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Patiently Waiting for a Call
- Thread starter cnsky54RRT
- Start date
cnsky54RRT
New member
August 18th: Two weeks ago I went to see Heather in the hospital just after she came off the vent again. It gave her parents time off to leave the place, and she and I visited for 12 hours or more. It was good to catch up on things, and I helped her with lunch and a back rub. Some med was making her really itchy, and she could not get enough scratching in places she could not reach!
I was warned by her mom that she had a large pressure ulcer on one cheek, from the endotracheal tube holder. I thought that odd, I have never seen that in my years of work, and why only on one cheek? It was a large, black, oozing scab on the right, rather ugly and obviously itchy. Wound care nurse came in to look at it. Also, the Infection Control docs were in to take a sample. Bad news - it was analyzed as mucormycoses, a virulent fungal infection that attacks those with bad immune systems, diabetes, or lots of steroids on board. Usually the compromised inhale it and it grows in the sinuses, but this had settled on her cheek. With that diagnosis, things started to move very fast there. The food tray I was feeding her from was taken away abruptly as she was going to be back in the OR that night to have the fungal areas removed. This is a bad infection - if it gets into the blood stream it is generally fatal within days. The docs wasted no time getting it off. There was a CT scan to make sure it was not in the facial bones, a scope down her nose to look for the black fungus, but thankfully none there. That would have been imminently fatal, with spores having access to the brain. I left to come home about 10pm as she was wheeled to the OR to have the Plastic Surgeon who came in specially to see her remove all the affected tissue.
Her mother called me to say that the operation was a success, but that the Plastic Surgeon estimated another ten operations to fill in the crater she now had on her face.
Next morning, her mother calls to ask me what bipap settings to use - Heather is having trouble breathing and her lungs are wet on the xray. By afternoon she was intubated again. A bronchoscopy showed no sign of fungus in her lungs, but there was an infection and signs of rejection damage. A day later there was another operation for some additional fungus on her cheek. She had received dialysis for non-functional kidneys, and then they gave her infusions of IVIG, a horrifically expensive med to take over her immune response. That seemed to work for a few days, but then again her white blood cells were out of control and she had a high fever, needing lots of oxygen support.
And so....
Today Heather died at 3pm. I was there with her, and her family and a couple of school friends. Nothing more could have been done, and her parents decided that it was time to withdraw care. She peacefully went to sleep, her heart slowed and stopped. I had arrived early enough to spend some time with her. She was unconscious, but I held her hand and talked to her for awhile. She still had the rosy cheeks I remember after her transplant, a wonderful colour on her. I looked at the vent and saw by the readings and measurements that her lungs were in extreme distress, the type that has us call in families where I work.
I am glad to have a week off work, because I do not think I can function at this time. I will instead walk the hills, sit by the river and heal. Her service is next Saturday, and I will be playing a jazz waltz on guitar that I wrote for her, simply called 'Heather's Waltz'. Fortunately she heard it in the hospital weeks ago. I had hoped to play it at her wedding reception...
I will still be teaching her eight-year-old daughter Mackinzie guitar lessons, and two weeks ago I promised Heather that when the time came, I would pay to get Kinzie the needed braces and orthodontic work so she can have her mother's smile. I hear that can be pretty spendy, and the grandparents who now have Kinzie aren't quite that flush, so I better start saving now!
It has been a roller-coaster four months, and you have seen it all. Despite our painful outcome, I know Heather would not want it to discourage anyone considering this big step. It did not turn out as we wanted, but she had days to be outside with her daughter in the fresh air with no nasal cannula or inhalers. She knew there was a risk here, and went into it enthusiastically. For all you out there waiting, I wish you wonderful success and years of health...
I was warned by her mom that she had a large pressure ulcer on one cheek, from the endotracheal tube holder. I thought that odd, I have never seen that in my years of work, and why only on one cheek? It was a large, black, oozing scab on the right, rather ugly and obviously itchy. Wound care nurse came in to look at it. Also, the Infection Control docs were in to take a sample. Bad news - it was analyzed as mucormycoses, a virulent fungal infection that attacks those with bad immune systems, diabetes, or lots of steroids on board. Usually the compromised inhale it and it grows in the sinuses, but this had settled on her cheek. With that diagnosis, things started to move very fast there. The food tray I was feeding her from was taken away abruptly as she was going to be back in the OR that night to have the fungal areas removed. This is a bad infection - if it gets into the blood stream it is generally fatal within days. The docs wasted no time getting it off. There was a CT scan to make sure it was not in the facial bones, a scope down her nose to look for the black fungus, but thankfully none there. That would have been imminently fatal, with spores having access to the brain. I left to come home about 10pm as she was wheeled to the OR to have the Plastic Surgeon who came in specially to see her remove all the affected tissue.
Her mother called me to say that the operation was a success, but that the Plastic Surgeon estimated another ten operations to fill in the crater she now had on her face.
Next morning, her mother calls to ask me what bipap settings to use - Heather is having trouble breathing and her lungs are wet on the xray. By afternoon she was intubated again. A bronchoscopy showed no sign of fungus in her lungs, but there was an infection and signs of rejection damage. A day later there was another operation for some additional fungus on her cheek. She had received dialysis for non-functional kidneys, and then they gave her infusions of IVIG, a horrifically expensive med to take over her immune response. That seemed to work for a few days, but then again her white blood cells were out of control and she had a high fever, needing lots of oxygen support.
And so....
Today Heather died at 3pm. I was there with her, and her family and a couple of school friends. Nothing more could have been done, and her parents decided that it was time to withdraw care. She peacefully went to sleep, her heart slowed and stopped. I had arrived early enough to spend some time with her. She was unconscious, but I held her hand and talked to her for awhile. She still had the rosy cheeks I remember after her transplant, a wonderful colour on her. I looked at the vent and saw by the readings and measurements that her lungs were in extreme distress, the type that has us call in families where I work.
I am glad to have a week off work, because I do not think I can function at this time. I will instead walk the hills, sit by the river and heal. Her service is next Saturday, and I will be playing a jazz waltz on guitar that I wrote for her, simply called 'Heather's Waltz'. Fortunately she heard it in the hospital weeks ago. I had hoped to play it at her wedding reception...
I will still be teaching her eight-year-old daughter Mackinzie guitar lessons, and two weeks ago I promised Heather that when the time came, I would pay to get Kinzie the needed braces and orthodontic work so she can have her mother's smile. I hear that can be pretty spendy, and the grandparents who now have Kinzie aren't quite that flush, so I better start saving now!
It has been a roller-coaster four months, and you have seen it all. Despite our painful outcome, I know Heather would not want it to discourage anyone considering this big step. It did not turn out as we wanted, but she had days to be outside with her daughter in the fresh air with no nasal cannula or inhalers. She knew there was a risk here, and went into it enthusiastically. For all you out there waiting, I wish you wonderful success and years of health...
cnsky54RRT
New member
August 18th: Two weeks ago I went to see Heather in the hospital just after she came off the vent again. It gave her parents time off to leave the place, and she and I visited for 12 hours or more. It was good to catch up on things, and I helped her with lunch and a back rub. Some med was making her really itchy, and she could not get enough scratching in places she could not reach!
I was warned by her mom that she had a large pressure ulcer on one cheek, from the endotracheal tube holder. I thought that odd, I have never seen that in my years of work, and why only on one cheek? It was a large, black, oozing scab on the right, rather ugly and obviously itchy. Wound care nurse came in to look at it. Also, the Infection Control docs were in to take a sample. Bad news - it was analyzed as mucormycoses, a virulent fungal infection that attacks those with bad immune systems, diabetes, or lots of steroids on board. Usually the compromised inhale it and it grows in the sinuses, but this had settled on her cheek. With that diagnosis, things started to move very fast there. The food tray I was feeding her from was taken away abruptly as she was going to be back in the OR that night to have the fungal areas removed. This is a bad infection - if it gets into the blood stream it is generally fatal within days. The docs wasted no time getting it off. There was a CT scan to make sure it was not in the facial bones, a scope down her nose to look for the black fungus, but thankfully none there. That would have been imminently fatal, with spores having access to the brain. I left to come home about 10pm as she was wheeled to the OR to have the Plastic Surgeon who came in specially to see her remove all the affected tissue.
Her mother called me to say that the operation was a success, but that the Plastic Surgeon estimated another ten operations to fill in the crater she now had on her face.
Next morning, her mother calls to ask me what bipap settings to use - Heather is having trouble breathing and her lungs are wet on the xray. By afternoon she was intubated again. A bronchoscopy showed no sign of fungus in her lungs, but there was an infection and signs of rejection damage. A day later there was another operation for some additional fungus on her cheek. She had received dialysis for non-functional kidneys, and then they gave her infusions of IVIG, a horrifically expensive med to take over her immune response. That seemed to work for a few days, but then again her white blood cells were out of control and she had a high fever, needing lots of oxygen support.
And so....
Today Heather died at 3pm. I was there with her, and her family and a couple of school friends. Nothing more could have been done, and her parents decided that it was time to withdraw care. She peacefully went to sleep, her heart slowed and stopped. I had arrived early enough to spend some time with her. She was unconscious, but I held her hand and talked to her for awhile. She still had the rosy cheeks I remember after her transplant, a wonderful colour on her. I looked at the vent and saw by the readings and measurements that her lungs were in extreme distress, the type that has us call in families where I work.
I am glad to have a week off work, because I do not think I can function at this time. I will instead walk the hills, sit by the river and heal. Her service is next Saturday, and I will be playing a jazz waltz on guitar that I wrote for her, simply called 'Heather's Waltz'. Fortunately she heard it in the hospital weeks ago. I had hoped to play it at her wedding reception...
I will still be teaching her eight-year-old daughter Mackinzie guitar lessons, and two weeks ago I promised Heather that when the time came, I would pay to get Kinzie the needed braces and orthodontic work so she can have her mother's smile. I hear that can be pretty spendy, and the grandparents who now have Kinzie aren't quite that flush, so I better start saving now!
It has been a roller-coaster four months, and you have seen it all. Despite our painful outcome, I know Heather would not want it to discourage anyone considering this big step. It did not turn out as we wanted, but she had days to be outside with her daughter in the fresh air with no nasal cannula or inhalers. She knew there was a risk here, and went into it enthusiastically. For all you out there waiting, I wish you wonderful success and years of health...
I was warned by her mom that she had a large pressure ulcer on one cheek, from the endotracheal tube holder. I thought that odd, I have never seen that in my years of work, and why only on one cheek? It was a large, black, oozing scab on the right, rather ugly and obviously itchy. Wound care nurse came in to look at it. Also, the Infection Control docs were in to take a sample. Bad news - it was analyzed as mucormycoses, a virulent fungal infection that attacks those with bad immune systems, diabetes, or lots of steroids on board. Usually the compromised inhale it and it grows in the sinuses, but this had settled on her cheek. With that diagnosis, things started to move very fast there. The food tray I was feeding her from was taken away abruptly as she was going to be back in the OR that night to have the fungal areas removed. This is a bad infection - if it gets into the blood stream it is generally fatal within days. The docs wasted no time getting it off. There was a CT scan to make sure it was not in the facial bones, a scope down her nose to look for the black fungus, but thankfully none there. That would have been imminently fatal, with spores having access to the brain. I left to come home about 10pm as she was wheeled to the OR to have the Plastic Surgeon who came in specially to see her remove all the affected tissue.
Her mother called me to say that the operation was a success, but that the Plastic Surgeon estimated another ten operations to fill in the crater she now had on her face.
Next morning, her mother calls to ask me what bipap settings to use - Heather is having trouble breathing and her lungs are wet on the xray. By afternoon she was intubated again. A bronchoscopy showed no sign of fungus in her lungs, but there was an infection and signs of rejection damage. A day later there was another operation for some additional fungus on her cheek. She had received dialysis for non-functional kidneys, and then they gave her infusions of IVIG, a horrifically expensive med to take over her immune response. That seemed to work for a few days, but then again her white blood cells were out of control and she had a high fever, needing lots of oxygen support.
And so....
Today Heather died at 3pm. I was there with her, and her family and a couple of school friends. Nothing more could have been done, and her parents decided that it was time to withdraw care. She peacefully went to sleep, her heart slowed and stopped. I had arrived early enough to spend some time with her. She was unconscious, but I held her hand and talked to her for awhile. She still had the rosy cheeks I remember after her transplant, a wonderful colour on her. I looked at the vent and saw by the readings and measurements that her lungs were in extreme distress, the type that has us call in families where I work.
I am glad to have a week off work, because I do not think I can function at this time. I will instead walk the hills, sit by the river and heal. Her service is next Saturday, and I will be playing a jazz waltz on guitar that I wrote for her, simply called 'Heather's Waltz'. Fortunately she heard it in the hospital weeks ago. I had hoped to play it at her wedding reception...
I will still be teaching her eight-year-old daughter Mackinzie guitar lessons, and two weeks ago I promised Heather that when the time came, I would pay to get Kinzie the needed braces and orthodontic work so she can have her mother's smile. I hear that can be pretty spendy, and the grandparents who now have Kinzie aren't quite that flush, so I better start saving now!
It has been a roller-coaster four months, and you have seen it all. Despite our painful outcome, I know Heather would not want it to discourage anyone considering this big step. It did not turn out as we wanted, but she had days to be outside with her daughter in the fresh air with no nasal cannula or inhalers. She knew there was a risk here, and went into it enthusiastically. For all you out there waiting, I wish you wonderful success and years of health...
cnsky54RRT
New member
August 18th: Two weeks ago I went to see Heather in the hospital just after she came off the vent again. It gave her parents time off to leave the place, and she and I visited for 12 hours or more. It was good to catch up on things, and I helped her with lunch and a back rub. Some med was making her really itchy, and she could not get enough scratching in places she could not reach!
<br />
<br />I was warned by her mom that she had a large pressure ulcer on one cheek, from the endotracheal tube holder. I thought that odd, I have never seen that in my years of work, and why only on one cheek? It was a large, black, oozing scab on the right, rather ugly and obviously itchy. Wound care nurse came in to look at it. Also, the Infection Control docs were in to take a sample. Bad news - it was analyzed as mucormycoses, a virulent fungal infection that attacks those with bad immune systems, diabetes, or lots of steroids on board. Usually the compromised inhale it and it grows in the sinuses, but this had settled on her cheek. With that diagnosis, things started to move very fast there. The food tray I was feeding her from was taken away abruptly as she was going to be back in the OR that night to have the fungal areas removed. This is a bad infection - if it gets into the blood stream it is generally fatal within days. The docs wasted no time getting it off. There was a CT scan to make sure it was not in the facial bones, a scope down her nose to look for the black fungus, but thankfully none there. That would have been imminently fatal, with spores having access to the brain. I left to come home about 10pm as she was wheeled to the OR to have the Plastic Surgeon who came in specially to see her remove all the affected tissue.
<br />
<br />Her mother called me to say that the operation was a success, but that the Plastic Surgeon estimated another ten operations to fill in the crater she now had on her face.
<br />
<br />Next morning, her mother calls to ask me what bipap settings to use - Heather is having trouble breathing and her lungs are wet on the xray. By afternoon she was intubated again. A bronchoscopy showed no sign of fungus in her lungs, but there was an infection and signs of rejection damage. A day later there was another operation for some additional fungus on her cheek. She had received dialysis for non-functional kidneys, and then they gave her infusions of IVIG, a horrifically expensive med to take over her immune response. That seemed to work for a few days, but then again her white blood cells were out of control and she had a high fever, needing lots of oxygen support.
<br />
<br />And so....
<br />
<br />Today Heather died at 3pm. I was there with her, and her family and a couple of school friends. Nothing more could have been done, and her parents decided that it was time to withdraw care. She peacefully went to sleep, her heart slowed and stopped. I had arrived early enough to spend some time with her. She was unconscious, but I held her hand and talked to her for awhile. She still had the rosy cheeks I remember after her transplant, a wonderful colour on her. I looked at the vent and saw by the readings and measurements that her lungs were in extreme distress, the type that has us call in families where I work.
<br />
<br />I am glad to have a week off work, because I do not think I can function at this time. I will instead walk the hills, sit by the river and heal. Her service is next Saturday, and I will be playing a jazz waltz on guitar that I wrote for her, simply called 'Heather's Waltz'. Fortunately she heard it in the hospital weeks ago. I had hoped to play it at her wedding reception...
<br />
<br />I will still be teaching her eight-year-old daughter Mackinzie guitar lessons, and two weeks ago I promised Heather that when the time came, I would pay to get Kinzie the needed braces and orthodontic work so she can have her mother's smile. I hear that can be pretty spendy, and the grandparents who now have Kinzie aren't quite that flush, so I better start saving now!
<br />
<br />It has been a roller-coaster four months, and you have seen it all. Despite our painful outcome, I know Heather would not want it to discourage anyone considering this big step. It did not turn out as we wanted, but she had days to be outside with her daughter in the fresh air with no nasal cannula or inhalers. She knew there was a risk here, and went into it enthusiastically. For all you out there waiting, I wish you wonderful success and years of health...
<br />
<br />I was warned by her mom that she had a large pressure ulcer on one cheek, from the endotracheal tube holder. I thought that odd, I have never seen that in my years of work, and why only on one cheek? It was a large, black, oozing scab on the right, rather ugly and obviously itchy. Wound care nurse came in to look at it. Also, the Infection Control docs were in to take a sample. Bad news - it was analyzed as mucormycoses, a virulent fungal infection that attacks those with bad immune systems, diabetes, or lots of steroids on board. Usually the compromised inhale it and it grows in the sinuses, but this had settled on her cheek. With that diagnosis, things started to move very fast there. The food tray I was feeding her from was taken away abruptly as she was going to be back in the OR that night to have the fungal areas removed. This is a bad infection - if it gets into the blood stream it is generally fatal within days. The docs wasted no time getting it off. There was a CT scan to make sure it was not in the facial bones, a scope down her nose to look for the black fungus, but thankfully none there. That would have been imminently fatal, with spores having access to the brain. I left to come home about 10pm as she was wheeled to the OR to have the Plastic Surgeon who came in specially to see her remove all the affected tissue.
<br />
<br />Her mother called me to say that the operation was a success, but that the Plastic Surgeon estimated another ten operations to fill in the crater she now had on her face.
<br />
<br />Next morning, her mother calls to ask me what bipap settings to use - Heather is having trouble breathing and her lungs are wet on the xray. By afternoon she was intubated again. A bronchoscopy showed no sign of fungus in her lungs, but there was an infection and signs of rejection damage. A day later there was another operation for some additional fungus on her cheek. She had received dialysis for non-functional kidneys, and then they gave her infusions of IVIG, a horrifically expensive med to take over her immune response. That seemed to work for a few days, but then again her white blood cells were out of control and she had a high fever, needing lots of oxygen support.
<br />
<br />And so....
<br />
<br />Today Heather died at 3pm. I was there with her, and her family and a couple of school friends. Nothing more could have been done, and her parents decided that it was time to withdraw care. She peacefully went to sleep, her heart slowed and stopped. I had arrived early enough to spend some time with her. She was unconscious, but I held her hand and talked to her for awhile. She still had the rosy cheeks I remember after her transplant, a wonderful colour on her. I looked at the vent and saw by the readings and measurements that her lungs were in extreme distress, the type that has us call in families where I work.
<br />
<br />I am glad to have a week off work, because I do not think I can function at this time. I will instead walk the hills, sit by the river and heal. Her service is next Saturday, and I will be playing a jazz waltz on guitar that I wrote for her, simply called 'Heather's Waltz'. Fortunately she heard it in the hospital weeks ago. I had hoped to play it at her wedding reception...
<br />
<br />I will still be teaching her eight-year-old daughter Mackinzie guitar lessons, and two weeks ago I promised Heather that when the time came, I would pay to get Kinzie the needed braces and orthodontic work so she can have her mother's smile. I hear that can be pretty spendy, and the grandparents who now have Kinzie aren't quite that flush, so I better start saving now!
<br />
<br />It has been a roller-coaster four months, and you have seen it all. Despite our painful outcome, I know Heather would not want it to discourage anyone considering this big step. It did not turn out as we wanted, but she had days to be outside with her daughter in the fresh air with no nasal cannula or inhalers. She knew there was a risk here, and went into it enthusiastically. For all you out there waiting, I wish you wonderful success and years of health...
I am in tears reading this, I have been following Heather's journey for the last few months and am saddened that she did not make it and had such a difficult road to travel. I am glad that she found romance and a chance to love again even if it was just a glimpse in time and that she had you as her friend. You obviously cared for her tremendously. Sending hugs and prayers of comfort your way as well as to her friends and family. Just by reading what you wrote about her, she must have had an amazing spirit.
Gentle hugs, Jenn 39 w/CF
Gentle hugs, Jenn 39 w/CF
I am in tears reading this, I have been following Heather's journey for the last few months and am saddened that she did not make it and had such a difficult road to travel. I am glad that she found romance and a chance to love again even if it was just a glimpse in time and that she had you as her friend. You obviously cared for her tremendously. Sending hugs and prayers of comfort your way as well as to her friends and family. Just by reading what you wrote about her, she must have had an amazing spirit.
Gentle hugs, Jenn 39 w/CF
Gentle hugs, Jenn 39 w/CF
I am in tears reading this, I have been following Heather's journey for the last few months and am saddened that she did not make it and had such a difficult road to travel. I am glad that she found romance and a chance to love again even if it was just a glimpse in time and that she had you as her friend. You obviously cared for her tremendously. Sending hugs and prayers of comfort your way as well as to her friends and family. Just by reading what you wrote about her, she must have had an amazing spirit.
<br />Gentle hugs, Jenn 39 w/CF
<br />Gentle hugs, Jenn 39 w/CF
cnsky54RRT
New member
So here it is, Saturday, and Heather's funeral gathering is in two hours. I am supposed to get up and speak to what will be a large crowd, and I'm still not sure what I am going to say. How do I condense a wonderful life down into meanings? Her daughter Mackinzie and I are going to do our duet as well, she singing and me with a guitar. We had a practice the other night and it went rather well, though Mackinzie the perfectionist wasn't totally happy.
I am still in the anger/bargaining stage of grief, not able to accept what has happened, and angry that medicine is not yet able to give Heather what she needed. Every day in the ER and ICU I patch up drug overdoses, little gang-bangers with their knife wounds and gunshots, various other drains on society, and send them back out into the world to carry on and reproduce more of their kind. And this wonderful lady who deserved such a better shot at life is gone away. Medical research needs funds to discover cures, but we pay tall athletes millions to throw a ball back and forth and through nets. It feels to me like we have let down those who were most vulnerable.
Alas, time to change and load the car up with musical gear. Time to face my sorrow in public...
I am still in the anger/bargaining stage of grief, not able to accept what has happened, and angry that medicine is not yet able to give Heather what she needed. Every day in the ER and ICU I patch up drug overdoses, little gang-bangers with their knife wounds and gunshots, various other drains on society, and send them back out into the world to carry on and reproduce more of their kind. And this wonderful lady who deserved such a better shot at life is gone away. Medical research needs funds to discover cures, but we pay tall athletes millions to throw a ball back and forth and through nets. It feels to me like we have let down those who were most vulnerable.
Alas, time to change and load the car up with musical gear. Time to face my sorrow in public...
cnsky54RRT
New member
So here it is, Saturday, and Heather's funeral gathering is in two hours. I am supposed to get up and speak to what will be a large crowd, and I'm still not sure what I am going to say. How do I condense a wonderful life down into meanings? Her daughter Mackinzie and I are going to do our duet as well, she singing and me with a guitar. We had a practice the other night and it went rather well, though Mackinzie the perfectionist wasn't totally happy.
I am still in the anger/bargaining stage of grief, not able to accept what has happened, and angry that medicine is not yet able to give Heather what she needed. Every day in the ER and ICU I patch up drug overdoses, little gang-bangers with their knife wounds and gunshots, various other drains on society, and send them back out into the world to carry on and reproduce more of their kind. And this wonderful lady who deserved such a better shot at life is gone away. Medical research needs funds to discover cures, but we pay tall athletes millions to throw a ball back and forth and through nets. It feels to me like we have let down those who were most vulnerable.
Alas, time to change and load the car up with musical gear. Time to face my sorrow in public...
I am still in the anger/bargaining stage of grief, not able to accept what has happened, and angry that medicine is not yet able to give Heather what she needed. Every day in the ER and ICU I patch up drug overdoses, little gang-bangers with their knife wounds and gunshots, various other drains on society, and send them back out into the world to carry on and reproduce more of their kind. And this wonderful lady who deserved such a better shot at life is gone away. Medical research needs funds to discover cures, but we pay tall athletes millions to throw a ball back and forth and through nets. It feels to me like we have let down those who were most vulnerable.
Alas, time to change and load the car up with musical gear. Time to face my sorrow in public...
cnsky54RRT
New member
So here it is, Saturday, and Heather's funeral gathering is in two hours. I am supposed to get up and speak to what will be a large crowd, and I'm still not sure what I am going to say. How do I condense a wonderful life down into meanings? Her daughter Mackinzie and I are going to do our duet as well, she singing and me with a guitar. We had a practice the other night and it went rather well, though Mackinzie the perfectionist wasn't totally happy.
<br />
<br />I am still in the anger/bargaining stage of grief, not able to accept what has happened, and angry that medicine is not yet able to give Heather what she needed. Every day in the ER and ICU I patch up drug overdoses, little gang-bangers with their knife wounds and gunshots, various other drains on society, and send them back out into the world to carry on and reproduce more of their kind. And this wonderful lady who deserved such a better shot at life is gone away. Medical research needs funds to discover cures, but we pay tall athletes millions to throw a ball back and forth and through nets. It feels to me like we have let down those who were most vulnerable.
<br />
<br />Alas, time to change and load the car up with musical gear. Time to face my sorrow in public...
<br />
<br />I am still in the anger/bargaining stage of grief, not able to accept what has happened, and angry that medicine is not yet able to give Heather what she needed. Every day in the ER and ICU I patch up drug overdoses, little gang-bangers with their knife wounds and gunshots, various other drains on society, and send them back out into the world to carry on and reproduce more of their kind. And this wonderful lady who deserved such a better shot at life is gone away. Medical research needs funds to discover cures, but we pay tall athletes millions to throw a ball back and forth and through nets. It feels to me like we have let down those who were most vulnerable.
<br />
<br />Alas, time to change and load the car up with musical gear. Time to face my sorrow in public...
cnsky54RRT
New member
And the service was quite beautiful. Many, many people there. We had a continuous photo show of Heather on the large screen, her mom made it through a tearful eulogy, and the music went very well. It was a fine opportunity to meet her large and extended family who had flown in from all over.
And then, into the late night, there was a celebration at Heather's parent's place in their massive front yard with many people staying on in the dark to talk and laugh and tell stories. At some point Mackinzie came to find me because she wanted to do a repeat of her song from the service, Miley Cyrus' 'The Climb', which had become Heather's theme song this last year. Someone threw me an acoustic guitar and we performed it on the porch to much applause.
A sad and poignant ending to Heather's struggle, but she will never be forgotten.
There has been a tragic post-script to it, as another one of our lovely CF ladies passed away a week after Heather in the same hospital. Brooke was 22, had a transplant at 16, rejected, and got a second set of lungs. She has had troubles lately with her kidneys and liver, and has been on dialysis and became jaundiced. She declined rapidly on Wednesday and was gone Thursday, having decided she did not want to take the offer of a liver transplant. She had fought enough for one lifetime, and could take no more. She and Heather knew each other, but could only talk on the phone and never visit due to having different infectious agents, and not wanting to pass the bugs between them. Rest easy, Brooke, we won't forget you either...
And then, into the late night, there was a celebration at Heather's parent's place in their massive front yard with many people staying on in the dark to talk and laugh and tell stories. At some point Mackinzie came to find me because she wanted to do a repeat of her song from the service, Miley Cyrus' 'The Climb', which had become Heather's theme song this last year. Someone threw me an acoustic guitar and we performed it on the porch to much applause.
A sad and poignant ending to Heather's struggle, but she will never be forgotten.
There has been a tragic post-script to it, as another one of our lovely CF ladies passed away a week after Heather in the same hospital. Brooke was 22, had a transplant at 16, rejected, and got a second set of lungs. She has had troubles lately with her kidneys and liver, and has been on dialysis and became jaundiced. She declined rapidly on Wednesday and was gone Thursday, having decided she did not want to take the offer of a liver transplant. She had fought enough for one lifetime, and could take no more. She and Heather knew each other, but could only talk on the phone and never visit due to having different infectious agents, and not wanting to pass the bugs between them. Rest easy, Brooke, we won't forget you either...
cnsky54RRT
New member
And the service was quite beautiful. Many, many people there. We had a continuous photo show of Heather on the large screen, her mom made it through a tearful eulogy, and the music went very well. It was a fine opportunity to meet her large and extended family who had flown in from all over.
And then, into the late night, there was a celebration at Heather's parent's place in their massive front yard with many people staying on in the dark to talk and laugh and tell stories. At some point Mackinzie came to find me because she wanted to do a repeat of her song from the service, Miley Cyrus' 'The Climb', which had become Heather's theme song this last year. Someone threw me an acoustic guitar and we performed it on the porch to much applause.
A sad and poignant ending to Heather's struggle, but she will never be forgotten.
There has been a tragic post-script to it, as another one of our lovely CF ladies passed away a week after Heather in the same hospital. Brooke was 22, had a transplant at 16, rejected, and got a second set of lungs. She has had troubles lately with her kidneys and liver, and has been on dialysis and became jaundiced. She declined rapidly on Wednesday and was gone Thursday, having decided she did not want to take the offer of a liver transplant. She had fought enough for one lifetime, and could take no more. She and Heather knew each other, but could only talk on the phone and never visit due to having different infectious agents, and not wanting to pass the bugs between them. Rest easy, Brooke, we won't forget you either...
And then, into the late night, there was a celebration at Heather's parent's place in their massive front yard with many people staying on in the dark to talk and laugh and tell stories. At some point Mackinzie came to find me because she wanted to do a repeat of her song from the service, Miley Cyrus' 'The Climb', which had become Heather's theme song this last year. Someone threw me an acoustic guitar and we performed it on the porch to much applause.
A sad and poignant ending to Heather's struggle, but she will never be forgotten.
There has been a tragic post-script to it, as another one of our lovely CF ladies passed away a week after Heather in the same hospital. Brooke was 22, had a transplant at 16, rejected, and got a second set of lungs. She has had troubles lately with her kidneys and liver, and has been on dialysis and became jaundiced. She declined rapidly on Wednesday and was gone Thursday, having decided she did not want to take the offer of a liver transplant. She had fought enough for one lifetime, and could take no more. She and Heather knew each other, but could only talk on the phone and never visit due to having different infectious agents, and not wanting to pass the bugs between them. Rest easy, Brooke, we won't forget you either...
cnsky54RRT
New member
And the service was quite beautiful. Many, many people there. We had a continuous photo show of Heather on the large screen, her mom made it through a tearful eulogy, and the music went very well. It was a fine opportunity to meet her large and extended family who had flown in from all over.
<br />
<br />And then, into the late night, there was a celebration at Heather's parent's place in their massive front yard with many people staying on in the dark to talk and laugh and tell stories. At some point Mackinzie came to find me because she wanted to do a repeat of her song from the service, Miley Cyrus' 'The Climb', which had become Heather's theme song this last year. Someone threw me an acoustic guitar and we performed it on the porch to much applause.
<br />
<br />A sad and poignant ending to Heather's struggle, but she will never be forgotten.
<br />
<br />There has been a tragic post-script to it, as another one of our lovely CF ladies passed away a week after Heather in the same hospital. Brooke was 22, had a transplant at 16, rejected, and got a second set of lungs. She has had troubles lately with her kidneys and liver, and has been on dialysis and became jaundiced. She declined rapidly on Wednesday and was gone Thursday, having decided she did not want to take the offer of a liver transplant. She had fought enough for one lifetime, and could take no more. She and Heather knew each other, but could only talk on the phone and never visit due to having different infectious agents, and not wanting to pass the bugs between them. Rest easy, Brooke, we won't forget you either...
<br />
<br />And then, into the late night, there was a celebration at Heather's parent's place in their massive front yard with many people staying on in the dark to talk and laugh and tell stories. At some point Mackinzie came to find me because she wanted to do a repeat of her song from the service, Miley Cyrus' 'The Climb', which had become Heather's theme song this last year. Someone threw me an acoustic guitar and we performed it on the porch to much applause.
<br />
<br />A sad and poignant ending to Heather's struggle, but she will never be forgotten.
<br />
<br />There has been a tragic post-script to it, as another one of our lovely CF ladies passed away a week after Heather in the same hospital. Brooke was 22, had a transplant at 16, rejected, and got a second set of lungs. She has had troubles lately with her kidneys and liver, and has been on dialysis and became jaundiced. She declined rapidly on Wednesday and was gone Thursday, having decided she did not want to take the offer of a liver transplant. She had fought enough for one lifetime, and could take no more. She and Heather knew each other, but could only talk on the phone and never visit due to having different infectious agents, and not wanting to pass the bugs between them. Rest easy, Brooke, we won't forget you either...
musclemania70
New member
So sorry to hear of your loss. A few weeks ago, I lossed a loved one and the pain is never easy.
No words can express the hurt that you or her family are experiencing.
Use the people around you to hold you up and their strength to help you through.
Without love and people in our lives to touch us, life is meaningless.
I can't imagine how much your support meant to her in her most difficult time.
Praying for you.
No words can express the hurt that you or her family are experiencing.
Use the people around you to hold you up and their strength to help you through.
Without love and people in our lives to touch us, life is meaningless.
I can't imagine how much your support meant to her in her most difficult time.
Praying for you.
musclemania70
New member
So sorry to hear of your loss. A few weeks ago, I lossed a loved one and the pain is never easy.
No words can express the hurt that you or her family are experiencing.
Use the people around you to hold you up and their strength to help you through.
Without love and people in our lives to touch us, life is meaningless.
I can't imagine how much your support meant to her in her most difficult time.
Praying for you.
No words can express the hurt that you or her family are experiencing.
Use the people around you to hold you up and their strength to help you through.
Without love and people in our lives to touch us, life is meaningless.
I can't imagine how much your support meant to her in her most difficult time.
Praying for you.
musclemania70
New member
So sorry to hear of your loss. A few weeks ago, I lossed a loved one and the pain is never easy.
<br />No words can express the hurt that you or her family are experiencing.
<br />
<br />Use the people around you to hold you up and their strength to help you through.
<br />
<br />Without love and people in our lives to touch us, life is meaningless.
<br />I can't imagine how much your support meant to her in her most difficult time.
<br />
<br />Praying for you.
<br />No words can express the hurt that you or her family are experiencing.
<br />
<br />Use the people around you to hold you up and their strength to help you through.
<br />
<br />Without love and people in our lives to touch us, life is meaningless.
<br />I can't imagine how much your support meant to her in her most difficult time.
<br />
<br />Praying for you.