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.
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!
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?
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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.