My Grandaughter

[flyrod231]

My grandaughter is two and was diagnosed with CF last week. I am so angry with how totally unfair life can be. It is not likely she will know the experience of being a grandparent. She will grow up knowing she is somehow different from her friends. I am CF ignorant and have so many questions. How does this progress? How and when will her quality of life change? Everything I have read in such a short time indicates she may live until her mid thirties. I don't know how to act except to be angry. I realize I am rambling but need to vent somewhere. Fear has entered into my life for the first time in many years. Am I selfish because I am going to lose this precious child? How do you cope? Any response will be greatly appreciated. I am just trying to understand and get some insight on wht to expect.....in her life and mine.

John

 

[thelizardqueen]

I was diagnosed at 6 weeks of age with CF. At that time I was told that I wouldn't live to see 6. Then it was 12, then 14, then 18, and then 22. I'm 24 years old, and am still relatively healthy. I have mild lung damage even though I have one of the worst CF mutations. What this means, is that even though a doctor may tell you that your granddaughter won't grow old - you will never know until she gets older. Every CF person out there is different when it comes to their health. Some of us are in our 30s, 40s, 50s and even some on their 60s! Your granddaughter is lucky that she was born in this time where there are better meds out there to treat her. The average lifespan of a CFer is around 36 I believe. That's changed drastically from the 60's, where you didn't really live past 6.

Regarding her quality of life - who knows when it will get worse. The keys to living a long CF life is to be very diligent with your treatments, take your enzymes, exercise (I can't stress enough the importance of exercise), your environment around you (don't smoke, allergens), and you're mental state.

I know this is a tough time for your family, and you are all going through a rough spot, but it will get better as time progresses. Yes its unfair, but so is life. Don't treat her any differently then you would a health grandchild. Treat her the same. Love her. Let her know that she didn't do anything wrong to get CF, and that she is as normal as can be - she just has to take extra care of herself.

Hey - for all you know, she may outlive you and her parents. And that's a great thing, because no one wants to lose a son or daughter or grandchild.

If you want to chat or have more questions, you can always reach me at lizd1981@hotmail.com I'd be more then happy to answer any questions or concerns you have.

Stay strong - I know you'll get through this!

 

[Allie]

It's okay to be angry at how unfair it is. I still am angry about it all. No one can tell you what your granddaughter's Cf will do, some die young, some die older, all they can tell you is what know they know now. Just keep up on her treatments (extremely important) and do the best you can.

 

[Emily65Roses]

John,
Just to give you an idea of how fast numbers change... when I was born, my parents were told I'd likely not live past 18. I'm 22 now. And in my 22 years the average lifespan has gone from 18 to 35ish.

Your granddaughter hass a HUGE advantage being born as recently as she has. The average CF lifespan is still 35, because us old CF farts are still around. And we bring the average down. The babies and the kids that are fairly new are the ones allowing the average to rise. So chances are your granddaughter will likely see past her 30s. Can't say when, I'm not very good at predicting the future (<img src="i/expressions/face-icon-small-tongue.gif" border="0">), but she'll live longer than a lot of us current CF adults.

 

[anonymous]

It is absolutely ok to be angry. The current average survival age is in the mid thirties. When I was a child it was 20. I am now 24. Yes, this is a horrible disease, yes it gets progressivly worse. But there is no reason that your grandchild cannot be a normal child. She can go to school, go to sleep overs, have boyfriends, have children. CF is not a death sentence.

 

[Debi]

It's perfectly normal to be angry. I'd be concerned if you weren't angry. No one wants to see their loved ones struggle. I echo what the others have said. There have been several new medicines to help those with cystic fibrosis. While I don't know whether there will be a "cure" any time soon, I am confident that there will be more breakthrough treatments. Try not to treat your granddaughter with kid gloves - let her live an active and adventurous life, and surround her with love. I have been very lucky to have lived 54 years with CF. No one knows the exact course that any CFer's life will take. There are so many wonderful people on this site - visit often, and ask all the questions you need to. Thanks for being such a concerned grandparent.

Debi
54 w/cf

 

[Diane]

Hi John,
To help put things in perspective let me remind you that not every child born will have a long life. Whether it be due to an accident, an illness, a fall, use of drugs, etc. Cf just seems to give instant negativity, when in reality a healthy child is not guaranteed a long life. A few of my prefectly healthy friends i grew up with are deceased for all various reasons, motorcycle accident, stabbed, house burnt down, cancer, car accident. No-one ever considered they wouldnt always be around when they were born healthy. Your granddaughter is born at a time when good things may be happening soon for the treatment of cf and she could benefit greatly and may live longer than you can imagine. Try to stay positive , cf isnt the death sentence it used to be.

 

[anonymous]

I was furious when DS was diagnosed. Emotions I went thru were similar to those I'd learned about in a death and dying class I took in college for my sociology section. I was in denial -- tests had to be wrong and it was all just a big mistake. I raged -- I was angry at god, angry at people who had normal pregnancies and seemingly normal children...

Because DS was born with an intestinal blockage due to meconium illeus, he spent 4 weeks in a nicu. We saw children a LOT worse off than DS -- ones with horrible physical deformities, spina bifida, brain tumors, preemies, downs syndrome, heart ailments -- some of these children had been at the NICU for almost a year, some were never ever going home. Started to realize there were people who were a lot worse off than we were.

Liza aka ratatosk mom to a toddler wcf

 

[JazzysMom]

I definitely would be more concerned if you werent angry because then I would think you are incomplete denial & that is much worse. CF sucks there is no question about that, but you will find how your granddaughter & the rest of the family will adapt to what challenges her CF brings. It is quite remarkable how tough we are. I am not saying you wont have bad times. Like for me today is awful. I am very emotional, feeling very overwhelmed & just got out of the hospital, but I know I will survive it. Some people find it difficult to see a positive when dealing with a chronic illness, but I think there are a few things to see. It makes us stronger (stubborn can be used instead), more compassionate to people & animals & quite often we are leaders instead of followers. I gaurantee you that you will learn a lot from your granddaughter just from the good days she will have. One day at a time & remember that not every CFer is the same so when reading or learning keep that in mind! Welcome by the way!

 

[fourkidsmom]

John:

I am so sorry to hear about your granddaughter. YES-- it is ok to be angry, it stinks and it is NOT fair. I remember going thru that terrible time of when I was 7 months preganant and finding out that my son had CF. You will find that things will get easier and you will adjust. It will take time, you also will find that your little grand daughter will be such a blessing! I have found that thru my now 5 year old son having cf he is very strong, independent, quite the personality, loving, kind and doesn't see he has a problem at this point even though he has had a very tough road. That doesn't mean your little one will have a tough time, just keep up with her medications and breathing treatments. It is amazing what the medical world can do now, just find a GOOD Cf doctor. I have learned so much from my son and would never trade him for anything. I would of rather have him with cf, than to have never of had him at all. None of us knows how long we have here, just enjoy the time we do have.

On a positive note: I just received this the other day from our cf clinic:

<b>The median age of survival for a person with cystic fibrosis has risen to 36.8 years--up from 35.1 in 2004!</b>
Every year it is going up. You can find alot of answers and support on this site so I hope if you have any questions you feel free to ask. Remember you are not alone.

Fourkidsmom
Step mom to 14 year old girl no cf
Mom to 12 year old boy no cf, cf carrier
Mom to 5 year old boy with cf
Mom to 3 year old girl, no cf, but chormosome 9q deletion 21.2 22.1 (sensory disorder, developmentally delayed, no communication skills, tactile defensiveness, oral defensiveness, seizures)

 

[anonymous]

Hi John,

I am 30 yrs old with CF, and have been heatlhy. Yes CF does effect my lungs and I am on certain meds but overall I am I feel great. I do get a lung infection every so often and I was recently in the hospital for some IV antibiotics. But that was the first time since I was diagnosed (at the age of 7), so overall pretty good.
I believe staying active, positive, and keeping up with treatment is the reason I am doing well. I also think my parents played a huge role with my outlook with CF. My parents let me grow up normal. I enjoyed sports (soccer), hanging out with friends, school, everthing I wanted to do. That is very important.
I believe that even though I am already 30, I will live to see granchildren, I do not believe my time is running out! CF has come a long way since I was little, better meds, better understanding, better preventitive measures, etc.
So although this is terrible news for you and your family, try and stay positive for your granddaughter. This is something she will have to deal with, but this should not define her.

 

[anonymous]

I agree with the others, but a couple points. 1.) Look on the bright side, it could be worse 2.) Don't put any limitations on your grandchild and don't think of her as having any limitations. Let her know she is going to have a bright future and she needs to plan for it by taking care of herself, including getting a college education, career, good job with insurance.

 

[julie]

I agree, you have every right to be angry about the situation. If you were perfectly ok with it right away, there would be something wrong. In time, you may make peace with the situation, but it is something that will ALWAYS nag at you. Don't feel bad for feeling that way.

Just to shed some light on a CFers life, my husband was born in 1980 and did ok for the first year while he was exclusively breastfead. He did have some problems, but they ALL came to a huge head when he was taken off the breast. He was diagnosed at 18 months after numerious bouts with pneumonia, hospitalizations, rectal prolapse, weight loss... (you name it, he encountered it pretty much). He got on meds after the diagnosis and made steady progress.

He is now 25, will be 26 in October. He will be graduating from Washington State University this May, we have been married for almost 4 years, we have triplets on the way, he is looking for a job right now with an international company, his weight is up and he hasn't been in the hospital since he was 20. He does do his treatments everyday (The vest and pulmozyme, and tobi when he has a lung infection) and concentrates greatly on what he eats to maintain his weight... but he is happy, successful and tells me all the time he has things he never dreamed of in his life, a wife, he's going to be a father, a college graduate...

With all the new medications and technologies, the chances are better than ever for your granddaughter. But it's still ok to be angry and upset. Just know that a "real life" (what's normal anyways????) IS possible for her.

If you have specific questions for us, ask a way, we're here to help you out with what we know, our own personal experiences with CF or a loved one with CF and make you feel a bit more comfortable about a situaiton you can't change. Big applauds for coming on here, what a great grandfather you are!

 

[anonymous]

My son is almost 21- he does have a "normal life". He played baseball, basketball, never missed a whole lot of school. He was very involved in church youth group. He does take meds and does treatments. He has not been in the hospital that much. He works full time and is in school. It is ok to be angry but turn that anger into something positive. I agree with being diligent with her treatments and exercise- swimming is great. We are very involved with fundraising also. There are ups and downs but things are progressing with new treatments and research. Love her and treat her like any child. Susan

 

[Ratatosk]

It's a shock, you're entitled to that anger. But when you're around your grandchild, look past the CF and just ENJOY her. My inlaws are retired and ended up moving closer to us. They and other relatives have learned how to do cpt and adminster drugs, etc. so they can help out when DH or I have meetings out of town. Liza