Introduction
IPF is a rare, incurable disease of the respiratory system during which fibrotic tissue and scars appear in the lungs. It leads to death within 2–5 years after the diagnosis.
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I have much to do. Finish projects in order to sell the house, empty it, find another for Mark, accept leaving this good earth gasping for air, and deal with guilt of leaving Mark alone. But I cannot. I am stiff, but want to run. I am shaking, but want to rest. My voice is a mere whisper, but I want to scream. I want answers, but there is no one to ask. I don't think I will ever accept this. The days of watching my father suffocate for two weeks with anxiety levels as high as the sky, and my sister calling 24/7 for months as she gasped for air, have never left, and now it will be my turn.
I have been offered nothing to calm me, lost fifteen pounds in two weeks, have not slept. No medication for fibrosis that allows more breath, will have to carry oxygen. and the final function tests are not scheduled for five weeks. That's how long it took to go from no problem to breathless, so I am calling Cleveland and Pittsburgh recommendations, hoping to be seen sooner. My rheumatologist for Sjogrens (which may be the cause), primary care, and cardiologist act like time doesn't matter, and it may not if there is no real treatment. If any trials or experimental drugs offer hope, it will of course take our retirement fund for drugs because Medicare plans cover nothing. Irrelevant.
So my dear sweet stitching pals and blogging buddies, I don't have the focus or mindset to continue. Lots of linen and charts and samplers to offer, maybe when I find peace, I can come back for that.
Thank you for your friendship over the last ten years. I can't begin to explain how enjoyable, enlightening, inspiring, and better my life has been with you in it.
Love you.
God bless.
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53 comments:
I am very sorry Marly. One day at a time. Yes, there is VERY, VERY MUCH TO DO, but you can only do one thing at a time. Definitely call Cleveland and Pittsburgh. You continue to be in my prayers.
dearest Marly, Stop...stop and just let our love flow to and into you. you will find the strength you need and i promise you that when you do you will be stronger for it. medicine makes advances, life goes on, and you are a continuous source of inspiration and strength to so many people. Enjoy chocolate, make each moment of your life be a source of some joy to yourself. you are loved by many
Vickie said it so well and all I can add is to tell you I've so enjoyed your postings over the years filled with warmth and humor. Now having read your message I feel like I'm loosing a close friend. There is always hope for a mistaken diagnosis so definitely try to go to experts in Cleveland or Pittsburgh. Having lived in the Pittsburgh area for many years, I know there are some remarkable physicians there, and everyone knows of the wonderful reputation of the Cleveland Clinic.
With caring thoughts for you, Jan
Never give up hope, dear friend...there are answers out there and whatever they may be, we are here for you in whatever support you may need. In your emotional state,
you cannot be expected to take the actions you suggest until you are calmed, assured and given direction by experts in the field. Exhaust every authentic recommendation at your disposal. Either Cleveland, Pittsburgh or both may hold the key to alternative measures... there is time, not to be wasted, but time to pursue whatever
solutions that can be found... A discovery a year from now could be the miracle we
seek. In the meantime, you continue in my daily prayers and I urge others, even though you may not be so inclined, to do the same for Marly .. they may bring her
a sense of comfort and peace....and who knows what else.... love and blessings.
I have enjoyed getting to meet you through your blog. You remain in my prayer. Your family and animals also. May you feel the love, calmness and strength of the Lord as he holds all of you.
Exhaust every avenue. Pittsburg or Cleveland could give you new alternatives and hope. Ask for something to help calm you. Anxiety makes breathing harder. DONT GIVE UP!!
I will miss you. May the Lord be with you. All my love from the Netherlands
Dear Marly, I’m so very sorry and i will keep you in my prayers. Please don’t lose hope. Lots of love from Germany.
Never lose hope Marly, it is what keeps us moving forward . And it is what keeps medical scientists and researchers going even when they run into roadblocks. And it is why the birds sing before the break of dawn. HOPE....
Marly, I am so sorry to hear this news. You will be in my prayers every day. Lots of love and hope. Lenore
what about a pulmonary interventionalist
praying good for you
My dear Marly, I'm so very sorry to read this. You never know what might be just around the corner that could help. Sending you all the love and hope and prayers.
Marly, So sorry to hear the diagnosis. I will definitely be praying for you.....praying that the Lord will give you a peace and calmness in the coming days.
oh marly, such sad news from you, i am so sorry. if you want to talk, cry, scream, i'd consider it an honor to be your firing squad. wishing you peace, get some rest. hope to hear from you or see you back here again. xo
Marly, I am so sorry to see your diagnosis. By all means call Cleveland and Pittsburg. And never give up HOPE. Take each day as it comes and know that I'm adding my prayers for you and Mark. I've so enjoyed getting to know you through your blog and I hope to see you here again. Hugs.....Cherie in WI
Marley I’m praying for peace, comfort and a cure. You have brought me so much pleasure over the years. Your followers love you.
Sincerely sorry for your situation. You enabled my stitching, beginning with the PS Santas in your Christmas displays, turning into all things Prairie Schooler. Wishing you comfort and peace; medical science is always coming up with miraculous answers, hoping that there is some help for you as well. Don't give up hope.
Your diagnosis is shocking and I wish you as much help as you can get to ease your suffering.
So very Marly....thinking of everyone and everything else other than herself. But, girl - you aren't one going down without kicking and screaming. As so many said, do not give up hope and do NOT stop fighting. Yes, call Cinnci...call Pittsburgh...call everyone you can think of and then call some more. I only wish there were someone who will fight for you like you have fought for some many. I am, as you know, a bit of a pessimist, but I am NOT going to just let you go. Besides, you're too stubborn and too much of a craba** to just throw in the towel and start packing up the house. It's going to take time to wrap your head around this...give yourself that time...then dig in and give 'em hell. I love ya GF...and please know I'm praying like hell (is that an oxymoron??)...and you know where I am at if you want to scream, yell, rant, melt or puddle. And if there is anything I can do in any other useful way, PLEASE reach out. (But, nope...ain't taking care of Mark.) ~Robin~
Don't go without a fight. . . You have fought so much for so many, don't give up! I love your crab ass self. . . . It's like we're twins or something! Gentle hugs and please know, I'm praying for y'all.
Dearest Marly, I am never any good in these situations but I think you have a good long time ahead of you, so don't throw in the towel just yet. There are miracles waiting around every corner and wonderful caring physicians with a wealth of knowledge and skill. You will find them. In the meantime, the collective prayers of a legion of people who have gotten to know you and love you will be heading up to the heavens. I know you will face this with the inner strength and determination that you have demonstrated in caring for those around you. We all love you!
Bonjour,
Merci pour tout ce que vous avez déjà partagé avec nous et tout ce que vous partagerez encore avec nous.
Je vous souhaite bon courage et je prierai pour vous.
Amitié
Céline
You do not seem like the kind of person who would just throw in the towel. Please don't give up. Fight like hell! I know there is something that can be done. You keep fighting, the rest of us will keep praying and you will be around for a long time. Please believe that.
Marley all I can say is never give up the good fight! In two to five years there can be a cure discovered or medication that will help your symptoms. Yes do get another opinion and for goodness sakes! Ask for something to help calm you. You do not need to suffer now or later. The Angels from Hospice Care stepped in to take care of both my parents and grandmother. They left this earth peacefully and so will you when it is your time. We will be here to listen if you need to scream, complain, whatever. We will be here for you. Take care and I will miss your crabby posts!😊
Marly, my heart is breaking, even though I barely know you. This seems so final, but I really do hope that someone can help you in your time of great need, there must be something that can be done, we can get men on the moon for God's sake. I don't know what else to say, but hang on in there and I shall be thinking of you often. Love Sandra xx
Marly it's a hard conclusion what you have heard and of course how you react is very normal to this news.
But Marly you will call both other hospitals for more treatment and such because in the last years there is so much more they can do for treatments. The doctors said to my husband that he was uncurable because there were only 5 people in the world with his desease,but he got an experimental treatment and instead of a month he lived 11 months and thanks to our gp he never had to gasp for breath.
Please continue your blog and throw out your frustrations that will help you a lot.
As always in my prayers and a big hug for you.
Lots of love for you and Mark
Truus from Holland
Dear Marly,
From France I know that I'll stay learning you every morning ! I send you many many love stitches. Big hug.
Isabelle
Life is NOT fair my dear Marly. You must take time for yourself. Mark is strong........don't try to clear every thing up for every one else.
Get more medical opinions, don't give up. That's not you.
I'm so very sad that you have ALL of this to deal with.
Have two dear friends with cancer, one with muscular dis trophy and can not think about losing you and our friendship over the many years.
God bless you and heal you and give you peace.
You are in my thoughts and prayers !
Much love,
Charlotte in Va.
I am so, so sorry for this diagnosis and understand your pain as my family has suffered very similar diseases, myself Lupus. I want to thank you for all you have contributed to our lives with your love of stitching and your family of kitties...love hearing about them. Know that you have made a difference in so many lives and pray that you will be able to find a medical professional that will see you soon and offer some comfort. My heart is with you...
Oh Marly. I have enjoyed reading your blog for many years. I am sad to hear your news, but there is always hope. I will keep you in my thoughts. Just one day at a time.
Dearest Marly, my heart is breaking for you. I am so very sorry that you are going through this, but in all the years that I've been following your blog, you always struck me as someone that never backs down from a fight, so you can't give up now. We are all praying our hearts out that the good Lord sends you the strength & the patience you need to exhaust every avenue to find someone to help you. Please, please don't give up hope yet.
None of us can even begin to imagine what this is doing to you, but know that we all love you, that we are all praying for you & we are all very grateful to you for all the joy & laughter you've brought to us over the years. We aren't ready to give up on you girlfriend. Miracles do happen.
God bless you, sweet lady. Stay strong.
Marly...considered yourself hugged...a long heartfelt hug...and a second one from my Annie. Get a second opinion. We will fire up a candle and send up prayers and good thoughts. xo
I woke up this morning 2 am, because I have a stupid shoulder problem that is worse at night. So sleep was impossible , I decided to check my emails. I then read yours, Marly I am so very sad about your diagnosis. Through your blog I felt like if I was ever in your area and saw your house I could just stop in for a visit. After a few minutes of explaining who I was we would get comfortable talking samplers, boxes and cats. I would walk around your home and yes agree that the cupboard looks better that color. If it were around Christmas I could admire your mantel in person. Probably asking where is my favorite stitched postman piece? Exhaust every clinical trial you can find, hope is what keeps us all going. I am not a prayer but I hope with all my being that you will be the exception and will be cranking and crabbing along for another 15-20 yrs. Love Mary
I am so sorry. You will be in my thoughts and prayers.
Marly, I was so saddened and sorry to read of your diagnosis. But please keep fighting the good fight!! My brother was given 5 months 5 years ago. There is always hope! Miracles do happen! Many thoughts and prayers are coming your way. And as hard as it may be, stay strong. Love to you.
One day at a time. You are loved by so many. Every day I would log on to your blog and tell my husband your stories as if I had just talked to a friend. Never give up hope. Every day new cures are being found.
Enjoy lots of chocolate.
Roann
I was hoping the diagnosis from the new doctor was wrong. As others said - please check with Cleveland or Pittsburg, including any financial help available. IIRC some things can't be considered for aid, like retirement funds(?). And *try* not to take on doing everything (even more than you already do) yourself - as much as you'd like to, others will need to learn to do things themselves.
You'll be in my thoughts even more. (((hugs))) We love you too.
My heart breaks for you. I have no words that have not already been said to support and pray for you. First, find a new doctor. Call the UPMC 1-800-533-UPMC. There are medications that have been shown to slow the pace of the disease up to 50%. The one I know of is called. OFEV. I believe there is a research study at UPMC that has a few other options. Please dear lady do not give up. I am sure Cleveland has resources as well but I am not familiar with them.
So sorry for your health problems, we will miss your lovely blogging.
Here is a link to the doctors near me who specialize in IPF. I know there are doctors listed in Erie but I am not sure if they are part of this group or part of their treatment plan. I'll keep searching closer to you.
https://www.upmc.com/services/pulmonology/conditions/ipf
This is the link to a specialty center for this disease specifically. https://www.upmc.com/services/pulmonology/our-services/interstitial-lung-disease
What can I say that doesn't sound trite or ridiculous? Know that I am thinking of you, praying for you and for yours. I am hugging you virtually and sending all my love to you.
Just a thought....my husband suffered with a rare auto-immune disease for a year and a half with not allot of help locally. We finally went to Mayo and they have been very helpful. He receives IVIG once a month now and all his symptoms have subsided.
We can do the treatment at our local hospital, but our PCP had to sign the orders as the Mayo orders do not cross state lines. But, he was willing to do this and we are very thankful. Best of luck with all this.
Start looking for trials that include family medical records/history. More important than just for the disease itself. These trials will look beyond just the cure - to causes and how it is genetically transmitted.
Consider planning your funeral - funerals are not considered part of your assets and can not be taken away or claimed by creditors, medicare or anyone. It sounds terrible but we did when my husband was diagnosed with stage 4 cancer, he's still here, well past the initial death date and fighting it well.
Consult a lawyer about what items can be considered only your husband's assets vs joint assets. What can you change, not change, etc.
If you haven't already, start collecting your SS, even if it is early. It should help the claim for your husband for whenever you do go (even well beyond the initial suggested time.
Don't panic - just be prepared for the worse, pray for the best and be happy when the good things come your way. Be practical which is why you see a lawyer and find another doctor.
None of your fellow stitchers want to see anything happen to you. If you need help, say so. Granted your friends and family are more available but the stitchers have some experience, maybe some are lawyers, maybe some are medical personnel, maybe someone else has the same problem. Some can research or whatever. We certainly all can listen, individually or collectively.
Let us know what we can do for you. Speak up.
Jackie
Wishing you all the strength, grace, courage, and love this world has to offer. Know we will all hold you in our hearts as you are tested yet again by this devastating news. Love and hugs to you and yours.
No words that haven't already been offered...just more hugs and prayers.
xoxo
Dear Marly,this is such awful news. I know you will dig deep and whilst it is a terrible shock at the moment, I have no doubt that you will find peace and calm in time. You will then be able to concentrate on getting some help/treatment. I am sure there are options out there but your brain is overwhelmed at the moment. Please don't rush about doing stuff - take time out for you, eat chocolate, do what you want and let calm gradually take over. I will miss your hilarious ramblings and hope that others will help and support you as you have for them over the years. Big, loving hugs from Norfolk in the UK.
I am so very sorry, so sad to read that this is your diagnosis (not to mention horrified by the unfairness of it!). As others have said, I hope you will meet with other physicians in Cleveland or Pittsburgh, and pray that they will be able to help in some way.
Plan, prepare, and do as you feel you must, but know that Mark is as strong as you need him to be.
‘Twould be no surprise if your blog goes silent, but know that we are here if you need us, and will provide willing ears to listen, shoulders to cry on, and warm hugs whenever needed (though I think I remember you’re not overly fond of lots of hugging?). I treasure your warmth, your intelligent attitude toward our shared hobby (/obsession) and so many other things, and your delightfully acerbic wit.
Know that this community loves you, dear Marly – feel wrapped in that love.
Has a pulmonologist made this diagnosis? If not, then you need to identify a good pulmonologist who specializes in IPF for the proper diagnosis. IPF is not easy to diagnosis and there are specific criteria for the diagnosis. There are treatments, but they are not cures. I worked on IPF studies when I was working in clinical research. Roche purchased the company Promedior in 2019. Promedior conducted a successful phase 2 IPF trial that did demonstrate the improvement in lung function of IPF patients. The clinical product in PRM-151. Many individuals do live longer than 5 years, but other do not. I depends on the severity and getting good care. Taking care of one's self with proper diet, exercise, etc. Need to have a positive attitude.
Dear Marly, I sure hope you get this message. I will keep you in my prayers. I just read up on IPF and I hope there is something that can be done to help you ease your symptoms long enough that perhaps something is found that can stop this disease. I feel so bad for you. Love you and love reading your blog posts. Please take a break and as many here have said, "one thing at a time." May God watch over you.
Much Love, Peace and Prayers.....
Dear Marley, I am finding it hard to fully understand what I am reading. I can hardly contemplate what you are going through. Please, reach out for help and comfort if you need to, but most of all, look after yourself. Keep yourself as safe as you can in these awful times and remember to take some time to enjoy the things you love if you can. Don’t let your days be filled with lists and tick sheets. Much love and best wishes Irene xxx
I'm so sorry to read this post and hear this news. I do hope you find a doctor who has some miraculous new treatment. Who know, maybe one of the Covid cures could work for this too?
Please take care of yourself and blog when you can.
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