Sep 9, 2014

Idiopathic Pulmonary Fibrosis

My mother has idiopathic pulmonary fibrosis.

This is a disease that is 100 percent fatal for every patient. Have you ever heard of this rare disease? Did you know: 40,000 people will die from pulmonary fibrosis (PF) this year -- the same number of fatalities as from breast cancer.

There is no known cause or treatment for PF, and the disease is relentlessly progressive; average prognosis is two to five years from diagnosis. PF can be inherited, but most cases are idiopathic -- meaning the cause is unknown.  She was diagnosed almost two years ago.

She has been hospitalized three times since the end of June.  My father was at the end of his cancer treatments then.  To visit her, I had to push him in a wheelchair because it was tremendously painful for him to walk. 

Two weeks ago, the Palative Care Team called a family meeting for my mother.  She is at what the medical field calls "end stage."  There is nothing more they can do for her.  Two days later, we arranged for hospice to deliver equipment to my house.  My mother will stay with me until this awful disease takes her life.  The doctors think she has a matter of months.

PF patients gradually lose the ability to process oxygen as their lungs fill with scar tissue and become like concrete.  She's been on oxygen 24/7 since June.  She can no longer walk without her oxygen level dropping to 50% or lower.  Then it takes 20 minutes or more for it to rise back to 80%. 

Four times as many people have pulmonary fibrosis as ALS or cystic fibrosis.

Since 1999, the number of patients with PF has increased by 156 percent, to more than 128,000, and more than 50 percent of cases are misdiagnosed for a year or more.

A lung transplant is the only treatment option to extend life, but 50 percent of those on the list will die before receiving a transplant.  Because my mother also has COPD, we were told she is not a candidate for a transplant.

September is Global Pulmonary Fibrosis Awareness Month. For more information go to www.pulmonaryfibrosis.org.

Read more here: http://www.tri-cityherald.com/2014/09/07/3138441_letter-bringing-awareness.html?sp=/99/1426/965/&rh=1#storylink=cpy

69 comments:

Anonymous said...

Meari - I am so sorry to hear about your mother. You and your family are in my thoughts.

Linda M
Morristown, NJ

Mrs. GraceWorks said...

Hugs, Meari. I am glad you will have your mother with you at this point in her journey. I am so thankful for the time I got to spend with my Mom before she died a few months ago. May you be able to find peace in God through the next days and weeks. My thoughts and prayers are with you!

Tricia

Mrs. GraceWorks said...

Hugs, Meari. I am glad you will have your mother with you at this point in her journey. I am so thankful for the time I got to spend with my Mom before she died a few months ago. May you be able to find peace in God through the next days and weeks. My thoughts and prayers are with you!

Tricia

Anonymous said...

oh Meari, I am so sorry to hear of your mother’s illness. How terribly hard this must be for you and your family, with your father passing earlier this year. Gentle hugs to you and yours as you deal with all of this.

Kathy N in sunny southern Alberta

Gillie said...

Dear Meari, sending love to you and your family. I am so sorry.

Anonymous said...

I am truly so sorry for both, Meari. Is there no chance for any type of lung transplant?

Carolyn

*-* said...



Meari, my thoughts are with you & your Mother & family. I'm so sorry that you have this to cope with for you all.
Kay.

Anonymous said...

Hello Meari ~ What a very well written and informative post describing your Mother’s illness. I am so very sorry to hear your family is going through this very difficult time. What a blessing for your Mother to be able to live in your home.

Please know you all will be in my thoughts and prayers....

Joan

Vicky L said...

You have been on a rough road this year. I am sorry you are going through it. Your post was very informative. Many hugs and prayers to you and your family.

Scooty said...

I am so sorry to hear about your mother. You have had (and continue to have) a very rough year. Just remember, that when one door closes, another will open. I am so glad you are able to keep your mother with you - it will be beneficial for both of you. Hugs! Judi in Phoenix

Anonymous said...

Oh Meari, my thoughts and prayers are with you. I know what you're going thru. Will be thinking of you. It certainly not easy.

Melissa J. in SW Ontario, Canada

Vicky said...

{{Hugs}}

Pam in IL said...

Meari, I'm so sorry that your mom is going through this. You and your family are in my thoughts and prayers. We lost a dear friend to this disease just before Christmas.

glenda said...

My heart hurts for you, my friend.

Thinking of you always.

Kathy A. said...

Meari I am so sorry to hear of your mothers ill health. How wonderful for your mother to be with you in her final days. Sending warm hugs

Anonymous said...

My thoughts and prayers are with you and your mother.

Anonymous said...

My thoughts and prayers are with you and your mother.

too_busy_to_stitch said...

Meari - I'm so sorry to hear your news - what a terrible time you are having. How wonderful for your mum to be able to stay with you - I was glad that my mum was able to stay at home until the last few days, when she didn't know where she was anyway. Big hugs from the UK
Viv x

Sue said...

Just know I pray for Mom and you each day sweetie; love you.........

SM
xoxox

Irene said...

I'm sorry to hear that your Mother is doing poorly but pleased she will have the comfort of staying with you through this awful time.

I know you will take good care of her; make sure you take care of yourself as well.

My thoughts are with you
Irene

Mouse said...

((((huge Hugs)))) love mouse xxxxx

Sharon said...

Praying for a peaceful transition for your mom and your family whenever that time is. Hugs to you!

cucki said...

My dear friend Meari - I am so sorry to hear about your mother. You and your family are in my thoughts. Hugs xx

Thoeria said...

I am so sorry about your Mum Meari. You and your family are all in my thoughts during these trying times {{HUGS}}

Kay said...

Meari, my heart goes out to you and your family during this beyond difficult time. Try to cherish every moment with your mom, many prayers for your family

Denise SA said...

Dear Meari wish I could hug you as I have no words to comfort you. It's good your mum is coming to spend time with you and I hope you can take comfort in that.
Hugs
Denise

Vickie said...

I am so very sorry Meari. God bless you for keeping your mother with you.

Faith... said...

Meari - so sorry you are having to go thru this with your Mom.

I will keep your family in my prayers.

Cricket-bug Corner said...

I'm sorry Meari!

CJ said...

Oh Meari, I will be praying for you and your family.

CJ

Dirty Martini Queen said...

Meari,
So sorry to hear about your Mom's illness. Just remember at this time to enjoy the little
things, laughter is the best medicine and take care of yourself as well as her. Sending big hugs!
Donna

Donna Pheneger said...

Meari, I'm sorry to hear about your other being so ill. I will be keeping you and her in my prayers.
Blessings, Donna ILCS

Katie said...

It's so scary what diseases and disabilities are out there in the world. We are so blind to the different ones. Thank you for teaching me about this one. I'm so sorry it's a lesson you are able to teach. I will keep you in my thoughts.

Anonymous said...

Meari,

My deepest sympathies. These words cannot begin to express my sorrow for you and the rest of your family. Our heart are with you.


Sally

Anonymous said...

I am so sorry Meari. Will you and your Mom in prayer. Sorry about your Father, I guess I missed the post.

Val

Anonymous said...

dear meary I'm near you with all my hearts. Also my mother was operated 2 months ago for a breast cancer and now she's under radiotherapy.

Be strong

angela

Anonymous said...

Dear Meari,

I'm sending prayers and positive thoughts for you and your family! I am very sorry for your troubling circumstances.

Ann

Anonymous said...

Dear Meari, my heart goes out to you. You will be in my thoughts and prayers. Devastating news it is. Sending big (((((HUGS))))).

Love,
Brenda H
Blue Ridge Mtns of VA

Anonymous said...

I am so very sorry Meari. God bless you for keeping your mother with you.

Vickie N

Terry said...

Prayers to help you all get through this difficult time.

Fay and Charlette said...

Praying for strength, physically, spiritually and emotionally, for you and yours during this time. Hugs, Christina in Miami

Anonymous said...

I'm sorry to hear this Meari,

Christine

Anonymous said...

my thoughts and prayers are with you and your family, I read your blog, I have never heard of this terrible disease. Hospice is such a wonderful group, they stay with you and help you .and keep your mom as comfortable as possible.

terri

Anonymous said...


Meari,

Prayers go out to you and your family. This is an extremely difficult time for all of you, made even more difficult by the recent passing of your father. I read your blog and like many people, was unaware of this disease. I see that your mother will be moving in with you. May you find strength in the love of family and friends during this most trying time.

Blessings to your mother, you and all your family,

Nancy V

grannystitches said...

Im so sorry Meari, I pray your mom is comfortable and resting there at home with you in this sad ti.e in your lives. Hug and tell her you love her all you can.

Anonymous said...

Meari

Im praying for you and your family.

Hugs
Sharon

Anonymous said...

I am so sorry to hear that your going through a terrible time in your life. I will say prayers for you and your family.

Regina in Pa.

valerie said...

I'm so sorry to hear this news about your mom, Meari. I hope that she is as comfortable as possible . Hugs to you and your family.

Anonymous said...

Hi Meari,

My Mom had IPF. They do not know what causes it.

They asked her about working in a coal mine & being around asbestos. She beat it & lived to be 64. She had this in 1980. At the time I was pregnant with my second daughter (Malinda, MAB here on the group) She made up her mind that she was going to beat the IPF & she did. She wanted to see the new baby. The only thing that I do not know if they asked her was about the inks & chemicals from her printing business. My Mom was a positive thinker. When she made up her mind to do something, she did it. She also beat bladder cancer.

Encourage your Mom to think positively. I will keep your Mom in my prayers & you also.

Pam in PA

Southpaw Stitcher said...

So sorry to hear about you mom, Meari. What a tough time you've been having this year! Remember to take care of yourself, too, while you're taking care of your mom. {{{hugs}}}

Mylene said...

Sending prayers for you all. (((hugs)))

Karen A said...

Meari, our prayers and thoughts are with your mother and you and the rest of your family.

Southpaw Stitcher said...

So sorry to hear about you mom, Meari. What a tough time you've been having this year! Remember to take care of yourself, too, while you're taking care of your mom. {{{hugs}}}

Anonymous said...


So sorry to hear this. Please know you are in my prayers.

Judy in Kansas

Anonymous said...

I am so very sorry, Meari. I've been thinking of you and wondering how you are. I was afraid that since we hadn't been hearing from you it meant your mother had taken a turn for the worse.

Karin

Anonymous said...

Meari,I am so sorry to hear about your Mom and please cherish the time you spend with her. I did look after my Mom until her passing and know what it is like to be going through this ordeal.

I will keep you and your family in my prayers.

Hugs
Marl

Cathy Habermann said...

Meari,
Please know that you have an army lifting you and your family up in their prayers.
Cathy

Claudette497 said...

I'm so sorry to see this - I'm thinking of you and trying to send some strength and warmth across the miles.

Bette said...

Meari, I'm so sorry to hear about your mother. So glad you can have this precious time together. Thank you for shedding light on something I didn't realize was out there.

Anonymous said...

Oh, Meari, I'm so sorry to hear that. I am thinking of you.

Dorrie
Prague, Czech Republic

Anne said...

Oh my dear Meari...so sad to hear about your lovely mother having pulmonary fibrosis. I have heard of it but didn't know it was a growing issue. My deepest sympathies go to you and your family. Hugs to you and to your mother. Keep strong.

Carol said...

I just can't imagine the pain your family is going through, Meari. Having just lost your dad and now losing your mother so soon--it almost seems like too much to bear. I hope she will be as comfortable as possible during her time with you... Sending a hug your way and thank you for educating us on this heart-breaking condition.

Rebecca said...

So sorry to hear about your Mom. What a thought year it has been for your family. Hugs to you and your Mother, take care
Rebecca

Anonymous said...

Meari,

I am so sorry to hear, keeping you and your family in my prayers

Jennifer M

Sheryl S. said...

Sad to hear of this dreadful illness and hope your mum will find peace and comfort being with you during this difficult time.

Anonymous said...

I am so sorry you are having to go through this...when my father was in hospice (I had moved in with my parents so they wouldn't lose their house), they trained us how to do everything...from dispensing meds to emptying his cath bag to turning him in bed...but we hardly had to do anything as they seemed to be by almost every day...and when they did not come by, they called to check on us...it really was a whole healing process as they saw to my mother's mental state as she was going through this as well...

I still have great guilt as I was the one who had to break the news to my dad that nothing more could be done for him (he was a non-compliant diabetic with a severe heart condition...had multiple stints)...the doctors kept stringing him along until one finally told me that nothing more could be done (but he was too chicken to tell him)...it was at that point he gave up...mercifully, he went fast (we thought we would have more time, but only had a couple of weeks left with him at that point).

Just know that my thoughts and prayers are with you...enjoy every moment you have left together...

Laurie

Linda said...

You and your family are in my prayers. Hopefully there are many good days for you to share.

Valda said...

Meari....I have no words after reading of your mother's illness. Your family has had a very hard time with your father's death and now your dear mother's illness. I am keeping her and your family in my thoughts and prayers!

Anonymous said...

Thinking of you and your family...

Laurie