Easier?

anonymous

New member
Ive read so many posts on this board about how dealing with c f because easier with time. I dont think that is always the case. My two ten year olds were diagnosed when they were 3 months old, and I personally find that it has become more difficult with time. My boys were extremely sick when first diagnosed, having several respitory and cardiac arrests. Then they had renal failure at the age of 2 ending up on dyalasis for 2 months. Since then they have so much gone wrong. They are both now hydrocortisone dependant, have fragile bones, constantly having problems with polyps, dont even have half their lung funtion, constantly fighting to maintain their weight etc etc. It seems to be one problem after another. Each hospital stay (their longest being 5 months) I feel like Im being punched in the gut. Yeah, the treatments get easier to deal with as you get into a rountine. Maybe its just because I havent alot of support, I dont know, but for me it just seems to get harder. Sorry if I sound so depressing, just had to vent! Thanks
Mel
 
2

2sickkids

Guest
I don't know that it gets easier but you get used to it. I was so glad when they finally told me what my oldest son had it because he was so sick and they could finally treat him properly. Both of my boys have cf. What I can't get used to is people telling me of I'm so sorry or that they are so tiny. That always gets me since I spend so much time feeding them. We don't have any family. There are days I wonder if- they will get old or if I will for that matter. Sometimes I get a bit stressed about when they will land in the hospital next the worring is the hard part.
 

anonymous

New member
I'm not sure that dealing w/ CF gets easier w/ time. As the previous poster said, you get used to the routine. It sounds like you have a more than full load dealing w/ the boys and their health. I wish all CF's had mild CF where IV's etc wouldn't start until maybe 40 or after, wouldn't that be a perfect world?
Some people just have a heck of a time with their CF, some do OK and others get along pretty well. There are a lot of "unknowns" with CF.
Hang in there, you are a strong person dealing with all that you have thus far. If it's true that trials build character, you must have a lot of character!

Feel free to vent anytime.
 
I really don't think that it gets easier, in that overall health wise you get better; but rather with each new battle you get better from it and life becomes a bit easier. I used to be really well off with my case, but then this year hit and everything has gone downhill; my first stay in the hospital for IV antibiotics (I got my first picc line) because of two infections in my lungs, weight loss (I've always struggled mainting a healthy weight), problems with my liver, and now I find out that I have osteoporosis. Anyways, sorry I kind of went off a bit. But just hang in there; I really do believe that although it doesn't necessarily get easier overall, especially when those road bumps come along, it does get easier to take a handle on everything.
 

HollyCatheryn

New member
Hey Mel and Purple Angel!You both are having quite a time of things, though differently. I sympathize! I know we all have a different ride, but I have gone through periods where it seemed like everything was falling apart and just kept falling apart. In my teens and early 20s I had about 5 or 6 years that were just rough. It was always something and we rarely knew what to do about it. Things have been getting better steadily for about the past 4 years. I am thankful. I know we aren't guaranteed this. I would like to encourage you that the single thing that has helped me the most in terms of getting my health on track and getting stable has been nutrition. Reliv has made a huge difference for me (<A href="http://www.geocities.com/MurrensNatureMama/Reliv">www.geocities.com/MurrensNatureMama/Reliv</A>). From putting on a few pounds and keeping them on to recovering faster from infections and surgery. There is a lady in Georgia whose two young boys with CF have had lots of positive changes since starting on Reliv. I didn't try it until I was 23, but I have often wondered what my teen years would have been like if I had known about it then. I know my Gramma has experienced an improvement in her bones and my docs expected significant bone-loss because I chose to breastfeed my daughter, but I didn't have any. Purple, if your nutrition is good, you ought (if you haven't already) to look into something like swimming. It won't beat up your joints like running, but it build muscle which helps to support your bones. The more exercise you get the better your bones strengthen. Swimming also builds lung strength and breath control. Swimmers regularly have the best pulmonary function even among athletes. You are still at an age when you can build bone mass, so I'd really work hard. I know that even though you can take calcium, your body can only absorb a finite amount at a time, so you should spread them out through the day. If you take Reliv, your body will absorb more of the calcium and will have the other nutrients that work synergistically (they make each other more effective) with calcium. Make sure you have vitamin D. Iron tablets (because of their formulation) can cause your body to reject calium, so don't take them together. Dark, leafy green veggies also have calcium. You can also eat bone-meal. It is powdered so you can put it in whatever, or even in a smootie with fruit.Drinking nutrients is an excellent way to make sure you get them. You absorb more (especially with CF) because your tummy doesn't have to do so much work. And when you are dehydrated (even a little) your cells cannot absorb nutrients efficiently. Hydration is REALLY important. If I can help either of you at all, help you get information or be of encouragement, let me know.I will pray for you.
 

anonymous

New member
Mel,

My daughter was also diagnosed at three months and although she is only two years old now, she has had a difficult course already. She has had many hospitalizations for respiratory and digestive issues and is just coming off two rounds of IV's in the last three months. I know that feeling that occurs every time we head for another hospital stay, it does hit you right in the gut. It makes me feel like the day of the diagnosis over and over again.

What I have learned about CF is that it can be relentless. It doesn't always respect all the work that you do to fight it. It can attack at anytime if not all the time. And although I hate CF, I have learned to live with it because it is part of my daughter who I love with all my heart.

I guess I don't really have any advice, just understanding . . . take care.

Maria (mother of three daughters, the youngest, Samantha w/cf)
 
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