#44 - The heart of the matter

Date Sent: Thu, Jun 25, 2009 at 11:28 AM

Earlier this month I had a check-up appointment with my doctor in Pittsburgh. It was scheduled for approx one month after the iv med change, because he wanted to see how I'm doing on the new drug. It had been sixteen months since my last right heart cath (which tells the exact blood pressure in the lungs). And even though I had echos done in between, those only estimate the pressure, so it was time for another right heart cath so the doc could have an exact number. The cath was scheduled for Tuesday morning, and then I'd see the doc in the afternoon and he'd discuss the results with me. So, Aaron and I drove out to Pittsburgh, hoping he would say that I don't need to do any more increases.

The morning of the procedure came, and I checked in, and was sent to a holding area where they started an iv, and got me ready for the procedure. It was supposed to begin at 11:30, so I wasn't allowed anything to eat after midnight or drink after 6 am (and of course I didn't wake up that early just for some apple juice). At 1:30 I was still waiting - and getting hungry. Finally they wheeled me back to the operating room and got started. I think I've had three or four of these done before (all when I was admitted in 2008), and while they're not pleasant, they've been nothing to write home about.

This one was different. Just about everything that could go wrong (except me bleeding out and dying), did go wrong. The local antiseptic wasn't strong enough. The injected numbing stuff wasn't placed where it needed to have been. The first attempt didn't work, so they had to pull out and start all over again. They were having such a hard time getting it in that they were pushing so hard on my neck that I literally couldn't breathe. They overshot by 15 cm and had to pull back. They must have touched the wrong part of the heart, because I suddenly thought my heart would beat right out of my chest, and my rhythm got all out of whack. ..... It was 45 minutes of sheer hell. Three separate times the doc who was doing the procedure asked if I had been sedated because I was unbelievably quiet and still. I hadn't been sedated, I was just pulling every reserve I could find to just survive it. It was ... intense. Generally 24 hours after the procedure, you're back to normal. It took me two weeks!

But finally they finished and I was wheeled back to the holding room. On the less than two minute ride I could hold back no longer, and finally started to cry. Within those two minutes I was drenched in sweat - even the gown and sheet covering me were dripping wet. I was so nauseous that all I could do was pray in all earnesty that I wouldn't puke. They had gone in through my jugular, and the force of vomiting would have reopened the new blood clot, and I could have bled to death. I was terrified. The nurse paged the doc who did the procedure, and he showed up "speed walking" and stuck around watching me until the nausea passed. Every nurse in the holding area kept walking past my cubicle to see if they needed to jump in and help. Finally God brought me through it and I started to feel better. I've since been told that those were symptoms of what my heart was doing wrong (I forget the specific medical name). But, praise God, He calmed my heart, and I didn't code.

Because everything had taken so long, I ended up missing my scheduled appointment with my specialist. But he was good enough to come to me instead. After the afternoon's ordeals, I was so relieved when he poked his head into my cubicle. It's amazing how if you have good rapport with your doctor, just his very presence can calm you. He brought with him the results of the cath. The blood pressure in my lungs are the same as when I was discharged in February of 2008 - just over 60. (For someone my age, anything above about 20 is considered Pulmonary Hypertension. When I was first diagnosed they were 98. But after being put on Flolan, when I was discharged I think they were 65.) He said that was what he expected. He said that they're never going to come down lower than that. [But God has promised me that they will return to normal - so I'm choosing to believe my God who I cannot see over my doctor who I can.]

He quickly moved on. He said, "Now these numbers. These are what's exciting!" And then he stopped and smiled at me, waiting for my response. I had absolutely no idea what those numbers meant. So finally he remembered that and continued. "You were in heart failure. With PH, what actually kills you is your heart, because it becomes so damaged that it can't function anymore. You were in heart failure!!" Again he paused, and again I was clueless. Finally he finished his thought: "YOUR HEART IS TOTALLY HEALTHY NORMAL! If I didn't know anything about you, and just looked at these numbers... Julia, your heart is perfect! Julia, this changes your prognosis. I have no idea when you're going to die. It's the heart that kills you, and your heart is fine!" And then I finally understood why he was beaming from ear to ear! PRAISE GOD - I'M HALFWAY HEALED!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! He said, "Julia, people don't come out of heart failure. The heart can get a bit better, but they don't just come out of heart failure!" And I thought "People aren't healed/cured of PH either, but that's gonna happen one day too!" ... So - I guess the hell of the right heart cath was worth it to hear that amazing news!

Do you remember me mentioning in a previous email about the x-ray that was taken recently, and my heart was almost normal size again? Apparently it's now finished shrinking. In February of 2008 it was 2.5 times the size it was supposed to be. In 16 months God has completely healed my heart (physically and spiritually).

Do you remember me mentioning in a previous email about the women who surrounded me at Tuesday Morning Bible Study the week before I was admitted for the medicine change, and how suddenly after that I could walk through the mall without wanting to pass out from oxygen deprivation? Aaron's convinced that my heart finished healing during that prayer. So, once again, thank you ladies for your prayers!

I'm supposed to do a couple more increases - to get me to 35ng. At that point I'll stop, and try it out, and let him know if I want to go to 40 or not. I think it won't be necessary, but we'll wait and see. Maybe at 40 I'll be able to run a marathon - just kidding. I'm currently at 31, and have had two extremely, insanely, unbelievably productive weeks while taking care of my kids all alone. I haven't been able to do the amount of work I've been able to do these past two weeks in YEARS! I keep taking "rest breaks" during the day - but they're more because they're now a habit, not because I think I'm gonna keel over from exhaustion.

Thank you for praying me this far! AND PRAISE GOD FOR BRINGING ME SO FAR SO (relatively) FAST!!!!! After all "The Lord will sustain him on his sickbed and restore him from his bed of illness." (Psalm 41:3) And He's doing just that!

An ecstatic,

Julia