Frustration

J

juliesdreamteam

New member
Since March, my wife has been complaining about pain associated with a peg tube that was placed during that month.<br>The idea of the peg was to build nutrition. She was never able to tolerate tube feeds. She complained of nausea and pain. High level drugs were given to ease that pain. The CF Doc said, chronic pancreatitis and that she'd just live with pain. <br>So...........we're on the transplant list at U. Kentucky and the transplant docs have discovered that the pain she's having is associated with the placement of the peg. It was placed in the rectus muscle. Directly into the muscles that allow her to sit up. Pressure on that muscle is the only thing that has brought her relief. The pain meds that were given to her at high dosages suppressed her respiratory system and slowed, to a crawl, her bowels.<br>I am ready to strangle anyone wearing a lab coat. I am convinced that my Julie wouldn't be at this point in her life if not for the careless practice of medicine. Sure she would need a transplant eventually but this peg, designed to increase her chances has only hastened her decline. So now, instead of getting a set of lungs and getting on with her life, we have to fix the shoddy work of a few docs.<br>Word has spread around the ICU about the patient with a peg in her abdominal muscles and the news is being met with disgust. I can't do anything but wait and pray. She hasn't eaten a thing in 6 days. Supplements through IV will keep her around but this pain has been so unbearable that she asked me to pull her off the vent. I know that is a bad idea and we are no where near that point of this journey. I get to watch her in the mostexcruciatingpain imaginable.<br>They misdiagnosed her for 23 years in the beginning and now this towards the end. Absolutely frustrated. We really need to find a cure so that no one has to endure this stuff again.<br>Thanks for listening.<br>Roywww.juliesdreamteam.com
 
J

juliesdreamteam

New member
Since March, my wife has been complaining about pain associated with a peg tube that was placed during that month.<br>The idea of the peg was to build nutrition. She was never able to tolerate tube feeds. She complained of nausea and pain. High level drugs were given to ease that pain. The CF Doc said, chronic pancreatitis and that she'd just live with pain. <br>So...........we're on the transplant list at U. Kentucky and the transplant docs have discovered that the pain she's having is associated with the placement of the peg. It was placed in the rectus muscle. Directly into the muscles that allow her to sit up. Pressure on that muscle is the only thing that has brought her relief. The pain meds that were given to her at high dosages suppressed her respiratory system and slowed, to a crawl, her bowels.<br>I am ready to strangle anyone wearing a lab coat. I am convinced that my Julie wouldn't be at this point in her life if not for the careless practice of medicine. Sure she would need a transplant eventually but this peg, designed to increase her chances has only hastened her decline. So now, instead of getting a set of lungs and getting on with her life, we have to fix the shoddy work of a few docs.<br>Word has spread around the ICU about the patient with a peg in her abdominal muscles and the news is being met with disgust. I can't do anything but wait and pray. She hasn't eaten a thing in 6 days. Supplements through IV will keep her around but this pain has been so unbearable that she asked me to pull her off the vent. I know that is a bad idea and we are no where near that point of this journey. I get to watch her in the mostexcruciatingpain imaginable.<br>They misdiagnosed her for 23 years in the beginning and now this towards the end. Absolutely frustrated. We really need to find a cure so that no one has to endure this stuff again.<br>Thanks for listening.<br>Roywww.juliesdreamteam.com
 
J

juliesdreamteam

New member
Since March, my wife has been complaining about pain associated with a peg tube that was placed during that month.<br>The idea of the peg was to build nutrition. She was never able to tolerate tube feeds. She complained of nausea and pain. High level drugs were given to ease that pain. The CF Doc said, chronic pancreatitis and that she'd just live with pain. <br>So...........we're on the transplant list at U. Kentucky and the transplant docs have discovered that the pain she's having is associated with the placement of the peg. It was placed in the rectus muscle. Directly into the muscles that allow her to sit up. Pressure on that muscle is the only thing that has brought her relief. The pain meds that were given to her at high dosages suppressed her respiratory system and slowed, to a crawl, her bowels.<br>I am ready to strangle anyone wearing a lab coat. I am convinced that my Julie wouldn't be at this point in her life if not for the careless practice of medicine. Sure she would need a transplant eventually but this peg, designed to increase her chances has only hastened her decline. So now, instead of getting a set of lungs and getting on with her life, we have to fix the shoddy work of a few docs.<br>Word has spread around the ICU about the patient with a peg in her abdominal muscles and the news is being met with disgust. I can't do anything but wait and pray. She hasn't eaten a thing in 6 days. Supplements through IV will keep her around but this pain has been so unbearable that she asked me to pull her off the vent. I know that is a bad idea and we are no where near that point of this journey. I get to watch her in the mostexcruciatingpain imaginable.<br>They misdiagnosed her for 23 years in the beginning and now this towards the end. Absolutely frustrated. We really need to find a cure so that no one has to endure this stuff again.<br>Thanks for listening.<br>Roywww.juliesdreamteam.com
 
L

LouLou

New member
I'm glad Julie has you as an advocate. Sorry you are having to see her in so much pain. Will removal/replacement fix the problem?
 
L

LouLou

New member
I'm glad Julie has you as an advocate. Sorry you are having to see her in so much pain. Will removal/replacement fix the problem?
 
L

LouLou

New member
I'm glad Julie has you as an advocate. Sorry you are having to see her in so much pain. Will removal/replacement fix the problem?
 
J

juliesdreamteam

New member
It'll fix the digestive issues she's been having and it will allow them to remove all pain meds eventually. The problem is time. They can't transplant her lungs while she's in this condition. All of those pain meds really harmed her pulmonary system and we need lungs in the worse way.
 
J

juliesdreamteam

New member
It'll fix the digestive issues she's been having and it will allow them to remove all pain meds eventually. The problem is time. They can't transplant her lungs while she's in this condition. All of those pain meds really harmed her pulmonary system and we need lungs in the worse way.
 
J

juliesdreamteam

New member
It'll fix the digestive issues she's been having and it will allow them to remove all pain meds eventually. The problem is time. They can't transplant her lungs while she's in this condition. All of those pain meds really harmed her pulmonary system and we need lungs in the worse way.
 
A

azdesertrat

New member
My God, can this poor lady get a break?
I'm so sorry for her/your troubles.
As was noted earlier, thank God you are in her corner.
I know I would never have survived my journey through CF & Transplant without my Wife. I don't think anyon could do this alone.
Please continue to be steong for her; she needs you in the worst way.
You & Julie will be in our thoughts & prayers.
'Hard Times Don't Last, Hard People Do!'.
 
A

azdesertrat

New member
My God, can this poor lady get a break?
I'm so sorry for her/your troubles.
As was noted earlier, thank God you are in her corner.
I know I would never have survived my journey through CF & Transplant without my Wife. I don't think anyon could do this alone.
Please continue to be steong for her; she needs you in the worst way.
You & Julie will be in our thoughts & prayers.
'Hard Times Don't Last, Hard People Do!'.
 
A

azdesertrat

New member
My God, can this poor lady get a break?
I'm so sorry for her/your troubles.
As was noted earlier, thank God you are in her corner.
I know I would never have survived my journey through CF & Transplant without my Wife. I don't think anyon could do this alone.
Please continue to be steong for her; she needs you in the worst way.
You & Julie will be in our thoughts & prayers.
'Hard Times Don't Last, Hard People Do!'.
 
T

TreasureGoddess

Member
Oh Roy, best of luck with dealing with everything for you & Julie!! I know that feeling too well of wanting to get violent with anyone in a lab coat. TRY to resist. Beating the crap out of medical personnel doesn't usually end up in the best care, even though it would feel great!!!

We're praying for you guys and sure hope relief is on its way and things clear up quick enough to get Julie's new lungs.
Sending peaceful & hopeful & healing thoughts your way.
Christine
 
T

TreasureGoddess

Member
Oh Roy, best of luck with dealing with everything for you & Julie!! I know that feeling too well of wanting to get violent with anyone in a lab coat. TRY to resist. Beating the crap out of medical personnel doesn't usually end up in the best care, even though it would feel great!!!

We're praying for you guys and sure hope relief is on its way and things clear up quick enough to get Julie's new lungs.
Sending peaceful & hopeful & healing thoughts your way.
Christine
 
You must log in or register to reply here.
Top