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A question for Risa
- Thread starter eli
- Start date
With the way advances are coming along, with her being one now, theres a very good chance she would probably live long enough to see a real cure for the disease, or atleast some very high end treatments that let us manage the disease like diabetics do. Don't freak out man, those born now with the disease have a very bright outlook compared to when us older CF's were born.
Hi Eli
Yes I agree with Sean. I receive many emails from parents whose children were recently diagnosed with CF and I tell them the same thing. I also tell them to take really good care of their children and teach them how important all their treatments are. Many children in their teen years rebel so taking the illness seriously but making it fun at the same time will be setting a good example.
I too would be curious if I were you, how others are doing post transplant. I had my first transplant ten years ago and had my second transplant nine and half years later to the date. I did well both times in different ways. The first time I was out in ten days and rejection on and off for six months and was fine for the rest of the transplant until I developed chronic rejection. My second transplant was very difficult post in the ICU as it was my second transplant but once i got motivated, I have been doing wonderfully since. No problems at all. I feel like a kid again. My PFT's are wonderful as well. I feel much better than my first set of lungs.
I believe getting listed early is key. Lungs are hard to receive. I hope that your child will be so healthy that a transplant is out of the picture.
I hear that some CF patients have such excellent lung capacities that is such a gift. I remember how my childhood was with CF. I always did extra treatments on days when I felt more congested and always exercised jogging. I believe that added to my quality of life.
It is hard to describe how wonderful new lungs are. When I first diagnosed with Chronic rejection, i told my doctor that i wanted another transplant and she said you have so much time. Well I was right, I needed one much sooner than a few doctors thought. Thankfully, I got listed earlier and did not wait too long again.
TAke Care
Risa
46 yrs.
Yes I agree with Sean. I receive many emails from parents whose children were recently diagnosed with CF and I tell them the same thing. I also tell them to take really good care of their children and teach them how important all their treatments are. Many children in their teen years rebel so taking the illness seriously but making it fun at the same time will be setting a good example.
I too would be curious if I were you, how others are doing post transplant. I had my first transplant ten years ago and had my second transplant nine and half years later to the date. I did well both times in different ways. The first time I was out in ten days and rejection on and off for six months and was fine for the rest of the transplant until I developed chronic rejection. My second transplant was very difficult post in the ICU as it was my second transplant but once i got motivated, I have been doing wonderfully since. No problems at all. I feel like a kid again. My PFT's are wonderful as well. I feel much better than my first set of lungs.
I believe getting listed early is key. Lungs are hard to receive. I hope that your child will be so healthy that a transplant is out of the picture.
I hear that some CF patients have such excellent lung capacities that is such a gift. I remember how my childhood was with CF. I always did extra treatments on days when I felt more congested and always exercised jogging. I believe that added to my quality of life.
It is hard to describe how wonderful new lungs are. When I first diagnosed with Chronic rejection, i told my doctor that i wanted another transplant and she said you have so much time. Well I was right, I needed one much sooner than a few doctors thought. Thankfully, I got listed earlier and did not wait too long again.
TAke Care
Risa
46 yrs.
Thanks for your replies, i am aware that medicine is advancing and that all cf's have a prospect of a great future, especially newly diagnosed members. I think its just a mum thing to be worried and concered about your child's health. As she is my first child and there have been no seriouse illnesses or disorders in mine or my husband families. This was a big shock to us all and we are still trying to come to terms with what she has and treating her the best and safest way we can .
Maybe i do worry too much and i should just think about enjoying her for now. I think my childcare background doesn't help, as i have come accross and looked after many chn, with disorders and disabilities.
Risa, i'm glad that you are doing well, especially after having two transplants. You are a fighter and a positive influence to many people out there fighting this illness.
ps:I don't think i have emailed you, as i am only new to the site and read your posts two day's ago. Although you are welcome to e-mail me any time.
<img src="i/expressions/angel.gif" border="0">
Thankyou....
Maybe i do worry too much and i should just think about enjoying her for now. I think my childcare background doesn't help, as i have come accross and looked after many chn, with disorders and disabilities.
Risa, i'm glad that you are doing well, especially after having two transplants. You are a fighter and a positive influence to many people out there fighting this illness.
ps:I don't think i have emailed you, as i am only new to the site and read your posts two day's ago. Although you are welcome to e-mail me any time.
<img src="i/expressions/angel.gif" border="0">
Thankyou....
My Mom's name is Eli but she spells it differently.<img src="i/expressions/angel_ani.gif" border="0"> I think a little worry keeps us all on our toes so do not be too hard on yourself. My parents took good care of me but they had their own hobbies and lived there life to the max. They are both very healthy and for their ages they look much younger. I am grateful that they are around for me as I really need their support and love.
Exercise is so important and whatever you can do to encourage your child the better off they will be. In Europe they encourage parents to work with their child using their arms on the floor playing a wheel barrow. This is great for their posture. When they are coughing they tend to go forward and then they can develop rounded shoulders. This game exericise is therapeutic. My father always asked me if I was doing pushups and sometimes i said yes and then go and do them. I am glad that he stayed on my case.
best of success
Risa
Exercise is so important and whatever you can do to encourage your child the better off they will be. In Europe they encourage parents to work with their child using their arms on the floor playing a wheel barrow. This is great for their posture. When they are coughing they tend to go forward and then they can develop rounded shoulders. This game exericise is therapeutic. My father always asked me if I was doing pushups and sometimes i said yes and then go and do them. I am glad that he stayed on my case.
best of success
Risa
Hi Risa
That European game you mention sounds familiar. I used to play it as child with mum and dad. I also am of European background
Gee... it brings back old memories.
By the way, my nic name is Eli as through school people couldn't pronounce my real name and just called me Eli for short, and that's what i've stuck with since. It is actually a very poular name these day's.
Thanks
Eli<img src="i/expressions/angel.gif" border="0">
That European game you mention sounds familiar. I used to play it as child with mum and dad. I also am of European background
Gee... it brings back old memories.
By the way, my nic name is Eli as through school people couldn't pronounce my real name and just called me Eli for short, and that's what i've stuck with since. It is actually a very poular name these day's.
Thanks
Eli<img src="i/expressions/angel.gif" border="0">
Hi Risa
That European game you mention sounds familiar. I used to play it as child with mum and dad. I also am of European background
Gee... it brings back old memories.
By the way, my nic name is Eli as through school people couldn't pronounce my real name and just called me Eli for short, and that's what i've stuck with since. It is actually a very poular name these day's.
Thanks
Eli<img src="i/expressions/angel.gif" border="0">
That European game you mention sounds familiar. I used to play it as child with mum and dad. I also am of European background
Gee... it brings back old memories.
By the way, my nic name is Eli as through school people couldn't pronounce my real name and just called me Eli for short, and that's what i've stuck with since. It is actually a very poular name these day's.
Thanks
Eli<img src="i/expressions/angel.gif" border="0">