Kayla Quote: "Listen to the mustn'ts, child.
Listen to the don'ts.
Listen to the shouldn'ts,
the impossibles, the won'ts.
Listen to the never haves,
then listen close to me...
Anything can happen, child.
Anything can be."
Shel Silverstein
Short Synopsis: Kayla, Mike and I are doing extensive training to learn how to operate the VAD (Ventricular Assist Device) machine so we can take Kayla home to wait for a heart. If the machine fails, we have to be able to get her up and running quickly on a second machine. Her compromised transplanted heart cannot support her body in any way. It no longer can beat on its own. The trainers are excellent and we try our best. Today Kayla and I did an open book VAD test together to make sure our knowledge was sound. There is also a meeting with the team to go over all kinds of detail. Exciting but scary. Kayla is stable and ready for home. She has been here since the end of March.
Long Story: Kayla is ready to be discharged to go home to wait for a heart. There is excitement and fear all rolled into one. Kayla wants to be with her friends and be home again. She has been talking about it for days.
"The Inquisition"
Kayla, Mike and I are escorted into a medium-sized conference room. There is one big long table with about 12 chairs around it. It has taken a good deal of planning to get all of the different doctors to come with their current status reports on Kayla. Each will express what we are all hoping for in her future.
Dr. Uriel is the head heart transplant cardiologist on service and in charge of this hospital floor. He is the leader and a clear thinker and speaker. He starts out saying that there is a clear need for a second heart. Kayla is stable from a cardiothoracic perspective. She has been in the hospital for 10 weeks and has had this pump for 6 and is doing well with it. The meeting is all about what we need to do to be ready for the transplant. The inquisition? Dr. Uriel expresses that the pain killers are a very big limitation to getting a transplant. The amount Kayla is currently on, including the methodone, will cause a lot of problems. We need to limit the number of people (outside doctors) who can prescribe these pain meds so we can see exactly what she is using. She has kept a "pain journal" in the past. In it, she records what pain she has and what she uses to help that pain. He has discussed this major problem openly with her many times and has let her know she cannot get a transplant with her current level of meds.
I like this man! Kayla has a hooded expression on her face. Her eyes are darkening and she is sinking into her wheel chair. What they don't know about our Kayla is that she is strong, probably one of the strongest people I know. I would have checked out a long time ago with this life. I cannot believe she is even here with us and how often she has beaten the odds by the thinnest of surviving threads. There are very few people who make it 12 years past their first transplant, nevermind, being here all ready to receive a second one. She has weathered numerous overwhelming heart failures and has suffered three strokes. People think you get a heart and it's all hunky dory...that your life is normal. It's all about getting the most out of that newly transplanted heart as possible. It's a waiting game. You squeeze as much life as possible with meds, doctoring, repeat hospitalizations due to immunosuppression, etc... It's all about desire to live.
The pain medications help her cope with incredible amounts of physical and psychological pain, more than any of us have had to go through our entire lives. Kayla is an inspiration to all of us not to give up even though every day she wants to. She continues to be a walking miracle and Columbia is excited to have someone like her. She defies all the odds every day, every hour, every minute. She is still a breathing spirited girl who wants what every else easily has....a normal life.
Kayla is angry all the time, angry at her predicament, angry at her unfair life. She started out with so much confidence and has been knocked down at every turn and still she is here with us. If I know my Kayla, she will get off those damn pain medicines she needs right now. She can do it. She just needs time. She needs home. She needs her friends filing in one by one through our home, lifting her spirit. She needs to get dressed up in some beautiful clothes and make up and go out dancing and dining. She needs to be a 26-year-old looking for a mate. She needs love and encouragement.
The next one speaks. It is David, her physical therapist. He has worked hard with her to get her walking again. His report details that she can walk independently with the BIVAD. She can pull along the luggage device and go up and down the hall and up and down stairs. At home she must increase activity and must be self-motivated. He is giving her a program to follow at home to gain physical strength. The stronger you are going in to the transplant, the easier it is after the surgery. One must be a self-starter.
Physical therapy will come to the house to help but a lot more is needed. A lot of walking...frequently! He details that walking around 4 to 5 times a day would be ideal. Motion and mobility is very important. Malls open early for walkers and there is air conditioning there. This would be a good place to go. She must walk with a purpose and walk for exercise.
Dr. Kent, the psychiatrist, spoke next. Kayla is "doing well" and coping with enormous amounts of medicines which are necessary and good to stay on for the time being. She no doubt has been through a terribly painful surgery (4 large canulars in her body as one part of this whole scenario) but it is getting better and better as she goes along. I asked, "What do I do if I run into trouble with more real pain? She is on so many narcotics." In the short term Kayla will need similar amounts that were needed in the hospital but long term there will be a tapering of the methadone. Dr. Kent spoke with Kayla's local psychiatrist, Dr. Ligorski, and he was willing and able to carry her forward.
Dr. Schuman, the pulmonologist, was next. Her lungs are stable he informed but the lower lobs are not ventilating well yet. She is sitting in bed too much and needs to move. Her blood pressures are stable 90/60 or 100/70. The pump totally supports her heart and supplements it. There is only prednisone now for immunosuppression. No other drugs are needed. The old heart is only a vessel for blood to be pushed through.
The BIVAD pump that she is on has been on the market for 15 years and is FDA (Federal Drug Administration) approved. It is a very successful device. Most of their patients are on the LVAD (Left Ventricular Assist Device). There are only 2 patients currently at Columbia on this BIVAD device. Both of Kayla's heart ventricles were severely compromised during the cardiac arrest on April 1. That was the reason for this device. At home we are to measure her blood pressure 3x a day.
Then it was back to a general overall discussion. Kayla is a re-transplant. This is much more complicated. Her body has waged a war against this first transplanted heart for 12 years. There is a build up of antibodies which are still in her system and will make things more complicated if and when she is lucky enough to get a new heart. At 14, with the first heart transplant, her body was brand new to this assault. Even with all the wonderful medicines, the body still cannot be tricked into thinking that the foreign heart belongs in it.
Kayla needs a certain size heart (she is a small woman) and a certain blood type - O positive (the most popularly needed blood type so the list is longer). They have to cross match antibodies. There is a certain period of time between transfusions where they continuously need to check her antibodies. The test is called the PRA - Panel Reactive Antibody.
The recap: at this time she is thriving on the device and getting stronger. Her last 6 weeks have been totally stable from the cardiac perspective. There is no need for an oxygen tank. Most importantly, the pneumatic device can handle warm weather but it cannot handle water. If there is rain, Kayla must not go out into it.
Dr. Uriel says we are looking to the future now and planning for it.
Wow! This is really going to happen. Kayla is destined to go home to wait for that coveted heart!
Listen to the don'ts.
Listen to the shouldn'ts,
the impossibles, the won'ts.
Listen to the never haves,
then listen close to me...
Anything can happen, child.
Anything can be."
Shel Silverstein
Short Synopsis: Kayla, Mike and I are doing extensive training to learn how to operate the VAD (Ventricular Assist Device) machine so we can take Kayla home to wait for a heart. If the machine fails, we have to be able to get her up and running quickly on a second machine. Her compromised transplanted heart cannot support her body in any way. It no longer can beat on its own. The trainers are excellent and we try our best. Today Kayla and I did an open book VAD test together to make sure our knowledge was sound. There is also a meeting with the team to go over all kinds of detail. Exciting but scary. Kayla is stable and ready for home. She has been here since the end of March.
Long Story: Kayla is ready to be discharged to go home to wait for a heart. There is excitement and fear all rolled into one. Kayla wants to be with her friends and be home again. She has been talking about it for days.
"The Inquisition"
Kayla, Mike and I are escorted into a medium-sized conference room. There is one big long table with about 12 chairs around it. It has taken a good deal of planning to get all of the different doctors to come with their current status reports on Kayla. Each will express what we are all hoping for in her future.
Dr. Uriel is the head heart transplant cardiologist on service and in charge of this hospital floor. He is the leader and a clear thinker and speaker. He starts out saying that there is a clear need for a second heart. Kayla is stable from a cardiothoracic perspective. She has been in the hospital for 10 weeks and has had this pump for 6 and is doing well with it. The meeting is all about what we need to do to be ready for the transplant. The inquisition? Dr. Uriel expresses that the pain killers are a very big limitation to getting a transplant. The amount Kayla is currently on, including the methodone, will cause a lot of problems. We need to limit the number of people (outside doctors) who can prescribe these pain meds so we can see exactly what she is using. She has kept a "pain journal" in the past. In it, she records what pain she has and what she uses to help that pain. He has discussed this major problem openly with her many times and has let her know she cannot get a transplant with her current level of meds.
I like this man! Kayla has a hooded expression on her face. Her eyes are darkening and she is sinking into her wheel chair. What they don't know about our Kayla is that she is strong, probably one of the strongest people I know. I would have checked out a long time ago with this life. I cannot believe she is even here with us and how often she has beaten the odds by the thinnest of surviving threads. There are very few people who make it 12 years past their first transplant, nevermind, being here all ready to receive a second one. She has weathered numerous overwhelming heart failures and has suffered three strokes. People think you get a heart and it's all hunky dory...that your life is normal. It's all about getting the most out of that newly transplanted heart as possible. It's a waiting game. You squeeze as much life as possible with meds, doctoring, repeat hospitalizations due to immunosuppression, etc... It's all about desire to live.
The pain medications help her cope with incredible amounts of physical and psychological pain, more than any of us have had to go through our entire lives. Kayla is an inspiration to all of us not to give up even though every day she wants to. She continues to be a walking miracle and Columbia is excited to have someone like her. She defies all the odds every day, every hour, every minute. She is still a breathing spirited girl who wants what every else easily has....a normal life.
Kayla is angry all the time, angry at her predicament, angry at her unfair life. She started out with so much confidence and has been knocked down at every turn and still she is here with us. If I know my Kayla, she will get off those damn pain medicines she needs right now. She can do it. She just needs time. She needs home. She needs her friends filing in one by one through our home, lifting her spirit. She needs to get dressed up in some beautiful clothes and make up and go out dancing and dining. She needs to be a 26-year-old looking for a mate. She needs love and encouragement.
The next one speaks. It is David, her physical therapist. He has worked hard with her to get her walking again. His report details that she can walk independently with the BIVAD. She can pull along the luggage device and go up and down the hall and up and down stairs. At home she must increase activity and must be self-motivated. He is giving her a program to follow at home to gain physical strength. The stronger you are going in to the transplant, the easier it is after the surgery. One must be a self-starter.
Physical therapy will come to the house to help but a lot more is needed. A lot of walking...frequently! He details that walking around 4 to 5 times a day would be ideal. Motion and mobility is very important. Malls open early for walkers and there is air conditioning there. This would be a good place to go. She must walk with a purpose and walk for exercise.
Dr. Kent, the psychiatrist, spoke next. Kayla is "doing well" and coping with enormous amounts of medicines which are necessary and good to stay on for the time being. She no doubt has been through a terribly painful surgery (4 large canulars in her body as one part of this whole scenario) but it is getting better and better as she goes along. I asked, "What do I do if I run into trouble with more real pain? She is on so many narcotics." In the short term Kayla will need similar amounts that were needed in the hospital but long term there will be a tapering of the methadone. Dr. Kent spoke with Kayla's local psychiatrist, Dr. Ligorski, and he was willing and able to carry her forward.
Dr. Schuman, the pulmonologist, was next. Her lungs are stable he informed but the lower lobs are not ventilating well yet. She is sitting in bed too much and needs to move. Her blood pressures are stable 90/60 or 100/70. The pump totally supports her heart and supplements it. There is only prednisone now for immunosuppression. No other drugs are needed. The old heart is only a vessel for blood to be pushed through.
The BIVAD pump that she is on has been on the market for 15 years and is FDA (Federal Drug Administration) approved. It is a very successful device. Most of their patients are on the LVAD (Left Ventricular Assist Device). There are only 2 patients currently at Columbia on this BIVAD device. Both of Kayla's heart ventricles were severely compromised during the cardiac arrest on April 1. That was the reason for this device. At home we are to measure her blood pressure 3x a day.
Then it was back to a general overall discussion. Kayla is a re-transplant. This is much more complicated. Her body has waged a war against this first transplanted heart for 12 years. There is a build up of antibodies which are still in her system and will make things more complicated if and when she is lucky enough to get a new heart. At 14, with the first heart transplant, her body was brand new to this assault. Even with all the wonderful medicines, the body still cannot be tricked into thinking that the foreign heart belongs in it.
Kayla needs a certain size heart (she is a small woman) and a certain blood type - O positive (the most popularly needed blood type so the list is longer). They have to cross match antibodies. There is a certain period of time between transfusions where they continuously need to check her antibodies. The test is called the PRA - Panel Reactive Antibody.
The recap: at this time she is thriving on the device and getting stronger. Her last 6 weeks have been totally stable from the cardiac perspective. There is no need for an oxygen tank. Most importantly, the pneumatic device can handle warm weather but it cannot handle water. If there is rain, Kayla must not go out into it.
Dr. Uriel says we are looking to the future now and planning for it.
Wow! This is really going to happen. Kayla is destined to go home to wait for that coveted heart!
No comments:
Post a Comment