#17 - In this for the long haul

Date Sent: Thu, Jun 12, 2008 at 10:04 PM

Well, I have been very negligent in updating you on how I've been doing recently. I have been busy trying just to live life. I've thought about sending an email countless times. But it kept getting squeezed out of the day - either by tiredness or business. So, I am finally creating the time to sit here and type.

My iv medicine (Flolan) was increased on May 19th. The side effects were what I expected, just not as intense as I was anticipating. The last time I had an increase I was still in the hospital, so I wasn't sure how intense they would be since I was much sicker at the time. This time around they were intense for a few hours, and within a day or two I was functioning again. I attribute the "ease" of the increase to the many prayers you lifted up on my behalf. Thank you so much!

I have gotten to know several other people in the area with pulmonary hypertension (PH) also. One is my age (also with two kids) and is also on Flolan. Another is a bit older than I am and has gotten to the point that she needs to be starting Flolan soon - very soon! I could say that misery loves company, but I'm not miserable (not anymore, anyway - YEAH!). It is an encouragement to all of us that we know we're not in this alone. PH is so rare that we're just about it for people in this area who have progressed to the point that we need Flolan. In addition to the monthly support group meetings, we've spent time together, and email/phone each other frequently to see how the others are doing.

Aaron and I will be returning to Pittsburgh next week for an appointment on June 20th with Dr. Alvarez (the one who saved my life out there in the hospital). He wants to keep seeing me periodically so that if/when I get to the point I need lung and/or heart transplants we will have maintained a relationship. The hospital he's at - UPMC Presbyterian - also does such transplants. Aaron and I will be going out there and spending two nights. The first so that we can be there in time for an appointment first thing in the morning, and the next night so that we can get a chance to slow down and just spend time together. My mother will be here with the boys - God bless her for suggesting the second day. I've finally bonded with Harrison - who is almost 4 months old. It took a long time, but I now feel a connection with him. So, I'm going to be missing both of my sons while we're gone.

Lately my cousin, Kim has been here at the house during the day. Before I got sick I used to help my mother do a lot of computer work. I don't have the stamina to add one more thing to my plate, so Kim is helping her during the summer months (she's a teacher and has the summer off). So, this is working out to be a good stepping stone for me. There's other people in the house while I take care of the boys, so I'm not alone if I need help. But then in the evenings mother and Aaron are both here so I can rest a bit. I'm holding my own during the day, but by the time Alex is put to bed at night I'm pretty much exhausted. Mother's hoping to spend two weeks in July at her house, so hopefully I'll get a little stronger by then. But as long as Aaron won't be traveling for work during those weeks, I think I'll be okay. A few weeks ago I didn't think I would be. So, I am still gaining strength/stamina, even if it is slowly.

I've gotten used to this low-sodium diet Can't say that I'm excited about it yet, but I never thought I'd get used to it. I'm experimenting with new ways of cooking, and new recipes/ingredients. Next week I'll be experimenting with how to make a low sodium salsa. Stacy (one of my new PH friends) is working on low-sodium ketchup. I found out that one of my aunts makes her own ketchup, so that's a staring point for her. Maybe we'll end up trading later on (if we create something we like) - who knows?

I've noticed that when I don't want to go to church (usually because I'm extra tired), that's the time when I really need to make sure I get there - something special will happen there. One such Sunday recently God revealed to me one more reason why I have PH, and something that needs to happen (in someone else's life) before He chooses to heal me. I sat through part of the service crying and crying (it's a good thing ladies carry tissues in their purses!) as I had to come to terms with what He said. I don't know the time frame that God has in mind for this "event" to occur, but I assume that I'm going to be in this for the long haul. The nature of this "event" means that it would be selfish of me to ask God to speed things up and heal me right now. Instead, I need to discover how He wishes to use me in that situation. I could use some prayer as I "let go and let Him." A thought that Aaron mentioned to me that day is that even after the cross and Jesus' resurrection, he still had scars. Wonder what "scars" (ie. physical reminders of what's happened in my life) I might have after I am healed.

Last night Aaron and I spent time together at a local restaurant. During our discussion I mentioned to him that I miss socializing with people. This is another sign that I'm getting better. (Just because God won't heal me right now doesn't mean that He won't keep moving me in that direction.) When I was in college I loved being around people, then as I got sicker I had less energy for such things. Now my desire is returning. I do see people several times a week at church (Sunday morning/evening and Wednesday evenings). And we've started having people over to grill or whatever. I'm finally beginning to enjoy being around people again. This is very exciting to me.

Well, I hope you're getting a chance to get outside and enjoy summer now that it's arrived! The heat is too much for me to handle - apparently heat also makes it hard for me to breathe. I stay inside most of the time (thank you, God, for air conditioning), but I sometimes go out for a little bit with Alex and Aaron in the evening after it begins to cool down. I am grateful that the seemingly-constant rain of the past two months has ended. At least I can sometimes take my oxygen off during the day. It's nice to get a break from wearing it. I hope you have a wonderful weekend! God bless.

~ Julia Feitner