Re: Recently diagnosed with PF, now in need of transplant.

[Guest guest]

Oh I know you have to be in such turmoil and shock to be told you need a transplant so soon.

How are your PFT's currently and what levels of oxygen are you on?

Where are you getting your transplant evaluation?

Now we have many here waiting but not many who have had transplants. I'm sure they will share their coping methods. However, many are given every year and you can look at the statistics of the center or any transplant center here:

http://www.ustransplant.org/csr/current/csrDefault.aspx

That will show you how many they do and what percentage of the wait list normally is done in a year. If you're in the top 20th percentile of those waiting your odds would be very good.

Although there is a six month delay, you should definitely qualify for social security disability. You should file immediately. You may qualify for other programs.

Here is an excellent organization as well:

www.caringvoice.org

Also, you might read Tina's recent posts. You can do a search at the top of the page. She did an incredible job availing herself of available resources. I'm sure there are local resources in your area as well.

It makes perfect sense you don't want too much thought of the disease at any one time. You're doing the right thing in learning what you can but then coming here to learn more about living through this highly difficult period.

You will find some excellent role models here. I ate lunch with one last Friday and her blood type is her hold up. I know its got to be torture to wait but she sure does make the most of it, somehow. She still spends quality time with friends and family and just recently even started a rehab/exercise program.

Friends and family will never "get it" regardless of how hard they try. It's just not possible if you're not there. I can't "get it" when it comes to being on a transplant list because I'm not to that point yet, but others here can and will help you.

>> I'm new to this group, reaching out to you having been diagnosed in 11/07 with pulmonary fibrosis, and now being told that I am in need of transplantation, and currently undergoing screening for. This disease took my father when I was 19, and he was 75. I am 52. It all feels surreal, and happening so very fast. I've been told that currently, my transplant number would be 40, which would place me at the top 20th percentile on the list. Can anyone help me to know how you cope? I feel like some of the time I'm going to jump out of my skin, some of the time like my head's going to explode, sometimes despairing, and sometimes completely disbelieving.> > Can anyone tell me how long they've waited for transplant? Did you get a donor at all? My thoughts are all over the spectrum. I have a very strong faith sustaining me. What has helped you? Any reading you'd recommend? I find I'm not able to immerse myself in information about the disease too much at a time, as it's overwhelming. Does that make sense? > > I've had to quit my job. How do you make ends meet? As you can see, I have a lot of questions, and in turning to friends, some "get it" and many do not. What do you suggest?> > Looking forward to hearing from anyone out there..............Jean> > > ____________________________________________________________________________________> Never miss a thing. Make Yahoo your home page. > http://www.yahoo.com/r/hs>

[Guest guest]

Hello Jean:welcome to the groupI can understand how flooded your brain is right nowwhen you find out for sure you have PF it can consume you.you try not to worry about it, try not to think about it .but in reality you do....all the timeI also was diagnosed in 11/07and like you, lost family to this disease as wellmy mother died 2-days after her 59th birthdayand my grandmother died when she was 33I never met her I have seen the result of transplant from my mother's experiencewe can get into that later if you would like to know how that wentwhere do you live ?what type of PF do you have?are you on o2?Brett Bowserfamilial UIP/IPF 40 Mi.I'm new to this group, reaching out to you having been diagnosed in 11/07 with pulmonary fibrosis, and now being told that I am in need of transplantation, and currently undergoing screening for. This disease took my father when I was 19, and he was 75. I am 52. It all feels surreal, and happening so very fast. I've been told that currently, my transplant number would be 40, which would place me at the top 20th percentile on the list. Can anyone help me to know how you cope? I feel like some of the time I'm going to jump out of my skin, some of the time like my head's going to explode, sometimes despairing, and sometimes completely disbelieving. Can anyone tell me how long they've waited for transplant? Did you get a donor at all? My thoughts are all over the spectrum. I have a very strong faith sustaining me. What has helped you? Any reading you'd recommend? I find I'm not able to immerse myself in information about the disease too much at a time, as it's overwhelming. Does that make sense? I've had to quit my job. How do you make ends meet? As you can see, I have a lot of questions, and in turning to friends, some "get it" and many do not. What do you suggest? Looking forward to hearing from anyone out there..............JeanLooking for last minute shopping deals? Find them fast with Yahoo! Search. brett bowserbrett@...

[Guest guest]

Jean... welcome to our group! I always feel sad when a 'newbie' joins us but there is no better place to be for good dependable info. and support.

I am 69, Dx (diagnosed) 3-06 with IPF. Stayed stable until about a month ago and then 'something changed'....I'm now on O2, pretty much all day and tests have been done to see if I should also be on O2 during the night.

Everyone goes through what you describe. Denial was hard for me to break through. My brain went numb and I'm not positive I've recovered from it yet. This progression I've had is hard to deal with for my husband and family.

I can't help with transplant info. I'm too old and wouldn't do it anyway. I have other chronic health problems and I simply can't go through anymore.

I no longer am able to do what I did and it's a let down for anyone who faces not being productive.

We have a difficult financial time too. We sold our house, now live in subsidized apt and take it one day at a time. Medical bills are so high.

You'll find your way but it won't be done today. Keep reading posts and you'll be surprised how quickly you learn what might work for you.

Welcome

Mama-Sher, age 69. UIP (IPF?) 3-06, OR. Don't fret about tomorrow, God is already there!

Recently diagnosed with PF, now in need of transplant.

I'm new to this group, reaching out to you having been diagnosed in 11/07 with pulmonary fibrosis, and now being told that I am in need of transplantation, and currently undergoing screening for. This disease took my father when I was 19, and he was 75. I am 52. It all feels surreal, and happening so very fast. I've been told that currently, my transplant number would be 40, which would place me at the top 20th percentile on the list. Can anyone help me to know how you cope? I feel like some of the time I'm going to jump out of my skin, some of the time like my head's going to explode, sometimes despairing, and sometimes completely disbelieving.

Can anyone tell me how long they've waited for transplant? Did you get a donor at all? My thoughts are all over the spectrum. I have a very strong faith sustaining me. What has helped you? Any reading you'd recommend? I find I'm not able to immerse myself in information about the disease too much at a time, as it's overwhelming. Does that make sense?

I've had to quit my job. How do you make ends meet? As you can see, I have a lot of questions, and in turning to friends, some "get it" and many do not. What do you suggest?

Looking forward to hearing from anyone out there..............Jean

Looking for last minute shopping deals? Find them fast with Yahoo! Search.

[Guest guest]

Welcome to our little family! Sorry you have reason to be here but you are truly welcome here. This is a pretty supportive bunch in my experience. Hope you find it so.

I'm only a little younger than you so I understand well the bewilderment and despair that follows this diagnosis. I also had to quit my job in the summer of 06 after I was diagnosed. I'm on Social Security disability and I live with family because I cannot afford to live on my own. It's not what I would wish but I'm still here and that's what matters.

I'm currently not in line for a transplant as I'm "too healthy". That's fine by me as I'd like to put it off as long as possible. I've been fortunate since I've been stable since diagnosis about 21 months ago.

Friends...you're finding what the rest of us find, some "get it" and are supportive, some don't and drift away. It's human nature I suppose but it does hurt.

I wish I had specific information for you but I just wanted to welcome you and know that we are in your corner!

Beth in NC age 48 Fibrotic NSIP 06/06

"For as long as I shall live, I will testify to Love."

Recently diagnosed with PF, now in need of transplant.

I'm new to this group, reaching out to you having been diagnosed in 11/07 with pulmonary fibrosis, and now being told that I am in need of transplantation, and currently undergoing screening for. This disease took my father when I was 19, and he was 75. I am 52. It all feels surreal, and happening so very fast. I've been told that currently, my transplant number would be 40, which would place me at the top 20th percentile on the list. Can anyone help me to know how you cope? I feel like some of the time I'm going to jump out of my skin, some of the time like my head's going to explode, sometimes despairing, and sometimes completely disbelieving.

Can anyone tell me how long they've waited for transplant? Did you get a donor at all? My thoughts are all over the spectrum. I have a very strong faith sustaining me. What has helped you? Any reading you'd recommend? I find I'm not able to immerse myself in information about the disease too much at a time, as it's overwhelming. Does that make sense?

I've had to quit my job. How do you make ends meet? As you can see, I have a lot of questions, and in turning to friends, some "get it" and many do not. What do you suggest?

Looking forward to hearing from anyone out there....... .......Jean

Looking for last minute shopping deals? Find them fast with Yahoo! Search.

[Guest guest]

http://www.coalitionforpf.org/AboutUs/resources.aspSome good reading infro P UIP 8/00Gavard wrote: I'm new to this group, reaching out to you having been diagnosed in 11/07 with pulmonary fibrosis, and now being told that I am in need of transplantation, and currently undergoing screening for. This disease took my father when I was 19, and he was 75. I am 52. It all feels surreal, and happening so very

fast. I've been told that currently, my transplant number would be 40, which would place me at the top 20th percentile on the list. Can anyone help me to know how you cope? I feel like some of the time I'm going to jump out of my skin, some of the time like my head's going to explode, sometimes despairing, and sometimes completely disbelieving. Can anyone tell me how long they've waited for transplant? Did you get a donor at all? My thoughts are all over the spectrum. I have a very strong faith sustaining me. What has helped you? Any reading you'd recommend? I find I'm not able to immerse myself in information about the disease too much at a time, as it's overwhelming. Does that make sense? I've had to quit my job. How do you make ends meet? As you can see, I have a lot of questions, and in turning to friends, some "get it" and many do

not. What do you suggest? Looking forward to hearing from anyone out there..............Looking for last minute shopping deals? Find them fast with Yahoo! Search. P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 8/04, PH 3/06, ILL yo 59

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

You are so welcome here. All of us either have been where you are or are there now. We "get it". There are the feelings of fear, grief and disbelief that just washes over us when we least expect it. I am so grateful to have these wonderful people here. It is a good safe place to fall.

It is especially traumatic when your job is gone and you are dealing with all the financial stuff when you should be concentrating on your healthcare needs. I hope that you have filed for SSDI.

Pursue the transplant route because the workup itself is so thorough. Stay as active as possible. Do rehab. Make yourself learn about this disease, even if it is overwhelming. This hateful disease is your enemy. Your best weapon is knowledge.

Hope that you stick around and that we can help each other.

Hugs, Joyce D.

Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 >> I'm new to this group, reaching out to you having been diagnosed in 11/07 with pulmonary fibrosis, and now being told that I am in need of transplantation, and currently undergoing screening for. This disease took my father when I was 19, and he was 75. I am 52. It all feels surreal, and happening so very fast. I've been told that currently, my transplant number would be 40, which would place me at the top 20th percentile on the list. Can anyone help me to know how you cope? I feel like some of the time I'm going to jump out of my skin, some of the time like my head's going to explode, sometimes despairing, and sometimes completely disbelieving.> > Can anyone tell me how long they've waited for transplant? Did you get a donor at all? My thoughts are all over the spectrum. I have a very strong faith sustaining me. What has helped you? Any reading you'd recommend? I find I'm not able to immerse myself in information about the disease too much at a time, as it's overwhelming. Does that make sense? > > I've had to quit my job. How do you make ends meet? As you can see, I have a lot of questions, and in turning to friends, some "get it" and many do not. What do you suggest?> > Looking forward to hearing from anyone out there..............Jean> > > ____________________________________________________________________________________> Never miss a thing. Make Yahoo your home page. > http://www.yahoo.com/r/hs>