What I’ve Learned from Lung Transplant Tests

What I’ve Learned from Lung Transplant Tests

Just breathe, passionate help for the PF journey

I shared in a recent column that I’m going through testing for lung transplant consideration. It has been challenging, but I am grateful because I know many pulmonary fibrosis patients do not have this opportunity.

Being poked and prodded is exhausting, stressful, and sometimes painful. But it is all for a great purpose. I’m about three-quarters of the way through.

Tests and procedures completed

  • Vaccinations (tetanus, hepatitis A and B)
  • TB test
  • Bone density
  • PAP smear
  • Colonoscopy
  • (Illustration by Kim Fredrickson)

    Letter from my dentist stating I have no infections, and no treatment is needed

  • Blood work (multiple times)
  • Chest X-ray
  • Abdominal ultrasound
  • High-resolution chest CT scan
  • Echocardiogram
  • Appointment with a social worker and financial counselor
  • Pulmonary function test
  • Six-minute walk test (with oxygen)
  • Arterial blood gases

I’ve also lost 25 pounds with 18 left to go — over halfway there! I shared how I’m doing it in this column.

Still left to go

I need to head over to University of California, San Francisco (UCSF) in a month to see their cardiologist because my pulmonary hypertension has increased and my heart is working extra hard. I also need to have a left and right heart catheterization. I’m nervous about these last two tests, but I know I will handle it well when they happen.

Latest news from my doctors

During my latest visit to UCSF my doctors gave me an update:

  • My lung health is pretty stable. Good news!
  • My heart is stressed and struggling a little.
  • My test results haven’t disqualified me from being considered for the transplant list. Yay!
  • The transplant team plans to list me in early 2019, which is my five-year cancer-free date unless an upcoming test disqualifies me, or I have a sudden downturn.

They are rushing to get all my testing done, so if I worsen, I’ll be able to get on the list sooner. Honestly, I’m relieved that UCSF won’t list me until then. This way, I have a basic plan, and I can enjoy the summer, fall, and the holidays before being (hopefully) listed.

This was all good news, and I am trusting in God for the outcome.

What I’ve learned

I’ve learned some things through this daunting process that may help you through the challenging times you are going through.

Don’t look at the challenge all at once: Facing all of the tests at once was overwhelming. It really helped me to focus on God and how He will help me, instead of the challenges facing me.

Focus on one step at a time: It calms me to focus on each challenge as it’s right in front of me.

Draw near to God: God is my constant companion through each challenging moment. It helps me to focus on how He is with me, and pray simple prayers like, “Give me the strength, calm my fears, and be with me, dear Jesus.”

Do your best, and trust God for the rest: My job is to do the best I can each step of the way and leave the results to God. He knows my future, and I trust Him. I believe this, whether I get a transplant or not.

Give yourself plenty of time to rest and recover if possible: This strategy has helped me so much. I try to allow plenty of time to prepare for the next doctor’s visit or test, as well as time to rest up afterward.

Give yourself grace: I’ve had to work on being kind to myself about the little amount I can accomplish, even compared to six months ago. Sometimes I look at my day and tell myself I didn’t do anything, and I become discouraged. Then I pause and tell myself the truth:

             “You are doing the best you can.”

             “Going through all these tests and doctors’ visits is a lot.”

             “Recuperating takes lots of energy.”

             “You are spending your time wisely, by taking steps fighting for your life.”

             “God is guiding your steps, and you are following His path.”

             “Just take one step at a time and take good care of yourself.”

I hope this has been an encouragement to you as you deal with the challenges that PF patients face, whether or not you are under consideration for a lung transplant.

I’d love to hear from you

What in this post affected you? What helps you get through challenging times? How do you encourage yourself when discouraged?

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.

10 comments

  1. Michael Tidwell says:

    Hi Kim,
    Last December I was in the testing phase. Now I am 3 months post bi-lateral transplant w/ the Univ. of FL-Shands Transplant Team. I am doing very well. Keep up your great attitude and faith and God can work a miracle for you like He has for me.

    Best regards,
    Mike

    • Thanks so much for your encouragement Michael! Congrats on your transplant and on how well you are doing. I keep putting one foot in front of the other, hanging onto Jesus. So appreciate your encouragement!

  2. Andy from Virginia says:

    Hi Kim,
    I just finished a week of testing for potential candidate, I had all the tests in one week. Unfortunately the left and right heart cath tests indicated severe pulmonary hypertension and it looks like this will knock me out of being a candidate. I am waiting to hear the final verdict now but it doesn’t look good.
    This is an awful disease and I’m just amazed it isn’t publicized more – seems like no one has ever heard of it.
    I am not in control of this situation and I have faith that all will work out.
    I wish you the best in your pursuits.
    Andy

  3. geoff says:

    these tests were exhausting for me especially since my O2 level was abnormal; I spent 70 to 80 hrs of testing over 30 days all for a reason that Unos does not want to put a valuable lung(s) in a patient that my die from other complications; there are only about 2K done per year ; fortunately I am in my 7 th year post and feel blessed every day to awake

  4. Karen Dowdy says:

    Hi Kim, Your article was uplifting. I am a new PF patient trying to work my way through the many emotions of how this disease will affect me. Surprisingly, I am calm. I have my bad days (I think too much) but all any of us can do is one day a time. Wishing you the best as you finish your testing.
    Karen

  5. Rafe' Shearer says:

    Great article about the evaluation process. I am a left lung transplant recipient of almost 6 months. I’m 48 with IPF. Evaluations are definitely an exhausting and emotional experience. I’m overwhelmed with gratitude that it worked out when it did.

  6. Doug Thennis says:

    Good job KIm I am glad things are working out towards your transplant its a process but worth it hang in there and see at pulmonary rehab.

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