I can't say that I'm ever fond of CF, but today of all days in the last few years I'm just fed up with this d*mn disease.<br><br>For those of you familiar with M's story, he has not had a good progression and went through a lot early in life. However, things had been stable for some time.<br><br>Earlier this year we started to see signs of lung issues, and did several rounds of oral abx.<br><br>In May he started puking up blood, and turned out to be bleeding varices from his liver disease. At the same time we did an inpatient stay and started what would be the first of 2 rounds of IV's this summer.<br><br>It has been a long and difficult summer, the aggressive efforts to deal with the CF has sent M's autism into a tailspin, making life almost unbearable for everyone including him.<br><br>Today he was scheduled for a follow-up scope for the varicies and a bronch.<br><br>Liver doc ended up banding another varice and scheduled a repeat in another 2 months. Will be the 4th time since May they have had to deal with it--not good news.<br><br>Then CF doc came out, and was visibly disturbed. He informed us that despite all we have done that his lungs look the worst he has seen them all year (this was 3rd bronch since May) and that his sinuses were full of infection which is the first time we've had this issue.<br><br>Dr said that at this point he is running out of options to deal with the lungs. With his autism so antagonized right now that there is nothing we can do. He gave us a couple of months to focus on the autism and then he will decide what else we can do to arrest the slide we are on. <br><br>I don't even know how to process that the most aggressive CF doctor I have ever heard of basically is at a loss for how to stop what is going on given the limitations of his autism.<br><br>All I can say is 9 is too young to have these kinds of days, I hate CF today more than even usual.<br><br>Ok, I'm done venting now.<br>
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I hate CF
- Thread starter just1more
- Start date
I can't say that I'm ever fond of CF, but today of all days in the last few years I'm just fed up with this d*mn disease.<br><br>For those of you familiar with M's story, he has not had a good progression and went through a lot early in life. However, things had been stable for some time.<br><br>Earlier this year we started to see signs of lung issues, and did several rounds of oral abx.<br><br>In May he started puking up blood, and turned out to be bleeding varices from his liver disease. At the same time we did an inpatient stay and started what would be the first of 2 rounds of IV's this summer.<br><br>It has been a long and difficult summer, the aggressive efforts to deal with the CF has sent M's autism into a tailspin, making life almost unbearable for everyone including him.<br><br>Today he was scheduled for a follow-up scope for the varicies and a bronch.<br><br>Liver doc ended up banding another varice and scheduled a repeat in another 2 months. Will be the 4th time since May they have had to deal with it--not good news.<br><br>Then CF doc came out, and was visibly disturbed. He informed us that despite all we have done that his lungs look the worst he has seen them all year (this was 3rd bronch since May) and that his sinuses were full of infection which is the first time we've had this issue.<br><br>Dr said that at this point he is running out of options to deal with the lungs. With his autism so antagonized right now that there is nothing we can do. He gave us a couple of months to focus on the autism and then he will decide what else we can do to arrest the slide we are on. <br><br>I don't even know how to process that the most aggressive CF doctor I have ever heard of basically is at a loss for how to stop what is going on given the limitations of his autism.<br><br>All I can say is 9 is too young to have these kinds of days, I hate CF today more than even usual.<br><br>Ok, I'm done venting now.<br>
I can't say that I'm ever fond of CF, but today of all days in the last few years I'm just fed up with this d*mn disease.<br><br>For those of you familiar with M's story, he has not had a good progression and went through a lot early in life. However, things had been stable for some time.<br><br>Earlier this year we started to see signs of lung issues, and did several rounds of oral abx.<br><br>In May he started puking up blood, and turned out to be bleeding varices from his liver disease. At the same time we did an inpatient stay and started what would be the first of 2 rounds of IV's this summer.<br><br>It has been a long and difficult summer, the aggressive efforts to deal with the CF has sent M's autism into a tailspin, making life almost unbearable for everyone including him.<br><br>Today he was scheduled for a follow-up scope for the varicies and a bronch.<br><br>Liver doc ended up banding another varice and scheduled a repeat in another 2 months. Will be the 4th time since May they have had to deal with it--not good news.<br><br>Then CF doc came out, and was visibly disturbed. He informed us that despite all we have done that his lungs look the worst he has seen them all year (this was 3rd bronch since May) and that his sinuses were full of infection which is the first time we've had this issue.<br><br>Dr said that at this point he is running out of options to deal with the lungs. With his autism so antagonized right now that there is nothing we can do. He gave us a couple of months to focus on the autism and then he will decide what else we can do to arrest the slide we are on. <br><br>I don't even know how to process that the most aggressive CF doctor I have ever heard of basically is at a loss for how to stop what is going on given the limitations of his autism.<br><br>All I can say is 9 is too young to have these kinds of days, I hate CF today more than even usual.<br><br>Ok, I'm done venting now.<br>
Poor M. I'm a little familiar with the liver varicies issue as a coworker had a parent with cirrosis. I'm horrified that someone so young has to deal with those types of issues. Angry that early on he got such a raw deal in terms of others dropping the ball, pretty much neglecting his care. The unfairness of it all!
I hope that in the coming months you'll be able to get him stablilized and they'll be able to find some treatment options for him. You and your family are in my thoughts.
I hope that in the coming months you'll be able to get him stablilized and they'll be able to find some treatment options for him. You and your family are in my thoughts.
Poor M. I'm a little familiar with the liver varicies issue as a coworker had a parent with cirrosis. I'm horrified that someone so young has to deal with those types of issues. Angry that early on he got such a raw deal in terms of others dropping the ball, pretty much neglecting his care. The unfairness of it all!
I hope that in the coming months you'll be able to get him stablilized and they'll be able to find some treatment options for him. You and your family are in my thoughts.
I hope that in the coming months you'll be able to get him stablilized and they'll be able to find some treatment options for him. You and your family are in my thoughts.
Poor M. I'm a little familiar with the liver varicies issue as a coworker had a parent with cirrosis. I'm horrified that someone so young has to deal with those types of issues. Angry that early on he got such a raw deal in terms of others dropping the ball, pretty much neglecting his care. The unfairness of it all!
<br />
<br />I hope that in the coming months you'll be able to get him stablilized and they'll be able to find some treatment options for him. You and your family are in my thoughts.
<br />
<br />I hope that in the coming months you'll be able to get him stablilized and they'll be able to find some treatment options for him. You and your family are in my thoughts.
azdesertrat
New member
So sorry for all his troubles. He will most assuredly be in our prayers.
Be strong & keep on keepin' on- it's all you can do.
All our best, 'B&P'...
Be strong & keep on keepin' on- it's all you can do.
All our best, 'B&P'...
azdesertrat
New member
So sorry for all his troubles. He will most assuredly be in our prayers.
Be strong & keep on keepin' on- it's all you can do.
All our best, 'B&P'...
Be strong & keep on keepin' on- it's all you can do.
All our best, 'B&P'...
azdesertrat
New member
So sorry for all his troubles. He will most assuredly be in our prayers.
<br />Be strong & keep on keepin' on- it's all you can do.
<br />All our best, 'B&P'...
<br />Be strong & keep on keepin' on- it's all you can do.
<br />All our best, 'B&P'...
Hi Tom
It's ok, venting is good and necessary. So much about CF and its impact totally suck and the fact that you and your son are also trying to manage autism must be exceptionally difficult. The treatments and side affects alone that our kids have to manage are trying enough without this extra burden.
You and your family are in my thoughts and I hope and pray for improvement each and every day in the coming months for you all.
It's ok, venting is good and necessary. So much about CF and its impact totally suck and the fact that you and your son are also trying to manage autism must be exceptionally difficult. The treatments and side affects alone that our kids have to manage are trying enough without this extra burden.
You and your family are in my thoughts and I hope and pray for improvement each and every day in the coming months for you all.
Hi Tom
It's ok, venting is good and necessary. So much about CF and its impact totally suck and the fact that you and your son are also trying to manage autism must be exceptionally difficult. The treatments and side affects alone that our kids have to manage are trying enough without this extra burden.
You and your family are in my thoughts and I hope and pray for improvement each and every day in the coming months for you all.
It's ok, venting is good and necessary. So much about CF and its impact totally suck and the fact that you and your son are also trying to manage autism must be exceptionally difficult. The treatments and side affects alone that our kids have to manage are trying enough without this extra burden.
You and your family are in my thoughts and I hope and pray for improvement each and every day in the coming months for you all.
Hi Tom
<br />It's ok, venting is good and necessary. So much about CF and its impact totally suck and the fact that you and your son are also trying to manage autism must be exceptionally difficult. The treatments and side affects alone that our kids have to manage are trying enough without this extra burden.
<br />
<br />You and your family are in my thoughts and I hope and pray for improvement each and every day in the coming months for you all.
<br />
<br />It's ok, venting is good and necessary. So much about CF and its impact totally suck and the fact that you and your son are also trying to manage autism must be exceptionally difficult. The treatments and side affects alone that our kids have to manage are trying enough without this extra burden.
<br />
<br />You and your family are in my thoughts and I hope and pray for improvement each and every day in the coming months for you all.
<br />
JennifersHope
New member
I am so sorry... That seems way more then any one much less a child should ever have to endure. My prayers and love to you all.
JennifersHope
New member
I am so sorry... That seems way more then any one much less a child should ever have to endure. My prayers and love to you all.
JennifersHope
New member
I am so sorry... That seems way more then any one much less a child should ever have to endure. My prayers and love to you all.
rubyroselee
New member
Hi Tom,
I'm so sorry to hear about M's troubles. It's so unfair that he has so many issues to deal with. I'm sure it is particularly hard for M to deal with the major health issues when he has such a hard time with his social issues. My hope is that you, your family, and M can find peace and balance and that his issues can get under control soon. Just keep fighting for him and that is all you can do.
I'm so sorry to hear about M's troubles. It's so unfair that he has so many issues to deal with. I'm sure it is particularly hard for M to deal with the major health issues when he has such a hard time with his social issues. My hope is that you, your family, and M can find peace and balance and that his issues can get under control soon. Just keep fighting for him and that is all you can do.
rubyroselee
New member
Hi Tom,
I'm so sorry to hear about M's troubles. It's so unfair that he has so many issues to deal with. I'm sure it is particularly hard for M to deal with the major health issues when he has such a hard time with his social issues. My hope is that you, your family, and M can find peace and balance and that his issues can get under control soon. Just keep fighting for him and that is all you can do.
I'm so sorry to hear about M's troubles. It's so unfair that he has so many issues to deal with. I'm sure it is particularly hard for M to deal with the major health issues when he has such a hard time with his social issues. My hope is that you, your family, and M can find peace and balance and that his issues can get under control soon. Just keep fighting for him and that is all you can do.