#19 - Adjustments

Date Sent: Wed, Jul 23, 2008 at 3:28 PM

Well, a lot has happened once again since my (or rather, Aaron's) last update. As I sit at the computer to type I am holding my active five month old. He's now chewing his fingers and squirming up a storm. It won't be long before he starts to creep (attempted crawling) - he's already started jarred baby food! The pediatrician expects him to hit a growth spurt soon and begin to catch up with his age mates size-wise (remember, he was 6 weeks early). He's already caught up developmentally. There is still NO evidence of brain damage - a HUGE miracle since I had so much severe oxygen deprivation for such a long time! PRAISE GOD!

My mother has returned to Wheeling (four hours from our house). Today is Wednesday and she left here this past Saturday morning. We're doing a two week trial to see if I'm capable of staying afloat with the two kids without her being here all the time. She'll return for probably a week the beginning of August. We're expecting at that point to be ready for her to officially "move out." If we can figure out how to survive as a family/household without her here, then maybe this will be the beginning of a new stage in my illness! She has assured us that if something comes up (I get worse again, or Aaron has to travel for work, or something like that) then she'll come back to help out. She's already put most of her life on hold for the past 5 1/2 months. Aaron and I are praying that we'll be able to do this. The evening before she left we all went out to eat a "thanksgiving dinner" at a local steak house. We were thankful that I'm still around, that Harrison is "normal," that she was able to drop everything and come help us out for these past 5+ months, and that I'm still improving.

Though it seems like this is lots of extra work for me to take on (all the cooking, laundry, cleaning up, baby duty, the cleaning I'm capable of, etc.), it means lots extra for Aaron too. When he gets home from work I'm pretty tired, so he's having to work full time during the day and full time at home. He's been the greatest - getting up with Harrison at night just as much as I do, helping with cleaning, laundry, giving Alex special "Daddy time," etc.! But his household responsibilities are going to increase again this coming weekend when I increase my iv medicine dosage again. I know that we're a family unit, and that he is so loving that he WANTS to help in every way he can (it's kinda like it's "our" illness, not just "my" illness). But everyone needs downtime, and I'm nervous that he's not going to get enough and get burned out. Please lift him up in your prayers - he needs some supernatural stamina sent down from God, especially in these next few weeks while we figure out new ways to make life and our family "work."

Dr. Alvarez (the doctor with whom we had the appointment in Pittsburgh) wants to increase the dosage of my continual iv. He actually wants to more than double it. Hopefully this will help my heart continue to heal and help improve my quality of daily life. The plan is that I will increase it once a week through the end of October. Oh my ... I'm tired just thinking about it. It seems like an insurmountable hurdle. I've decided to do the increases on Friday night and then go straight to bed. This way I can sleep through the worst of the side effects, and Aaron will be here for the weekend to take over the kids. I'm not good for much of anything for at least 36 hours after an increase. We've done this twice so far. The second time the bad side effects didn't seem to lessen at all the whole next week! So, I decided not to increase it this past Friday (so now I'll have to push back my "finish date" for these increases). I didn't want my first week trying to be a mom ALONE while Aaron worked during the day to seem impossible to me. We're figuring out some new ways to do things to make life functional (with me still being limited in my capabilities and having two little ones to care for). I will be increasing again this coming Friday, though.

I take viagara (yeah, I DID SAY viagara!) three times a day - which works by dilating blood vessels - it opens the vessels in my lungs to make breathing easier. I guess the worst side effect I have is that since I've been increasing the iv medicine dosage, when I take the viagara I have an hour or two of feeling horrible. It IS doing its job and helping me breathe better, but the problem is that it opens all the blood vessels in my body (not just my lungs), so I get extremely red in the face, an intense headache, feel my heart beating faster, and am very irritable because I just don't feel so good. I'm nervous about next week - being alone here while Aaron's working through the day while I'm experiencing all the side effects and trying to "ignore" them so Alex isn't as negatively affected by all of this. Apparently I haven't been doing a good enough job hiding how I'm feeling. Alex has been stuttering off and on for several weeks now, and we have been trying to figure out why. We've had several theories so far, but they've all been proven wrong. I've now figured it out (I think). It happens when Alex is concerned about me - usually when I'm not feeling so well. Sometimes all it takes for Alex to stutter is Aaron asking how I'm feeling. I feel really guilty that Alex feels this stressed about his mommy being sick. I need to figure out a way to help him work through his fears while I make a more concerted effort to hide reality right now - it's just hard when my face is beat red........

I've been asked lots of questions over these past few weeks about what actually happened to me. I'm sure it was difficult to piece everything together correctly from the bits and pieces people have read in emails and heard from others. So, I'm going to work on another email telling "our story" up to this point - at least the highlights. Hopefully I'll get it done in the next week or so.

In the meantime, here's a bit of statistical mumbo-jumbo - - - I have Idiopathic Primary Pulmonary Arterial Hypertension. They call the general disease PH for short, but technically I have IPPH. Idiopathic means that the doctors can't figure out any reason that I have it - I don't fit into any category. There are lots of things that can cause PH - taking diet pills, using cocaine, having AIDS, having sleep apnea, or COPD (to name a few). None of those are true of me, so I am idiopathic. I am "primary" because I have no other medical problems (sleep apnea, diabetes, congenital heart problems, etc.). From the literature provided to me by my specialists, somewhere between 30-50 people out of a million have PH. It is estimated that 1 person out of one million is like me - Idiopathic and Primary. So, statistically, this means that MAYBE 300 other people in the WHOLE USA also have IPPH. It is possible to be born with PH, and it is possible not to develop it until you're retired. The life expectancy for an American is 78.1 years. So, divide the number of people guessed to have IPPH by the age they could be when diagnosed, and there are potentially 2 other people in the whole country who were diagnosed with IPPH at my age. Or looking at it another way - - possibly 300 people in all of America have IPPH, Split that by male-female ratio, and only 200 of them are women (of all ages). Childbearing age for a woman is considered 15-44 years old. That further decreases the number of people who could possibly get pregnant with IPPH. Once diagnosed, you're basically prohibited from having children ever, because it's so dangerous. The statistics for the mother OR baby (not both) surviving a pregnancy with PH is only about 50%. The chances of me having IPPH, being diagnosed DURING pregnancy, and SURVIVING not ONLY ONE, BUT TWO PREGNANCIES.... I'm a statistical anomaly - a walking miracle - so are both of our boys. (... and some people say miracles don't happen!)

According to the doctors, I'm "improving" (I prefer the phrase "being healed"). I now probably have similar strength/stamina to what I had last spring/summer (just before I got pregnant). I've had this disease for AT LEAST four years (that's when I first saw symptoms, but you can have this for several years without any symptoms). So, I'm not healed yet. My body has a VERY long way to go! My heart is beginning to heal (as told in my last email) - PRAISE GOD!!! But my lungs haven't yet, and they're where the illness is actually located. If my lungs were healing then the doctor would be DECREASING the medicine, not telling me to more than double its strength. God is doing amazing things in our lives and my body. But He has LOTS more to do! I can't wait to see what the next bend in the road brings......

~ Julia