And throughout the week my friends have been coming to visit me. It is really nice to have them come by and just catch up on things/ gossip about who is cute in the hospital. Like tell them how the night before, I had the cutest respiratory therapist only for him to show up half hour later and as I thought he left the room I blurted out "see isn't he cute" and turn around and notice him fumbling with closing the door- meaning he most likely heard me!!
Chicago is a city of almost 3 million people. But it really is a small world. The first few days in here I posted on Facebook, Hotel Northwestern for the week. One of my friends from Loyola, who I haven't seen in a few years messaged me she was working that night and would stop by with Starbucks. I didn't know she was working here, but it was great to see her and catch up.
The next day I was have physical therapy and we were walking the halls and I ran into one of my parents friends. She belongs to IC as well, but her sons were a little bit older then Jack and I. She was here visiting her mother who fell and broke her hip.
A couple days later I was walking in my hallway with Dad, and I did a double-take at one of the nurses. After a minute I realized I went to Loyola with her. She was a year younger then me, but we had a class together jr year.
It is just funny how small this world is and how fun it is running into old friends and catching up with them.
For my birthday Kelly Jackson gave me a book called "The Tao of Pooh". It is a philosophy book as told by the perspective of Winnie the Pooh. In case you didn't know, I am obsessed with Winnie the Pooh. This book is just interesting to learn more about Chinese philosophy and how they think but "dumbed" down to make it easy to understand. Plus, they talk as if they are talking to Pooh and he responds in the same way he does on tv/movies- in which it just makes me laugh.
One of the quotes I pulled out of the book is the perfect outlook on life that I need now. "A thousand mile journey starts with one step".
My parents and I had a meeting with both Dr. Michelle Prickett and Dr. Manu Jain (pulmonary) and their nurse coordinator Joanne and social worker Lori. We discussed my health and where it is headed. Currently, I have a cavity in my left lung that is getting bigger and causing pain as well as being the possible source of my bleeding. I bleed often and that is contributing to my infections as well lung damage. At this rate, the doctors believe my health will continue to decline. Right now, at 42% lung function, I am still reacting positively to antibiotics but they are saying it will get to the point where antibiotics won't work anymore. As of now there are only a few that my cultures and "bugs" inside my lungs respond to. They have exhausted others that used to work. Before we get to the point where nothing works anymore they want me to be prepared. This includes the conversation of transplant.
Transplant isn't an automatic solution. Essentially you are trading one disease for another. After transplant you run the risk of rejection and eventually organ failure from that. In order to prevent that, you take anti-rejection medicine that compromises your immune system. This makes it very risky to be in public or crowded areas as they are "germ pits". Also, the other complications of CF won't go away with transplant. I will still have liver disease, diabetes, low white blood cells and platelets and seizure disorder.
The benefits of transplant are obvious though. I will be able to breathe! I won't be coughing blood. I won't need oxygen(thankfully it is only at night at this point). It will also extend my life. There are people with transplant going on ten years and maybe even more! I will be able to work full time. There are so many things that it can do.
It should be obvious what choice I make. As this "fork in the road" is presented to me, transplant or comfort care, I wish it was easier to choose. Maybe it will come a little later when I learn more about both options.
As for now, we are holding off on everything and just focusing on getting me better from this infection. I have been on IV's over a week now and starting to feel better. I am still coughing blood, but it isn't as much anymore. I also went 3 days without any blood! We will revisit this topic together as a team in 4-6 weeks. At that point, I assume if I decide transplant we will begin the process for evaluation. Evaluation is like a week long of tests, literally every test in the world that has to do with any of your organs and general health, is conducted. They will determine if you are a good candidate for the surgery or not. Alot will also fall on my team of doctors now, as they also have input as to how they think the surgery will affect me. A concern, and possible disqualification for transplant for me is my liver disease. As that progresses, there is nothing they can do for it. So the question falls on the liver team whether they think I will be able to handle the surgery from a medical standpoint, including all the drugs they will give me.
Mentally, I am handling this conversation of transplant much better then the last (initial reality). I will be seeing a therapist to talk things through and see if she can help me make the right decision. As the CF team says they support my decision, and what I think is best for me.
I guess more to come in the following weeks.
