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.

Friday, July 10, 2009

#45 - ALL THINGS ... not just SOME

Date Sent: Fri, Jul 10, 2009 at 9:38 PM

And we know that ALL THINGS work together for GOOD to those who love God, to those who are called according to His purpose. Romans 8:28.

As I've slowly been increased on Remodulin (the iv drug I was switched to back in May), I moved from using one particular strength vial of the medicine, to a stronger vial. This was done so that as the dosage was increased, the cassette with mixed medicine would still last 48 hours. So, as I'm increased, sometimes the amount of actual medicine that's mixed with saline increases, and sometimes just the speed of the medicine being pumped into me changes. At some point a month or so ago it was necessary for me to start using a stronger concentration when mixing. When that happened, there was still one unopened vial of the smaller strength left. I never got around to throwing it away.

On this past Tuesday night when it was time to mix a new cassette, it was also necessary to open a new vial of Remodulin (one vial usually lasts just over a week). Aaron had forgotten that there were two different types in the box of extra supplies, and accidentally grabbed the wrong one. Tuesday night was also when I was supposed to increase from a dosage of 33 ng/kilo/min to 34 ng/kilo/min. So, I expected to feel "weird" for a day or so. But this time, I wasn't feeling more normal by Thursday, and commented to Aaron that I was still having a hard time breathing when I exerted myself (like going up stairs). Usually I notice that I have a harder time breathing for a day or so as my body adjusts, but this time around, it wasn't back to normal by day two.

Thursday night was my turn to mix, and as I pulled the opened vial of Remodulin out of the fridge, I suddenly realized WHY the last two days it had been so much more difficult for me to breathe. I saw that the paper on the vial was the wrong color. I immediately realized that I didn't have enough medicine - by a LONG SHOT! Aaron and I sat around the table in total shock and disbelief. After a couple minutes (around 11:30 pm) our heads stopped spinning, and we phoned the 24-hour number we were given in case we have any questions/problems. This definitely qualified! The man who answered listened to my explanation, and then put me on hold while he phoned the on-call pharmacist (who "just so happened" to be the one that always takes care of me). Her response was "that's too big of a decrease for me to be the one to decide what to do. Phone your doctor's office. If you can't reach them, then go to the Emergency Room. Oh, and you were at 33 ng, and ARE NOW AT FOURTEEN." After hanging up with them, I took a long, deep breath.

Before I told Aaron what they said, I asked him to compare how I was acting / how productive / how out-of-breath I've been the past two days with how I was when I was first discharged from the hospital having been switched from Flolan to Remodulin. He thought and thought. Finally he said that I'm stronger now. I have more stamina, and more physical energy. I'm definitely VERY out-of-breath, but it seems like I'm stronger than I was then. I smiled through my nervous tears because I agreed, but hadn't wanted to bias his response. I then reminded him that when I was discharged I was at TWENTY ng, and that the Pharmacist said that I'm currently at FOURTEEN. It was so late, and I had already spent two days at this dosage, so I called the doctor's personal nurse and left a voicemail that she would get first thing in the morning, and then mixed the new cassette at the same strength I was currently on. And then we cried. And prayed. And went to bed.

First thing this morning I received a phone call from my assigned nurse at the Pharmacy who was quite concerned for me. She asked me LOTS of questions: Have I been lightheaded? No. Have I been dizzy? No. Have I passed out? No. Have I been waking up at night because I can't breathe? No. Have I been unable to sleep at all because I can't breathe? No. Has it been difficult to wake me up in the morning because my oxygen saturation levels are too low? No. .... I have less motivation to get projects done around the house, but they've still been done. I've been taking more rest breaks. When I get to the top of the stairs I need to stand there and catch my breath before I continue down the hall. But that's it. Don't get me wrong - not being able to catch my breath is horrible. But I am functioning! The nurse was shocked, and a bit relieved that I'm not dying over here since I was suddenly getting LESS THAN HALF of the strength I was.

Later this morning my doctor's nurse (who I left the message for) phoned to make sure she had all the details before she asked the doctor what he wanted to do. She asked me similar questions. This afternoon she phoned me back with his instructions. Apparently his first response (after hearing how I am and am not doing) was for me to just switch back to 33 ng in one fell swoop. The nurse asked him if that is REALLY what he wanted. His response was "well, it took her two days to realize what was wrong, so it must not have been bad enough for her to be concerned. So, she'll be okay. She's a tough cookie, been through lots of these increases before. She'll be fine." The nurse advocated for me and asked if I couldn't at least two it in two steps so it's a little more tolerable. He agreed. Tonight (Friday) I'm supposed to increase from 14 to 24 ng. And then Sunday from 24 to 34 ng! YIKES!!! It's important to note that I've NEVER done an increase of MORE THAN ONE NG - AND THERE'S NEVER BEEN LESS THAN FOUR DAYS BETWEEN. I'm about to increase TEN ng, and then after 48 hours increase another TEN!

In God's providence, today's Friday, and Aaron will be here all weekend. I'll be doing the first increase soon after I finish sending this email, and then I plan to spend the next day (or two if necessary) in bed. And then after Sunday night's increase, two friends are opening their houses to the boys for Monday and Tuesday while Aaron's at work so I can recuperate without the noise/stress of young kids who don't understand why Mommy needs it to be quiet. Please pray for me especially hard during these next several days while my body adjusts. The side effects of a "normal" increase are unpleasant. I'm not looking forward to this.

But we're assured that "ALL THINGS (NOT JUST SOME) work together for GOOD to those who love God, to those who are called according to His purpose". I have no idea why this happened. I mean, I KNOW WHY - it's because I never threw out the old vial. But, I don't know what "good" will come from this. All I can see right now is upcoming uncomfortableness. But my God is bigger than that! I praise Him for His faithfulness over these past several days. I praise Him that I haven't passed out - or worse! I praise Him that I've been able to function (although much slower). And I praise Him for the currently-unseen way that this will work together for GOOD in my life.

Thank you for your prayers as I transition back!

~ Julia

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