Before I continue the story, I wanted to say something about why I am sharing this. Before my transplant, for years, I read everything I could find about lung disease, treatments and transplant. I researched every natural treatment option, diet plan, vitamin. If I could find it via google search, I read it. Along the way I found several blogs that generously took us along their journey. Some were authored by spouses (hello Denise Rider) some by young people bravely fighting cystic fibrosis, a couple I followed through their first and then second transplant( thank you Piper Beatty Welsh) Yes, that's a thing. Sometimes the body rejects the lungs and the only option is a second transplant. I hope never to face that fate, but am comforted knowing it's an option. I took all of their stories with me as I traveled my own road through transplant and it helped the territory feel a little more familiar. I wasn't as frightened by some of the setbacks because I knew others had been through similar trials (or much worse) and triumphed. So, I feel like it's my duty to pay it forward. Maybe someone else can gain some knowledge or insight, but most of all, feel comforted and empowered.
When I left off, I was still in ICU, just waking up and the fog had not cleared from my brain before they said, OK, are you ready to walk? I was thinking, have they lost their minds? There is not a spot bigger than six inches on my whole body that doesn't have a tube going in or coming out. There were tubes and wires and hoses everywhere and all of that didn't faze them one bit. Those Duke ICU nurses are amazing human beings. They work so hard. All of my accoutrements were gathered up safely and they converted my bed into a chair that pushed me right off the end. It took a lot longer to get me ready to go than my actual walk ended up being but it was a small victory and it was the first steps toward home.
Excuse the crazy hair, I had just been cut in half! I wasn't too concerned with appearances. (and that's a good thing since it would be more than a month before that hair was washed- yikes!)
I think it was another day, maybe two and I was moved to the cardio-thoracic stepdown unit, into a room the size of a broom closet. Seriously, tiny rooms on the 3100 unit!
I was there on Thanksgiving day and I had no turkey. No dressing. No cranberry sauce. Not even cranberry flavored jello. I may have been allowed a sip of sterile water by that time, I'm not sure. Duke is very, very strict about what and when you swallow post-transplant. They are very protective (and thankfully so) of those new lungs. First you have to pass a swallow test (I did while in ICU). They run a tiny tube with a small camera on the end down your nose into the back of your throat and watch you swallow items they have dyed green. First a little milk, then some pudding, and finally a bit of little Debbie oatmeal cookie. They want to be sure everything goes down the correct pipe. I had a beautiful swallow and was cleared to swallow solids and liquids. Before I would actually be given liquids or solids, I had to pass a gastric emptying test. First for liquids then solids. Two different tests administered on different days. I passed for liquids but not solids.
They have you drink juice that has had radioactive dye added then take a series of x-rays.
They time how long it takes for the juice to move through your stomach into your intestines. So many systems are disrupted during transplant, they have to be very cautious in assuring that those systems are functioning properly after the surgery. For the solid food testing, it's the same except they give you (disgusting) egg (product) with some toast to eat. I managed to get the eggs down, but didn't ask for seconds. Apparently the eggs decided to hang around in my stomach a little too long so I flunked the solid food emptying test. At this point I was about a week post-transplant. I was feeling pretty good, but far from great. I was not getting much sleep, not eating and was expected to walk. Walk, walk, walk. 20 laps around the unit was the minimum for discharge and I think you had to do that three consecutive days.
This was taken the day I finally got 20 laps. This was on December 6th with a plan for discharge around the 9th. On December 10th I was having surgery again. Remember I said the road to recovery was a bumpy one. The first two weeks were fairly smooth. Not a cake walk, but a typical lung transplant recovery. I developed some complications that are not uncommon. Atrial fib being one. I was finally cleared to eat solid food but to my dismay, everything tasted horrible. Not just the taste, but the texture was strange in my mouth, so I had no interest in food. Not eating and the atrial fib left me exhausted. I was having some issues with anxiety because I still felt breathless. I was using my old breathing habits, taking small shallow breaths and walking left me hyperventilating. I had to go very slow and take many breaks. I saw others who were recovering, zooming by my room. Lap after lap. As the days passed and plans were being made for discharge, it seemed to be getting harder to walk instead of easier. I was having more exhausting bouts with atrial fib. I desperately wanted to go home. I was not getting any sleep, I was weak and missed my family, my Toby.
Christmas was getting closer and I didn't want to be in the hospital.
Then it was discovered I had some fluid building up on the outside of my lungs. I had a procedure to try to remove the fluid, called a thoracentesis. A needle is inserted and fluid is drawn out into a large syringe. It was unsuccessful. The fluid had flocculated, or become solid and would have to be scraped away. I would have to go back into the OR for decortication surgery. The surgery went fine but some of the chest tubes I had been able to get rid of were back and I was back in ICU for a few days. This time the 7th floor cardio-thoracic ICU was full and I went to the 6th floor medical ICU. The nurses are great, I'm sure, but they aren't trained in caring for post-transplant patients. I was there for three days without getting out of bed to walk. This was a huge setback to my recovery. I was transferred out to stepdown, but was in bad shape.
My mental status was altered because my body was retaining CO2 (carbon dioxide) I was not breathing deeply enough to rid my body of this toxic gas. I was quickly moved back to the ICU, this time the 7th floor. I had to be placed back on the ventilator to get my CO2 levels down. I have no memories of this. Within a day or two, I was taken back to the OR for another decortication and placement of a feeding tube and a tracheostomy. Again, I have no memory of this time.
I woke up in ICU very confused, very scared and very upset to learn of the trach and feeding tube. It felt like it was a giant step in the wrong direction. I was physically and mentally spent. I remember those being some very dark days. I couldn't talk and it just felt as if life was going on around me and I was trapped in a dark bubble. I had been preparing to go home and now there was no light at the end of the tunnel. Or so it seemed at the time. At one point I even requested the transplant team psychiatrist come speak with me because I was sure I was dying and no one was telling me. I was certain that the lungs were failing or I was rejecting them and I was not going to survive. I was very frightened, but all I could do was pray. I prayed and I very clearly heard my Granny's voice saying "get it together, gal".
I had the third surgery on December 15th so I spent Christmas in the ICU.
One bright spot was that Casey, who was deployed in Afghanistan was able to come home on emergency leave and was there for Christmas.
I was so glad to see that boy and his little family. I was missing his sister who couldn't visit because she was very pregnant with a little guy who was in no hurry to be born. I was so sad to be missing his birth. I'm generally an optimistic person who sees the glass half full, but I was feeling pretty mopey at this point. I was so envious when Mitch or Kelli would leave to go back to the apartment. I just wanted to do normal stuff. I wanted to get up and walk to the bathroom. I wanted to sleep more than 30 minutes a night. I wanted see the outside world. My whole body was swollen and I could barely move my arms without help. For the first time in this journey, I felt pretty sorry for myself.
Micah finally entered this world on December 28th. I wanted so much to hold and kiss him. All of those beautiful grandchildren were motivation for me to get out of that place.
It didn't feel that way initially but the trach and feeding tube were part of a plan to get me back on track and on my way home. Within a few days I was able to start weaning from the vent by spending time off during the day and breathing on my own, through the trach of course. As I progressed I was able to be tested with a Passy-Muir Valve. This allowed me to talk. I had not spoken a word for 2 weeks. I was beginning to see the light at the end of the tunnel. Goals were set that I was reaching. Staying off the vent all day, walking around the ICU unit, sitting up in the chair... small obtainable goals, getting me closer to home, Some time around New Years I was transferred back to the stepdown broom closet to continue recovery. It wasn't easy. I can not put into words how weak I was. I had lost every bit of weight I gained before transplant plus more. I had spent so much time in bed all my muscle mass was gone. I was a skeleton who had not had food for over a month. I had a feeding tube in my stomach but it was going very slowly allowing my body to adjust. (it was not adjusting well by the way). My legs were so wobbly when I walked, but I knew each step I took was a step closer to the exit doors. I kept that in mind. Every lap around the unit, I pictured one of my grandchildren and imagined I was walking toward seeing them. I had a few more episodes with atrial fib and was still not able to eat, but recovery was moving along at a steady pace. I could see my bed in my future and I could not wait to get a good night sleep.
During all this time, I was never alone. Mitch and Kelli were right by my side the whole time. They were there to listen to the doctors during rounds. They were there to speak up if something wasn't right. They were there to gather all my equipment and get me walking. They were (and this is embarrassing, but keeping it real) there to help me on and off the bedpan. They should have been given a badge and a paycheck for all the work they did. I'm sure the nurses were happy to get assigned me. Not because of me, but because I had my own personal nurses, who certainly lightened their load.
I don't think I'm alone in saying the thought of being discharged was equal parts exhilarating and terrifying. I still had a trach, a feeding tube, was not eating, had a ton of meds to learn and would be expected at pulmonary rehab. I still had staples in, almost two months after surgery, yea. Those metal guys were still hanging around. More than 100 of them. What the heck, we would figure it out, I had a grandson to meet. I had a comfortable bed waiting and a confused puppy who wondered why his mama left him. I had not seen or hugged my other 3 grandchildren for way too long. On January 13 I did a happy dance right out of Duke hospital. Well, the dancing was more in my head, I was wheeled out of there. 54 days is too long not to breathe fresh air, and I had a new set of lungs that were ready for some big, deep breaths of Durham air.
When I got back to the apartment, I had these beautiful faces waiting for me!
Next post, the road to recovery continues. It's a marathon, not a sprint.