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

#18 - Ode to Joy!

Date Sent: Sat, Jun 21, 2008 at 1:11 PM

Hey, it's Aaron.

So, we had a doctors appointment yesterday (Friday) at UPMC (the hospital in Pittsburgh that Julia was in back in February and March). Coming out here was our first time back since then. I had no idea how many emotions would come up with this visit. From the second that we drove up to the hospital I started remembering all the feelings/emotions I had. The fear, uncertainty and complexity of those days are greater than any I have ever known. The fast pace of the experience caused me to temporarily forget many of the details. Going back to the hospital helped me remember most of them. Seeing people again that truly cared for Julia was overwhelming. The job they did was nothing short of noble. I will always feel a debt of gratitude for all they did for my bride.

So back to the visit. We drove down late on Thursday as the appointment was in the morning. We saw Dr. Alvarez for close to a hour (he had originally only slotted about 30 min for us). I know that he has a ton of patience, but to have him see us and come over immediately to greet us was very comforting. The knowledge that he has on this disease is nothing short of amazing. We waited for him to finish up with the patient he was with (during which Julia did a six minute walk test). This test is to see how strong she is and how far she can walk, and how much oxygen she needs to do it. She walked 300 meters, a bit less then what the Doc had wanted, but in the general ball park. As I sat there in the room alone it took everything within me not to cry. I was truly overwhelmed at how far Julia had come. When she had arrived at this hospital in February she was intubated, totally sedated, and very, very close to dying. Now she was walking, talking and laughing. To me this was the best thing that could have ever happened. My bride, the one I care so much about, is slowly fighting her way back. It is in these times that we see the hand of God become so, so evident.

When the doctor came in he had a ton of things he wanted to know: medicine levels, current care, etc. We were very encouraged by everything that he said during the visit. One thing that made me happy (I know Julia is okay about it also - not thrilled - just okay) is that he wants to increase her meds. She is on 13 ng/kg/min now and he wants to have her be in the 20-30 ng/kg/min range. Based on his experience, this should improve her quality of daily life. He's planning to increase her slowly, but continually over the next several months. We are both at peace about this. We are also going to continue to have him as the lead doctor. He will be controlling the drugs that she is on due to the experience he has. We were also told that due to Julia doing so well that at this time we should meet with the transplant people, but NOT be listed. Do you hear that, NOT be listed! YEAH!!!! He gave us some more things that we could do, and sang his praise for how well Julia is doing.

We also had a appointment for Julia to have a echo cardiogram done (an ultrasound of the heart). Julia went into this one alone as the room didn't have enough space for all of us in there. She came out with this look of pure joy. A look that I had not seen since our first born was born, a look that I had also seen when we were married. A look that is to me one of the many reasons why I chose to marry her. She said guess what (her tears started to flow) her heart had shrunk. The right side should be smaller than the left side. The picture we were shown of hers from February showed the right side to be 4 times the size of the left. Currently the right side is barely bigger than the left! We simply sat and cried for a long time. To hear this news is like hearing you have been pardoned from death row. It is nothing short of a miracle.

We spent the rest of the day on a high that we had not had in a very, very long time. We continue to be humbled and overwhelmed at how far God has brought us. Please continue to pray with us for a full and complete healing.

Regards,
Aaron (the very happy husband!)
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