Four weeks ago, I went to UCSF for my last test to be evaluated for a lung transplant. I had a left 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 to just buck up and get it over with. It felt good to know this was the last test I had to go through.
It was tough
I’ll be honest, it was harder than expected. The doctors send a teeny tiny camera through arteries in either your wrist or groin (artery at the top of your leg) to look around. They couldn’t go through my wrist because I have trouble getting blood flow to my fingertips – very rare. Instead, they went through my groin. It turned out to be a challenge because my arteries were hard to access because 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.
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% of people have, that is susceptible to getting a 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 a lung transplant in the future.
Putting the stent in 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 took a week to get my strength back. Besides the above complications, I 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 Brilanta for six months, to ensure that the stent stays open. Unfortunately, only 10% of patients experience a side effect of breathlessness, which isn’t great when you’re already using a lot of oxygen already. I hate complications!
I’m feeling mad and sad. It’s made simple things so much harder. I feel like I’ve had a downturn even though my lungs are still the same. I’m telling myself the truth that feeling worse is a side effect from the medication, but my experience is that I’ve worsened. It’s been discouraging.
I went back to UCSF two weeks ago and my doctor changed my medication, which has helped some, for which I’m grateful. Unfortunately, being on this medication will delay getting on the transplant list until March. Originally the plan was to get on the list in January. It’s only two extra months, so that’s not too bad.
After all this happened I decided to practice some self-care. I let myself have a good cry and watch some Hallmark mystery movies! It helped me to express my emotions, talk to my husband about them and then be kind to myself.
I’m also talking to myself with compassion about what happened,
“It is really had 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 blog post 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, but still get discouraged at times.
I hope sharing this experience helps you in some way. I’m sure your challenges are quite different than mine and my heart goes out to you. I encourage you to practice self-care care no matter what you are going through. We are tough and courageous. We’re also deeply affected by health challenges and hard times. We 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 tough times you go through? What types of self-care do you practice to get through difficult times?
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This post first appeared on my Pulmonary Fibrosis News Column https://pulmonaryfibrosisnews.com/2018/09/11/pulmonary-fibrosis-lung-transplant-evaluation-complications-suck/