Lung transplant, the wait - CAIRE Inc.
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Contributed by Bob “Oxygen Man” Rawlins, oxygen user and consultant to CAIRE Inc. ~ 

(Editor’s Note: Bob did get “the call” last week, and we are eagerly waiting to read the next chapter of his lung transplant story.)

We wait for many things in life.

That first true love. That first new car. That first job. A living space you call your own. Marriage and your first child. They bring such joy and happiness and some heartache as well, right?

How about that first promotion, or the one you didn’t get. We get filled with anxiety, hope, and despair, all kinds of emotions. I was reading about how many emotions we might experience in a single day and quite often.

According to “Emotions in Everyday Life – NCBI,” we experience about eight emotions every day on average. Joy, sadness, fear, disgust, surprise, anticipation, anger and trust. In a day!!! Wow!

I had to stop and think about that and try and remember some of those feelings that I may have felt the day before. Pretty much all of them. Try it and recall what was happening at that time.

Being on this journey, I do have more time to ponder. That can be crazy, LOL! A person on oxygen with a chronic lung disease pondering emotions, say it isn’t so! Yes, it is.

This new waiting has drawn many emotions as I’m sure most of you can understand if not experience as well.

Waiting is a big part of our lives but when you are on a chronic disease journey, it’s an ongoing thing, am I right? Waiting for the next tests, the next doctor appointments, the next assessment on how you are progressing. Anxiety and stress are very apparent. This is ok my friends. The unknown drives anxiety for everyone. You just can’t let it overcome you.

When I was put on the lung transplant list in July, the emotions were in full force. Filled with all eight emotions plus some. 😊

The fear of the unknown is so real and took me and my family to new levels of anxiety and stress. You finally get to a place that reminds you that this is the best option for my health and future existence.

Pulmonary fibrosis doesn’t get better, it gets worse. Something we can’t control or fix. That is the hard part — I can’t control that aspect of this disease.

So, I wanted to continue to learn more about what a lung transplant is and how it happens.

First, it’s the hardest organ to transplant, … great.

University of Texas Southwestern Medical Center had some interesting data:

  • They want to be within 750 miles from donor to recipient.
  • Only about 30 percent of potential lungs meet the strict requirements for transplant.
  • Then of the offered lungs about 10-15 percent end up being rejected for several reasons.

I got my first call on October 31, and I experienced lots of emotions. Excitement, fear, anxiety, joy, you name it.

I was at the high school helping to get the band ready to travel to state competition. Two of my triplets play in the band, they were on the practice field as we were finishing.

I was called and asked to get to the hospital as soon as possible. So, I went out and wanted to say goodbye to the kids. We were then surrounded by my fellow Medina, OH, beekeepers, band prep peeps, all offering huge hugs. Sigh.

Lots of tears of excitement, concern, but happy for me that the call had come. My life was going to change again. Hopefully, for the better. A big recovery challenge, no doubt, but at this point was ready to take that new journey on. I want to try and get some of the years back that I had lost.

Called my wife, and she was in shock like I still was. My other daughter was at home, and she started to cry. It was an amazing couple of hours before we got to the hospital. My bags were packed and ready to go ahead of time. Last minute checks and off we go.

Made numerous phone calls to friends and family in the car on the way. All were so excited and wishing us all the best for an outstanding outcome.

Remember, the stats I shared above. You don’t think about that much until you get to the hospital, and they start to prepare you for surgery. We arrived around 1:30 PM and by 3:30 PM I was ready for surgery (minus the things I didn’t want to know, LOL).

They told us they would know more around 8-8:30 PM. What? Five more hours? Oh my, can’t begin to tell you those feelings. But the staff was great. My wife by my side and the wait continues.

So, 8:45 PM and the nurse gets the call. I could tell by the look on his face this wasn’t going to be the day. I told my wife it’s not going to happen today. It is exceedingly difficult for the staff to have to break the news. We managed it well. Knowing that it can happen about 20-30 percent of the time. Henceforth, the “dry run.”

As it turned out the donor couldn’t offer any of their organs. I felt so awful for the family. They lost a loved one, but couldn’t fulfill the miracle of offering life to others, so sad.

My time will come, but a donor is a miracle to the continued life of others. I hope more will consider becoming a donor. It saves lives.

My friends, our emotions are important to feel and share. Its ok with this journey we are on to feel these emotions. But more important to release them in a healthy way.

We must learn to rest but not quit. Stay strong my friends, be kind to yourself and others.

Till next time, I will continue to share this transplant journey, thanks for the good thoughts.

#touchaheart, #breathe-easy, #laugheveryday

Love you all,

Coach “Oxygen Man” Bob

Bob Rawlins, 61, of Medina, Ohio, is husband to Terese and father to their 16-year-old triplets, a soccer coach, a hospital volunteer, band dad and chaperone, and marketing guru. He uses a FreeStyle Comfort portable oxygen concentrator and a transportable oxygen concentrator for overnight travel.   

If you have been prescribed oxygen therapy, learn more about CAIRE  by visiting or by calling  1-800-482-2473 to talk to an oxygen advisor.

The contents of this blog post are not intended to substitute for professional medical advice. Please consult your physician for personalized medical advice. When using any oxygen therapy device please consult the applicable product instructions for use for product indications, contraindications, warnings, precautions, and detailed safety information.