Patricia Hayden

Thank you for posting this great information Charlene. I know it has been awhile since last writing. I have been living in a whirl wind. Any person waiting for a lung transplant should listen to this report. It is very hopeful information.
Although I was denied a transplant at the UofW, Stanford Medical in Ca. has agreed to list me after a few…[Read more]

Hi Charlene,
Hope you are enduring the cold freeze. I have come back to your post a couple times wanting to comment and finally here I am. First of all thank you for doing this blog. What a gift.
I am in my final months of being evaluated for lung transplant at the U of W. I will then be put on a list to wait for a lung. My thoughts, feelings,…[Read more]

Oh yes, can I ever relate. Thanks for this post Charlene. I am not alone once again.Go easy on yourself. I have to do this or I would forever be in turmoil.Learning so many life lessons with this condition and I am turning 65 in January.
Take good care,
Patricia

The highs and lows used to be more in number then now. I think acceptance has been my biggest help. This has come about slowly and is still not 100 percent everyday and probably never will be. But as I let go of the control , it becomes easier. My belief in God has helped greatly and has grown as I deal with this disease and phase of my…[Read more]

Dearest Charlene. My posts are for the author and anyone who can relate. I appreciate your input and look forward to it. Thank you for your prayers.

Thank you for sharing your story. I go in December 4th for the final appointments needed to get on “the list”. My story is similar to yours. Going along doing ok, then wham, I had a flare that put me on 02 24/7. That was one year ago. I am afraid of the surgery but hopeful that I will have more time with my dearly loved husband and family. I turn…[Read more]

Thanks for the positive sharing. I go in for evaluations on December 4. All my appointments will be on one day. I have been on O2 for 1 year (24/7) 65 year old. I want to have a better life and enjoy retirement with my wonderful husband.

So sorry to hear of your pain that you are currently dealing with. My heart goes out to you. I remember the waves from 30 years ago when my Father passed at age 67. Way to early. Give yourself time. You will heal. You have a dear heart as I have witnessed in your posts. Thank you for sharing and participating on this forum. Your touch has been…[Read more]

So sorry you ended up in the ER last night. We can only do so much for ourselves let alone what others do. Because I am an ex-smoker ( still think about it) I can usually smell tobacco first. Never thought of that as a gift.
When I saw the title of your blog, I related to my best efforts I have made and being set back by this disease in it self.…[Read more]

Not sure where to post this, so this was my choice. I have PF and am in the process of getting on the list for a transplant.
I experience daily, hot and cold (alternating) body condition. The hot is so hot I sweat and the cold is such I put on more clothing to stay warm. Does anyone else experience this. It happens almost all the time and it is…[Read more]

I just wanted to let you know that I would love to take credit for Daughter (Step) Laceys wonderful attributes, but I would have to say it is her real Mother Kathy, who has taught her kids how to care.

I too am looking at making a possible move to Florida from Washington State. Husband and I had dreams of going to a retirement community there. Dream has been ongoing for about 10 years. Of course this is an active retirement center and hope to participate after lung transplant if God is willing to have us there. I decided yesterday to contact the…[Read more]

Thank you Katie. Love what you shared. Thank you.

Hi Charlene, Messing with the computer and went to the blog again and bam! there was an invitation to reply. YEAH
First of all love you picture. You look powerful standing there by the Sea and vulnerable as well with your breathing machine.
I also had a vacation a week ago and it was mostly bliss. Something I have been needing for a long time. My…[Read more]

I was diagnosed with Polymyocitis in 1995 about age 35. Really have no idea except maybe hereditary. When they finally diagnosed me, along with other medications they put me on prednizone. 40mg. I went batty. I was put on anti depressant and that helped. I take pred. now for the Poly and still take the antidepressants. Although my choice is to…[Read more]

NOW THAT MAKES SENSE. i DID NOT CONTRIBUTE THE FOG TO THE DISEASE BUT TO MY AGING. THANKS EVERYBODY FOR POSTING TO THIS. I BELIEVE IT IS THE DISEASE AND THE MEDS NOW AND WILL GO A LITTLE EASIER ON MYSELF. BE SURE TO LET YOUR CAREGIVERS AND FRIENDS AND FAMILY KNOW ABOUT THIS. MIGHT HELP THEM TO UNDERSTAND AS WELL.