(Originally published on 2/27/14 on cotaforjensh.com)
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Thursday, February 27, 2014
Wednesday, February 26, 2014
Update
(Originally published on 2/26/14 on cotaforjensh.com)
Jens is still at VUMC. He has continued to have some streaks of blood in his normal sputum, so they want to continue to monitor that. The doctors want to hold off on a discharge from the hospital until he can safely do more of his airway clearance routines. Right now, he is only doing Albuterol with some chest percussion. They would like to see him back on Pulmozyme and doing more chest percussion for his airway clearance routine, but they have been slow to reintroduce things since they did not want to aggravate whatever infection was causing the bleeding.
The transplant evaluation in Pittsburgh has been scheduled to begin on March 17 and will last a few days that week. More to come about that, but we at least have that scheduled!
In the meantime, emotions are everywhere, bodies are tired, and some days are just plain tough. We are having to really fight for joy each and every day. Just last week, Jens and I struggled with separating transplant preparation stuff (COTA, fundraising, appointments, moving, etc.) from our normal lives of grocery shopping and honestly, just enjoying time together. If we were having to fight for joy last week, this week has been an all-out battle. We are having to be really intentional with our time, so that there are times when we have to deal with the "business" of all of this and times when we can just have fun and enjoy each other's presence.
We cherish every prayer and outpouring of support. We are so grateful, and it lifts our spirits to know we have this incredible team supporting us every step of the way. Please forgive us in the times where we haven't done a great job of communicating with you. We are so touched that you care and want to be involved.
With gratitude,
Abby (and Jens)
Jens is still at VUMC. He has continued to have some streaks of blood in his normal sputum, so they want to continue to monitor that. The doctors want to hold off on a discharge from the hospital until he can safely do more of his airway clearance routines. Right now, he is only doing Albuterol with some chest percussion. They would like to see him back on Pulmozyme and doing more chest percussion for his airway clearance routine, but they have been slow to reintroduce things since they did not want to aggravate whatever infection was causing the bleeding.
The transplant evaluation in Pittsburgh has been scheduled to begin on March 17 and will last a few days that week. More to come about that, but we at least have that scheduled!
In the meantime, emotions are everywhere, bodies are tired, and some days are just plain tough. We are having to really fight for joy each and every day. Just last week, Jens and I struggled with separating transplant preparation stuff (COTA, fundraising, appointments, moving, etc.) from our normal lives of grocery shopping and honestly, just enjoying time together. If we were having to fight for joy last week, this week has been an all-out battle. We are having to be really intentional with our time, so that there are times when we have to deal with the "business" of all of this and times when we can just have fun and enjoy each other's presence.
We cherish every prayer and outpouring of support. We are so grateful, and it lifts our spirits to know we have this incredible team supporting us every step of the way. Please forgive us in the times where we haven't done a great job of communicating with you. We are so touched that you care and want to be involved.
With gratitude,
Abby (and Jens)
Sunday, February 23, 2014
Hemoptysis & a Hospital Visit
(Originally published on 2/23/14 on cotaforjensh.com)
Jens called me a little after 3 AM on Friday morning to tell me that he was coughing up blood (hemoptysis). We gathered the essentials and headed to the ER at VUMC (Vanderbilt Hospital). After running the necessary tests, they admitted him to an ICU room within a few hours and decided to keep him for observation at least 24 hours. We thought that they might try to do an embolization, something he's had done twice in the past. We knew that an embolization would stop the bleeding, but we also were fearful of his history with this procedure. He had this done in 2009 and 2011 after hemoptysis, and after both, he had pancreatitis and high fevers, among other complications.
The doctors decided the best plan of action was to start him on some IV antibiotics and observe him here at the hospital. He was doing well enough to move from ICU to a "regular" room around 6 PM on Saturday night. We went from a pretty large, wooden floor room to the smallest corner room on the floor with that awful dingy white everywhere. I could tell instantly that his spirits were low. He was grumpy and impatient with the new nurses. I was frustrated because we came right before a shift change, so the first nurses were on their way out. I never felt like the new staff truly knew what Jens's case was.
At 9:30 as Jens was eating dinner, he started coughing up fresh blood again. We became anxious at this, with good reason. It's never fun to feel like they don't understand your case and when the patient feels that he has to make the decisions for himself (because they don't fully understand his treatment plan or history).
I could tell Jens didn't want me to leave, but didn't want me to stay either. I fell asleep there and woke up at 2 to go home to get some rest in my bed. We both live within a couple of miles, so it's manageable to go back and forth between the hospital and our homes.
Today, we've continued to moinitor the hemoptysis, as we wait and see what steps to take next. At least the lunch looked appetizing today!
Prayers for wisdom to know what to do, kindness even though we are frustrated, and hope and cheerfulness to defeat our anxiety.
Thanks!
Abby (and Jens)
PS- It's easy for us to update via Facebook, so check there for the latest first. www.facebook.com/lungs4jens
Jens called me a little after 3 AM on Friday morning to tell me that he was coughing up blood (hemoptysis). We gathered the essentials and headed to the ER at VUMC (Vanderbilt Hospital). After running the necessary tests, they admitted him to an ICU room within a few hours and decided to keep him for observation at least 24 hours. We thought that they might try to do an embolization, something he's had done twice in the past. We knew that an embolization would stop the bleeding, but we also were fearful of his history with this procedure. He had this done in 2009 and 2011 after hemoptysis, and after both, he had pancreatitis and high fevers, among other complications.
The doctors decided the best plan of action was to start him on some IV antibiotics and observe him here at the hospital. He was doing well enough to move from ICU to a "regular" room around 6 PM on Saturday night. We went from a pretty large, wooden floor room to the smallest corner room on the floor with that awful dingy white everywhere. I could tell instantly that his spirits were low. He was grumpy and impatient with the new nurses. I was frustrated because we came right before a shift change, so the first nurses were on their way out. I never felt like the new staff truly knew what Jens's case was.
At 9:30 as Jens was eating dinner, he started coughing up fresh blood again. We became anxious at this, with good reason. It's never fun to feel like they don't understand your case and when the patient feels that he has to make the decisions for himself (because they don't fully understand his treatment plan or history).
I could tell Jens didn't want me to leave, but didn't want me to stay either. I fell asleep there and woke up at 2 to go home to get some rest in my bed. We both live within a couple of miles, so it's manageable to go back and forth between the hospital and our homes.
Today, we've continued to moinitor the hemoptysis, as we wait and see what steps to take next. At least the lunch looked appetizing today!
Prayers for wisdom to know what to do, kindness even though we are frustrated, and hope and cheerfulness to defeat our anxiety.
Thanks!
Abby (and Jens)
PS- It's easy for us to update via Facebook, so check there for the latest first. www.facebook.com/lungs4jens
Tuesday, February 18, 2014
Fundraising Event in Austin, TX
(Originally posted on 2/18/14 on cotaforjensh.com)
What are you doing on Tuesday night? The Olympics will be over, so head out to Lucky Louge in Austin. The Lucky Lounge (owned by a Vanderbilt Commodore friend) is hosting a night to help raise funds for COTA in honor of Jens. Proceeds from the night will go to help with transplant-related expenses. If helping a good cause isn’t enough motivation, there will also be performances by NBC "The Voice" contestants Tje Austin Alldredge & Brian Pounds.
Help us spread the word to raise money for COTA in honor of Jens!
The Lucky Lounge- Austin
209a West 5th St, Austin, Texas 78701
Tuesday, February 25, 2014
8:30 PM
https://www.facebook.com/events/680911915280247/?ref_newsfeed_story_type=regular
What are you doing on Tuesday night? The Olympics will be over, so head out to Lucky Louge in Austin. The Lucky Lounge (owned by a Vanderbilt Commodore friend) is hosting a night to help raise funds for COTA in honor of Jens. Proceeds from the night will go to help with transplant-related expenses. If helping a good cause isn’t enough motivation, there will also be performances by NBC "The Voice" contestants Tje Austin Alldredge & Brian Pounds.
Help us spread the word to raise money for COTA in honor of Jens!
The Lucky Lounge- Austin
209a West 5th St, Austin, Texas 78701
Tuesday, February 25, 2014
8:30 PM
https://www.facebook.com/events/680911915280247/?ref_newsfeed_story_type=regular
Thursday, February 13, 2014
To Our Anonymous Donors
(Originally published on 2/13/14 on cotaforjensh.com)
To our Anonymous Donors:
When donating to COTA in honor of Jens online, donors have the option for their gift to be anonymous.* At last count 22 people decided to choose this option. COTA honors that request, and it is their policy to not release any information to us about who gave anonymously.
So, to our anonymous donors, this is for you. We appreciate your generosity and support. Some of you we know. Others of you have just been touched by the story and moved to give. No matter if we’ve known you for years or if we have not met yet, you have given willingly and with the utmost kindness. We are so blown away by your donations, and by the donations of everyone who has given. It has been a huge gift to us to be able to not worry about the financial part, so that we can focus on Jens’s health and all of the details associated with the transplant. Thank you, thank you, thank you!
With gratitude,
Jens and Abby
To the donors that did not donate anonymously, we appreciate you too! A little note will be heading your way soon. We receive monthly reports with donor names and addresses from the previous month.
*We realize that some of may have only clicked that option because you didn’t want your name on that site. Don’t worry, we probably would have clicked that too. If that is the case, and you want us to know, feel free to send an email to lungs4jens@gmail.com. We would love to send you something too!
Friday, February 7, 2014
#Follow Friday
(Originally published on 2/7/14 on cotaforjensh.com)
Did you know that "Lungs4Jens" is on Twitter? Follow @Lungs4Jens on Twitter for updates, photos, and more!
www.twitter.com/lungs4jens
Did you know that "Lungs4Jens" is on Twitter? Follow @Lungs4Jens on Twitter for updates, photos, and more!
www.twitter.com/lungs4jens
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