Anyone. Over 35 and still have original lungs

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anonymous

New member
I am really curious if there is anyone out there over 35 and have original lungs? I know CF is really different for EVERYONE, but is it inevitable that as we live longer with CF that a person will need a lung transplant? Of course I plan on living to ripe old age but am I fooling myself that I will never need a lung transplant? Anyone over 35ish and has there original lungs, I would love to hear from you. What is your experience with your health as you have gotten older. I know for me it has gotten harder as I have gotten older. When I get sick, I get Really sick and it takes alot longer to get back to my baseline. I also have developed Diabetes and Osteopenia already.

Anyways, would love to hear how those of you who still have their original lungs have felt in their 20's, vs. 30's, vs 40's vs. 50's and so on.

Thanks

Jennifer 33yrs old with Diabetes and Osteopenia
 
L

LINDASTAYINALIVE

New member
HI JEN! YES I HAVE MY ORIGINAL LUNGS ALTHOUGH I AM ONLY 33 I FEEL GREAT! I SEEM TO BE DOING VERY WELL. I EXCERCISE DAILY WHICH I ENCOURAGE EVERY C/FER TO DO. IT IS THE ONLY WAY TO STRENGHTEN YOUR LUNGS. DO YOU TAKE ALOT OF CALCIUM? WHEN DID YOU DEVELOPE YOUR DIABETES? I HOPE THINGS GET BETTER FOR YOU. THINK POSITIVE AND GET OUT AND ENJOY THE SUNSHINE.(VITAMIN D)
 
I

IG

Guest
lol seeing that 'original lungs' thing made me laugh. Sorry probably not very funny but it did. I have a morbid sense of humor anyway.
um... can't answer that one I've been transplanted. Sorry.
 
A

anonymous

New member
I'm 33 and have my original lungs. I have had a hard time the past 3 years with my lungs. I picked up parasites in Mexico three years ago and have never been the same since, despite receiving treatment for parasites. My lungs have suffered greatly from the taxing of the bugs. I never use to cough up blood, not until the advent of the parasites, nor did I have night sweats before.

All my doctors seem to be accepting the process, and are content with my current status, but I am not. I am going to go to a Naturopathic MD to see if that philosophy can offer a solution, as the western doctors clearly have reached the end of their science and ability.

I have lost much hope in the process. And when a CF mentor and long time friend of mine, Alex Maish, in Albuquerque, died this past March, I haven't been the same. My wife and all my friends say something has changed in me, my attitude, my hope, etc. have all waned.

I feel like I am a beaten man.

Lance
m/33 w/CF
San Diego
 
A

anonymous

New member
Oh, and I have also lost +20% of my lung function in the process as well. My BEST fev1 in the past three years has been 52%, and that is after the end of a 16 day stay in the hospital with all the IV and percussion therapy I could receive.

Lance
 
A

anonymous

New member
Hi,

I´m 43, female with cf and cfrd. I do still have my own lungs and I´m doing quite okay! I had a full time job, but now I want to quit, because its getting too hard to sit in the office all day; my back´s killing me when I do that.

Uli,Germany
 
A

anonymous

New member
Lance
I'm not sure if you have intestinal type parasites or skin type, but I had stumbled over a website for the skin parasites (and probably the other type too). It's more or less a forum such as this one & some of the people are off the wall but most of them truly want to share any ideas they have to combat parasites, etc.
The website is www.skinparasites.com
 
S

stevehof

New member
I am 57 and still running on OEM lungs...;^) FEV1 of 55%.... It all depends on how well your body does over the years in coping with CF...
 
J

JazzysMom

New member
I am 37 with the original parts. Although I have had a very hard time this year & I definitely cant do what I use to do when I was 20, I still think I am ok. I have good days & bad days. Overall I dont think I am not doing too bad!
 
C

CFWife

New member
My husband is 36 and still has his original lungs. On our other CF list, there are several people over 35 who still have their lungs too.
 
A

anonymous

New member
My husband's 45 1/2 with original lungs - but on the top of the list for a tx. His health was basically normal until he caught cepacia a couple of years ago. I've seen more older cf'ers on another message board.

There's a lady from Canada who keeps track of people with cf. You can check out her website: <a target=new class=ftalternatingbarlinklarge href="http://www3.nbnet.nb.ca/normap/CF.htm
">http://www3.nbnet.nb.ca/normap/CF.htm
</a>
Check out tx info - good place to start is <a target=new class=ftalternatingbarlinklarge href="http://groups.msn.com/TransplantSupportLungHeartLungHeart.
">http://groups.msn.com/TransplantSupportLungHeartLungHeart.
</a>
Blessings to you all.

Jan, Greg's wife
www.standinginthegap4greg.org
 
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Diane

New member
Im 40 with my original lungs. I got diabetes when i was 15 which is odd since at 15 i had hardly any lung involvement at all ( and was in the best of health) and ive always had very minimal pancreatic problems as well. Oh well..........
I was quite healthy till about 8- 1/2 years ago when i developed b.cepacia. That changed the status a bit, but i am still doing decently well .

Jan, i will keep your husband in my prayers that he receives his gift soon <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
A

anonymous

New member
Hi,
I am 40 with my original lungs, fev1 around 50. Things have definitely become more of a challenge as I have gotten older, I find I have to do more treatments/more resting to maintain my baseline that seemed so effortles 10 years ago. I tire more easily and don't have the stamina I once did, but am able to manage ok. I think exercise has helped to keep me as stable as I am. I can't run, but do take a brisk (or as brisk as I am able) walk every day in addition to being really compliant about treatments and nebs etc. I do feel really fortunate to be this well at such a 'ripe old' age!

Kim
40 w/cf
 
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serendipity730

New member
That original lungs made me chuckle too. I have mine, but I am only 23. I understand how this poster feels though. I know that someday I will need a lung transplant, but I hope I am able to get to 40 without one.
 
A

anonymous

New member
I am 37 and just diagnosed this year - so I still have my original lungs and FEV1 96%. Started having chest pain 3 weeks ago (right between sternum and beneath my left breast) and they are checking out my pancreas for problems. Other than that not having any problems except occassional shortness of breath.
 
A

anonymous

New member
Jennifer,

There are many over 30 with original lungs. You may never need a lung tx. Let's hope so.

I got my new lungs at 33, my sister had her lungs till she was 46 and I know a few in their 50's. My sister had her first IV at the age of 40 after she had 4 kids.

Any questions, you can email me.

Joanne
luckylungsforjo@aol.com
 
A

anonymous

New member
I am 49 with my own lungs, but I have had major problems with my pancrease since about 19. I got Diabetes at 40, which goes crazy when I'm on pred. I am on the list at Columbia, but I'm not bad enough yet(blood o2 is still over 95) to be "activated" at this time. I had a sister that died at 19 in 1976, pre transplant days. I also have a sister age 39 who works at LIJ hospital as a nurse. She also has CF, but thankfully a much milder case than myself. I am trying to hang on to these lousy lungs as long as possible in hopes that the rejection drugs that are out there improve. I have avery severe case of osteoporosis and that will also complicate things when I do get my Transplant. The side order of high blood pressure I have isn't a positive either. abot 3 months ago, I was diagnosed with Pleuricy. I am trying to see if there is anyone out ther who has ever gotten it. It is not a disease, but a condition that occurs as a result of broken ribs, lung infection, and a number of other medical problems. If anyone knows anyone who has had it, please ask them to post there comment on this adult site. Iam having a bad time with this Pleuricy. It's a very disturbing rubbing sensation that you feel with every breath. The lining of the lung rubs against the plural sac due to swelling. Take care of yourselves as best you can, keep your own lungs as long as possible!
 
C

Cutecurlz

Guest
I am a female with CF...Ripe old age of 37 and still have the lungs I was born with. My doctor says they look healthier than a "Normal" person, my brother on the other hand got really sick a few months ago (he's 28) and is now on 24/7 Oxygen and is waiting for a lung transplant.
 
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Diane

New member
I've had pleural rub which sounds like what you are talking about. Where every breath you take , you feel a rubbing sensation that hurts, even prevents you from laying on the side that it is on. It is caused by inflammation in the pleural space between the lungs and chest wall. My doctor told me to take ibuprofen for it if i felt comfortable taking it....which i didnt. Ibuprofen can cause bleeding and since i had 2 embolizations from hemoptysis problems i decided to grin and bear it with just extra strength tylenol. It took a few weeks, but thank God it finally subsided. I had it right in the area in my lung that had pnumonia.
 
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