Complications with Lung Transplant Evaluations Suck!

Complications with Lung Transplant Evaluations Suck!

Just breathe, passionate help for the PF journey

Two weeks ago, I went to the University of California, San Francisco for my last test for lung transplant evaluation. I had a left heart and right heart catheterization to test the pressure in my lungs and to see if I had any blockages in my heart. I was nervous about it but decided just to buck up and get it over with. It felt good to know this was the last test I had to go through for my evaluation.

It was tough

I’ll be honest, it was harder than expected. They used a special catheter that sends a teeny, tiny camera through my arteries. This is typically done via a wrist, the groin, or the neck. They couldn’t go through my wrist because I have trouble getting blood flow to my fingertips — very rare. So, they went through my groin. It turned out to be a challenge because my arteries were hard to access since they sit on top of one another rather than side by side — very rare. I hate complications! They were eventually successful, and the actual procedure went fine.

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They found a small blockage in one of my small arteries, which was unexpected because I have no symptoms of a blockage. Evidently, I have an extra artery only 20 percent of people possess that is susceptible to blockage because of its location. Again, very rare. The doctor said that normally they wouldn’t even fix it, but they did because of the possibility of lung transplantation in the future.

More complications

The stent insertion went fine, for which I am grateful. I ended up spending the night in the hospital, and the doctors and nurses were great. I even had a nice roommate. My recovery has gone well overall. It’s taken a week to get my strength back.

Besides the above complications, I’ve noticed that I need more oxygen when walking than I did before. I tire more quickly with any activity. I have to take a blood thinner called Brilinta (ticagrelor) for six months to ensure that the stent stays open. Unfortunately, 14 percent of patients experience a side effect of breathlessness, which isn’t great when you’re already using 10 liters per minute when walking. I hate complications!

I’m feeling mad and sad. It’s made simple things so much harder. I feel like I had a downturn even though my lungs are still the same. I’m telling myself the truth that feeling worse is a side effect of the medication, but my experience is that I’ve worsened. I’m feeling discouraged right now.

As if all this wasn’t enough, getting on the transplant list has to be delayed for at least six months until I get off the Brilinta. Blood thinners and surgery don’t go together. I hate complications!

Self-care

I just let myself have a good cry, and I’m going to watch a Hallmark mystery movie later today that I taped. It helps me to express my emotions, talk to my husband about them, and then be kind to myself.

I’m also going to talk to myself with compassion about what has happened:

“It does suck to have these complications. I went in thinking I would be in and out in a few hours and ended up having heart surgery and spending a night in the hospital. Needing even more oxygen and tiring more easily is really hard. It’s made everyday life even harder. It’s also disappointing to know that getting on the list will be delayed because of the medication I have to take. I think I’ll let myself have a good cry and release the stress, sadness, and anger that I’m feeling. God knew all this would happen and He has my back. I’m taking time to rest up, keep trusting God for MY future, and take time to do things that fill me back up.”

Writing this column helped me put into words what I’ve been through and released some pent-up emotions. I know it will help me feel better in the long run. I work hard to have a positive attitude and make the best of things. I also get discouraged at times. I hope sharing this experience helps you in some way. We are tough and courageous. We’re also deeply affected by health complications and need encouragement and pampering, too.

I’d love to hear from you

What jumped out at you from this column? How do you cope with the complications you’ve gone through? What advice can you share with me and other PF patients and their loved ones?

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.

33 comments

  1. Marjorie says:

    Please know that many of us think of you and are with you in Spirit. Sometimes, we just need to release, let go, let go, let go – more or less the way of many great spiritual (and religious) traditions. Being mindful, staying in the moment – and, of course, with what breath we have – being present each and every second works best for me. And writing is therapeutic, journaling my thoughts, feelings, everything – good, bad, sad and worse – deeply helps.

      • Marjorie says:

        Dear Kim,
        I didn’t add this until now, hoping that you monitor before posting – because you may not want to include this. However, I think my choices are also important to the discussion. But obviously, you make the decision for that.
        Yesterday, I saw my doctor for what I thought my be a cold, perhaps the flu, but have pneumonia. So, have a prescription, Doxycycline Hyclate 100mg.
        Ironically, today is my 66th birthday and I couldn’t be more content. Perhaps, that’s because I have choices. Our Canadian government enacted a federal law of choice set June 2016 for patients with irremediable illness and imminent death: MAiD – Medical Aid in Dying.
        Since its beginnings in the 80s, I’ve been a member of Canada’s national Dying With Dignity (DWD) and was was a volunteer with five other women in the 80s who started a Hospice in Ontario. So, I also support MAiD for all who choose. And when last month, my respirologist recommended I start OFEV (nintedanib) treatment, “to slow the progression of IPF”, I declined. Thankfully, both the respirologist and my doctor agree with my choice. For all this and the work we have done, I am grateful for every moment. And, deeply grateful for choice.

        • Hi Marjorie, I’m so glad you shared your very important thoughts. Happy Birthday! A very important day! So sorry you have pneumonia. That doesn’t seem fair on your birthday! I’m glad your doctor is helping you, and even more glad that you feel such a peace knowing that when the time comes you will have a choice about the way you leave this world. Enjoy the precious moments you have. So glad you have such a peace.

    • Bill says:

      Marjorie:

      I just hit my 1 year anniversary of having a lung transplant at UCSF. The whole process ( pre and post transplant) is filled with complications and surprises. I also was on 8-10 liters when walking pre transplant. I now no longer require any supplemental oxygen and work out almost every day. I haven’t been able to breathe this well in 3 years.The one thing I can tell you is to hang in there and think about where you want to be 1, 2 years from now. Use that vision to push yourself through the process. It worked for me. UCSF has the best medical staff to help get you through transplant. Best of luck to you.

      • Douglas Thennis says:

        Kim this is Doug it seems there is always bumps in the road through this process but rest assured that it will work out stay positive. Ucsf has your back and will be there for you no matter what. You want this and they know it. I too am coming up to 1 year post transplant from UCSF they are the best.

  2. Ruth Noethr says:

    Hello dear one, my 💓 goes out to you as if just having a rare lung disease isn’t enough to contend with! I could so relate to your frustration. I was originally diagnosed with Chronic Hypersensitivity pneumonia. Upon switching to the University of Minnesota Lung Center, my diagnosis was changed to Cellular Non Specific Pneumonia which they keep telling me is good news as my prognosis improved. I feel frustration as they did a recent med change and my lungs are inflamed and I have increased shortness of breath. It feels like an elephant on my chest. I guess it takes two months for Cellcept to begin to help. I’m 50 years old and somedays I just pray that I get my children through high school. It’s just daunting. I’m sending my energy your way that you get through the next 6 months without further complications. My family and friends are amazed that I have stayed so positive. I explain that tomorrow isn’t promised to anyone. I sieze the day and engage in life, whenever possible. Good luck and good thoughts!

    • Dear Ruth, Thanks so much for your comment. You know all the frustrations that come with this disease. I hope your recent med change will help a lot. So hard to go through the process, I know. I love your perspective and the way you are living life to the fullest!

  3. Steven c Fincher says:

    Thanks for your willingness to share your experiences so that it can help and inform others like myself who are fighting lung disease. Praying for you. 🙏

    • Dear Steven,
      Thanks so much for your encouraging comment. I’m so glad sharing my experience was informative and not discouraging. So appreciate your prayers. Just said one for you too. Many blessings!

      • mona malhotra says:

        Dear Kim
        oh my god u made me cry i thought u r writing about me went through same felt the same god is just behind us he will take care i wish u all the best every thing going to be just fine.
        love mona

  4. Lynne Lefondre says:

    I had to stay in hospital for 5 days getting my evaluation
    I am on my own so had no visitors or anyone to talk to
    Just be grateful you have your Husband
    I cannot go on the list because I have no support for after the transplant
    4 children and nobody to look after me
    I wish I only had tablets to worry about
    Sorry but feel a bit angry

    • Hi Lynne, Thanks for responding to my column. So sorry you had to go through the very stressful evaluation process by yourself. That must have been so hard. How very heartbreaking to not have the support from your family to enable you to get on the list. That is so devastating, and I am so sorry you are living this reality. You have every reason to be angry and heartbroken. Sending you a gentle hug.

    • Patricia Taylor says:

      Lynn
      Do your children live in your area? You didn’t mention your age or the age of your children? Have you enquired at a church affiliation that may be able to help you,after the transplant.
      Many churches have women’s group that you might try to Approach. Have you thought about offering free room and board to a woman in your age group,that could live with you for 6 months or however long is needed. Many women out there are alone as well and might be interested in helping you and you in turn may be helping her.

  5. Rachel San Miguel says:

    Hi Kim,I’m so sorry for the complications you had to face having IPF myself is a pain. But God has us here for a reason. Stay strong for all of us. I hope and pray I may get a lung transplant or even better God would just speak this awful disease away.

    • Hi Rachel,
      Thanks so much for your kind empathy. I believe with you that God has us here for a reason too. I’m determined to use my time to live life, and help my fellow warriors as best I can. I appreciate your support and encouragement, and am placing my life in His hands. Many blessings.

  6. Steph Johnson says:

    Kim,
    Thanks for sharing. I too am being evaluated- have had all the tests done. I have 2 follow ups and I think that’s it. I unfortunately hurt my back ended up in the hospital for 6 days. It was more for my breathing than my back I wasn’t releasing carbon dioxide when I would breath. You learn something new every day. They switched me to a bi-pap and put me on antibiotics.
    It’s just frustrating you’re so close but always something comes up. I hope your wait goes fast and you stay healthy. And pamper yourself!

    • Dear Steph, Congrats on finishing the evaluation. So sorry you ended up in the hospital for 6 days. Ugh! So glad they were able to help you. Yes, it is so frustrating to be so close! I hope your wait goes fast too. I’ll pamper myself if you will!

  7. Guy Anderson says:

    So Kim guess you had a good day here mine had l/ right done though groin had to lay on my back for four hour went to bathroom came back and had a stroke.Took me to trauma shot me up with Tpa spent 24 in ICU had no problem so we live the dream and hope someday the man up stairs says time for new lung. So keep smiling and keep putting the good information at as you do. Have as great day

    • Dear Guy….wow what a story! So sorry that happened, but so glad you’re still in the land of the living. Appreciate your encouragement, and well wishes. I’m placing my life and future in the man upstairs too! You have a great day too!

  8. Jill H says:

    Your circumstances are so similar to mine, I feel compelled to respond. I also had two heart blockages discovered when I went through the lung transplant evaluation. I had two stents placed in April and also experienced the added shortness of breath with Brilinta medication and was miserable and felt I was so much worse than before. My cardiologist switched me to Plavix, which is the original drug that was used post stent. However, it has shown not to be effective in some people, so I had the latest genetic testing completed to assure that I indeed would respond, and I do! I am so much better since discontinuing Brilinta! I am also participating in Cadiac Rehabilitation. I’m now 4 months post stent and am feeling better than ever! I think I may have been experiencing angina, but just attributed the pain & discomfort to my lungs. Please consider alternative drugs other than taking Brilinta. I’ve fought my way back and so can you. I have fibrosing non specific interstitial pneumaitis.

    • Hi Jill,
      Thanks so much for responding. You’re right we are in a very similar situation. I’m so glad you are feeling better after the stents and the change in meds! That is wonderful news. I just talked to my doctor today and they are switching me to Plavix too. I hope I will have the same good result. So glad you fought back. That is a real encouragement to me. Many blessings to you!

  9. Melissa Meece says:

    Kim, thank you so much for sharing your experience. I have gone through all of the ptr-testing for transplant at UCSF (colonoscopy, bone density scan, etc) and am waiting for a hematologist follow up appointment prior to any further movement. I am so sorry that this has happened to you (as if a lung transplant isn’t enough!) I hope you feel better soon and your oxygen level improves. Sending positive thoughts and prayers your way. Hang in there!! ❤❤

    • Hi Melissa, Thanks so much for your response. Congrats on how far along you are in the process. Thanks for your empathy. My doctor just changed my medicine so I am hoping I feel better soon. Sending positive thoughts and prayers your way too!

  10. Sherrie says:

    Sorry things get so disappointing at time my lung function is at 5% I’m on 18 liters of oxygen at rest I have two Concentrators and tanks when I get to rest room or and were else I have lovely sister who does for me like no other she pushes my wheelchair if I go to doctor appointment I don’t go anywhere but by the Grace of God I’m still functioning which in itself a miracle I pray for all of us with this disease just keep on praying and blessings will follow love and prayers

    • Hi Sherrie…Thanks so much for your kind words and empathy. I’m so sorry you are struggling so. I’m so glad that you have such a lovely sister who is helping you so. It is God’s grace that is keeping you going. You are amazing! Thanks so much for your prayers for all of us. I’m praying for you too. Love and blessings to you.

  11. hamza says:

    3 months ago I lost my father in this horrible desease after he suffered 5 years and we traveled to india for lungs transplant but unfortunately suddenly he get worsted there and die in icu and I can’t forget how much he suffered in this sickness forever!

    • Dear Hamza, Thanks for sharing. So very sorry that your father passed away. What a horrible experience to go all the way to India for a transplant and then have it go so horribly. I’m so sorry he suffered so. I know that you did too, and still are. What a blessing you were to him at his time of need. Blessings to you…

  12. ARM says:

    Hi Kim, I went through the same tests and all my tests were good until I got to the left and right heart cath. My pressures were high and they found a blockage. However, they did not fix my blockage. Instead they thought it more important to address the high pressures – PAH. All of this has now knocked me off the transplant list. So, I pray every day for a miracle and take each day one at a time. All kinds of things can go wrong with this disease, each of us are different and have different outcomes. I didn’t have any issues with tiring more after the heart caths, not sure what to think about that. I would suspect the blood thinner having a lot to do with that. I wish you the best and all those that read this important forum.

  13. Bob Wells says:

    Kim,

    Sorry to hear of your complications. I’m sure when you get on the list
    things will move quickly. I know how important your words were to me during my wait and false albums prior to transplant.

    I have now been transplanted over 9 months and although I had a major rejection and inflection early on I’m doing well. I’m certain their will be additional challenges ahead all made easier because of
    family and friends.

    Take care my friend

    Bob

    • Dear Bob,
      Thanks so much for your encouragement. It does my heart good to know my words have been a help to you. I’m so glad you are doing well now despite quite a scare. I know there will be lots of ups and down, and I will benefit from the support of those who have gone before me, like you! Thanks for taking the time to encourage me 🙂

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