Family History Discovery

[Guest guest]

With all the time I have on my hands now that I am " retired " because of my

pulmonary fibrosis, I have been working on researching my family tree on my

father's side. For some reason, my father became estranged from his family when

he left home at a young age to enlist in the Air Force. Growing up as a child,

we never had any contact with any of his family in Texas (we were in New

Hampshire). Eventually, we learned that he had a brother and two sisters back

in Texas. We got names, but beyond that we learned little.

So recently I started " digging " . A google search of his siblings names turned

up an obituary for his sister, Vera Mae. Reading the obituary, I was

particularly interested to read that she had passed away after " a long battle

with lung disease " . Naturally, I wanted to know more! Having gotten the name

of her daughter from the obit, I again did a google search and found an email

address for someone with that name. So, I emailed them, explaining who I was

and my interest in learning more.

Here is an excerpt of the reply that I received -

I'm sorry to hear about your illness. I, too, find it interesting that you have

a pulmonary disease. Mother had Pulmonary Hypertension, which was

unfortunately mis-diagnosed as Secondary Pulmonary Hyptertension for several

years. It wasn't until she was taken to a specialist in San , who is an

expert in the disease, that she was correctly diagnosed. This was approximately

1 year before she died. We were quite shocked after that first visit when we

were informed that not only was the pulmonary hypertension not secondary, but

that she also had Congestive Heart Failure and what they called pulmonary

fibrosis, both they believe, a secondary condition caused by the PH. We were

also told that there was no known cause for it. She smoked a little in her

youth, but quit in 1963 when she got pregnant with me.

She was put on a myriad of drugs, such as Tracleer, coumadin and Revatio, with

little effect. If anything, they kept the disease in check until the last month

when everything was doubled. Her only real chance was a heart/lung transplant.

She was never on the list, but there was talk at one time of it. The specialist

kept telling her that she should have been in ICU and not functioning based on

the pressures in her lungs and heart. She came to live with me in Austin, Texas

in October of 2007, after crashing her scooter and breaking her coccyx. After

that, she had two bouts of hospitalization for staph infections, one requiring

surgery on her hand. Her body just couldn't fight off ordinary diseases

anymore. The final hospitalization was in March of 2008 when she apparently had

what was deemed a sudden pulmonary edema. She was able to dial 911 and talk to

paramedics before requiring 100% ventilation. I was on my way home from work and

found her gone when I got home. Her care giver had not been gone 15 minutes

apparently when she went into crisis. In talking with her, she said Mom

appeared tired, but other than that nothing was out of the ordinary. Four days

later, I let her go because they said she would never be able to breathe without

a respirator. She was alert and awake until the end, but did not want to live

that way and went out with a fight. I'll be happy to provide you with any

information I can, if you feel it will be helpful.

-----------------------------------

Now, from what I have learned from my various doctors, the lung transplant

program, the wonderful people on here, and my own research over the last two

years, is that it would actually have been the pulmonary fibrosis that brought

on and exacerbated the pulmonary hypertension and eventually caused the

Congestive Heart Failure.

So, it appears that I may actually have the familial type of pulmonary fibrosis.

In subsequently talking with my mother, I also learned that before my father's

death, he was telling her that he was being treated for pnuemonia...although

when he eventually went into the hospital they found he was riddled with cancer.

But, I can't help but wonder if he also had pulmonary fibrosis that went

undiagnosed...after all, this was 17 years ago.

On a totally unrelated note - I had my monthly appointment at the transplant

clinic yesterday. My weight actually came back up 2 pounds and the doctor said

that she would have to discuss it with the committee to see if they would want

to inactivate me until I lost again. The thing is that I am still below the

upper limit set for me, but she explain that they want to make sure that the

gain isn't part of a trend. Fortunately, we also talked about what I might do

to respond to this and she was pleased with the plans I had in place to deal

with it. She told me that she would call me today and let me know...I got the

call this noon time and ... I am still active!!!!! But, I have to call in two

weeks and tell them what my weight is. So, I'll be taking it easy at

Thanksgiving...and not making my speciality...chocolate pecan pie! sigh...

But, at least, we'll be going to my brother's, so I wont have any leftovers to

worry about!!!

Steve aka...Knip UIP/IPF DX 9/07 VATS 12/07

57 Plymouth, NH

[Guest guest]

Steve,

That's a pretty amazing discovery isn't it? Remarkable what you can discover when you start digging around in family history especially in a branch of the family that you knew nothing about.

Congratulations on remaining active on the list. It would have been difficult in my mind to justify taking you off when you were still under the upper weight limit. I'm glad that sense prevailed.

Enjoy your Thanksgiving!!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Fri, November 20, 2009 10:18:24 PMSubject: Family History Discovery

With all the time I have on my hands now that I am "retired" because of my pulmonary fibrosis, I have been working on researching my family tree on my father's side. For some reason, my father became estranged from his family when he left home at a young age to enlist in the Air Force. Growing up as a child, we never had any contact with any of his family in Texas (we were in New Hampshire). Eventually, we learned that he had a brother and two sisters back in Texas. We got names, but beyond that we learned little.So recently I started "digging". A google search of his siblings names turned up an obituary for his sister, Vera Mae. Reading the obituary, I was particularly interested to read that she had passed away after "a long battle with lung disease". Naturally, I wanted to know more! Having gotten the name of her daughter from the obit, I again did a google search and found an email address for someone with that name. So, I emailed them,

explaining who I was and my interest in learning more.Here is an excerpt of the reply that I received -I'm sorry to hear about your illness. I, too, find it interesting that you have a pulmonary disease. Mother had Pulmonary Hypertension, which was unfortunately mis-diagnosed as Secondary Pulmonary Hyptertension for several years. It wasn't until she was taken to a specialist in San , who is an expert in the disease, that she was correctly diagnosed. This was approximately 1 year before she died. We were quite shocked after that first visit when we were informed that not only was the pulmonary hypertension not secondary, but that she also had Congestive Heart Failure and what they called pulmonary fibrosis, both they believe, a secondary condition caused by the PH. We were also told that there was no known cause for it. She smoked a little in her youth, but quit in 1963 when she got pregnant with me.She was put on a myriad

of drugs, such as Tracleer, coumadin and Revatio, with little effect. If anything, they kept the disease in check until the last month when everything was doubled. Her only real chance was a heart/lung transplant. She was never on the list, but there was talk at one time of it. The specialist kept telling her that she should have been in ICU and not functioning based on the pressures in her lungs and heart. She came to live with me in Austin, Texas in October of 2007, after crashing her scooter and breaking her coccyx. After that, she had two bouts of hospitalization for staph infections, one requiring surgery on her hand. Her body just couldn't fight off ordinary diseases anymore. The final hospitalization was in March of 2008 when she apparently had what was deemed a sudden pulmonary edema. She was able to dial 911 and talk to paramedics before requiring 100% ventilation. I was on my way home from work and found her gone when I got home. Her care

giver had not been gone 15 minutes apparently when she went into crisis. In talking with her, she said Mom appeared tired, but other than that nothing was out of the ordinary. Four days later, I let her go because they said she would never be able to breathe without a respirator. She was alert and awake until the end, but did not want to live that way and went out with a fight. I'll be happy to provide you with any information I can, if you feel it will be helpful.------------ --------- --------- -----Now, from what I have learned from my various doctors, the lung transplant program, the wonderful people on here, and my own research over the last two years, is that it would actually have been the pulmonary fibrosis that brought on and exacerbated the pulmonary hypertension and eventually caused the Congestive Heart Failure. So, it appears that I may actually have the familial type of pulmonary fibrosis. In subsequently talking

with my mother, I also learned that before my father's death, he was telling her that he was being treated for pnuemonia... although when he eventually went into the hospital they found he was riddled with cancer. But, I can't help but wonder if he also had pulmonary fibrosis that went undiagnosed. ..after all, this was 17 years ago.On a totally unrelated note - I had my monthly appointment at the transplant clinic yesterday. My weight actually came back up 2 pounds and the doctor said that she would have to discuss it with the committee to see if they would want to inactivate me until I lost again. The thing is that I am still below the upper limit set for me, but she explain that they want to make sure that the gain isn't part of a trend. Fortunately, we also talked about what I might do to respond to this and she was pleased with the plans I had in place to deal with it. She told me that she would call me today and let me know...I got the

call this noon time and ... I am still active!!!!! But, I have to call in two weeks and tell them what my weight is. So, I'll be taking it easy at Thanksgiving. ..and not making my speciality.. .chocolate pecan pie! sigh... But, at least, we'll be going to my brother's, so I wont have any leftovers to worry about!!!Steve aka...Knip UIP/IPF DX 9/07 VATS 12/0757 Plymouth, NH

[Guest guest]

Kip, thanks for sharing you family story. It makes one wonder about his own history, both familial and

others. When I was a kid, there were always old men - old at least to a t eight of ten year old - who

were coughing and spitting flem all the time. Many of them work in the cotton gins which or course,

were a whirl wind of dust. I have always wondered if they didn't have some version of fibrosis, which was

totally unknown then, at least in our little community. I now think they didl. Jack79/IPF - UIP/dx06/05 Maine

To: Breathe-Support Sent: Fri, November 20, 2009 9:14:58 PMSubject: Family History Discovery

With all the time I have on my hands now that I am "retired" because of my pulmonary fibrosis, I have been working on researching my family tree on my father's side. For some reason, my father became estranged from his family when he left home at a young age to enlist in the Air Force. Growing up as a child, we never had any contact with any of his family in Texas (we were in New Hampshire). Eventually, we learned that he had a brother and two sisters back in Texas. We got names, but beyond that we learned little.So recently I started "digging". A google search of his siblings names turned up an obituary for his sister, Vera Mae. Reading the obituary, I was particularly interested to read that she had passed away after "a long battle with lung disease". Naturally, I wanted to know more! Having gotten the name of her daughter from the obit, I again did a google search and found an email address for someone with that name. So, I emailed them,

explaining who I was and my interest in learning more.Here is an excerpt of the reply that I received -I'm sorry to hear about your illness. I, too, find it interesting that you have a pulmonary disease. Mother had Pulmonary Hypertension, which was unfortunately mis-diagnosed as Secondary Pulmonary Hyptertension for several years. It wasn't until she was taken to a specialist in San , who is an expert in the disease, that she was correctly diagnosed. This was approximately 1 year before she died. We were quite shocked after that first visit when we were informed that not only was the pulmonary hypertension not secondary, but that she also had Congestive Heart Failure and what they called pulmonary fibrosis, both they believe, a secondary condition caused by the PH. We were also told that there was no known cause for it. She smoked a little in her youth, but quit in 1963 when she got pregnant with me.She was put on a myriad

of drugs, such as Tracleer, coumadin and Revatio, with little effect. If anything, they kept the disease in check until the last month when everything was doubled. Her only real chance was a heart/lung transplant. She was never on the list, but there was talk at one time of it. The specialist kept telling her that she should have been in ICU and not functioning based on the pressures in her lungs and heart. She came to live with me in Austin, Texas in October of 2007, after crashing her scooter and breaking her coccyx. After that, she had two bouts of hospitalization for staph infections, one requiring surgery on her hand. Her body just couldn't fight off ordinary diseases anymore. The final hospitalization was in March of 2008 when she apparently had what was deemed a sudden pulmonary edema. She was able to dial 911 and talk to paramedics before requiring 100% ventilation. I was on my way home from work and found her gone when I got home. Her care

giver had not been gone 15 minutes apparently when she went into crisis. In talking with her, she said Mom appeared tired, but other than that nothing was out of the ordinary. Four days later, I let her go because they said she would never be able to breathe without a respirator. She was alert and awake until the end, but did not want to live that way and went out with a fight. I'll be happy to provide you with any information I can, if you feel it will be helpful.------------ --------- --------- -----Now, from what I have learned from my various doctors, the lung transplant program, the wonderful people on here, and my own research over the last two years, is that it would actually have been the pulmonary fibrosis that brought on and exacerbated the pulmonary hypertension and eventually caused the Congestive Heart Failure. So, it appears that I may actually have the familial type of pulmonary fibrosis. In subsequently talking

with my mother, I also learned that before my father's death, he was telling her that he was being treated for pnuemonia... although when he eventually went into the hospital they found he was riddled with cancer. But, I can't help but wonder if he also had pulmonary fibrosis that went undiagnosed. ..after all, this was 17 years ago.On a totally unrelated note - I had my monthly appointment at the transplant clinic yesterday. My weight actually came back up 2 pounds and the doctor said that she would have to discuss it with the committee to see if they would want to inactivate me until I lost again. The thing is that I am still below the upper limit set for me, but she explain that they want to make sure that the gain isn't part of a trend. Fortunately, we also talked about what I might do to respond to this and she was pleased with the plans I had in place to deal with it. She told me that she would call me today and let me know...I got the

call this noon time and ... I am still active!!!!! But, I have to call in two weeks and tell them what my weight is. So, I'll be taking it easy at Thanksgiving. ..and not making my speciality.. .chocolate pecan pie! sigh... But, at least, we'll be going to my brother's, so I wont have any leftovers to worry about!!!Steve aka...Knip UIP/IPF DX 9/07 VATS 12/0757 Plymouth, NH

[Guest guest]

Steve.... thanks for sharing this. I'm sure Vera Mae was surprised to hear from you and also you no doubt strengthened her. She knew you certainly understood. If by chance you write again tell her my condolences go out to her.

Have a good week end .

MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there!

Family History Discovery

With all the time I have on my hands now that I am "retired" because of my pulmonary fibrosis, I have been working on researching my family tree on my father's side. For some reason, my father became estranged from his family when he left home at a young age to enlist in the Air Force. Growing up as a child, we never had any contact with any of his family in Texas (we were in New Hampshire). Eventually, we learned that he had a brother and two sisters back in Texas. We got names, but beyond that we learned little.So recently I started "digging". A google search of his siblings names turned up an obituary for his sister, Vera Mae. Reading the obituary, I was particularly interested to read that she had passed away after "a long battle with lung disease". Naturally, I wanted to know more! Having gotten the name of her daughter from the obit, I again did a google search and found an email address for someone with that name. So, I emailed them, explaining who I was and my interest in learning more.Here is an excerpt of the reply that I received -I'm sorry to hear about your illness. I, too, find it interesting that you have a pulmonary disease. Mother had Pulmonary Hypertension, which was unfortunately mis-diagnosed as Secondary Pulmonary Hyptertension for several years. It wasn't until she was taken to a specialist in San , who is an expert in the disease, that she was correctly diagnosed. This was approximately 1 year before she died. We were quite shocked after that first visit when we were informed that not only was the pulmonary hypertension not secondary, but that she also had Congestive Heart Failure and what they called pulmonary fibrosis, both they believe, a secondary condition caused by the PH. We were also told that there was no known cause for it. She smoked a little in her youth, but quit in 1963 when she got pregnant with me.She was put on a myriad of drugs, such as Tracleer, coumadin and Revatio, with little effect. If anything, they kept the disease in check until the last month when everything was doubled. Her only real chance was a heart/lung transplant. She was never on the list, but there was talk at one time of it. The specialist kept telling her that she should have been in ICU and not functioning based on the pressures in her lungs and heart. She came to live with me in Austin, Texas in October of 2007, after crashing her scooter and breaking her coccyx. After that, she had two bouts of hospitalization for staph infections, one requiring surgery on her hand. Her body just couldn't fight off ordinary diseases anymore. The final hospitalization was in March of 2008 when she apparently had what was deemed a sudden pulmonary edema. She was able to dial 911 and talk to paramedics before requiring 100% ventilation. I was on my way home from work and found her gone when I got home. Her care giver had not been gone 15 minutes apparently when she went into crisis. In talking with her, she said Mom appeared tired, but other than that nothing was out of the ordinary. Four days later, I let her go because they said she would never be able to breathe without a respirator. She was alert and awake until the end, but did not want to live that way and went out with a fight. I'll be happy to provide you with any information I can, if you feel it will be helpful.-----------------------------------Now, from what I have learned from my various doctors, the lung transplant program, the wonderful people on here, and my own research over the last two years, is that it would actually have been the pulmonary fibrosis that brought on and exacerbated the pulmonary hypertension and eventually caused the Congestive Heart Failure. So, it appears that I may actually have the familial type of pulmonary fibrosis. In subsequently talking with my mother, I also learned that before my father's death, he was telling her that he was being treated for pnuemonia...although when he eventually went into the hospital they found he was riddled with cancer. But, I can't help but wonder if he also had pulmonary fibrosis that went undiagnosed...after all, this was 17 years ago.On a totally unrelated note - I had my monthly appointment at the transplant clinic yesterday. My weight actually came back up 2 pounds and the doctor said that she would have to discuss it with the committee to see if they would want to inactivate me until I lost again. The thing is that I am still below the upper limit set for me, but she explain that they want to make sure that the gain isn't part of a trend. Fortunately, we also talked about what I might do to respond to this and she was pleased with the plans I had in place to deal with it. She told me that she would call me today and let me know...I got the call this noon time and ... I am still active!!!!! But, I have to call in two weeks and tell them what my weight is. So, I'll be taking it easy at Thanksgiving...and not making my speciality...chocolate pecan pie! sigh... But, at least, we'll be going to my brother's, so I wont have any leftovers to worry about!!!Steve aka...Knip UIP/IPF DX 9/07 VATS 12/0757 Plymouth, NH

[Guest guest]

Steve,

How very interesting. I want to study more of my family's history when I have time too. There is a great website for family tree research called www.ancestry.com.

Dr. Ganesh Raghu at the University of Washington Medical Center in Seattle, WA believes my IPF is also Familial. My brother was diagnosed with IPF in 2005 and died of respiratory failure at age 43. He was at the end-stage of the disease by time he got to UWMC. My mother died at age 56 in 1982 from a stroke but also had emphysema, which could very well have been undiagnosed IPF. My dad died at age 76 of lung cancer. I have one sister who doesn't have any symptoms but Dr. Raghu

highly recommended she get an HRCT. The scan showed ILD but no fibrosis, she was referred to a Pulmo.

Dr. Raghu asked my sister and I to participate in a research study with the University of Texas Southwestern Medical Center for familial IPF. They are looking for genetic mutations. It was a simple participation, they sent us a packet to have our blood taken along with a questionnaire and we mailed it back. They will contact UWMC for my brother's medical records and DNA. I'll probably never see the research results, but I have 3 children that now have to worry about this dreadful disease; hopefully they'll learn something.

C_53_Familial IPF_5/09Washington

To: Breathe-Support Sent: Fri, November 20, 2009 6:14:58 PMSubject: Family History Discovery

With all the time I have on my hands now that I am "retired" because of my pulmonary fibrosis, I have been working on researching my family tree on my father's side. For some reason, my father became estranged from his family when he left home at a young age to enlist in the Air Force. Growing up as a child, we never had any contact with any of his family in Texas (we were in New Hampshire). Eventually, we learned that he had a brother and two sisters back in Texas. We got names, but beyond that we learned little.So recently I started "digging". A google search of his siblings names turned up an obituary for his sister, Vera Mae. Reading the obituary, I was particularly interested to read that she had passed away after "a long battle with lung disease". Naturally, I wanted to know more! Having gotten the name of her daughter from the obit, I again did a google search and found an email address for someone with that name. So, I emailed them,

explaining who I was and my interest in learning more.Here is an excerpt of the reply that I received -I'm sorry to hear about your illness. I, too, find it interesting that you have a pulmonary disease. Mother had Pulmonary Hypertension, which was unfortunately mis-diagnosed as Secondary Pulmonary Hyptertension for several years. It wasn't until she was taken to a specialist in San , who is an expert in the disease, that she was correctly diagnosed. This was approximately 1 year before she died. We were quite shocked after that first visit when we were informed that not only was the pulmonary hypertension not secondary, but that she also had Congestive Heart Failure and what they called pulmonary fibrosis, both they believe, a secondary condition caused by the PH. We were also told that there was no known cause for it. She smoked a little in her youth, but quit in 1963 when she got pregnant with me.She was put on a myriad

of drugs, such as Tracleer, coumadin and Revatio, with little effect. If anything, they kept the disease in check until the last month when everything was doubled. Her only real chance was a heart/lung transplant. She was never on the list, but there was talk at one time of it. The specialist kept telling her that she should have been in ICU and not functioning based on the pressures in her lungs and heart. She came to live with me in Austin, Texas in October of 2007, after crashing her scooter and breaking her coccyx. After that, she had two bouts of hospitalization for staph infections, one requiring surgery on her hand. Her body just couldn't fight off ordinary diseases anymore. The final hospitalization was in March of 2008 when she apparently had what was deemed a sudden pulmonary edema. She was able to dial 911 and talk to paramedics before requiring 100% ventilation. I was on my way home from work and found her gone when I got home. Her care

giver had not been gone 15 minutes apparently when she went into crisis. In talking with her, she said Mom appeared tired, but other than that nothing was out of the ordinary. Four days later, I let her go because they said she would never be able to breathe without a respirator. She was alert and awake until the end, but did not want to live that way and went out with a fight. I'll be happy to provide you with any information I can, if you feel it will be helpful.------------ --------- --------- -----Now, from what I have learned from my various doctors, the lung transplant program, the wonderful people on here, and my own research over the last two years, is that it would actually have been the pulmonary fibrosis that brought on and exacerbated the pulmonary hypertension and eventually caused the Congestive Heart Failure. So, it appears that I may actually have the familial type of pulmonary fibrosis. In subsequently talking

with my mother, I also learned that before my father's death, he was telling her that he was being treated for pnuemonia... although when he eventually went into the hospital they found he was riddled with cancer. But, I can't help but wonder if he also had pulmonary fibrosis that went undiagnosed. ..after all, this was 17 years ago.On a totally unrelated note - I had my monthly appointment at the transplant clinic yesterday. My weight actually came back up 2 pounds and the doctor said that she would have to discuss it with the committee to see if they would want to inactivate me until I lost again. The thing is that I am still below the upper limit set for me, but she explain that they want to make sure that the gain isn't part of a trend. Fortunately, we also talked about what I might do to respond to this and she was pleased with the plans I had in place to deal with it. She told me that she would call me today and let me know...I got the

call this noon time and ... I am still active!!!!! But, I have to call in two weeks and tell them what my weight is. So, I'll be taking it easy at Thanksgiving. ..and not making my speciality.. .chocolate pecan pie! sigh... But, at least, we'll be going to my brother's, so I wont have any leftovers to worry about!!!Steve aka...Knip UIP/IPF DX 9/07 VATS 12/0757 Plymouth, NH