Opening a can o' worms

farmfamily · Sep 26, 2011

This is exactly what has been going through my mind lately. I mean I know there have been major adavances done in the treatment of CF. But hasn't the average life predicted been affected by all these adults that aren't even diagnosed until they are well into the adulthood. They must have had healthy childhoods. My teenagers were diagnosed shortly after birth and pre-birth. I too think that maybe there should be a sepreration. 
Until recently I was always given the hope that if we did all our treatments, did all the tune- ups, took alltheir meds my kids would always have the same chance at such a long life.
Sorry have been wanting to voice this but didn't want to be a downer for others. 
Recently, really had the rug pulled out from under us with prognosis. 

three children, younger two w/cf. DD508

farmfamily · Sep 26, 2011

This is exactly what has been going through my mind lately. I mean I know there have been major adavances done in the treatment of CF. But hasn't the average life predicted been affected by all these adults that aren't even diagnosed until they are well into the adulthood. They must have had healthy childhoods. My teenagers were diagnosed shortly after birth and pre-birth. I too think that maybe there should be a sepreration. 
Until recently I was always given the hope that if we did all our treatments, did all the tune- ups, took alltheir meds my kids would always have the same chance at such a long life.
Sorry have been wanting to voice this but didn't want to be a downer for others. 
Recently, really had the rug pulled out from under us with prognosis. 

three children, younger two w/cf. DD508

Printer · Sep 26, 2011

Katie:

I really understand your situation. I constantly wonder why I'm still here when so many great kids are taken. I can only live my life as it has been given to me. I understand how difficult it is for youngsters with CF but it doesn't mean that because I'm still alive that it is, or was, easy for me. For almost three years at ages 15 - 17, I was required to travel 30 miles every two weeks to be xrayed and tested for TB. I had gastro sergery at age 24 and common duct surgery and gall bladder surgery at age 32. My pancrease (on the enzyme side) is fried. I can't even eat a cookie without Creon.

I only began to be healthy after I was dx and started taking Cepro. I'm allergic to Pulmozyne and Tobi. We may have been dx later in life but in my case my symptoms started at about 4.

Almost everyone born in my generation who had CF has passed away, (most by the age of 5) this is not new.

We DO NOT NEED TWO LISTS. We are all in the same boat.

Bill

Bill

Printer · Sep 26, 2011

Katie:

I really understand your situation. I constantly wonder why I'm still here when so many great kids are taken. I can only live my life as it has been given to me. I understand how difficult it is for youngsters with CF but it doesn't mean that because I'm still alive that it is, or was, easy for me. For almost three years at ages 15 - 17, I was required to travel 30 miles every two weeks to be xrayed and tested for TB. I had gastro sergery at age 24 and common duct surgery and gall bladder surgery at age 32. My pancrease (on the enzyme side) is fried. I can't even eat a cookie without Creon.

I only began to be healthy after I was dx and started taking Cepro. I'm allergic to Pulmozyne and Tobi. We may have been dx later in life but in my case my symptoms started at about 4.

Almost everyone born in my generation who had CF has passed away, (most by the age of 5) this is not new.

We DO NOT NEED TWO LISTS. We are all in the same boat.

Bill

Bill

Printer · Sep 26, 2011

Katie:
 
 I really understand your situation. I constantly wonder why I'm still here when so many great kids are taken. I can only live my life as it has been given to me. I understand how difficult it is for youngsters with CF but it doesn't mean that because I'm still alive that it is, or was, easy for me. For almost three years at ages 15 - 17, I was required to travel 30 miles every two weeks to be xrayed and tested for TB. I had gastro sergery at age 24 and common duct surgery and gall bladder surgery at age 32. My pancrease (on the enzyme side) is fried. I can't even eat a cookie without Creon.
 
 I only began to be healthy after I was dx and started taking Cepro. I'm allergic to Pulmozyne and Tobi. We may have been dx later in life but in my case my symptoms started at about 4.
 
 Almost everyone born in my generation who had CF has passed away, (most by the age of 5) this is not new.
 
 We DO NOT NEED TWO LISTS. We are all in the same boat.
 
 Bill
 
 
 Bill

Printer · Sep 26, 2011

Yea FARMFAMILY. I must have had a healthy childhood but by what standard. I was alot healther than my peers who died before the age of five.

Is that the criteria that you want to measure my life by?

Bill

Printer · Sep 26, 2011

Yea FARMFAMILY. I must have had a healthy childhood but by what standard. I was alot healther than my peers who died before the age of five.

Is that the criteria that you want to measure my life by?

Bill

Printer · Sep 26, 2011

Yea FARMFAMILY. I must have had a healthy childhood but by what standard. I was alot healther than my peers who died before the age of five.
 
 Is that the criteria that you want to measure my life by?
 
 Bill

Shelbyville · Sep 26, 2011

Hello:<div> </div><div>Is this the ADULT section of the forum? I have seen so many helpful posts in the brief four yeas of finding out how "I caught CF" and what it means to me. I now see posts of those w/o CF judging the users of the ADULTS section with the intent to find a place to stick the LUCKY over 40 CFers. We need help also but are soooo lucky to be alive and will never lead a normal life like someone w/o out CF unless they are a care giver and my heart goes out to the care givers! IMHO this is no place for division among the truly helpful support group. No need to dig in dirt for worms we'll only get dirty. </div>

Shelbyville · Sep 26, 2011

Hello: Is this the ADULT section of the forum? I have seen so many helpful posts in the brief four yeas of finding out how "I caught CF" and what it means to me. I now see posts of those w/o CF judging the users of the ADULTS section with the intent to find a place to stick the LUCKY over 40 CFers. We need help also but are soooo lucky to be alive and will never lead a normal life like someone w/o out CF unless they are a care giver and my heart goes out to the care givers! IMHO this is no place for division among the truly helpful support group. No need to dig in dirt for worms we'll only get dirty.

Shelbyville · Sep 26, 2011

Hello: Is this the ADULT section of the forum? I have seen so many helpful posts in the brief four yeas of finding out how "I caught CF" and what it means to me. I now see posts of those w/o CF judging the users of the ADULTS section with the intent to find a place to stick the LUCKY over 40 CFers. We need help also but are soooo lucky to be alive and will never lead a normal life like someone w/o out CF unless they are a care giver and my heart goes out to the care givers! IMHO this is no place for division among the truly helpful support group. No need to dig in dirt for worms we'll only get dirty.

JennifersHope · Sep 26, 2011

I don't even know why I am saying anything on this thread, really since I was undiagnosed with CF, though it has been suggested more then once that I have another Nasal PD since I have so many CF symptoms one known gene one undescribed etc...

Bill, when I read what you went through, I feel terrible. I remember as a nurse when I worked in the ER we would get patients with pancreatitis all the time and were accused of the same things as you.

I before I was dx with CF, wrong or rightly. was tested for TB a million times, in addition to that I have been tested a zillion times for HIV.... then I was diagnosed and all the craizness stopped, Now since being undiagnosed I have again been tested for HIV three times, all negative, TB four or five times, That is how they found the MAC.

Anyway, who cares if people want to have a separate list it isn't going to change their circumstance or yours. I understand you are hurt. I understand you have suffered. I have too, and I still don't have a proper diagnose.

To the parents who want a separate list.... as far as I am concerned do what ever you need to make yourself feel better. I am not a mother or a parent at all. All I have is a dog, not genetically related but I love him dearly. Please don't think I am comparing your child to my dog because I AM NOT.. I am just saying my dog is sick... and it has made me insane... I have lost sleep been insane to the vets and just about lost my mind.. I can't stand to see him suffer.... if I am that way with a dog.. I can't imagine the love that a mother has for their child.. I can't imagine the pain and frustration that you are feeling, not knowing, always wondering, always waiting for the other shoe to drop...It has to be horrible.....

There is no winner here. Sickness and disease is awful for anyone.. Pain is pain. You can look at Bill and say he is atypical, which I agree he is, but look at your child, how many times have they been in the hospital, how many times have they been on IVS.... Don't compare.. I am sure I can find you someone who's child is sicker then yours. Who has it worse then you...

The bottom line is we need a cure for all diseases that end life early.

The parents of CFer's have my heart and they always, always will.

I am sorry that there is not any answers yet... I have met so many wonderful CF doctors who truly are working so hard to help find a cure. Until then.. I pray for your sanity, strength and health.

JennifersHope · Sep 26, 2011

I don't even know why I am saying anything on this thread, really since I was undiagnosed with CF, though it has been suggested more then once that I have another Nasal PD since I have so many CF symptoms one known gene one undescribed etc...

Bill, when I read what you went through, I feel terrible. I remember as a nurse when I worked in the ER we would get patients with pancreatitis all the time and were accused of the same things as you.

I before I was dx with CF, wrong or rightly. was tested for TB a million times, in addition to that I have been tested a zillion times for HIV.... then I was diagnosed and all the craizness stopped, Now since being undiagnosed I have again been tested for HIV three times, all negative, TB four or five times, That is how they found the MAC.

Anyway, who cares if people want to have a separate list it isn't going to change their circumstance or yours. I understand you are hurt. I understand you have suffered. I have too, and I still don't have a proper diagnose.

To the parents who want a separate list.... as far as I am concerned do what ever you need to make yourself feel better. I am not a mother or a parent at all. All I have is a dog, not genetically related but I love him dearly. Please don't think I am comparing your child to my dog because I AM NOT.. I am just saying my dog is sick... and it has made me insane... I have lost sleep been insane to the vets and just about lost my mind.. I can't stand to see him suffer.... if I am that way with a dog.. I can't imagine the love that a mother has for their child.. I can't imagine the pain and frustration that you are feeling, not knowing, always wondering, always waiting for the other shoe to drop...It has to be horrible.....

There is no winner here. Sickness and disease is awful for anyone.. Pain is pain. You can look at Bill and say he is atypical, which I agree he is, but look at your child, how many times have they been in the hospital, how many times have they been on IVS.... Don't compare.. I am sure I can find you someone who's child is sicker then yours. Who has it worse then you...

The bottom line is we need a cure for all diseases that end life early.

The parents of CFer's have my heart and they always, always will.

I am sorry that there is not any answers yet... I have met so many wonderful CF doctors who truly are working so hard to help find a cure. Until then.. I pray for your sanity, strength and health.

JennifersHope · Sep 26, 2011

I don't even know why I am saying anything on this thread, really since I was undiagnosed with CF, though it has been suggested more then once that I have another Nasal PD since I have so many CF symptoms one known gene one undescribed etc...
 
 Bill, when I read what you went through, I feel terrible. I remember as a nurse when I worked in the ER we would get patients with pancreatitis all the time and were accused of the same things as you.
 
 I before I was dx with CF, wrong or rightly. was tested for TB a million times, in addition to that I have been tested a zillion times for HIV.... then I was diagnosed and all the craizness stopped, Now since being undiagnosed I have again been tested for HIV three times, all negative, TB four or five times, That is how they found the MAC.
 
 Anyway, who cares if people want to have a separate list it isn't going to change their circumstance or yours. I understand you are hurt. I understand you have suffered. I have too, and I still don't have a proper diagnose.
 
 To the parents who want a separate list.... as far as I am concerned do what ever you need to make yourself feel better. I am not a mother or a parent at all. All I have is a dog, not genetically related but I love him dearly. Please don't think I am comparing your child to my dog because I AM NOT.. I am just saying my dog is sick... and it has made me insane... I have lost sleep been insane to the vets and just about lost my mind.. I can't stand to see him suffer.... if I am that way with a dog.. I can't imagine the love that a mother has for their child.. I can't imagine the pain and frustration that you are feeling, not knowing, always wondering, always waiting for the other shoe to drop...It has to be horrible.....
 
 There is no winner here. Sickness and disease is awful for anyone.. Pain is pain. You can look at Bill and say he is atypical, which I agree he is, but look at your child, how many times have they been in the hospital, how many times have they been on IVS.... Don't compare.. I am sure I can find you someone who's child is sicker then yours. Who has it worse then you...
 
 The bottom line is we need a cure for all diseases that end life early.
 
 The parents of CFer's have my heart and they always, always will.
 
 I am sorry that there is not any answers yet... I have met so many wonderful CF doctors who truly are working so hard to help find a cure. Until then.. I pray for your sanity, strength and health.

JustDucky · Sep 26, 2011

I wish I were diagnosed younger, then I would have probably had better lungs now at 39. In my 20's, I was in and out of hospitals as well with pneumonias, severe bronchitis, asthma at least 4 times a year. I would be treated with a week of IV antibiotics and streeted. I too was questioned by my doctors, like Bill..called crazy or a hypochondriac. If I had been diagnosed even in my 20's, I would have been spared that kind of emotional grief and would have probably benefited tremendously with the right treatment. In my teens, my lungs weren't horrible, but I did get my share of "colds" and I could not run like my friends. I always thought I was just out of shape. Track was definitely not my thing in school.
Because of the advances in CF diagnosis/treatment, more and more people are being diagnosed young, during early childhood and infancy. When I was born, there was no such thing as genetic testing or newborn screening....it simply didn't exist. So if you weren't born with or develop severe or classic symptoms as a very young child, no red flags dropped and you were treated as a sickly child, or even lazy for that matter (I had one gym teacher who said this of me because I could not keep up with my classmates)
These days, many people with milder genotypes (and I say this very loosely as everyone presents differently, I have seen people on this board with so called class 4 or 5 mutations who have classic disease) are being diagnosed through newborn screening/genetic testing. These are the same people that if they had been born 40 years ago would have eluded diagnosis until later in life.
Again, I say that CF is CF with a huge spectrum of disease/presentation etc.....I am thankful that with increasing awareness of CF and better testing and education that more people are being diagnosed and treated at younger ages, thus avoiding what happened to me as well as many of the old timer CF'ers. Of course there will always be CF'ers who fall completely through the cracks even now, especially if they have very rare or unknown mutations that have a milder disease presentation. Hopefully, someday that won't be the case.

Jenn 39 w/CF

JustDucky · Sep 26, 2011

I wish I were diagnosed younger, then I would have probably had better lungs now at 39. In my 20's, I was in and out of hospitals as well with pneumonias, severe bronchitis, asthma at least 4 times a year. I would be treated with a week of IV antibiotics and streeted. I too was questioned by my doctors, like Bill..called crazy or a hypochondriac. If I had been diagnosed even in my 20's, I would have been spared that kind of emotional grief and would have probably benefited tremendously with the right treatment. In my teens, my lungs weren't horrible, but I did get my share of "colds" and I could not run like my friends. I always thought I was just out of shape. Track was definitely not my thing in school.
Because of the advances in CF diagnosis/treatment, more and more people are being diagnosed young, during early childhood and infancy. When I was born, there was no such thing as genetic testing or newborn screening....it simply didn't exist. So if you weren't born with or develop severe or classic symptoms as a very young child, no red flags dropped and you were treated as a sickly child, or even lazy for that matter (I had one gym teacher who said this of me because I could not keep up with my classmates)
These days, many people with milder genotypes (and I say this very loosely as everyone presents differently, I have seen people on this board with so called class 4 or 5 mutations who have classic disease) are being diagnosed through newborn screening/genetic testing. These are the same people that if they had been born 40 years ago would have eluded diagnosis until later in life.
Again, I say that CF is CF with a huge spectrum of disease/presentation etc.....I am thankful that with increasing awareness of CF and better testing and education that more people are being diagnosed and treated at younger ages, thus avoiding what happened to me as well as many of the old timer CF'ers. Of course there will always be CF'ers who fall completely through the cracks even now, especially if they have very rare or unknown mutations that have a milder disease presentation. Hopefully, someday that won't be the case.

Jenn 39 w/CF

JustDucky · Sep 26, 2011

I wish I were diagnosed younger, then I would have probably had better lungs now at 39. In my 20's, I was in and out of hospitals as well with pneumonias, severe bronchitis, asthma at least 4 times a year. I would be treated with a week of IV antibiotics and streeted. I too was questioned by my doctors, like Bill..called crazy or a hypochondriac. If I had been diagnosed even in my 20's, I would have been spared that kind of emotional grief and would have probably benefited tremendously with the right treatment. In my teens, my lungs weren't horrible, but I did get my share of "colds" and I could not run like my friends. I always thought I was just out of shape. Track was definitely not my thing in school.
 Because of the advances in CF diagnosis/treatment, more and more people are being diagnosed young, during early childhood and infancy. When I was born, there was no such thing as genetic testing or newborn screening....it simply didn't exist. So if you weren't born with or develop severe or classic symptoms as a very young child, no red flags dropped and you were treated as a sickly child, or even lazy for that matter (I had one gym teacher who said this of me because I could not keep up with my classmates)
 These days, many people with milder genotypes (and I say this very loosely as everyone presents differently, I have seen people on this board with so called class 4 or 5 mutations who have classic disease) are being diagnosed through newborn screening/genetic testing. These are the same people that if they had been born 40 years ago would have eluded diagnosis until later in life.
 Again, I say that CF is CF with a huge spectrum of disease/presentation etc.....I am thankful that with increasing awareness of CF and better testing and education that more people are being diagnosed and treated at younger ages, thus avoiding what happened to me as well as many of the old timer CF'ers. Of course there will always be CF'ers who fall completely through the cracks even now, especially if they have very rare or unknown mutations that have a milder disease presentation. Hopefully, someday that won't be the case.
 
 Jenn 39 w/CF

Jana · Sep 26, 2011

Although I don't quite fit into the category you're asking about, I'm close enough. I'll be 39 in October and was diagnosed at 7 months. The problems started with pneumonia from which I couldn't seem to recover, and continued with not growing, etc. So, I'd say that's a fairly typical diagnosis.

Within a few years of my diagnosis and the resulting treatment, I became quite healthy and stayed that way into my 20s. Of course, there were plenty of antibiotics and days of being sick, but I avoided IVs and hospital stays (except as a baby) until my late 20s. My FEV1 was still in the 80s until recently when it took an unexplained plunge to 60%.

I know I've been fortunate as many children with cf have dealt with what I do now (and worse in some cases) their entire lives. Honestly, for those of you who worry that you're somehow missing something for your child, I can only say my case lets you "off the hook" on that. My parents provided all the care they could for me just as you all do. They couldn't possibly have done anything to make me more healthy than the average cf patient of my childhood days; it's just the way it was. In fact, I was diagnosed and grew up in Indonesia where my parents are missionaries, so it could be argued I didn't have access to as much care as others.

The bottom line is that cf is a weird and unpredictable disease, and it doesn't treat everyone the same way. My heart goes out to you as parents, and I know I could never feel your pain in watching your children go through this. My advice would be to help your children live life as fully as possible. Sure, we read of people with cf who can do all kinds of things, but that simply isn't true for everyone. However, that doesn't mean life can't be fulfilling and productive for those whose health doesn't allow the "it won't stop me" approach. We can all live the life we have fully.

Jana · Sep 26, 2011

Although I don't quite fit into the category you're asking about, I'm close enough. I'll be 39 in October and was diagnosed at 7 months. The problems started with pneumonia from which I couldn't seem to recover, and continued with not growing, etc. So, I'd say that's a fairly typical diagnosis.

Within a few years of my diagnosis and the resulting treatment, I became quite healthy and stayed that way into my 20s. Of course, there were plenty of antibiotics and days of being sick, but I avoided IVs and hospital stays (except as a baby) until my late 20s. My FEV1 was still in the 80s until recently when it took an unexplained plunge to 60%.

I know I've been fortunate as many children with cf have dealt with what I do now (and worse in some cases) their entire lives. Honestly, for those of you who worry that you're somehow missing something for your child, I can only say my case lets you "off the hook" on that. My parents provided all the care they could for me just as you all do. They couldn't possibly have done anything to make me more healthy than the average cf patient of my childhood days; it's just the way it was. In fact, I was diagnosed and grew up in Indonesia where my parents are missionaries, so it could be argued I didn't have access to as much care as others.

The bottom line is that cf is a weird and unpredictable disease, and it doesn't treat everyone the same way. My heart goes out to you as parents, and I know I could never feel your pain in watching your children go through this. My advice would be to help your children live life as fully as possible. Sure, we read of people with cf who can do all kinds of things, but that simply isn't true for everyone. However, that doesn't mean life can't be fulfilling and productive for those whose health doesn't allow the "it won't stop me" approach. We can all live the life we have fully.

Jana · Sep 26, 2011

Although I don't quite fit into the category you're asking about, I'm close enough. I'll be 39 in October and was diagnosed at 7 months. The problems started with pneumonia from which I couldn't seem to recover, and continued with not growing, etc. So, I'd say that's a fairly typical diagnosis.
 
 Within a few years of my diagnosis and the resulting treatment, I became quite healthy and stayed that way into my 20s. Of course, there were plenty of antibiotics and days of being sick, but I avoided IVs and hospital stays (except as a baby) until my late 20s. My FEV1 was still in the 80s until recently when it took an unexplained plunge to 60%.
 
 I know I've been fortunate as many children with cf have dealt with what I do now (and worse in some cases) their entire lives. Honestly, for those of you who worry that you're somehow missing something for your child, I can only say my case lets you "off the hook" on that. My parents provided all the care they could for me just as you all do. They couldn't possibly have done anything to make me more healthy than the average cf patient of my childhood days; it's just the way it was. In fact, I was diagnosed and grew up in Indonesia where my parents are missionaries, so it could be argued I didn't have access to as much care as others.
 
 The bottom line is that cf is a weird and unpredictable disease, and it doesn't treat everyone the same way. My heart goes out to you as parents, and I know I could never feel your pain in watching your children go through this. My advice would be to help your children live life as fully as possible. Sure, we read of people with cf who can do all kinds of things, but that simply isn't true for everyone. However, that doesn't mean life can't be fulfilling and productive for those whose health doesn't allow the "it won't stop me" approach. We can all live the life we have fully.

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