Where do I start?

I know it has been a while since I have posted. It seems like every time I want to write, something happens and I am again too busy or too disoriented to post.

Well I am now ready to write more about what's happening with us.

As all you know I have been back from the hospital since last Thursday night, after a 2 week stay. I left feeling good, with my lung function by no means great, but back to a safe place that they deemed okay to get me off of the antibiotics. I was given oxygen for home use, which is very new for me. It was a hard realization for me that this might be a new reality for me, but the doctors were hopeful that by using oxygen when I needed it, I would regain my strength. I started to feel poorly about a day after I got home. I needed more and more oxygen, and would now say that I feel worse than ever before. I have never had this low of a lung function and been on oxygen before. This is obviously a stressful time.

So I went to clinic yesterday, and had a long talk with the doctors. We came to the conclusion that I am obviously at a crossroads with my health. The fact that I seem to get worse right after stopping IV's, the fact that I need oxygen with exertion, and that my lung function is as low as it is, points to the fact that things have changed and it may be time to be assessed for transplant. The plan right now is to treat me aggressively and see if we can get me off oxygen, increase my lung function, and keep me off of antibiotics for a significant amount of time. If these things are not able to be changed, we have to start to think about transplant.

This does not come as a surprise to us. Martin and I had a long conversation on Monday and came to the conclusion that it was time (we have talked about it for years) and if nothing changes with in the next little while, that this standard of living that I have now is so compromised, that the thought of new lungs is becoming more and more something to think about. I have to admit, the past year has been very hard. But I was able to pull it together and work through it. Basically i did a huge amount every day to feel okay, and it was worth it. During the last 6 months, I feel like I spend 90% of my day working on my health, and there seem to be no returns. Now with oxygen, and less mobility (since I am having a hard time breathing and am very tired all the time) I seem to be thinking that it's becoming impossible for me to keep going like this. There is a breaking point and I have reached it.

Of course the timing could be better. Of course. But when is a transplant a thing that you can fit into your life on a whim. There will always be something. Now it is the birth of our baby girl (who might be under a year old when I get my lungs) but later it will be everything else in her life that I will not want to miss. There will never be a good time, thus if the time is now, c'est la vie.

Having this happen has made us think about the time when our little girl will arrive. Since things might change during the next half year due to my health, we decided (as a family) that my mom will stay with us and help us with the baby, instead of a nanny. If I am listed, it is the only way that this can work. It will be great. Three women of 3 generations hanging out together. When I am well, or when Martin is home from work, my mom will be back and forth from her home to ours. My parents do not live far. As a family we will get through that time together. I have all the confidence in the world about that.

Needless to say, our house is never boring. What next?!

My focus right now is to see if I can get past this, and see if perhaps it's not time yet. Only time will tell if it is. I am working hard at it. Harder than ever. I am working out on oxygen, doing a 30 minute cardio tape every day using oxygen. Trying to get my legs back, as well as regain my saturation. I would love to still get off oxygen. But I am also aware that transplant time will come. If it is now, there is nothing I can do but make the best of this time. How do I do that? Hmm...well I'm learning that right now, since instinct tells me to cry and scream and yell. To ask god why is life so hard?! But that would not help anyone. Not me, not Marty, not anyone else. So I choose to have hope in what the future holds. Hope and nothing but hope.

During the next few weeks I will update this blog with regards to my progress.

As for our little baby girl, she is doing well and growing inside Beth's belly. Beth says she's mega showing...and I cannot wait to see her. I hope it is soon.