Friday, April 13, 2012

Major Changes

In March, I got the flu. April 1st, I went to the ER at Stanford and ended up in the ICU, fighting to live. I have been listed for lungs and am at the top of the list for my size and blood type.

So basically we're now in a holding pattern, waiting for that perfect set of lungs. Waiting for that call. Waiting, waiting, waiting. I'm feeling better today, first day that I feel really in control of myself for a few weeks. The plan is to just keep me here, in the hospital, until the call. Taking a lot of walks, eating all I can, drinking supplements, and getting as strong as possible so I can have as much as possible to get through the surgery. IV antibiotics will end in the next two days or so, as the infections are about as clear as they'll ever get... not much more that can be done on that front since my lungs are so shot to hell.

But they keep saying that as far as they're concerned, I'm the optimal candidate. In my CF doctor's words yesterday, "The fact that you pulled through a near death experience, are regaining strength, and are up and walking makes you the ideal candidate to get lungs now". Of course it is unbelievably scary to hear "near death experience", but that is about where I was a few days ago.

I really don't remember much from the 2nd to the 7th. Brief flashes of panic. Vomiting the g-tube. Explosive nose bleed from the high pressure nose canula. The unbelievable discomfort of the n-gtube... being commanded to swallow over and over as the placed and replaced it. Screaming about panic attacks. Wanting to just be knocked out. Fighting, fighting, fighting. Not being able to find the control center in my brain. Feeling lost in my own mind and body. Reciting to myself over and over my name, where I was, and who was in the room... it felt like if I didn't I'd forget it. Bi-pap that made me feel like I couldn't breathe at all... that air was stuck in me and would never leave. Having no voice, being unable to communicate, and not being able to get relief. Feeling like my heart was trying to climb out of my body.

But now I'm back in me... I think. Sometimes I still get a little lost in here. Not sure what is going on. Wanting to just know what the next week, day, hour will bring. Wanting relief from the constant poking and prodding and mask and sounds and beeps and tubes and wires and aches. Knowing that will only come with new lungs. That there is still another mountain to climb, at least. And there may be more after that. Wishing I knew how many there were going to be so that I could get in a good place mentally for it, but knowing that is impossible. That bugs me a lot. I like to know what is ahead. But we don't. Holding on to God. Talking to friends and family who are on longer here. Prayer. Hope. Faith. Love.

I am here. I am ready. I am fighting. If the call comes today, Friday the 13th, which already holds special magnificence as I was married on one. Tomorrow is my husband's birthday. A fitting gift would be life for me. The 27th of April is another important day in my life... 25 years ago an emergency appendectomy when I was four. My parent's anniversary. And my beloved and much missed grandfather's birthday. Maybe he'll pull some strings and send me a gift of lungs. Save his "tweetums".

In the words of my Eva, "Love. Always Love".

Thursday, February 2, 2012

Testing is Done and the Verdict is in!

So, testing is all done! Well, except for a pesky 24 hour pee collection, but I'll do that next week.

So, the verdict is that it is still "too early" but that I will be closely monitored. I'll be going to the transplant clinic every 3 months, as well as going to CF clinic even more often, so they will be able to list me as soon as I need it without issue. Since most of the tests that I did this week are good for at least a year, transplant clinic will be far less intense than the last 4 days.

A few things that were learned:

- My lung function is back to where it was before my massive infection at the end of the last year. While it took a very long time to get back and when I had the infection, I was at the lowest lung function of my life, this helps prove that I still have some elasticity to rebound.

- My tolerance to activity has also improved from when I was so sick in December. My 6-minute walk test, which I failed pretty hard back then showed that as long as I don't push myself, I do not need oxygen when walking around.

- The last few echo-cardiograms (ultrasound of the heart) showed that I have elevated pressures on the right side of my heart, which is an indication of my lungs really starting to fail, putting damaging stress on my lungs. However, today's cardiac cath (where they thread a probe from my neck into the arteries of my heart) showed that these pressures are actually much lower.

- My bones, which were right on the line of osteoporosis and osteopenia (pre-osteoporosis) have improved some, and now I am back to only osteopenia.

- My kidneys have stones in them. I have had a few kidney stones before, so it doesn't surprise me that there are some sitting there, but makes me feel like I have a ticking time bomb in there.

Overall, very good news. Though it is still "too early" now, another massive infection could put me there, very quickly, so it is nice to know that as of right now, I'm basically ready to be listed without any additional tests or assessments.

Sunday, January 29, 2012

Hello Long Neglected Blog, Big Changes on the Horizon

I know it has been forever since I have posted. I'm trying to change that. Especially as my life is in a major transition now.

As has been on the radar for a few years now, I am finally starting the formal process to be listed for a double lung transplant at Stanford University.

I recently has to change insurance companies, which forced me to change CF clinics. There was about 6 weeks where I essentially went without care. And in those 6 weeks, I came down with a very stubborn infection that did not respond to antibiotics. By the time I was able to be seen by a doctor, my lung functions were at a lifetime low. I was admitted to the hospital for 10 days, shortly before Christmas. I spent a total of 3 weeks on IVs, and while my lung function came back some, it is now in a range where I am a strong candidate for transplantation.

So starting Monday, January 30th, I am going through the testing to determine if it is time, and what score I would have if I were to be listed now. Lungs are given based on a Lung Allocation Score (LAS), which is determined by a number of tests. Whomever has the highest number is first on the list if lungs come up that are compatible with their size and blood type.

I am nervous, excited, anxious, and accepting of this new phase of my life.I have started a Facebook group here for quick updates. Feel free to join the group, but I am also going to try to hold myself accountable for updating here more often.