What's it like?

V

victoriathewriter

Guest
Hi guys,
I don't know if this is the right place to post this, but I guess I'll keep this here until someone tells me otherwise.
I'm a writer, and a former family member of mine had CF. I am writing a book involving a CF patient, and unfortunately family information alone on treatment hasn't been enough to suffice for proper research. I was wondering, if anyone was interested, if you could give me a "low-down" on extensive hospital/hospice life for a CF patient? A timeline of sorts would be great.
Although I do not suffer from CF myself, I'm keeping all of you in my prayers. <3 Stay strong.
-Victoria
 
V

victoriathewriter

Guest
Hi guys,
I don't know if this is the right place to post this, but I guess I'll keep this here until someone tells me otherwise.
I'm a writer, and a former family member of mine had CF. I am writing a book involving a CF patient, and unfortunately family information alone on treatment hasn't been enough to suffice for proper research. I was wondering, if anyone was interested, if you could give me a "low-down" on extensive hospital/hospice life for a CF patient? A timeline of sorts would be great.
Although I do not suffer from CF myself, I'm keeping all of you in my prayers. <3 Stay strong.
-Victoria
 
V

victoriathewriter

Guest
Hi guys,
<br />I don't know if this is the right place to post this, but I guess I'll keep this here until someone tells me otherwise.
<br />I'm a writer, and a former family member of mine had CF. I am writing a book involving a CF patient, and unfortunately family information alone on treatment hasn't been enough to suffice for proper research. I was wondering, if anyone was interested, if you could give me a "low-down" on extensive hospital/hospice life for a CF patient? A timeline of sorts would be great.
<br />Although I do not suffer from CF myself, I'm keeping all of you in my prayers. <3 Stay strong.
<br />-Victoria
 
J

JustDucky

New member
Probably the best place to post this would be the adult/families sections of this forum to get the most responses. I think every CF'er is different as far as hospitalizations go. I was a late diagnosis, but I wasn't too bad lungwise until my 20's, then what was called "asthma" and severe bronchitis kicked in and I was hospitalized frequently. Mind you, I wasn't dx'd until 33, so I wasn't getting appropriate treatment for my CF and I was sick often because of it. Currently, I am on IV's frequently...about 4 times a year on average. I am in the hospital most times with those IV's, except currently (I hope to keep it that way) because pneumonia usually gets the better of me and I have to go in. Last hospitalization was for 5 weeks because they had a hard time getting the infections under control. Many CF'ers tend to have really resistant bugs and I am no exemption.
But, like I said, what is going on with me isn't necessarily the same thing that is happening to another CF'er my age. There are CF'ers who are young children and getting transplants and there are also adult CF'ers in their 50's and still going strong. Quite a spectrum, isn't it?
Hope this helps,
Jenn
 
J

JustDucky

New member
Probably the best place to post this would be the adult/families sections of this forum to get the most responses. I think every CF'er is different as far as hospitalizations go. I was a late diagnosis, but I wasn't too bad lungwise until my 20's, then what was called "asthma" and severe bronchitis kicked in and I was hospitalized frequently. Mind you, I wasn't dx'd until 33, so I wasn't getting appropriate treatment for my CF and I was sick often because of it. Currently, I am on IV's frequently...about 4 times a year on average. I am in the hospital most times with those IV's, except currently (I hope to keep it that way) because pneumonia usually gets the better of me and I have to go in. Last hospitalization was for 5 weeks because they had a hard time getting the infections under control. Many CF'ers tend to have really resistant bugs and I am no exemption.
But, like I said, what is going on with me isn't necessarily the same thing that is happening to another CF'er my age. There are CF'ers who are young children and getting transplants and there are also adult CF'ers in their 50's and still going strong. Quite a spectrum, isn't it?
Hope this helps,
Jenn
 
J

JustDucky

New member
Probably the best place to post this would be the adult/families sections of this forum to get the most responses. I think every CF'er is different as far as hospitalizations go. I was a late diagnosis, but I wasn't too bad lungwise until my 20's, then what was called "asthma" and severe bronchitis kicked in and I was hospitalized frequently. Mind you, I wasn't dx'd until 33, so I wasn't getting appropriate treatment for my CF and I was sick often because of it. Currently, I am on IV's frequently...about 4 times a year on average. I am in the hospital most times with those IV's, except currently (I hope to keep it that way) because pneumonia usually gets the better of me and I have to go in. Last hospitalization was for 5 weeks because they had a hard time getting the infections under control. Many CF'ers tend to have really resistant bugs and I am no exemption.
<br />But, like I said, what is going on with me isn't necessarily the same thing that is happening to another CF'er my age. There are CF'ers who are young children and getting transplants and there are also adult CF'ers in their 50's and still going strong. Quite a spectrum, isn't it?
<br />Hope this helps,
<br />Jenn
 
T

Tammy15

New member
not sure what type of info would be helpful, my son bron 1981 diagnosed at 4 days old we never had heard of CF. Doctors visit every 6 weeks, every 6 mos xrays. In and out of hospital about every other mos. At 8 mos old he droppedto his birth weight 5 lbs another surgery at 6 yrs old aother surgery . he was never supposed to see 6th grade but he is 29. My daughter I knew the moment she was born she had CF there was a hard to explain like burnt salt odor in the delivery room. I told the dr she would throw up first feeding. She did but never really needed any surgeries and was not in the hospital as often as her brother. Same doctor visit schedule, then at age 20 we found she was pregnant about 5 mos, suprise casue we were told she could not have kids. She made choice to have the baby knowing she would only be here for a few years as the doctor said having baby would take a lot. At age 25 she passed. If you have any specific questions feel free to ask. They did not do gene testing back when my kids were born so I can not give you that info
 
T

Tammy15

New member
not sure what type of info would be helpful, my son bron 1981 diagnosed at 4 days old we never had heard of CF. Doctors visit every 6 weeks, every 6 mos xrays. In and out of hospital about every other mos. At 8 mos old he droppedto his birth weight 5 lbs another surgery at 6 yrs old aother surgery . he was never supposed to see 6th grade but he is 29. My daughter I knew the moment she was born she had CF there was a hard to explain like burnt salt odor in the delivery room. I told the dr she would throw up first feeding. She did but never really needed any surgeries and was not in the hospital as often as her brother. Same doctor visit schedule, then at age 20 we found she was pregnant about 5 mos, suprise casue we were told she could not have kids. She made choice to have the baby knowing she would only be here for a few years as the doctor said having baby would take a lot. At age 25 she passed. If you have any specific questions feel free to ask. They did not do gene testing back when my kids were born so I can not give you that info
 
T

Tammy15

New member
not sure what type of info would be helpful, my son bron 1981 diagnosed at 4 days old we never had heard of CF. Doctors visit every 6 weeks, every 6 mos xrays. In and out of hospital about every other mos. At 8 mos old he droppedto his birth weight 5 lbs another surgery at 6 yrs old aother surgery . he was never supposed to see 6th grade but he is 29. My daughter I knew the moment she was born she had CF there was a hard to explain like burnt salt odor in the delivery room. I told the dr she would throw up first feeding. She did but never really needed any surgeries and was not in the hospital as often as her brother. Same doctor visit schedule, then at age 20 we found she was pregnant about 5 mos, suprise casue we were told she could not have kids. She made choice to have the baby knowing she would only be here for a few years as the doctor said having baby would take a lot. At age 25 she passed. If you have any specific questions feel free to ask. They did not do gene testing back when my kids were born so I can not give you that info
 
V

victoriathewriter

Guest
Thank you so much, ladies! Jenn - I'll be sure to pass this on to the forum you suggested. And Tammy - I am so sorry to hear about your daughter. My condolences go out to you, dear. If it isn't too much to ask, may I ask for a little more info about your daughter? What was it like nearing the end, mostly, and did she go into hospice?
 
V

victoriathewriter

Guest
Thank you so much, ladies! Jenn - I'll be sure to pass this on to the forum you suggested. And Tammy - I am so sorry to hear about your daughter. My condolences go out to you, dear. If it isn't too much to ask, may I ask for a little more info about your daughter? What was it like nearing the end, mostly, and did she go into hospice?
 
V

victoriathewriter

Guest
Thank you so much, ladies! Jenn - I'll be sure to pass this on to the forum you suggested. And Tammy - I am so sorry to hear about your daughter. My condolences go out to you, dear. If it isn't too much to ask, may I ask for a little more info about your daughter? What was it like nearing the end, mostly, and did she go into hospice?
 
T

Tammy15

New member
Well my daughter decided when her son was about 1 1/2 she wanted to live with him on her own, and even though I went down just about every night to clean etc her health deteoriated which we knew it would and it was her choice to have her son. After she kept getting sick just about every other mos I told her its time to come home. About 3 yrs after birth O2 she had to be on kept increasing as did her hospital visits. Say just about every 3 mos. Her brother would take her ususally and spend first 2 days at hospital with her and then I with her son would go down and stay usually at least 4 days I was able to work from hospital room . Aril 2009 we wee advised she was in final stages, her brother was actually getting ready to take her to hospital and she started not being able to breathe so ambulance ride to local hospital then another one to her CF center. She after that still attempted doing her therapy to strengthen lungs and was proud as she was being able to go longer. Her 3rd visit she called me and said guess whwr I am in ambulance on way CF center I did not do well. Aug 2009 she signed her DNR and said the doctors keep telling me its ok to go but I am not ready so I told her then tell them you are not ready and to stop talking about it. Oct 2009 she was in 14 days but came home to trick or treat with her son so her sister and I push her in her wheelchair with her O2 tanks. She technically never went under hospice they came but becasue of the meds she took and would still need it was too expensive for them as they would have to do it for all . They were supposed to call us back never did. So she had her wheelchair hospital bed and a visiting nurse that came once a week. I worked from home made assisted her did the running up and downstairs etc. Dec 2009 we thought she was going but she came out of hospital another 14 day stay for xmas doing well. Feb march april 2010 she was at least in for 14 day stays. May 8th she was home, and we fell back into our routine. We gave her a surprise party May 28th for her 25th bday she was weak but had a blast, her and her son played party games. That Sunday we took her back to the hospital and doctor said she is very frail this could be her time. But as soon as her sister brought her son in the room her stats went right up and we thought maybe we were going to dodge the bullet. June 4th she was told no more they could do she told them then today is the day. There was a calmness over her no fear she wanted only to have her sons bday party first and then she was ready. Even while she was towards end I just had to maybe give her massages , bring her food drink, she would bath herself etc and if she had energy would go watch her son get off school bus. She always had energy to read to him etc. If you have any more questions let me know not sure if this helps.
 
T

Tammy15

New member
Well my daughter decided when her son was about 1 1/2 she wanted to live with him on her own, and even though I went down just about every night to clean etc her health deteoriated which we knew it would and it was her choice to have her son. After she kept getting sick just about every other mos I told her its time to come home. About 3 yrs after birth O2 she had to be on kept increasing as did her hospital visits. Say just about every 3 mos. Her brother would take her ususally and spend first 2 days at hospital with her and then I with her son would go down and stay usually at least 4 days I was able to work from hospital room . Aril 2009 we wee advised she was in final stages, her brother was actually getting ready to take her to hospital and she started not being able to breathe so ambulance ride to local hospital then another one to her CF center. She after that still attempted doing her therapy to strengthen lungs and was proud as she was being able to go longer. Her 3rd visit she called me and said guess whwr I am in ambulance on way CF center I did not do well. Aug 2009 she signed her DNR and said the doctors keep telling me its ok to go but I am not ready so I told her then tell them you are not ready and to stop talking about it. Oct 2009 she was in 14 days but came home to trick or treat with her son so her sister and I push her in her wheelchair with her O2 tanks. She technically never went under hospice they came but becasue of the meds she took and would still need it was too expensive for them as they would have to do it for all . They were supposed to call us back never did. So she had her wheelchair hospital bed and a visiting nurse that came once a week. I worked from home made assisted her did the running up and downstairs etc. Dec 2009 we thought she was going but she came out of hospital another 14 day stay for xmas doing well. Feb march april 2010 she was at least in for 14 day stays. May 8th she was home, and we fell back into our routine. We gave her a surprise party May 28th for her 25th bday she was weak but had a blast, her and her son played party games. That Sunday we took her back to the hospital and doctor said she is very frail this could be her time. But as soon as her sister brought her son in the room her stats went right up and we thought maybe we were going to dodge the bullet. June 4th she was told no more they could do she told them then today is the day. There was a calmness over her no fear she wanted only to have her sons bday party first and then she was ready. Even while she was towards end I just had to maybe give her massages , bring her food drink, she would bath herself etc and if she had energy would go watch her son get off school bus. She always had energy to read to him etc. If you have any more questions let me know not sure if this helps.
 
T

Tammy15

New member
Well my daughter decided when her son was about 1 1/2 she wanted to live with him on her own, and even though I went down just about every night to clean etc her health deteoriated which we knew it would and it was her choice to have her son. After she kept getting sick just about every other mos I told her its time to come home. About 3 yrs after birth O2 she had to be on kept increasing as did her hospital visits. Say just about every 3 mos. Her brother would take her ususally and spend first 2 days at hospital with her and then I with her son would go down and stay usually at least 4 days I was able to work from hospital room . Aril 2009 we wee advised she was in final stages, her brother was actually getting ready to take her to hospital and she started not being able to breathe so ambulance ride to local hospital then another one to her CF center. She after that still attempted doing her therapy to strengthen lungs and was proud as she was being able to go longer. Her 3rd visit she called me and said guess whwr I am in ambulance on way CF center I did not do well. Aug 2009 she signed her DNR and said the doctors keep telling me its ok to go but I am not ready so I told her then tell them you are not ready and to stop talking about it. Oct 2009 she was in 14 days but came home to trick or treat with her son so her sister and I push her in her wheelchair with her O2 tanks. She technically never went under hospice they came but becasue of the meds she took and would still need it was too expensive for them as they would have to do it for all . They were supposed to call us back never did. So she had her wheelchair hospital bed and a visiting nurse that came once a week. I worked from home made assisted her did the running up and downstairs etc. Dec 2009 we thought she was going but she came out of hospital another 14 day stay for xmas doing well. Feb march april 2010 she was at least in for 14 day stays. May 8th she was home, and we fell back into our routine. We gave her a surprise party May 28th for her 25th bday she was weak but had a blast, her and her son played party games. That Sunday we took her back to the hospital and doctor said she is very frail this could be her time. But as soon as her sister brought her son in the room her stats went right up and we thought maybe we were going to dodge the bullet. June 4th she was told no more they could do she told them then today is the day. There was a calmness over her no fear she wanted only to have her sons bday party first and then she was ready. Even while she was towards end I just had to maybe give her massages , bring her food drink, she would bath herself etc and if she had energy would go watch her son get off school bus. She always had energy to read to him etc. If you have any more questions let me know not sure if this helps.
 
V

victoriathewriter

Guest
Thanks so much, Tammy. Again, I'm very sorry about your daughter, she seemed like a very dedicated mother and an excellent person.
 
V

victoriathewriter

Guest
Thanks so much, Tammy. Again, I'm very sorry about your daughter, she seemed like a very dedicated mother and an excellent person.
 
V

victoriathewriter

Guest
Thanks so much, Tammy. Again, I'm very sorry about your daughter, she seemed like a very dedicated mother and an excellent person.
 
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