Pursuing a Lung Transplant
Last week, I visited my pulmonologist at the University of California, San Francisco. I was a little nervous, because my last appointment six months ago was very discouraging. I had worsened significantly. This time, I got better news: no change since the last visit, which was encouraging. My doctor is in my corner, and keeps referring me to the lung transplant team. I keep getting a “no” because of a unique situation.
Photo from Kim Fredrickson
I developed pulmonary fibrosis as a rare complication from the chemotherapy and radiation I received to treat breast cancer four years ago. Now, that was a low blow! Centers that perform lung transplants require a patient to be cancer-free for five years before they will consider you for a transplant. As you can imagine, this constraint has been very difficult to deal with; I’m hoping I’ll still be alive at the five-year mark.
This time, however, when my doctor referred me, the transplant team said, “yes!” This doesn’t mean they will admit me for the in-depth testing that is required, or put me on the list. It just means they are willing to schedule an appointment and talk with me. But it is a great first step.
There are things I need to do to get myself in better shape, such as eating healthier, exercising more and losing some weight. I’ve known that making these healthy changes would be good for me, but now I feel very motivated. It’s so nice to have a goal to work toward.
I decided to ask for support and prayers, so I did a Facebook live video to share the news and seek prayers. You can watch the video here.
I am so amazed by the amount of love, prayers and support I received. It encourages me and strengthens me for the road ahead.
To be honest, the process of considering a lung transplant scares me a lot. I’ve decided to get as much information as I can, and take the time I need to process everything I learn. I know there is a possibility that I may not be deemed a suitable candidate, but it is certainly worth a try!
I hope this information is helpful to you. I will keep you posted on how everything goes. I’d love to know what you think.
Has your doctor brought up the possibility of a lung transplant? Have you been referred to a transplant team? If so, what was your experience like?
Please leave a comment below, and share with those who could benefit via e-mail or on social media. We’re in this together!
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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.
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Comments
Carolynn Fishleigh
I was also offered a lung transplant, but was told that it would last from 2 to 5 years. At age 74, I did not consider that long enough to go through all the anti rejection therapy and other scary things that could go on. Also I would need to move to the hospital city to be there for all the appointments and on call for the transplant. Life as I know it would end right then with the move.So if it only lasts for 2-5 years and I am already at the outside age for getting the procedure now, it's unlikely they would give me another transplant when that one started to fail. So I decided to take my chances and try to make it the 2-5 years on my own terms without a transplant.I know you want encouragement, but I thought you should know the facts, as you say. A transplant is not really a cure, it's exchanging one disease for another. These words came from a top pulmonary specialist in the UK over the internet. If a transplant guaranteed 10 years of trouble free life, then yah - sure I would have gone for it. They were honest with me, so I am being honest with you.I plan to go for quality, not quantity of life and choose to be happy and look for magic every day, and I get it. I wish you well. I hope you beat the odds with your transplant. I hope to beat the odds without it.
kathy benitez
Like you Carolyn I also was a candidate for lung transplant only a double. I am 70 years old and also refused it, .I don't want to be on all those strong drugs for the rest of my life. I will be looking into canabis oil . Good luck to you, and happy holidays .
Mary Jane Wallace
What does the oil do to help IPF? And how do you use it.
Thank you,
MaryJane
Kim Fredrickson
Thanks for sharing Kathy. There are so many things to consider. So glad you were able to make a decision you feel good about. Happy Holidays to you too!
Kim Fredrickson
Hi Carolynn,
Thanks so much for sharing your story. You are so right, there are so many factors to consider. I wish you well, too. Yes, let's both beat the odds!
Esther Landers
My husband has Ipf and his breathing is getting worse but the doctors say he is not a candidate for lung transplant because he is 76. He can't do any thing as his oxygen drops rapidly. So I guess there is nothing they can do for him . Hopefully you will qualify for the transplant soon
Kim Fredrickson
Thanks so much Esther. I'm so sorry that there isn't more you can do for your husband. That is so sad. I appreciate your well wishes.
Karen
I am currently in Mayo being tested for transplant. I am 64 and they say I am a good candidate. My oxygen level dropped after having pneumonia. I am putting my trust in my transplant team and putting their hands in Gods hands. Please pray for me and I will continue to pray for all of us that have this terrible disease.
Kim Fredrickson
Hi Karen,
Thanks so much for sharing about the process you are in. I love you sharing that you are putting your trust in the transplant team, and putting their hands in God's hands. Beautiful. Just said a prayer for you. Hope it all goes well.
Clay
I’m 52 yrs old and was diagnosed with ipf 2 yrs ago. I inherited it from my father who died at 49 from same disease. I have recently been tested again and lung function has dropped to 44% from 56 in two years, which is 20%. Going to start ofev soon and need to lose some weight for a transplant in the future.
geoff
you might have familial type IPF you can contact Dr. Lloyd at Vanderbilt U who can help you with testing you whole family and possibly find a cause through analysis which he did with mine
Kim Fredrickson
Thanks for sharing Clay. It is hard to see those number drop, but it is good to know there are things we can do to be as healthy as possible. Good for you!
Kim Fredrickson
Thanks for sharing this resource Geoff.
Debbie
I was told to go talk to transplant because my stats kept dropping but knew that due to my bmi being 44 I would not be a canidate. So I started weight watchers and slowly started walking. A year later I was down to a bmi of 31 and did the transplant evaluation. Today I am at a point that with the medication and or the weight loss my breathing has inproved and I am right now to healthy for a transplant so the weight loss and walking have helped me so much.. Good luck..
Kim Fredrickson
Debbie, thanks so much for sharing. You are an inspiration! Congrats on your progress and being too healthy for a transplant!
Della Haney
I was diagnosed with this disease around 6 months ago. I have to wear oxygen 24/7 in oct I had a biopsy which showed poorly. My pulmonologist put me on 40mg prednisone a day until Jan to see if it has improved any. If not he is referring me to a lung transplant hospital in Nashville TN. Which is 4 hrs away from me. I’m on 2 liters of oxygen right now. Kim Plz tell me how long u have had this and what I need to prepare myself for
Kim Fredrickson
Hi Della, Thanks for sharing your story. I've had PF for 3 1/2 years and I am on 8 liters of O2. I know everyone progresses in different ways. For me, I have long periods of stability, followed by a significant drop in functioning, and then stability again. Hang in there. I know it is so hard. We're in this together.
Elayne Lemanow
In my situation, the treatment plan is to remain stable. Should I decline, then double lung transplant is the next option and they do mention this to me. My thoughts and prayers to you as you begin being considered for a lung transplant. And thanks for all of your writings.....I learn so much and don't feel so alone.
Kim Fredrickson
Hi Elayne,
I love your plan to remain stable. Thanks so much for your thoughts, prayers and well wishes. I'm so glad my columns are helpful to you...makes me smile.
Erica Odwyer
I went through the process with the lung transplant clinic when 54. You are evaluated mentally, physically and see a dietitian. You have to undertake approximately 17 medical procedures, some quite invasive. you need to complete this part quickly. You are put on the priority list and do manage to get appointments quickly. I was sent to several hospitals to help complete the process. After I had completed this process and went back for my appointment with the team, I did qualify for the list, but I was told that since my health was relatively good, it was unlikely I would be called. The problem with this is, the results from all those tests are only good for 6 months. So everything would have been redone if and when my health worsened. It is also requires that you have a very committed "other" person in your life. They too will have to be there for all appointments at the clinic and several months after the transplant. They will learn all of the meds you require 5x a day. Also, you'll need their support if and when there are setbacks. I don't have anyone like that that in my life. So I have taken myself off the list. You will need to really look into the pros and cons. I hope this doesn't deter you, I've seen some amazing people that are doing great after their transplant. I've also seen people that are in and out of hospital from numerous setbacks..and people who died within the first year. It's a horrible choice to have to make. It is also a personal choice that only you can decide. Good for you though asking for peoples thoughts...but take everything with a grain of salt!
Kim Fredrickson
Erica, thanks so much for sharing about the process, and all the things to consider. Your explanation does not deter me. I am a "reality gal." Getting good solid information is very important to me. I know there are a lot of pros and cons, and you're right, it is a tough decision to make. Really appreciate your comments.
Sandra
Thanks Erica this is very important information you given us. Blessings to you
Sharon Chandler
Kim: I am certainly praying for you as you move towards the evaluation process for a transplant. I watched your video, and was very touched with your desire for God's will to be done. I was diagnosed with IPF in July of this year, and am quite frightened with where this terrible disease is going to lead me. Currently I am not on oxygen, but certainly am dealing with the pain, coughing, fatigue all the time, etc. I do wish you as well as all who read this a very Merry Christmas. And God's will be done!
Take care of yourself,
Sharon Chandler
Kim Fredrickson
Thank you so much Sharon. I know it is so scary when first diagnosed. I was a complete mess, especially the first 6 months. For me, the grief goes up and down, interspered with periods of adjusting to my new normal.Thanks for your comment about the perspective I shared about my desire for God's Will to be done. It brings me peace and helps me not worry about it. Appreciate your prayers and well wishes. Just said a prayer for you.
Sandra
Thank you very much Kim for all the information you share with us. I pray that all will go well for you. God is in control. Love you
Charles Whittington
Sometimes God chooses people to be in situations that they can not control so that He gets the glory. Thank you for being such an inspiration to so many of us who are scared, confused, and without human hope. Praise God!
Kim Fredrickson
Thank you so much for your encouragement Charles. Your comment means a lot to me because I so want God to use this difficult diagnosis for good. Thanks for taking the time to let me know.
Paula Roberge
I was diagnosed via high res CT scan in May 2016. In December 2016 I had a lung biopsy confirming the diagnosis and was placed on Esbriet. My pulmologist referred me to Massachusetts General Hospital for evaluation for double lung transplant and I am currently not listed due to being stable for now. I'm 68 years old and read everything I can find about IPF from reliable sites. My goals are to do my best to follow all doctors' advice, pray daily, take my meds and keep a positive attitude which includes living each day with gratitude. I have a good life, am so fortunate to have a great husband to help me and friends who have agreed to be alternate caregivers should I get a transplant. My biggest fear is that I'll "age out" of the program before needing the transplant. Am I crazy or what? Thanks to all of you for sharing your stories.... it's so helpful to 'talk' to others with this disease.