retransplant

This is a timeline of my retransplant experience with special thanks to my brother Ted for his great photos. (Some pics/text might not be for the squeamish.)

August 21, 2005. I am officially listed for a single-lung transplant. My lung capacity went into a dramatic decline in the first half of 2005. By August, I was below 20% FEV1 (the standard measurement of lung capacity used by doctors).

September 13, 2005. I get The Call, as described here. It turned out to be a dry run. In retrospect this was a good thing because my parents were in Russia and it would have been tough for them to rush back home. Also, more critically, after this I survived for another year and a half on the waiting list. That is precious, precious time that I’m very thankful for because even though my life was in a limbo of sorts, I was still able to function independently. I say sincerely it was like vacationing at Club Med compared to my CF-burdened wait for a double-lung transplant nine years before.

March 2, 2006. My Dad passes away. Obviously, this was a very difficult time for everyone in my family. For me, it was like losing my Sergeant in the middle of the Battle of Normandy. I had to keep fighting, though.

February 17, 2007. I get The Call again, another dry run. This time I made it to the hospital. Thanks to Ted’s photos, you get a good idea of this phase of the transplant process. The family and patient get to the hospital and the wait begins to see if the surgery is a go or not. On this night, it was not. But I think it was a good practice run for me and my family. It shook us out of our lethargy and gave us an idea of what was to come.

March 2, 2007. Mom, Sarah, Ted and I eat brunch at Zaidy’s to observe the anniversary of Dad’s death. I think this helped give us strength for the days ahead. I know I felt his presence.

March 3, 2007. I get The Call again. Rather dramatically, the family is assembled once again at University Hospital. Sarah is at home and comes to my house but we must track down Mom and Ted. It’s kind of exciting to be able to call places and say, “I have an emergency. Please find so-and-so.” My Mom describes the call from her perspective:

Last night in the intermission of the ballet that my friend Carol Levine had kindly invited me to, the Executive Director announced from the stage that Pat Pascoe should report at once to the ticket office. With my heart in my throat, I grabbed my coat and left the theatre to find out that Will had received another call that they might have a lung for him. Sarah was en route to the hospital with him at about 8:30 p.m.

Ted was in Steamboat Springs. We suspected he was with his buddy Randy so we called Randy’s wife Kathy and she helped us track them down at the movies. My Mom describes what happened next:

When I got to the hospital, Will was already in a hospital gown and checked into a room in 7 West to prepare for the operation. They said it might take place about 4 a.m. That time slipped as doctors flew out-of-state to procure the lungs, a left one for Will and the right one for his roommate in 7-West, a 58-year-old veteran.

My roommate was named Glenn and our families chatted a bit as we waited. Not too much though. We were all a little nervous. In lung transplant parlance, Glenn and I were shaping up to be lung-buddies or lung-brothers because, if the surgery was a go, we would be receiving lungs from the same donor.

Soon the docs let us know surgery had been scheduled for the following morning at about 6 a.m. This would let everybody get a little sleep. So Mom and Sarah went home and Ted wisely decided to wait until the next morning to drive back to Denver.

Sunday, March 4, 2007. D-Day! Or the day The Call became…The Cut. My Mom describes what happened that Sunday morning:

We rose at 4:30 a.m. in order to be at the hospital before six to accompany Will to pre-op. We were very pleased that his surgeon from his last transplant, Fred Grover, would be able to perform the operation even though he was not on call this weekend. They continued to prepare Will and wheeled him to the operating room at about 9 a.m. We began our wait in the third floor waiting room of the Critical Care Tower at University Hospital. Ted arrived at the hospital about 9:30. We understood that the lungs looked good and that the actual surgery would begin at about 10:30 a.m.

It’s a go! So I was wheeled in the operating room about 9 a.m. The anesthesiologist told me I wouldn’t remember anything as I was wheeled into the OR (one of the drugs they give you has an amnesia effect) but by telling me that I think he placed it in my memory. In any case, I remember the OR. It was a larger room than I remember and the operating table was odd — uncomfortable, covered with various life preserver-like pillows, stumpy — but none of that mattered because I was out quickly (or my memory ends anyway). Here was one odd sensation. When I had my double nine years ago, I felt like I was laying north-south. This time, I felt like I was laying east-west. But I didn’t feel the directions so much, I just felt perpendicular. So as I went under I was feeling a little perpendicular. I wasn’t sure if that was a good thing or a bad thing.

backpack

I love this photo. It’s a shot Ted took when he arrived at the hospital after driving for three hours down from Steamboat. He’s showing us his backpack filled with all the tools of the family in the surgical waiting room, newspapers, books, etc. In the background is University Hospital. I’m in there somewhere feeling perpendicular and my Mom and Sarah are preparing for a long day of wait-and-see.

Sarah

Here is a shot of Sarah eating a bite and…preparing a sermon? She may be calling on her wealth of experience at the Littleton Historical Society, a living history museum where she played the role of a 1860s and 1890s frontier woman. This might be a good time for some fire and brimstone.

Mom

Cool and collected, Mom settles in for the long haul.

Sarah laughs

Sarah laughs for Ted (post-sermon?) as some other waiting room family members play on the computer. Note the time on the clock, my surgery has probably just started.

Ted and Mom

Ted and Mom in a good shot.

Max

Even my nephew Max (age 6) is pulling waiting room duty! I’m impressed. Behind him is the family of my lung-buddy Glenn. The surgical waiting room is full today!

Max

Max again. I think he may be assisting with the surgery with that Gameboy. Careful with the scalpel Max!

Max

And here is Max (with Mom Sarah) looking absolutely cherubic. I think Disney central casting is calling. He is, of course, a very good boy. But is he this good? A box of animal crackers says he is. In any case, he’s a brave big guy to come to the hospital waiting room. (He doesn’t like being called a brave little guy.)

Lee

My godmother Lee and her husband Ed were very kind to stop by the waiting room. Here Lee talks to Sarah about a book.

Mom Ed

My Mom chats with Ed.

Ed

Ed is an Episcopal Minister and was kind enough to lead the family in a waiting room prayer while he and Lee were there.

My Mom describes the rest of Sunday afternoon:

At about 1 p.m. we learned from the operating room nurse that the old lung had been removed and that they were sewing in the new lung. They expected to finish at about 3:30 p.m. We decided to go eat a bite while we were waiting. After we returned Dr. Grover appeared at about 4:30 p.m. to tell us that the operation had gone very well.

We went into the ICU to see Will–really just to look at him, because he is unconscious until tomorrow, and they will tape his eyelids shut. He is on a ventilator and very still from the medications they give him to keep him from moving while he starts to heal.

Monday, March 5, 2007. Waking up was a lot easier this time around. Last time I had the eerie feeling I was alive and awake but unable to awaken. I was also desert-wanderer thirsty and incredibly black and blue. Nine years ago I looked and felt like I’d been run over by a truck. This time, it was more like a VW bug or maybe a moped. And this time I woke up, went back under, woke up, went back under. I felt like I was slowly waking up as if from a deep sleep.

Will awakes

And that’s me on D-Day+1, almost exactly 24 hours after surgery began. I’ve made the move from the bed to the chair, which they encourage.

Erin and me

Here my first excellent ICU nurse Erin gives me some pills. Behind me you can see my various ICU medical contraptions. The central line in my neck plus back soreness made it difficult for me to turn around and see what all I was hooked up to but I could hear it all buzzing and whirring.

Tuesday, March 6, 2007.

my table

Behold my indispensable hospital bed table. A sandwich Ted brought me, my Barack Obama book, some newspapers Mom brought, my practice breathing device, the box of Kleenex, notepad, spit cup–all the necessities of hospital living.

triple valve

This is a great shot of the central line in my neck, which would shortly lead to the saga of what I call my Predator triple valve. (More on that later.) The blue stuff on my neck is special surgical soap. The problem is that when medical people see blue skin they assume something bad is happening so the company is going to change the color. Tuesday afternoon I moved from ICU to 7-West.

Wednesday, March 7, 2007. Today I began my rehab in earnest. With a walker and the help of a nursing assistant, I walked about forty feet up the hospital corridor and then back to my room. Not too far. Baby steps, baby steps.

Thursday, March 8, 2007. More walking. This time a lap around 7-West. The walking is a little tricky because my two chest tubes are still in and they have to be loaded onto the walker. In addition to walking, I’m trying to sit in my chair next to the bed rather than in the bed. I’m also trying to wash up a little more actively. This means sponge baths, washing my face, using this special waterless shampoo hat, basically living as normally as possible while moving my muscles.

Friday, March 9, 2007. The first setback to recovery, though a minor one. Chest tube #1 starts acting up. Specifically, air starts to escape from the wound. Little burping noises from my chest, kind of disturbing but not as bad as it sounds. But I can’t do any more walking for fear of exacerbating it.

me menu

Here I am ordering lunch off the University Hospital menu. I have long been a complainer about being in the hospital. I hate being in the hospital. But I have to give kudos to University for doing something right. They have a great system now for feeding the patients. When I was ready to eat, I just called up and ordered and within 45 minutes (usually faster) it arrived at my door. I could get the drinks I wanted, the desserts, the sides, and a pretty good main course, like chicken alfredo or turkey and gravy with cranberry sauce. I salute you University of Colorado food service!

menu again

I am eyeing Ted suspiciously here, aren’t I? Am I so looking forward to my lunch I think Ted is going to swipe it?

wide shot

There’s a lot to talk about in this picture. It shows my hospital life in a nutshell. I’m laying in bed in my fashionable hospital gown and you can see my two chest tubes leading down to my chest tube boxes. These boxes are on an air compressor and fluid is being sucked into those boxes. This would be extra fluid in the chest cavity which needs to be removed post-surgery. (Everyone gets these boxes/tubes.)

There’s an oxygen tube in my nose. To the right is my IV pump. At the moment I have no IVs going, though I usually was connected via my Predator triple valve in my neck. And to the lower right is my commode. Not a pleasant subject but there you have it. My urinal is out of the photo but sitting right there too. I bring it up to give you the full picture of my life for these few days. I thought of myself as camping in an office building. Or alternatively, living in the world’s smallest apartment without indoor plumbing. I rarely moved more than three feet, some kind people emptied ye ole chamber pots, and I had to hope nobody would walk into the room while I was taking care of business. (In the hospital, somebody is always walking into the room.) I very quickly discarded any sense of bashfulness.

bandages

Here is a closer shot of my bandages covering both the surgical incision and the chest tubes. You may notice I’m wearing my sweatpants. I insist on wearing my own clothes in the hospital whenever possible. I can’t tell you how good it felt to put on my own skivvies and sweatpants after days of wearing only a crappy backless night gown. Because of the chest tubes, etc., a t-shirt was not yet feasible.

closer bandages

An even closer shot of the bandages covering the chest tubes and incision.

chest tube boxes

And a close shot of the chest tube boxes. The fluid would drain into these boxes and my nurses would measure the flow a couple times a day. When the flow had decreased to a certain level, the chest tubes could come out. I was amazed how much fluid could fit into the boxes. They were not ever emptied.

Ted and Me

A great shot of Ted and me. The cut on my nose is a bit of a mystery. Probably from my glasses.

Saturday, March 10, 2007. More chest tube issues. Recall that #1 was acting up, making gurgling noises. The chest tube is a tube with a hole at the end but it also has holes on the side of the tube to aid in gathering fluid. They figured one of these holes was protruding from the wound and air was escaping. This was okay because air was going OUT, not IN. Big, big difference. Anyway, because of the fluid flows, they decided to leave in #1 and take out #2 (the one that was not acting up).

So they tried pulling out #2. It wouldn’t budge. This is not good. Chest tubes are supposed to come out easily. They then decided to pull out #1. Fortunately, it came out. But then #2 started to act up–with the air escaping burping thing. Not good but at least I had one chest tube out. The general rule is that the patient can go home 24 hours after the chest tubes come out. So I was getting closer to home.

Sunday, March 11, 2007.

compressor

Here’s another good shot of my Predator triple valve and in the background to the right of my head is the chest tube air compressor. With my chest tube issues, they did still want me to walk around. On my previous walks, it was okay to be off the compressor. With air escaping, I could not walk without the compressor for fear air would get into my wound and chest cavity. But we couldn’t find a portable compressor so my walking program was on hold.

long view

Here is a long view of the room I spent the most time in on 7-West. (My cousin Kathy is on the right.) The room had an awesome view of my old neighborhood, Congress Park, so at night I could look across the city’s treescape and at the downtown lights. I used to come to University Hospital as a CF kid and right below this room was the playground where I scampered during a post-3rd grade hospitalization. It’s just a roof now — no playground — but it was a funny full-circle revelation for me.

Ted and Kathy

I think this is a great shot of Ted and Kathy even though they’re wearing masks.

Back to the chest tube drama, they tried to pull out #2 again today. Unsuccessfully. So I was a bit disturbed that this chest tube wasn’t coming out and I was beginning to wonder if it would ever come out. (I will talk about the whole chest tube saga in a separate entry.)

Monday, March 12th, 2007. Chest tube #2 finally comes out! Hallelujah! And it came out by tugging — not fun but better than the alternative, going back to the operating room. (Again, I’ll be giving an extended version of this saga soon.)

Alas, my euphoria at getting the chest tube out is short-lived. It turns out some air got into the chest cavity while they were pulling out the tube. So that night I had to go on extra oxygen in an attempt to dissipate the air in the chest cavity. It was weird, I could feel the air bubbles floating around in there like I was carrying an Alien egg. If the extra oxygen saturation does not work, I’ll have to get another chest tube. Not that terrible but by then I had had my fill of chest tube hijinks.

Tuesday, March 13, 2007. Fortunately, the oxygen saturation technique worked well. The amount of air in my chest cavity went down a lot. Now it was no longer billowing around in there, it was just sitting in pockets and when you pressed on them you got a crunchy “Rice Krispies” sensation (the docs term, and accurate). It would take a while for all the air to dissipate but they docs were not that concerned anymore.

readying for walk

Here I am readying myself for a walk with Ted around the hospital. No more chest tubes, time to walk! You can see the scar on my back pretty well in this photo.

staples

A closer up shot of the scar on my back. And the staples holding the incision closed.

ready for walk

Ready to march. I push the oxygen cart. Ted will push the IV.

vending machine

I salivate over the vending machine goodies. Note that I have taken off my glasses for emphasis, CSI:Miami-style.

stairs one

My first stair. I was not sure how difficult climbing stairs would be. My incision was a little unpredictable as far as which muscles were tweaked. I discovered this the hard way on some earlier walks and I was concerned how I would do with the stairs when I went to stay at Chez Mere. Turns out stairs were no big deal (at least by this point).

stairs two

Stair number two. Verdict: I should have no problem going up and down stairs. This turns out to be true later, except for the fatigue factor.

Earlier in the day I got a PICC line in order to take about a week of antibiotics at home. So that night, my most excellent Nurse Nikki (she was my most frequent nurse during my hospital stay, five shifts I think) took out my Predator triple valve.

Wednesday, March 14, 2007. Homeward bound! My daily chest x-ray looked good, and the air in my chest cavity was even further reduced, so I got my release papers.

home one

We did not need to use the oxygen. The red vehicle is for rehab. (Not really.)

mask off

The mask comes off! The bandage on my neck is from my Predator triple valve.

kitchen

Mom and I at the kitchen table, celebrating my arrival with a little rest.

odd me

I don’t think this even looks like me. But it is and I’m obviously very relieved to be home!

March 18, 2007. My post-retransplant recovery continues at Chez Mere.

room

My “hospital room” at Chez Mere, or 2-Southeast as I call it. (Formerly my sister’s room back in the day, the Raggedy Anne and Andy are not mine.) Not a flattering shot of me as I chew on a chocolate chip cookie but a good shot of my Mom (charge nurse, transplant coordinator, doctor-on-call) and the ever-valuable bedside table stacked with pills, water, pulse-oximeter, kleenex and other necessities.

scars
back scar

I wanted to get a couple good shots of my scars for posterity. (That’s my back in the lower photo.) The bandage covers my chest tube stitches and that’s a PICC line in my right arm. The PICC line is a blessing because it saves me from various extra IV placements.

the return

I like this somewhat artsy shot for a capper. I think of it as my Steve Austin back from the brink photo. There’s a hint of my current surgery in the lower right but at the lower middle you can see the scar from nine years ago. I hope this single treats me as well as that double did!

  1. Becky’s avatar

    Wow, what a journey. One of Emily’s lungs collapsed about 2 years ago and she got the “rice krispies” really bad. You are such a strong person and I am telling you that the Walter’s are cheering you and all the other CF’ers on!!!!!!!! Great Job!!!! Take Care!!

    I will keep in touch,
    Becky

  2. heather beadle’s avatar

    wow! i had my double 5 years ago and just got diagnosed with BOS. my transplant center doesn’t do re-transplants, so it was great to find your page with your re-transplant story!

  3. Russell Huth’s avatar

    Heather, I have also have Bronchiolitis Obliterans after only 10 months from a double lung transplant. I hope to get re-listed for re-transplantation soon. If you would like to compare notes, you can email me at rnhuth@gmail.com.

  4. Omar’s avatar

    I’d like to know how everything is going with your second transplant? I too was born with CF, and had my first transplant on March 17, 2000. I have had a decline in health since 2012. My FEV 1 is 20%. And I keep getting recurring infections. Many limitations. Quality of life is going down the drain. Keep in mind that I have spent 14 years with this first pair of lungs, and they’ve been nothing short of amazing.

    But now it’s time to get listed again for a retransplant, another double-lung transplant. I am being evaluated at UCLA Medical Center, and am very close to finalizing my evaluation. What has kept you strong and alive? Any recommendations the second time around?

    Anyone with similar circumstances or with questions please do not hesitate to email me: Gr82all@aol.com. Omar

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