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03/08/2012 01:44 PM

My introduction to the group

notairnough
 
Posts: 5
New Member

Hi, My name is Bob Wentworth and was diagnosed two years ago with ipf. The specialists I go to at the University of Michigan Health Center in Ann Arbor, Mi, say that I have lost the use of 61 % of my lungs due to scarring. I am on oxygen 24/7, including when I sleep. Ohter that a shortness of breath most of the time and a limited physical exeretion capability, I seem to be in good health and remarkably stable. During the past year, however, the shortness of breath has become more pronounced and the night air seems to bother me more. Although having been evaluated and found to be a good candidate for a single lung transplasnt (a double lung was ruled out because of my age - 64 years.),my doctors feel ( and I concur) that at this time it would be premature to put me on a list. Half of the new lungs don't make it five years, and I could go that long before needin a transplant. I haven't talked with many others who have this disease, but I would like to. I tried to upload a photo but can't get one small enough to submit.
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03/08/2012 10:54 PM
tony36
tony36  
Posts: 1408
Group Leader
I'm an Advocate

Hi Bob and welcome to our group. I am sorry to hear that you are dealing with IPF. I have not had anyone yet who has been througha transplant but if there is anyone out there in the group could I encourage you to reply here to Bob and share your experience.

Tony


03/10/2012 06:44 AM
notairnough
 
Posts: 5
New Member

Thanks Tony, and good to hear from you. I've met a couple of people who have had lung transplants, and they both say they felt great with the new lung. Again, thanks for the welcome, and I'll keep in touch. Take care, Bob.

03/10/2012 09:30 AM
tony36
tony36  
Posts: 1408
Group Leader
I'm an Advocate

That is good news, Bob, I often wondered how successful the transplants are these days.

Cheers

Tony


04/21/2012 07:52 PM
StarDesignLady
StarDesignLady  
Posts: 6
New Member

I'm a grandma. I had 4 children now grown. I'm currently in an assisted living home probably for the rest of my life unless a miracle happens. I've had several miracles happen in my life though. My daughter was born with birth defects (redundant huh?). She had a ventricular heart defect and club feet. We prayed for her and her heart was cured by the time she was about 6 months old. For her feet I just had to switch shoes. To think that she could have been teased if she was growing up with clubbed feet especially. She could have died if she wasn't cured or had an operation for her heart defect.

She sure did cry a lot before she was healed. The doctor said it didn't pain her though. How would he know?

I have been diagnosed with Idiopathic Pulmonary Fibrosis and congestive heart failure. I use oxygen 24 hour a day. Sometime my oxygen level (pulse ox) goes down to 65 (bad). If I'm still it is usually 99 which is good.

I'm a born again Christian. I go to Heaven when I die and will then be healed for sure. I am 62 years old and never even smoked.

I have hundreds of little lumps under my skin from below my breasts to the bottom of my rib cage and on the upper sides of my legs also. I've never been diagnosed with Lyme disease.

I currently feel very weak and cough a lot especially when laying down.


04/21/2012 11:44 PM
tony36
tony36  
Posts: 1408
Group Leader
I'm an Advocate

My goodnss you have a lot on your plate. You have my prayers and my sincere sympathy.

Hugs

Tony


05/09/2012 05:03 AM
StarDesignLady
StarDesignLady  
Posts: 6
New Member

There is a free program call IrfanView that can be downloaded and used to re-size your pictures. It can also be used to enhance pictures.

05/09/2012 05:07 AM
StarDesignLady
StarDesignLady  
Posts: 6
New Member

I've been to the Better Breather's Club in Joshua Tree, CA. A man there had a lung transplant at the age of 74.

05/09/2012 09:43 AM
tony36
tony36  
Posts: 1408
Group Leader
I'm an Advocate

Thank you, that is good news indeed.

Tony


08/02/2012 09:05 AM
ellisco
ellisco  
Posts: 8
New Member

I am also a true believer. I know nothing is impossible with God. Believe and trust. Mary A.
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