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Cystic Fibrosis Forum (EXP)

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Hello Everyone

I

IG

Guest
Welcome to the site Katie. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I hope you enjoy it here.
 

HairGirl

New member
Welcome to the site Katie! That's so wonderful that you have three children!!!! I can't wait to be Mom! I also have been struggling with lower pft's, haven't for the life of me been able to get them up!!!! I'm also at high altitude but that's not it since I was doing okay before I got sick. I have cousins in Colorado, it's pretty.

Also, I have a port and LOVE it, my veins decided no more picc's. And honestly I don't mind! It's nice to know I'll never have to have a picc again!!!! Sure I have to flush it once a month (and it's a double port so two pokes!) but my husband does it and he's getting quite good<img src="i/expressions/face-icon-small-smile.gif" border="0">

Glad to have your offical welcome and I'll have to check out your Ebay stuff!
 

kayleesgrandma

New member
Welcome, glad you decided to plunk down into this interesting group. You will learn SO MUCH--I know I have. They're are wonderous souls on this site!
 

anonymous

New member
Thanks everyone for such a warm welcome. It is nice being in a place where I'm not the odd one. LOL

Living in high altitude I don't feel like someone is sitting on my chest. The air is just thinner up here so you don't get as much oxygen in each breath so you have to work harder to get what you need.

HairGirl I was doing okay with my lungs until after my gallbladder surgery. I was at 35% or a little higher but I didn't struggle with getting things done and I was healthy most of the time. It's just since getting the surgery that my lungs have been doing so bad. I wasn't on oxygen before the surgery and woke up on it, which I expected but everything just went downhill from there and I still am not off of it. Every other month I seem to catch a bad cold that gets in my lungs and the healing I have been able to do just gets damaged again. It is so frustrating.

Katie
 

Diane

New member
Welcome Katie !! Its always nice to meet someone new <img src="i/expressions/face-icon-small-smile.gif" border="0"><img src="i/expressions/face-icon-small-smile.gif" border="0">
 

EnergyGal

New member
welcome aboard
Just came on tonight and checked out your website. You are incredibly talented. I think a museum is more like viewing your artwork. Just unbelievable. I sure hope you do not wait too long before you get listed so you can get new lungs and enjoy life. When you can breathe, I am sure you will be able to really enjoy working on your art. Your energy will soar.

Congrats on your accomplishments having a family and just surviving CF. I love to draw and you have inspired me to continue. It is really a great way to explore and relax.

If you have any questions about transplants, I had two double lungs about ten years apart. The first experience was easy and the second was difficult so I can say I have seen all sides of the transplant experience

I do not have much time online these days so I concentrate on my website and emails.

Take care and enjoy your art. Sell and sell
Risa
 

dyza

New member
exercise regeme, I would have thought an 8,6 and 4 year olds would be exercise enough. My 1 year-old tires me out no end lol

Welcome to the forum.....Craig ''the Scottish one'' lol
 

dying2live

New member
Risa - Thank you for looking at my art and enjoying it. It doesn't take to much energy to do it but finding time to do it is another matter. I do think that my art is soothing and it gives me some down time from normal life. I have offered to donate something to our local CF black tie auctions but no one at the main office thinks anyone would want something I've made. Seems kind of stupid since I am willing to do it for free. Oh well, I guess my talents aren't their style.

I do wish I had more energy but I am terrified of having a lung transplant. I am more terrified of not surviving it. If you have any good sites I could go to that tells me how a lung transplant is done and what to expect after surgery I would appreciate it. And when I start walking that road I promise to come here and tell you all my fears and get advice.

Hi Craig - Yes, three kids keep me busy but they were more work when they were little. My older two are in school now and when they get home we do homework and then they are off to play. They don't need me to do near as much as I use to for them. My littlest is the gentle and calm one of the bunch so her idea of "mommy time" is cuddling with a good book. When they were all littler I had so much more I had to physically do for them. I felt I was racing non-stop most of the time. Now days it is a lot calmer and I find I'm not as active as I should be.

Katie
 

EnergyGal

New member
Hi Katie

I think you are so talented. I am shocked that the CFF office said no. I think personally that exchanging products from homes of others who have CF might be the problem. They have strict rules where if you have cepacia you cannot work for their office. Very strange because I think all germs are contagious but that is their policy.

You are probably more talented than any of their artwork they get. I worked many years ago for them so I think what I said holds true.

I can see you doing those close animation movies or shows. Keep it up because when you have more energy, I am sure that is where you are headed. I would not give away your art for free. never! That is your pride and joy. Unless you are offered to be on TV and get lots of exposure lol

About a transplant, I have a website <a target=_blank class=ftalternatingbarlinklarge href="http://transplantbuddies.org">http://transplantbuddies.org</a> where others who have had transplant or those who are waiting come on board like here and share their experiences. Check it out. The owners of this CF website helped me get started six years ago.

How a lung transplant is done? I am not a surgeon so I cannot tell you the details of the operation<img src="i/expressions/face-icon-small-smile.gif" border="0"> Everybody has a unique experience from what I see. I really believe the stronger you are physcially going into the operation the better you will do (faster recovery) no matter how tired you feel each day, exercise is the best medicine. Eating healthy will help your body too. I think it matters more how you take care of yourself prior to the transplant so you can avoid complications. Getting in touch with your emotions is important. I think if a person is anxious a lot, has little patience or gets angry quickly this can hurt them. So it is good to seek conseling about any issues that you might have about anything. Letting your family and friends who will visit you know the things to say to you that will keep you relaxed. I know for sure that if I was you, I would have someone bring in some of your artwork and hang it on the wall. I would probably make a copy of it so you do not ruin it if it falls on the floor.

Workout and get your chest muscles stronger and build as much stamina as possible so you can come off the vent fast. Sounds crazy when you feel sick or tired but the body can heal and the more you are able to move the faster your recovery will be.

That is the best advice I can give to you from my own experience. I am sure others will offer you their advice as well. It does not matter that you are not listed, getting in shape now will help you lots. As one lungs are in decline the body needs all the other reserves to help keep the lungs in balance and working out even at a snails pace is the only way because you are building endurance. The wait time is not that long these days because of the new UNOS policies but it is better to be prepared in case the wait time for you is longer than expeceted. Nobody can predict the future.

See you on Transplantbuddies.org
Sincerely
Risa
 
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