Comments on: Our Personal Transplant Battle http://transplantblog.angelcove.us/2009/07/our-personal-transplant-battle.html Our journey together before, during and after a double lung transplant. Sun, 22 Jan 2012 14:49:13 +0000 hourly 1 http://wordpress.org/?v=3.3.1 By: Shannon http://transplantblog.angelcove.us/2009/07/our-personal-transplant-battle.html#comment-632 Shannon Thu, 26 May 2011 13:45:06 +0000 http://transplantblog.angelcove.us/?p=409#comment-632 Wow Tricia! That is an awesome story of strength and perseverance! God is definitely good! Stay healthy! Wow Tricia! That is an awesome story of strength and perseverance! God is definitely good! Stay healthy!

]]> By: Tricia N. http://transplantblog.angelcove.us/2009/07/our-personal-transplant-battle.html#comment-629 Tricia N. Thu, 12 May 2011 23:26:47 +0000 http://transplantblog.angelcove.us/?p=409#comment-629 I'm not even sure where to begin. I will be 32 in Sept. and I have Cystic Fibrosis (CF does not have me)! I will make this as easy to read as possible. I have a wonderful, supportive husband that I love so much more than I can even say. AND I have a beautiful, healthy baby girl who will be 6 on Friday next week! (That's a whole story in itself) She is my everything & my love for her cannot even be described. She is such an awesome litte girl with the most tender little heart you have ever seen in a child. When I was born, my mom was told by the drs that I wouldn't live to be 2 years old, so as you can see already, I AM A MIRACLE FROM GOD!!! Although I've had CF all my life (of course), it never affected my everyday life until about 6 yrs ago which was when I was put in the hospital for the very first time. Since then, I have gone through good years and bad years (as I'm sure you understand). Normally, on average I'm in the hospital about 2-3 times per year. I am not on oxygen but do many treatments daily. Fast forward to the current time....about 6 wks ago my husband got a terrible, terrible sickness (I would relate it to bronchitis or something). And, unfortunately it was passed to me. After 2 weeks of being on STRONG oral antibiotics and just not feeling back to 100% I was put in the hospital. Everything has changed since then. I was in the hospital for 2 full wks(my longest stay) and finished another wk of IV antibiotics at home. My PICC Line was pulled 2 days ago. Normally, I bounce back by wk 1 of being on antibiotics...this time, that hasn't happened. Even after being in the hospital 7 days, my FEV1 was oly 39% (all time low for me). It was 53% a month prior at my appt. I feel short of breath ALL the time (normally I have to be scrubbing floors, climbing stairs, etc for shortness of breath). I have also lost 8 pounds from being sick (which I'm trying to gain back). I do have another PFT scheduled for tomorrow so we will see. Anyway, the dr. has said it's time to get the ball rolling and get my folder sent to a transplant center. Even though I am trusting GOD and faithfully praying...there's a fine line between trusting GOD and just being stupid. I am grateful I live in a time that medically there are things that can be done. At this point, my dr. says I am probably not ready...but we want to start preparing. I am NOT giving up! I refuse to! I have TOO much to live for and TOO much I want to see! However, I could use any info from you re lung transplants that is above and beyond what they want you to read online. I will start swimming again next week, hopefully I will be able to get back what I've lost! This is my prayer! Though this is a scary time, I am staying positive (most of the time)! Mentality is 1/2 the battle I'm always told and I want to live!!!! Thank you for sharing the info about your husband. My brother has CF but has never had a single problem up to this point (he is 23), praise GOD!!! I just need someone to talk to. My husband, mom, mom-in-law, friends ~ all an amazing support team! However, sometimes you need to speak with someone that really knows how you feel. If you decide to get back to me, please use my direct email address. I am so thrilled for you and your husband! I will pray that he continues to do well! GOD IS SO GOOD!!!! I’m not even sure where to begin. I will be 32 in Sept. and I have Cystic Fibrosis (CF does not have me)! I will make this as easy to read as possible.
I have a wonderful, supportive husband that I love so much more than I can even say. AND I have a beautiful, healthy baby girl who will be 6 on Friday next week! (That’s a whole story in itself) She is my everything & my love for her cannot even be described. She is such an awesome litte girl with the most tender little heart you have ever seen in a child.
When I was born, my mom was told by the drs that I wouldn’t live to be 2 years old, so as you can see already, I AM A MIRACLE FROM GOD!!! Although I’ve had CF all my life (of course), it never affected my everyday life until about 6 yrs ago which was when I was put in the hospital for the very first time.
Since then, I have gone through good years and bad years (as I’m sure you understand). Normally, on average I’m in the hospital about 2-3 times per year. I am not on oxygen but do many treatments daily.
Fast forward to the current time….about 6 wks ago my husband got a terrible, terrible sickness (I would relate it to bronchitis or something). And, unfortunately it was passed to me. After 2 weeks of being on STRONG oral antibiotics and just not feeling back to 100% I was put in the hospital. Everything has changed since then. I was in the hospital for 2 full wks(my longest stay) and finished another wk of IV antibiotics at home. My PICC Line was pulled 2 days ago. Normally, I bounce back by wk 1 of being on antibiotics…this time, that hasn’t happened. Even after being in the hospital 7 days, my FEV1 was oly 39% (all time low for me). It was 53% a month prior at my appt. I feel short of breath ALL the time (normally I have to be scrubbing floors, climbing stairs, etc for shortness of breath). I have also lost 8 pounds from being sick (which I’m trying to gain back). I do have another PFT scheduled for tomorrow so we will see.
Anyway, the dr. has said it’s time to get the ball rolling and get my folder sent to a transplant center. Even though I am trusting GOD and faithfully praying…there’s a fine line between trusting GOD and just being stupid. I am grateful I live in a time that medically there are things that can be done. At this point, my dr. says I am probably not ready…but we want to start preparing. I am NOT giving up! I refuse to! I have TOO much to live for and TOO much I want to see! However, I could use any info from you re lung transplants that is above and beyond what they want you to read online. I will start swimming again next week, hopefully I will be able to get back what I’ve lost! This is my prayer! Though this is a scary time, I am staying positive (most of the time)! Mentality is 1/2 the battle I’m always told and I want to live!!!!
Thank you for sharing the info about your husband. My brother has CF but has never had a single problem up to this point (he is 23), praise GOD!!! I just need someone to talk to. My husband, mom, mom-in-law, friends ~ all an amazing support team! However, sometimes you need to speak with someone that really knows how you feel.
If you decide to get back to me, please use my direct email address. I am so thrilled for you and your husband! I will pray that he continues to do well! GOD IS SO GOOD!!!!

]]> By: Shannon Steffen http://transplantblog.angelcove.us/2009/07/our-personal-transplant-battle.html#comment-98 Shannon Steffen Thu, 08 Jul 2010 14:36:54 +0000 http://transplantblog.angelcove.us/?p=409#comment-98 Yes, Angel Cove is very familiar with the sisters! They are such an inspiration! Yes, Angel Cove is very familiar with the sisters! They are such an inspiration!

]]> By: Karen http://transplantblog.angelcove.us/2009/07/our-personal-transplant-battle.html#comment-97 Karen Thu, 08 Jul 2010 06:32:20 +0000 http://transplantblog.angelcove.us/?p=409#comment-97 I hope you have already seen this and just enjoy seeing it again. These two sisters are from a town close to my home town. I think the footage is worth watching! http://www.youtube.com/watch?v=2W5Q3Yal3yQ I hope you have already seen this and just enjoy seeing it again. These two sisters are from a town close to my home town. I think the footage is worth watching! http://www.youtube.com/watch?v=2W5Q3Yal3yQ

]]> By: Shannon http://transplantblog.angelcove.us/2009/07/our-personal-transplant-battle.html#comment-67 Shannon Tue, 16 Feb 2010 13:56:37 +0000 http://transplantblog.angelcove.us/?p=409#comment-67 James - Yes, Greg is going on 6 years now with his new miracle lungs and if you check back to the beginning of this blog, there is an hourly update on his progress from the moment we were told "<a href="http://transplantblog.angelcove.us/2004/11/transplant-time.html" rel="nofollow">It's a go!</a>". Before he got very sick, he was around 33%. With the pneumonia, we think he was around 10-18% lung function but he was too weak to do PFTs. He was out of the hospital in 11 days and the doctors said he would hit his peak at 6 months... they were wrong. It is now 5 years later and his lung function went from around 60% at 6 months to 86% today. He has had absolutely no rejection and is still on inhaled medication to keep any pseudomonas from his nasal cavity from getting into his new lungs. We should definitely get together when you finally travel up here. Phil and I meet regularly so he can definitely connect us when you are in town. I would love to meet your wife... she is far from alone in her place in the battle and if she ever wants to chat in the meantime, feel free to send along my information. Stay healthy and best of luck at the CF walk! James – Yes, Greg is going on 6 years now with his new miracle lungs and if you check back to the beginning of this blog, there is an hourly update on his progress from the moment we were told “It’s a go!“.

Before he got very sick, he was around 33%. With the pneumonia, we think he was around 10-18% lung function but he was too weak to do PFTs. He was out of the hospital in 11 days and the doctors said he would hit his peak at 6 months… they were wrong. It is now 5 years later and his lung function went from around 60% at 6 months to 86% today. He has had absolutely no rejection and is still on inhaled medication to keep any pseudomonas from his nasal cavity from getting into his new lungs.

We should definitely get together when you finally travel up here. Phil and I meet regularly so he can definitely connect us when you are in town. I would love to meet your wife… she is far from alone in her place in the battle and if she ever wants to chat in the meantime, feel free to send along my information.

Stay healthy and best of luck at the CF walk!

]]> By: Jesse Petersen http://transplantblog.angelcove.us/2009/07/our-personal-transplant-battle.html#comment-66 Jesse Petersen Tue, 16 Feb 2010 13:20:39 +0000 http://transplantblog.angelcove.us/?p=409#comment-66 What a story! Thanks for sharing, Shannon. So, going on 6 years on new lungs. I've heard the first 3 months are miserable with the testing, but I can only imagine how AWESOME it would to take every one of those breaths over those trying days of poking, choking, and such. I bounce between 30% and 36%, but I've read about getting back up to the upper 40's from there. I've got a goal. ;-) Don't be a stranger. If we get up to see Phil Gerbyshak or my best friend from high school in Milwaukee this year, I'm sure my wife would be just as excited to meet you two. What a story! Thanks for sharing, Shannon. So, going on 6 years on new lungs. I’ve heard the first 3 months are miserable with the testing, but I can only imagine how AWESOME it would to take every one of those breaths over those trying days of poking, choking, and such.

I bounce between 30% and 36%, but I’ve read about getting back up to the upper 40′s from there. I’ve got a goal. ;-)

Don’t be a stranger. If we get up to see Phil Gerbyshak or my best friend from high school in Milwaukee this year, I’m sure my wife would be just as excited to meet you two.

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