot how unpleasant they were. I never thought I'd lose THAT much THAT fast. Oops! I guess I have to slow down. When people lose weight, they want it to come off as quickly as possible. Apparently I can't do that. Sometimes it feels like I just can't win. Hopefully if I can wait a few days for these side effects to wear off, I can get started again. Guess it'll be a longer process than I hoped to lose the 20 pounds again. Hopefully I'll be able to tolerate that much extra medicine. Otherwise I'll have to have a chat or two with the doctor about what to do.

This morning when I woke up I felt better - though not quite myself. The first 24 hours after an increase were always the most difficult - guess I'm beyond that now. I think I'll take today easy, and then start again tomorrow - more slowly.

~ Julia

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