Kayla Quote: "She's very, very sick, but she's in the right place." - Dr. Gluck, Transplant Cardiologist, Hartford Hospital, Hartford, Connecticut
Short Synopsis: When I arrived on the seventh floor to see Kayla, she was being wheeled back from a scan. Am not sure what they were checking but I know they were interested in her brain and lungs. No one would tell me which scan they did.
It was not her best day emotionally. She has been through more than most people have experienced in their entire lives.
Kayla was miserable when I informed her that Hartford Hospital had turned her down as a "double listing" candidate to wait for a heart. We'd spent two months completing tests to be listed. The last test was a TB one - that was it!
Hartford has an emerging heart transplant program, headed up by two transplant cardiologists who are "Columbia-trained" with a third German doctor at the helm. You can get a heart there in 4-6 months. They are following approximately 75 patients. The atmosphere is much smaller and more friendly and the communication is tremendous. At the same time, they want to only accept candidates who will add to their success.
Kayla felt we had wasted our precious time trying to be listed there. They deemed her "too complicated" and they have no experience with the more complex PVAD device that she is on, assisting both her right and left ventricles.
Kayla did not want to know all the details of why she was not accepted and I had to respect her wishes and drop the subject.
Long Story: The stress is incredible for me today and I am not strong at all. Totally exhausted, I wept everywhere - all over town. Decided to go back home and make two rhubarb pies from all the fruit I had picked from the garden. I even had extra so I put it in Alice's mailbox next door.
Dr. Jason Gluck calls me to apologize for not getting back. I had left a message on his voice mail, knowing he had come to Columbia for a seminar and wondering why he didn't stop by to say hello.
"You didn't come to say hello to Kayla. We have a relationship with you," I tell him.
Gluck said he wanted to but wasn't able. A great positive communicator, he tells me that he had brought up Kayla in their morning meeting and they made the decision to turn her down. She is just too complex.
"Columbia is the best hospital, or Cleveland or UCLA," he says, "No one is as experienced or as capable as Columbia. She's in the right place."
"Let me ask you this....should I go to the Boston Hospitals? Should I try for double listings there?"
"No, there is not a single hospital in all of New England who is as good as Columbia. No one else has the ECMO machine which saved her. She is absolutely in the right place and much too complicated with all of her issues. If you have another hospital, then you wonder who to follow. There are too many doctors."
Dr. Gluck went on to explain that her heart is just a vessel now with blood flowing through it. It is much safer now with the device and the body no longer has to rely on a weak heart muscle which can no longer pump. She can do well with the device and feel a lot better and have more energy to live. There is no further damage that can be done to this existing heart in her body. It's at its end. The device is doing all the work!
Now it is a waiting game...waiting for the new heart.
I felt relief.
Kayla is agitated with all of this news. She wants to plead her case and get a one month appointment and was too upset to see Hartford's point of view. With a dying heart inside her body, who could blame her?
"Kayla, you need a direct communication with Dr. Gluck. Maybe that would clarify things."
- - - - - - - - - - -
I slept from 4:30-6:30 down the hall from Kayla's hospital room. The end of the building - it's the best kept secret in the whole hospital. No one walks down there. The entire corner of the building is covered with windows. It's the closest view of the George Washington Bridge from Milstein's 7th floor. I go here often for privacy.
I am shocked that I slept for two hours...
- - - - - - - - - - -
Best news of the day? Thomas got a 20 hour a week part-time job at NAPA Auto Parts right across the parking lot from his job at Stop & Shop. He was very excited about it. He wrote a cover letter, a resume and a sheet detailing his education. He shows us the papers and asks our opinion, only he had already given it to the boss at NAPA.
There was a "help wanted" sign in the door.
"Who is your competition?" I ask him.
"Two college boys." Oh dear...
"No, Mom, I think I can get it. They go back to school in the Fall and I have the background in Auto Mechanics. I have the degree. I stay on past the Fall."
I looked over the cover letter. It is chock full of too much information.
"You already gave this to the guy?"
Thomas is excited. Oh yes
"Oh jeez....no matter," I tell him. "It is obvious you really want the job. That shows clean through, but Thomas, I am surprised. For a young man of few words, you have a hell of a lot of words here. You are SO QUIET!"
Thomas was thrilled to tell me a day later, "Mom, I got the job!"
- - - - - - - - - - -
Grandma Lori made us all BBQ chicken, rice and salad. I didn't get home until 8:30 and was pleased to have a plate of food. Mike and his parents want to go to the gym... So sweet to see the three of them going off to exercise.
I went to karoke with my singing crowd. We now go to Ritz Asia, our new home. For $5.30 I get two cokes to sip all night. I sing solos and duets with different people. I dance all night.
Our crowd is energized by young 18-year-old Matt, our most talented youngster. I sing "Clocks" by Cold Play with Matt and Jeffery. Some of my selections for the night - "Don't You Want Me Baby?" - Human League; "Stop in the Name of Love" - Supremes; our old stand-by that Jeffery and I sing - "Summer Nights" - Olivia Newton John and John Travolta from "Greece" and "Respect" by Aretha Franklin.
Energizing night with singers Jeffery, Jules, David, Susan, Matt, B.J. - SUCCESS!! Oh yeah baby!
Short Synopsis: When I arrived on the seventh floor to see Kayla, she was being wheeled back from a scan. Am not sure what they were checking but I know they were interested in her brain and lungs. No one would tell me which scan they did.
It was not her best day emotionally. She has been through more than most people have experienced in their entire lives.
Kayla was miserable when I informed her that Hartford Hospital had turned her down as a "double listing" candidate to wait for a heart. We'd spent two months completing tests to be listed. The last test was a TB one - that was it!
Hartford has an emerging heart transplant program, headed up by two transplant cardiologists who are "Columbia-trained" with a third German doctor at the helm. You can get a heart there in 4-6 months. They are following approximately 75 patients. The atmosphere is much smaller and more friendly and the communication is tremendous. At the same time, they want to only accept candidates who will add to their success.
Kayla felt we had wasted our precious time trying to be listed there. They deemed her "too complicated" and they have no experience with the more complex PVAD device that she is on, assisting both her right and left ventricles.
Kayla did not want to know all the details of why she was not accepted and I had to respect her wishes and drop the subject.
Long Story: The stress is incredible for me today and I am not strong at all. Totally exhausted, I wept everywhere - all over town. Decided to go back home and make two rhubarb pies from all the fruit I had picked from the garden. I even had extra so I put it in Alice's mailbox next door.
Dr. Jason Gluck calls me to apologize for not getting back. I had left a message on his voice mail, knowing he had come to Columbia for a seminar and wondering why he didn't stop by to say hello.
"You didn't come to say hello to Kayla. We have a relationship with you," I tell him.
Gluck said he wanted to but wasn't able. A great positive communicator, he tells me that he had brought up Kayla in their morning meeting and they made the decision to turn her down. She is just too complex.
"Columbia is the best hospital, or Cleveland or UCLA," he says, "No one is as experienced or as capable as Columbia. She's in the right place."
"Let me ask you this....should I go to the Boston Hospitals? Should I try for double listings there?"
"No, there is not a single hospital in all of New England who is as good as Columbia. No one else has the ECMO machine which saved her. She is absolutely in the right place and much too complicated with all of her issues. If you have another hospital, then you wonder who to follow. There are too many doctors."
Dr. Gluck went on to explain that her heart is just a vessel now with blood flowing through it. It is much safer now with the device and the body no longer has to rely on a weak heart muscle which can no longer pump. She can do well with the device and feel a lot better and have more energy to live. There is no further damage that can be done to this existing heart in her body. It's at its end. The device is doing all the work!
Now it is a waiting game...waiting for the new heart.
I felt relief.
Kayla is agitated with all of this news. She wants to plead her case and get a one month appointment and was too upset to see Hartford's point of view. With a dying heart inside her body, who could blame her?
"Kayla, you need a direct communication with Dr. Gluck. Maybe that would clarify things."
- - - - - - - - - - -
I slept from 4:30-6:30 down the hall from Kayla's hospital room. The end of the building - it's the best kept secret in the whole hospital. No one walks down there. The entire corner of the building is covered with windows. It's the closest view of the George Washington Bridge from Milstein's 7th floor. I go here often for privacy.
I am shocked that I slept for two hours...
- - - - - - - - - - -
Best news of the day? Thomas got a 20 hour a week part-time job at NAPA Auto Parts right across the parking lot from his job at Stop & Shop. He was very excited about it. He wrote a cover letter, a resume and a sheet detailing his education. He shows us the papers and asks our opinion, only he had already given it to the boss at NAPA.
There was a "help wanted" sign in the door.
"Who is your competition?" I ask him.
"Two college boys." Oh dear...
"No, Mom, I think I can get it. They go back to school in the Fall and I have the background in Auto Mechanics. I have the degree. I stay on past the Fall."
I looked over the cover letter. It is chock full of too much information.
"You already gave this to the guy?"
Thomas is excited. Oh yes
"Oh jeez....no matter," I tell him. "It is obvious you really want the job. That shows clean through, but Thomas, I am surprised. For a young man of few words, you have a hell of a lot of words here. You are SO QUIET!"
Thomas was thrilled to tell me a day later, "Mom, I got the job!"
- - - - - - - - - - -
Grandma Lori made us all BBQ chicken, rice and salad. I didn't get home until 8:30 and was pleased to have a plate of food. Mike and his parents want to go to the gym... So sweet to see the three of them going off to exercise.
I went to karoke with my singing crowd. We now go to Ritz Asia, our new home. For $5.30 I get two cokes to sip all night. I sing solos and duets with different people. I dance all night.
Our crowd is energized by young 18-year-old Matt, our most talented youngster. I sing "Clocks" by Cold Play with Matt and Jeffery. Some of my selections for the night - "Don't You Want Me Baby?" - Human League; "Stop in the Name of Love" - Supremes; our old stand-by that Jeffery and I sing - "Summer Nights" - Olivia Newton John and John Travolta from "Greece" and "Respect" by Aretha Franklin.
Energizing night with singers Jeffery, Jules, David, Susan, Matt, B.J. - SUCCESS!! Oh yeah baby!
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