Forum Replies Created

  • 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 more tests which I am in the process of doing. We have just retired our business and in the process of preparing our house for sale.Due to high cost of living in Stanford, we have purchased an RV 5th wheel and a truck (from my dear brother and his wife) and will be heading to that area as soon as possible.
    In a nut shell, that is it for me as to what has been happening. Hope you are doing OK Charlene. It was devasting and the saddest news to hear about Kim’s passing. This news that you shared came a little too late for her. I believe they are still in the research phase. But still great news.
    Take care
    Patricia

  • patricia-hayden

    Member
    February 1, 2019 at 1:42 pm in reply to: Lung Transplant Considerations.

    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, emotions and even logic have been a steady ride this year but even then and now I know I was going for the transplant. 65 is to young to give up. I choose to go through this to be with my family and friends longer then if I did not TX. I also believe this is Gods will. I also believe I still have some more good to do in this world.
    Love ya Girl and Take care.

  • patricia-hayden

    Member
    November 22, 2018 at 3:27 pm in reply to: An Unexpected Difficulty of Pulmonary Fibrosis.

    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

  • patricia-hayden

    Member
    November 20, 2018 at 12:08 pm in reply to: The Dramatic Highs and Lows of Living with IPF.

    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 life.
    Happy Thanksgiving to All

    Patricia

  • patricia-hayden

    Member
    October 30, 2018 at 9:35 am in reply to: My transplant journey

    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 65 in January.
    Again thank you for sharing, it makes my day and life better.

  • patricia-hayden

    Member
    October 23, 2018 at 10:37 am in reply to: Things to Keep in Mind When Considering a Lung Transplant

    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.

  • patricia-hayden

    Member
    October 12, 2018 at 12:10 pm in reply to: Dealing with Negativity

    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 healing to me.

  • patricia-hayden

    Member
    September 27, 2018 at 11:27 am in reply to: Even Our Best Efforts to Stay Healthy Sometimes Fail

    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. I am having to crank my air up more. Last month I was at 2 and 3 and now it is 4 and 5. Wish someone would invent a cordless device to up the O2 when needed.
    Also after finishing Pulmonary rehab (3 months of sessions), I got bronchitis which set me back totally and all the strength I had mastered was gone after a month of this.
    I am starting over in trying to get my strength back for transplant. It is so hard. The bronchitis took me down a notch in the disease. I remember at a lecture in rehab, the Doctor said that the disease progress along a straight line and then with an incident, it drops down to a worse then before condition.
    Thanks for sharing and giving me an outlet to voice my life and opinion. Healing hugs to you dear girl.

  • patricia-hayden

    Member
    September 25, 2018 at 9:07 am in reply to: Introductions & Welcome!

    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 most irritating.
    Also, feet so cold they feel like ice.
    Here are some of my meds,
    losartan 50 mg tablet
    mycophenolate 360 mg delayed release tablet
    metFORMIN 500 mg tablet
    atorvastatin 80 mg tablet
    predniSONE 2.5 mg tablet
    Non of these suggest side effects of the above conditions.
    Thanks for any input out there.

  • patricia-hayden

    Member
    September 20, 2018 at 4:27 pm in reply to: Post-Vacation Blues

    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.

  • patricia-hayden

    Member
    September 20, 2018 at 12:51 pm in reply to: Post-Vacation Blues

    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 U of Florida Medical and inquire about their transplant program which was highly rated on the web. I figured it could do no harm to inquire. This is where we want to retire. In the sunshine. Not dreary, wet, gray Seattle.
    Hope to live our dream.
    I love what Katie said at the end of her post about” if you have the opportunity to move somewhere to feel that calmness and that safety then I wouldn’t hesitate for a second”.

  • patricia-hayden

    Member
    September 20, 2018 at 12:43 pm in reply to: Post-Vacation Blues

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

  • patricia-hayden

    Member
    September 18, 2018 at 12:34 pm in reply to: Post-Vacation Blues

    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 husband, Mike, kids came from Colorado for 12 days. They came to help us get our house ready in case we need to sell. Lots of work got done (not me)We then went to Port Ludlow and stayed in a nice condo on the water. I think water is so cleansing.
    Before we left the resort I wanted to go for a swim and my beautiful daughter Lacey, walked around a good size pool carrying my machine. I circled the pool twice and cried.
    I also received the gift of her being my caregiver along with my husband when they call me in for a transplant. More tears.
    Thank God I am gifted with this family. Lacey has committed 3 months to come here and take care of me.Her home and close family is in Colorado and she works full time.I believe her job will be waiting for her when she returns.She is amazing!
    OK, I got off track. Back to vacations.
    I cannot walk for long periods so we got me a little mobile cart. What freedom. Went all around Port Townsend. Had lunch outside with the kids and my dog, Buckie. We sat by the water. I had an icecream. We watched our grandson ride his skate board. He is really good. I got to keep up with them all in my cart. As long as I can I will do what I can because the opportunity may not come again. Like swimming in the pool.
    Since they left, I have been depressed. I hope this passes. I know it will.

  • 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.

  • patricia-hayden

    Member
    November 2, 2018 at 10:40 am in reply to: My transplant journey

    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.

  • patricia-hayden

    Member
    September 11, 2018 at 3:10 pm in reply to: The IPF Patient's Experience with Prednisone

    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 take neither, I know the results are better being on rather then off the meds. I absolutely could not handle the pred. with out the Antidepressants.
    Just FYI I was diagnosed with PF about 10 years ago. but the progress had been slow and only in Oct of last year did I lose my breath ( I believe after all the fires) I live in Washington State. I am only 64 years old and do not feel life as far as my health is concerned has not been to kind to me. I will keep pushing on. I have had a lot of wonderful experiences in my life.
    I am currently making ways to get on the lung transplant list at the U of Washington. Not totally sure if this is the right decision as of all the research I have done but I have to make a decision one way or the other. I would like to end my life not on a breathing tube. I want to golf again someday and ride horses, be with my family and my dog, Buckie. Hopefully I can share more on this wonderful blog that we have been gifted with.