Beginning Testing for a Lung Transplant

Beginning Testing for a Lung Transplant

Just breathe, passionate help for the PF journey

About six weeks ago, I shared that I am under consideration by the University of California, San Francisco (UCSF) for a lung transplant. A few weeks ago, I got the good news that UCSF said YES to allow me to start initial testing to be considered for a lung transplant in the future. It is a long process.

Here’s the plan

First, I’m to get caught up on basic health maintenance services. This includes vaccinations (tetanus and hepatitis A and B) and obtaining a letter from my dentist stating that I have no infections and no treatment is needed.

They also requested a TB test, bone density scan, PAP smear results from within the past year, and colonoscopy results from within the past five years.

I’m headed to UCSF this week for a set of noninvasive testing they want to do themselves. Here’s what will happen between 7:30 a.m. and noon:

  • bloodwork
  • chest X-ray
  • abdominal ultrasound
  • chest CT
  • echocardiogram
  • appointment with a social worker

That’s quite a list!

I know I’ll be exhausted by the time I’m finished … and so grateful to be able to start this process of evaluation. I’m also working on some needed weight loss. I’ve lost 15 of 37 pounds so far!

They’ll let me know the results in a few weeks. If all looks good, I’ll head back to UCSF in a few months to do some more tests that are more invasive. I’m nervous about those, but don’t need to think about them right now. I’ll keep you posted.

I know it is a big decision to consider a lung transplant. It is risky. It is a huge operation with a difficult recovery. There are a lot of side effects, and it can be a very rough road. It can also go better than expected. I’ve decided to do my part and pursue the steps necessary to be considered for a transplant. I am letting God guide my path, and if it happens, it happens. If not, it isn’t meant to be. I will adjust to whatever my future holds. I figure it never hurts to try! This verse is a big encouragement to me.

So many of you have reached out to encourage me, and I am so grateful. Thanks to all of you for your love, prayers, and support! I’m grateful for a chance at life!

I’d love to hear from you

What jumped out at you from this column? Are you under consideration for a lung transplant? If so, where are you in the process?

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.

36 comments

  1. So happy for you!I pray that God will oversee every aspect of this process, that he will insure the preparations and the surgery will be successful with complete success during and after surgery and you will have a great testimony to share!

  2. Gary Ford says:

    Kim:
    Here a couple of things I remembered as I went through this whole journey that you are about to start…
    First off remember it is not who you have hold of but who has hold of you…if you are in the hands of Jesus, He will never let go…He will never leave you or forsake you…that is His promise to you and on that you can rely on!
    Secondly, I rewrote a quote from Charles Spurgeon, who said; “I talked with God, and God talked with me and we became one.” to “I walked with God, and God walked with me and we became one.” because you are on a journey through that valley, and talking ain’t going to cut it, because you have got to walk it out…
    My two songs during this were MercyMe’s “Even If” and Hilary Scott’s “Thy will be done” which greatly helped me to remember who really is in control of my life…take a listen..
    3.5 years of suffering with IPF, a 12-hour double-lung transplant and I am now almost 1-year post, I can say I am even closer to Him now than I have ever been over my 27 years walking with Him…my prayer was always that I want to draw closer to Him…and I always said “Be careful for what you pray for, you might just get what you ask for!”…but, then again, I still wouldn’t change a thing…praise be to God.
    I leave you with:
    ‘The Lord bless you and keep you;
    the Lord make his face shine upon you and be gracious to you;
    the Lord turn his face toward you and give you peace.’ (Numbers 6:24–26)….Amen.
    God bless and warmest regards,
    Gary

      • Sandra Vanzyl says:

        Hi Melinda, I am going to Toronto General on September 17 to do my week long assessment , ending on Friday at Toronto Western Hospital for an ECG. I know I have a big road ahead of me and somedays I find it so daunting ! I hope we can chat about our IFP, I am on oxygen 24/7 since January 2018 , have worked full time up until this , so life has changed big time. I’m almost 65 (September) …..Cheers and I truly wish that your having a nice day as you read this ! xo

        • Melinda says:

          Hi Sandra, glad you are testing to get on waitlist. I am still waiting but we have to have patience and have faith that our turn will come. I have put myself in Gods hands.

    • Dear Gary,
      Thank you so much for your warm, loving and wise response. I love everything you shared, and the Scriptures and the songs. I am taking your wisdom and perspective to heart. Thanks for taking the time to share such a beautiful message with me.

  3. Hi Kim!
    Thanks for sharing your journey!
    I, too, am in the pre-evaluation stage for a double-lung transplant at UCLA. I’ve been going there every 2-3 months since February 2017 (I live in Oregon). On my visit last month, my pulmonologist said I was ready. We thought I might have been ready a year ago, but my test results weren’t “low enough” to be listed. This time they are!
    I will also be having multiple tests and appointments, including heart cath, echo, CT, ultrasound, etc.
    Once I’m officially listed, I have to move to SoCal to be “on call” 24/7 since they want me within 2-3 hours of the hospital. Fortunately, I have family there and will be able to stay with them – saving tons of money on living expenses!
    Our family motto is, “…always an adventure!” – and we, too, have faith that no matter what happens when, we can only do a day at a time anyway!
    Blessings on your journey!
    Steve

    • Dear Steve,
      Thanks so much for sharing your journey with me. I love your…”always and adventure…” motto. Think I’ll claim that too! I’m so glad that you have family to stay with in So Cal…what a blessing. Blessings to you too as we both walk this journey.

  4. Renee Hill says:

    I pray GOD continues to give you strength. I love the passage. Sending lots of prayers you’re way. You are an inspiration to me. I hope I have the resolve for when the time comes

    • Hi Renee,
      Thanks so much for your prayers and encouragement. They mean so much to me. I didn’t have the resolve until recently…I credit God for giving me what I need to take the next step. Blessings to you

  5. Deborah says:

    What jumped out at me was all the testing you had to go through as part of the evaluation process. I rememberi it like it was yesterday when I had to do the same. I’m now one year post double lung transplant and I can vividly remember those days of evaluation. I was dependent upon my family to complete all testing as I had relocated to Houston from Mobile and had no transportation of my own. It was all worth it. The following week I received the call that I had been accepted into the program but had a few other things to do before being listed. In two months, I had to gain 20 pounds which was a challenge but I did it and was listed about a month later.

    • Dear Deborah,
      Thanks so much for sharing. It did my heart good to hear your words, “It was all worth it.” What an encouragement to hear! Congrats on being one year post transplant. Many blessings to you…

  6. Elyse says:

    I think a goal should be to make the acceptable parameters to be considered a transplant candidate much more well known. When my husband inquired he was told by his pulmonologist “you have a long way to go before you should look into a transplant.” But in fact, he was already qualified at that point to begin the process. We did start the testing you reference above; but it was too late. The hospital transplant coordinator told me his condition was at the point where he could have applied and been accepted as a candidate months before, probably around the time we asked his pulmonologist. I guess we could have been more persistent and done more homework, and perhaps the criteria varies from site to site, but it wold be nice to have that easily accessible.

    • Dear Elyse,
      I’m so very sorry to hear that your pulmonologist didn’t refer your husband in time. I have heard the same kind of story from others too, which is so tragic and unnecessary. I agree general parameters should be made available, even if there are differences between transplant centers. I appreciate you sharing, and am so sorry this happened to you and your husband.

  7. Al Berotti says:

    My wife is at Cleveland Clinic right now going through a battery of tests. She is grateful and upbeat about her soon to be lung transplant. Barring any complications we will be returning to Cleveland on May 7th to begin our wait for donor lungs. She has been battling IPF for a few years now and has been on oxygen 24/7 for about a year. Her condition seems to be worsening and this is her last best option to return to a normal life. The doctors and support staff here at Cleveland Clinic are wonderfully supportive and compassionate. God bless all lung disease patients out there. I hope and pray that you all will have this opportunity if you need it.

    • Dear Al,
      Thanks for sharing about your wife’s PF journey and testing. What a blessing you are to her! So glad you are having such a positive experience at Cleveland Clinic. Thanks so much for you kind words and well wishes for all of us.

  8. Sandie says:

    Thank you for sharing your journey! I find your courage such an imspiration to me. May God bless you generously! I appreciate what the other readers post as I have much to learn. I am afraid but I want to live so I too would jump through hoops if it comes to that. I have osteoporosis so I would like to know more about that aspect of the requirements. Also one post was abt gaining weight/more muscle. I am trying to no avail. I need ideas! Thank you again!

    • Dear Sandie,
      Thanks so much for your encouragement. I’m so glad that sharing my journey is a help to you. You are right, I learn so much from everyone’s comments. So sorry you are struggling with gaining weight/muscle. I wish I could help, I have the other problem!!!

  9. geoff says:

    I went through approximately 65 hours of pretesting and very exhausting; they were more than listed above heart test; colonoscopy ; bone density test; six minute walk; and cancer screening. It was exhausting because as I got sicker I had to travel to numerous hospitals all over; after transplant I am now in my 7th year post and feel blessed every day ; many have not gotten this far; I eat only healthy foods and exercise almost daily with walking and weights taking only a few days month off a month when too sore; I have yet to have a hospital stay other than a check up; the article does mention is the main reason for these tests is that they are thousands on waiting lists for lung (s) but only around 1500 -1800 a year completed; the testing is to make sure that a extremely valuable lung is not placed in an unhealthy patient; I met a few rejected and felt sorry but grateful I was accepted; I went 7 times before a healthy one was given to me; it was very difficult to go home sicker every time I went bit i never lost hope and stayed positive always;

    • Melinda says:

      Congratulations, love your story. I am on lung transplant list and your story gives me hope and to continue to have faith and just hang in there since you are never sure how long you will have to wait.
      May you have many more years of life.

    • Dear Geoff,
      Thank you so much for sharing your journey. Congrats on 7 years!!! I’m in awe you were able to never lose hope and stay positive with 7 false starts before the final set of healthy lungs was offered to you. I will remember your courage and positive outlook as I go through this process. Thanks for sharing!

  10. Rhonda says:

    Thank you so much for your post of information. At present time I have not progressed that far, but I also will be at UCSF. I did meet with there lung specialists a few years ago, and confirmed with diagnosis of IPF, they were so awesome to meet and explain things throughly so my husband understood things better. All the best to you, please keep us posted. Thank you, Goldielocks

    • Dear Goldielocks 🙂
      So glad my post was helpful. I’m glad your experience at UCSF was helpful. I’ve been to a pulmonologist there every 6 months for two years, before meeting with the lung transplant team. Appreciate all your encouragement 🙂

  11. Evelyn Hudson says:

    Hi Kim,
    Often when I read your messages it is just what I need to hear. Thank you for sharing your journey with being listed for a lung transplant. I have been in a program at NY Presbyterian Hospital for almost 3 years, using oxygen 24/7. I’m happy to say I was listed about 2 weeks ago. I’m a little nervous, but I, too, am trusting God and believe he will be with me through it all. I will pray for both of us.

    • Melinda says:

      Evelyn, I am like you nervous but also know it is needed to continue to live and have a better quality of life. I was listed in Oct 2017. I will be praying for all of us.

  12. Gary W Higgins says:

    I,m trying to get on a trans plant list but biggest problem is you have to have a BMI of less than 30. I have thirty more pounds to lose before I’m below BMI 30. That’s what Tampa General uses for guide line. Do all transplant centers use that criteria?

  13. Melinda says:

    All of these stories are so encouraging and I love reading about successful transplants. I learn something from all stories, thank you for sharing and I will continue to pray for all of us.

  14. MaryKate says:

    Deborah – how did you gain 20lbs in 2 months? Were you on a feeding tube?
    I am underweight and can not have further testing until I am a “normal bmi” and it has been extremely slow gaining even a pound. Any tips would be great, I also worry I will be too sick to be considered.

  15. Roger Mills says:

    Hey Kim,

    I want to wish you the best with your moving toward a lung transplant. I will keep you in my prayers and know that God will watch over you. Thank you for your blog posts. Since following this site it has been comforting to know that i’m not alone with ipf. Hugs to you….Roger Mills

    • Dear Roger,
      Thanks so much for your kind words and prayers. It brings me joy to know my posts are helpful to you. They are a heartfelt gift, and helps me so to feel connected to other patients too. Being able to help my fellow PF warriors brings some meaning to what I’m going through. Thanks for taking the time to encourage me. Sending you a big hug too 🙂

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