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Monday, January 28, 2013
Friday, January 18, 2013
Expressions to another
After my CF doctor started getting serious with me about transplant he gave me the e-mail address to a post transplant survivor to talk to about some of my concerns. Ana Stenzel and I have been in contact for almost two years now and recently I have had the chance to watch the documentary "The Power of Two." A film about her and her twin sister Isa growing up with CF and both surviving double lung transplant. At the end of 2012 I drove to Pasadena to meet with the Ana, Isa and their family at a hanger where the Donate Life float was being decorated for the Rose Parade. Our photo
This e-mail to Ana in April of 2011, I had recently got back from a trip to Aruba with Summer. At this point in my life it was a task to pack; medications, nebulizer, and bi-pap machine. As you can imagine taking a number of flights and leaving the county packing a pharmacy worth of health care needs with me attracted some attention from security. Though it didn't cos any major problems it was embarrassing to pull out all this equipment so the officer could inspect it. Despite all of the extra baggage, the trip to Aruba with Summer* was a wonderful time.
*Summer and I were not dating at this point in time.
E-Mail to Ana on 4/21/11
Well, I am at a loss of words. I had a follow-up visit at UPMC (the transplant center) and all I really got out of it was that compliance is the key and now I need to go on O2 day and night. I have only been using it at night with a Bi-Pap machine. I dont feel confortable going about my daily life with oxygen tubes hanging off me. . . Just one more step toward transplant, but geez, I sometimes question how much can one single person take?! I am single, its been a while since I've had a steady girlfriend. Partly because of CF and partly for what I feel for Summer.
However, what bothers me the most is holding back because of CF and now this BIG surgery in the near future. I don't exactly know how to mix my medical world with a personal relationship. I feel like over the years I have had to become "cold" to certain things in life, my life. How can I ask another person to join me in the journey of life when I am on this crash course of my own?! Aruba was great, it has been the third tropical island I've visited and as I grow as a human the more these trips mean to me and the more I get out of them. Grenada, and Bahamas are the others I've visited in the past years. This time, more than ever I could tell that being at sea level and the salt in the air made breathing easy. Well easy as it can be. My friend that went with me got to do two dives and she is eager for me to get some lungs as so I can join her. It is so good to hear that you are diving!
Back in reality, my lungs have been far from fit living at 2300 foot altitude and rainy/humid days. Irritation, frustration, and just plain out anger have all went through my head. This "one day at a time" plan is good on the good days but when I start off the mornings breathing hard and extra mucus it seems like the good days are soooo far off.Anyway, I'm looking at the future yet dealing with the present. Is there a happy medium in there anywhere?
Take Care,
Andy
This e-mail to Ana in April of 2011, I had recently got back from a trip to Aruba with Summer. At this point in my life it was a task to pack; medications, nebulizer, and bi-pap machine. As you can imagine taking a number of flights and leaving the county packing a pharmacy worth of health care needs with me attracted some attention from security. Though it didn't cos any major problems it was embarrassing to pull out all this equipment so the officer could inspect it. Despite all of the extra baggage, the trip to Aruba with Summer* was a wonderful time.
*Summer and I were not dating at this point in time.
E-Mail to Ana on 4/21/11
Well, I am at a loss of words. I had a follow-up visit at UPMC (the transplant center) and all I really got out of it was that compliance is the key and now I need to go on O2 day and night. I have only been using it at night with a Bi-Pap machine. I dont feel confortable going about my daily life with oxygen tubes hanging off me. . . Just one more step toward transplant, but geez, I sometimes question how much can one single person take?! I am single, its been a while since I've had a steady girlfriend. Partly because of CF and partly for what I feel for Summer.
However, what bothers me the most is holding back because of CF and now this BIG surgery in the near future. I don't exactly know how to mix my medical world with a personal relationship. I feel like over the years I have had to become "cold" to certain things in life, my life. How can I ask another person to join me in the journey of life when I am on this crash course of my own?! Aruba was great, it has been the third tropical island I've visited and as I grow as a human the more these trips mean to me and the more I get out of them. Grenada, and Bahamas are the others I've visited in the past years. This time, more than ever I could tell that being at sea level and the salt in the air made breathing easy. Well easy as it can be. My friend that went with me got to do two dives and she is eager for me to get some lungs as so I can join her. It is so good to hear that you are diving!
Back in reality, my lungs have been far from fit living at 2300 foot altitude and rainy/humid days. Irritation, frustration, and just plain out anger have all went through my head. This "one day at a time" plan is good on the good days but when I start off the mornings breathing hard and extra mucus it seems like the good days are soooo far off.Anyway, I'm looking at the future yet dealing with the present. Is there a happy medium in there anywhere?
Take Care,
Andy
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