Surviving the hospital stay!

Before transplant and right after I hated the hospital and the very idea of coming in. As with CF, visits to the hospital can be frequent, and I fought those visits tooth and nail to stay out. Even generating tears telling Dr. Scott I could do the meds at home and feel better just as well as if I were in the hospital. Then I went and found myself on the vent in the hospital for 145 days, payback, possibly. In any case, it was one year ago that we started the discussion of transplant and I was just being discharged from a three week visit. 

Fast forward one year and who would have guessed that I would be sitting here with new lungs, I couldn't even imagine this day no matter how hard I would have tried, but I also would have never expected to spend time on a vent. So basically life is one surprise after another. 

But the biggest surprise to me as I am on day six of my hospital stay, I am at peace with being here, I am not frustrated or angry, or chomping at the bit to get out, I am in a way content. There are only a few reasons why I can understand this. One, being I am too exhausted at just the idea of doing all these IV medications at home on my own that I am ok with someone else doing the work, two, that I don't feel like absolute shit like I used to when I went in the hospital thus its less taxing, and/or three, that maybe with not having to cough my lungs out three times a day on top of all the drugs on top of making sure things are done the way I like them that I am not as uptight therefore I can relax more. 

Whatever the case may be I am pleased that I feel this way. It has taken me all these years to not hate the hospital but to appreciate it, it could also be the fact that being alive, still, changes a person and their perspective.

My only real frustration at this time is that stupid pseudomonas had to find its way back into my life and lungs. I hope and pray we can get rid of it, as it is such an ugly bacteria to have, how well my old lungs knew it. For now, I will do my part and relax here during my hospital visit and let the nurses, doctors, and my own body do what they all need to do to make me better.

I am in good company here, I have met so many people through this whole process and I am getting to spend time with them and meet a few new ones. Transplanting an organ is more than just that, I would have never realized how much it has transformed my life and others around me, I think I have only seen the beginning of something amazing.

Sweet dreams!


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Monday, Monday!

Just when you think it's safe to go back in the water.

My Monday started out that I was to have an meeting with the director of CE to discuss my coming back to work. Instead I found myself at the clinic, the place I was not suppose to be this week and now I find I will be there in some capacity everyday but Friday. 

I've had this stupid wheezy feeling and something is stuck sort of feeling in my chest for s few days now and last night I decided today I would call in and get an answer. My answer was to have blood drawn, a PFT, a CT, and meet with the doctor, and meeting with the doctor has led to a bronchoscopy on tuesday, another CT, then blood Wednesday and another dr. Appointment on Thursday. Throw in that I will likely end up on iv antibiotics. The bronchoscopy will do a couple things tomorrow as it is also a biopsy, it will tell us whether what they saw on the CT is rejection or not, or infection. I believe they think infection and I hope that's what it is.

What sucks is I just spent the weekend at my house and Chris and I talked about me coming home more frequently as I am not at the clinic as much, and we can start setting things in motion for my arrival, well this throws a wrench in that plan. Welcome to the always unsure, never set in stone life of Sarah Hackenmiller.

So, as I sit here pedaling my bike to no where, I hope and pray tomorrow brings good news, either way I know an iv is in my future and more therapies and drugs. I shall take it in stride as that is what I signed up for with new lungs. One step forward, three back, eventually I will find even ground, or at least good shoes for the journey.