Celebrating Meaningful Milestones
Last week, my husband and I celebrated our 40th anniversary. I was so grateful to celebrate this amazing day with this wonderful man!
Four years ago, I was told I had a few months to a year to live and I was offered no treatment options. Being given such a horrible time frame to live was devastating. I really didn’t think I’d make it to this momentous anniversary. Praise God, I’m still here and kicking. And I’d like to share the things I’ve learned from this experience.
Our 40th anniversary. (Photo by Kim Fredrickson)
Don’t believe the time frame
Doctors do their best, but they aren’t God, and they don’t control life. No doctor can predict any one person’s lifespan with PF. You may see statistics online of the average life expectancy for pulmonary fibrosis as three to five years. These are based on population averages — they cannot predict your individual experience and your prognosis. These predictions can differ depending on factors such as age, health, lifestyle, type of healthcare received, and the severity of the disease at diagnosis.
Prepare for the worst, but hope for the best
Hearing that I had such a short time frame to live prompted me to take steps to take care of a lot of business and end-of-life decisions so as not to leave a mess behind when I passed. I’m so glad I took care of these important decisions. Don’t give up!
If you don’t like your doctor, get a new one
I was devastated by what my doctor told me. Upon the advice of a friend, I paid for a second opinion outside of my insurance company. She told me about a doctor who had done wonders for a friend of hers with a different lung disease. What did I have to lose?
My new pulmonologist agreed that I had a terminal illness but said the reason I was declining so rapidly was that I was on the wrong medication (prednisone only). He switched me to a new medication — CellCept (mycophenolate mofetil) — that kept me stable for 12 months. He also referred me to a hospital 100 miles away to consult with specialists there.
My first doctor tried to see if my current insurance company would pay for an outside specialist, but they wouldn’t approve it. The first doctors were just waiting for me to die. Needless to say, I dropped them a few months later, and I now have a different insurance company and different doctors.
Anniversary lunch. (Photo by Kim Fredrickson)
Join the PF forums: an online community for patients with Pulmonary Fibrosis.
Do all you can to enjoy your life NOW
It is normal to be besieged by grief, confusion, and painful emotions. I feel these off and on intermittently now, but they were especially strong the first year. As they ease off and I accept and deal with reality, I try to be intentional about enjoying all the good things life has for me. I wrote about some of the things I’m enjoying about summer in a recent column.
Celebrate milestones
Milestones such as reaching my next birthday, anniversaries, holidays, and family events are worth celebrating. Each one is a gift to be relished and enjoyed. If I didn’t have PF and have such a hard time traveling and getting around, we would have had a big party to celebrate our anniversary.
Instead, we planned several small things over a week to celebrate this milestone. We went out to lunch twice at favorite spots, went to a movie, and took a nice drive, and got boysenberry pie! It felt good to celebrate, albeit in a different way.
Boysenberry pie! (Photo by Kim Fredrickson)
I’d love to hear from you!
How have you outlived a doctor’s prediction? What milestones have you been able to celebrate? Which ones are you looking forward to? How have you celebrated?
Please leave a comment below and share with those who could benefit, via email or on social media.
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Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
About the Author
Comments
Haroon
Tear in eyes bz my mother also have PF .... No words but only may God bless you always .....
Kim Fredrickson
Hi Haroon, so sorry your Mom has PF. It must be so hard to watch her go through this. You are going through so much yourself too.
Stephanie
I was dignosed with IPF in December 2017. These last few months have been such a huge change in lifestyle. I have gone from a full time job, afternoon care of my grandaughter, and gardening to doctor appointments and hospital visits. It has been like a switch was flipped. My batteries ran down and no longer hold a charge. The thing that has gotten me through is my faith that God is in control and preparing the way. Your blog and others reinforce that. Thank you for your encouragement. I especially appreciated your blog about summer. This Mississippi heat is so oppressive. You have given me hope. Thank you.
Kim Fredrickson
Hi Stephanie,
Thanks so much for sharing. All of us can relate to how this diagnosis so radically changes our life in SO MANY ways. I too have a strong faith in God and marvel at the ways He prepares the way and provides for me. So sorry for the heat in MS! Ugh! I live in Northern CA where it is hot too, but not humid. That is so hard to take! Thanks so much for your encouragement.
nancy barnett
Hello Kim, Your article is precisely correct. Thank you for sharing. Of course we had the normal first reaction but like quickly learned to celebrate the breaths we take when my Sweet Hubby was diagnosed 6.5 years ago & still no oxygen. We've lived more in these years than we have in all our previous years traveling to Maine and South TX beach each a couple of times, around Lake Superior our life has never been more full-filled. Before my Sweet Hubby's diagnosis we were unable to get along & now we have found a better way--granted communication becomes more difficult as we are rounding our senior years.
Kim Fredrickson
Dear Nancy, Thanks so much for sharing. What an unexpected blessing that your relationship has grown and flourished as you are intentional to enjoy every moment together. So appreciate your sharing!!!
Bill Hunt
What a great article. It has encouraged me to enjoy my life regardless of my IPF. I like my pulmonary doctor even if he told me I had 3 to 5 years left. I was newly diagnosed in January but was under the care of my cardiologist. It was he who sent me for a chest xray after I told him I really thought I was having a lung problem as well. I still need a cardiologist but it shows that we have to look out for ourselves. My best to you. Bill Hunt
Kim Fredrickson
Hi Bill, I'm so happy my column was helpful to you. Yahoo! So glad you trusted yourself and told your cardiologist about suspected lung problems. So good to trust our instincts. Enjoy every moment of life!
Shirley Stokes
What insurance fid you have and what do you have now?
Have you tried or on either of the two rx's for pf?
Thoughts and prayers. I was diagnosed Dec, 2014.
Kim Fredrickson
Hi Shirley,
Good questions! I had Kaiser, and I now have Medicare. I have not tried either med. They were originally only approved for IPF, and I have PF. Then when it might be possible to try it, I'm too far along (it doesn't help if you are in later stage PF). We were diagnosed very close together. Thoughts, prayers and a big hug to you...
robert o'brien
I was diagnosed with IPF 3 years ago and never once, not once was eminent death discussed. I was told not to put much faith in the internet and I'm glad I didn't. My doctors said that given the level I was at (moderate) and given the opportunity to be prescribed with Esbriet or Ofev and partaking in a pulmonary rehab program and doing as I was told, I could be around for quite a while. As it turned out, I did all this (chose Esbriet) and last year was put into the transplant testing program. I completed the total test protocol and was able to pass but ruled too stable to be listed (whew!). So I continue on with the most positive health team imaginable who, if something goes wrong, will tell me and we'll take the necessary steps. In conclusion, make sure you are confident in your medical team and keep moving forward. BTW, my team is in Boston at MGH and BID and on Cape Cod at CC Hospital (pulmonary rehab).
Kim Fredrickson
Dear Robert, Thanks so much for your comment. I'm so glad you have such a wonderful medical team and were able to take steps to stay as healthy as possible. You presented a wonderful example of great medical care. Appreciate you sharing!
Carmela
Congratulations Kim to you and your husband for having the chance to be together and celebrate a 40th milestone in your lives. What beautiful memories nurtured in love and understanding. Taking a week to enjoy small celebrations was a wonderful way to make your 40th anniversary commemorative for a lifetime.
As someone with interstitial pulmonary fibrosis. I too have learned the importance of seizing the moment and making the most out of every second. Being part of the PF community and reading your continuous inspirational and realistic articles have helped me get to this point. Thank you for helping me and others.
Kim Fredrickson
Hi Carmela, Thanks for your encouragement! I love how you seize the moment and make the most out of every second. I'm so blessed to know my articles have been helpful. I'll keep them coming! Blessings...
Jack H
I was diagnosed with IPF in October 2013 at age 78 and told by my pulmonologist that 3 to 5 years was the average survival time.
I was fortunate to qualify for a study using perfinidone (Esbriet) which was subsequently approved by FDA. I have been on Esbriet for 4 and a half years. My oxygen levels are good and I go to pulmonary rehab once or twice a week. My energy level is fair, but I’m 83 years old so that slows me down!
Kim Fredrickson
Hi Jack! So happy you've had such success on Esbriet, and are able to stay active. Good for you! Sounds like you're an awesome 83 year old!
Carolyn Kolp
Four and a half years ago I was diagnosed with of. Nothing was done about cuz my oxygen stayed aroun 87 to 90. That doc retired new doc only gave me a cough syrup and oxygen. When I saw him the first time he said to get my affairs in order and let my family know my final wishes. The cough I have is a heavy congested cough it goes on for 15 to 20 minutes at night. I cough until I am choking, vomiting and peeing. It was very scary. Doc still did nothing. Next appt he said to tell my family how I felt about being put on a respirator or having a traciotomy. I already have a dnr. Next visit he told me to cross my fingers to see if I would make my four month check up.
I requested a different doc. Finally got one after all this coughing for a year.
New doc asked about my asthma. I had it for about forty years but had not been wheezing for ten years. Old never checked into it. I am now on prednisone, a drug I had been taking in the past short term for asthma. I don't like prednisone cuz I can't sleep on it. This time he prescribed 20 mg daily for six weeks.
After taking it for a week I no longer have that terrible cough. He put me on a nebulizer, Breo,l a cough syrup with codeine, a rescue inhaler.
I still have serious oxygen level problems. I am at 6 liters on concentrator and model tanks. I use the oxygen at all times. If I get up and walk 15 feet, my oxygen drops to 70.
I live alone but God has blessed me withfriends that help with errands and house keeping. I am on esprit. It will not cure me but I am living longer.
If you are having symptoms like I had have your doc check for other possibilities. It my make your better and raise your spirits.
Kim Fredrickson
Dear Carolyn, Oh my what a horrible experience you had. Ugh! I'm so glad your new doctor addressed your asthma and that this got rid of your horrible cough. I am so sorry you went through all of that. I'm so glad God has blessed you with friends who are helping. Blessings sent your way, my friend.
Denny Pinkham
I'm a PF guy who is on cellcept as well. Last two Cats have shown no amountable growth. Excerise as much as I can. Treat everyday as a milestone.
Kim Fredrickson
Denny...so glad to hear!!!
JIlly Thwaites
Thank you so much for your message. Congratulation on your wedding anniversary, bless you. I also have PF, which they found when I went down to the operation table three years ago (30-6-17) for a new knee. They were worried about my heart so Ihad had a CT scan, but before the op they couldn’t get me stable, on looking at the CT scan lower down, they saw I had lost a lot of my lung function. About half of each lung. I thank God I’m still here. I go to MacMillan Day Center every Wed. And they are so caring, I can’t praise them enough. I’m on oxygen now, which is keeping me alive.
May God bless you and your husband and all our fellow sufferers. xxxxxxxx
Kim Fredrickson
Hi Jilly, Thanks so much for your comment. What a shock to be diagnosed with PF while dealing with another medical issue! So glad you have such caring help...yahoo! Thanks so much for your kind words and well wishes.
JIlly Thwaites
I meant to say Fibrosis of the lungs is what I have.
ChildofGod
Hello,
Thank you for your article. My husband has non specific Ipf. He was diagnosed in 2009 after returning from Iraq (military). At the ripe age of 34. He is tough and brave. He was put on his prednisone which was horrible and then Cell Cept. He has been stable with Cell Cept since then. I think his pulmonologist has been shocked. But Cell Cept, I believe saved his life. We have 2 children 7 and 12 and I pray they can grow up with their dad around. I wonder often if burn pits were to blame. He was healthy before he was deployed. Also he is able to work still and never lets this get to him. At least in front of me. God bless you all and keep fighting. No one can put a timeline on life except God himself.
Kim Fredrickson
Hello! I'm so sorry your husband contracted IPF after his service for our country. I'm so glad that he is stable and still able to work. What a blessing! Enjoy every moment wit your precious family. Thanks for sharing.
Karmin Chowbay
I was diagnosed with IPF in 2016. I am on OFEV for 2 months now. What is Cell Cept ?
Kim Fredrickson
Hi Karmin,
Thanks for your comment. Cellcept is a drug that reduces inflamation, which was a huge problem for me because I got PF from chemo and radiation for breast cancer. OFEV and ESBRIET were originally only approved for IPF, and I have PF. Then when it might be possible to try it, I’m too far along (it doesn’t help if you are in later stage PF). I'm so glad you are able to take OFEV :)