The transplant experience

This past week there have been 2 people I know get their transplants. Tricia got her lungs after spending months in the hospital, and Bjorn got his second lung transplant after rejecting the first set.

This all brings back memories of my transplant experience. It's been 6 1/2 years now since I got my second chance at life. Since they took one each of my mom's and uncle's lobes, the surgery was scheduled. I didn't have to wait for "the call". It helped my family plan for time off from work, and allowed me to really get ready for the transplant. I was so fortunate to receive lobes from living donors! No one had to die for me to receive a second chance at life. It made it easier for me I think.

Tricia's husband mentioned that she has memory loss. All of the anti-rejection meds really mess with your mind immediately after transplant. I remember some of those days immediately post, but most of it is a blur. My family told me that I was in a lot of pain, and I didn't want them to take away my oxygen even though I had 100% oxygen saturation. I was so used to relying on it to breathe, that I was terrified of being without it.. kind of like a security blanket. The nurses finally gave me a nasal cannula and tricked me into thinking I was getting oxygen. They had hooked it up to room air instead of to the O2... I was fine then! 

The hallucinations were quite funny according to my family. I would start talking to people who weren't in the room. I had many conversations with Casey, and she was actually with my mother-in-law 2 hours away back home. I vaguely remember thinking she was in the room with me. 

Thankfully, I don't remember much about the pain in the ICU, but gradually over the next week, I remember all of it. I had to get a fundoplication surgery (stomach wrap) 3 weeks after transplant, b/c I had reflux so bad. That surgery was very painful and made me very sick. I still had a feeding tube, so they crushed all of my meds and put them through the tube. That way, I wouldn't throw them all back up.

Starting rehab at The Center for Living at Duke was so hard at first. They require you to be there 4 hours everyday to walk, workout on the machines and do floor exercises. You go from using a walker to a very brisk walk in just 21 days of rehab. It really is amazing how the body adapts. Immediately after transplant, walking 2 laps around the hallway was difficult. It didn't take long though before walking 2 miles was a breeze! No one that I know of finishes their 21 days in a month. If you miss b/c of a doctor's appointment, or a complication that lands you in the hospital, your days stop counting down until you complete exactly 21 days. My transplant was in November, but my 21 days weren't up until the middle of February.

Tricia will have it rough over the next few weeks. Her body will change b/c of the prednisone.. at first it causes moon face, acne and hair to grow on your face, but that goes away as they lower your dose. She will have to be bronched (have a bronchoscopy where they put a tube in your nose and down into your lungs for a biopsy) in the room with no sedation. That is really tough! They put so much saline in your lungs to "wash" the secretions out that it feels like you are drowning, but the bronchs she will have later on will be with sedation. The pain will seem unbearable at times, but it's like any rough spot we go through... it passes, and we later reap the rewards.

I really have thought a lot today about what Tricia and Bjorn are going through right now. I would do it all again though if I had to. My daughter Casey needs me, just like Tricia's daughter Gwyneth needs her. Having a child makes you fight harder than you ever thought possible! I continue to pray that Tricia and Bjorn have no rejection or infection, and that their rehab is quick without complications. I pray that Nate gets through these days, and realizes that it really is harder on the spouse than it is the patient. I think I had it easier than any of my family!!

You can read my entire story here.