It was eight months ago yesterday that I was hospitalized. Eight months ago today that the doctors began to realize that what was "wrong" was much bigger than just a pregnancy complication. Eight months ago this coming Saturday that I was diagnosed with pulmonary hypertension and told I might not live to see our baby born. Eight months ago this coming Sunday that Harrison was born via an emergency c-section in an ICU room because they could no longer stabilize me. Eight months ago this coming Monday that I was started on Flolan - the iv drug that keeps me alive. And it was TODAY that my doctor in Pittsburgh phoned to tell me to DECREASE the strength of that same iv drug.
In my last email I admitted that I was struggling. I wasn't struggling to hope, I wasn't struggling to believe that God would keep His promise to heal me. I was struggling to make it through the day physically. I just didn't feel good, and didn't have the energy to do even some of the basics like take a shower. I sent that email out late on Wednesday night, and by Thursday morning my spirits felt lifted. All the prayers that were being lifted up on my behalf made the biggest difference (THANK YOU!) - but I was still tired. I waited almost a week for my sinus infection to start to get better, and then phoned the doctor's office yesterday to talk with them. The nurse (who I know, and is absolutely excellent!) said that she knows what she thinks, but will talk with him, and phone me "tomorrow" (today). I was so incredibly nervous to hear what he said - there were several possibilities of what he could say, and quite frankly, I wasn't 100% excited to hear any of them (even possible "good news" made me nervous).Well, they returned my phone call a few minutes ago, and said that once again it sounds like too much medicine. They not only want me to stop doing any increases, they think I've passed the threshold and I have TOO MUCH! So, tonight before I go to bed I'm supposed to DECREASE (just a little!). I'm currently at 21 ng. I'm supposed to go back to 20 ng. (If you remember, when I left the hospital, I was at 11.5 ng). Over the phone she reminded me that the doctor wanted me to go to 30 ng, but apparently my body doesn't want that much. This is NOT a sign that the doctor doesn't know what he's doing, it's a reminder that God has different plans for me. I am not the average PH patient, it's a reminder to me of His promise that this will END. The doctor has NOT put me on a "decrease schedule." I'm supposed to go back to 20 and see what happens. Just before going up to 21, I had two REALLY GREAT weeks (energy, stamina, strength, emotions, etc.). I'm so happy to know that MAYBE that will be my experience a while longer. It may be God's plan for me to increase again down the road - I'll have to accept that if that time comes, but for TODAY ... this is the BEST news I've heard in a LONG time!
I am VERY nervous about the decrease, though. I have never done one, and don't know exactly what to expect. Every time I would increase I had a day or two of feeling "off." The doctor couldn't tell me if that will happen when I decrease too - he's never had anyone like me. **smile** I have a lot of things scheduled for the rest of this week and next. So, for right now, they're all being put on hold. If I show up, I show up - if I don't, I don't. If it takes my body a while to get used to this change, then so be it. I am just so INSANELY EXCITED that I'm going to DECREASE!
Do you remember the mustard seed necklace that I wear (mentioned it in an earlier email)? When I just looked in the mirror, I was reminded again that Jesus said, "I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, 'Move from here to there' and it will move. Nothing will be impossible for you" (Matthew 17:20). Our prayers (yours and mine) ...our faith (yours and mine) in the promise God gave me just before I was told that I had a terminal illness - that this will END ... and the love and power of our amazing God ... ... ... ... IT'S MOVED A MOUNTAIN - my Everest! The mountain's still there, but MAYBE I've reached the summit. It's time to enjoy some beauty before I begin the arduous climb back down.
~ Julia
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