Sunday, October 20, 2019

Facing a lung transplant?

I wrote this for the friend of as friend facing a lung transplant. I publish it here in hopes it might be helpful to others in that situation. ~Bob

My Lung Transplant Experience
Robert A. Hall
October 19, 2019

On December 31, 2005, I developed a bad cough. I have it still. My PCP, a Nurse Practitioner, tried several things, including a chest x-ray. In May she sent me to a pulmonologist at the University of Wisconsin hospital. He ordered a CT scan. The results came back in June, “early interstitial fibrosis.” Unlike most people, I knew what that meant, because my mother had died from pulmonary fibrosis in 1995. She was dead about four months after diagnosis. (Probably why I have it, it clusters in some families.) The pulmonologist said he didn’t think I was at high risk to develop full-blown PF…but I did.

I saw him for several years. In the meantime, in 2008, I had moved from the association I was managing in Madison to take over the American Association of Hip and Knee Surgeons in Rosemont, Illinois. (Both had an 80% growth in membership while I was there, and more than doubled cash reserves.)

We bought a small condo in Des Plaines (which we took a tidy little loss on when we had to sell), but thankfully kept our big condo in Madison, WI. (The VA here was the only one doing lung transplants at that time.)

Pulmonary fibrosis kills more people than breast cancer, but BC gets 80 times as much research funding. It plateaus for a while, then takes a step down. It never gets better and eventually you hit the ground. There is no cure, except for the fortunate few who get and survive a lung transplant. (50% of lung transplant patients die in the first five years.) If you have PF, I suggest you get in touch with the Pulmonary Fibrosis Foundation ( There is a list of Centers for Excellence for treating PF. I think separate from them is an email support group, though I found it a little “woe is me” winey for my tastes.

In 2010, mine took a big step down, and I had to go on oxygen (O2). For the next three and a half years, I had an oxygen concentrator at work and at home (my wife joked she could find me by following the hose.) And I pulled an oxygen tank behind me to work, meetings, conferences, out to dinner, Scottish games, Marine Corps Balls, etc. I’m a Marine Vietnam vet and a former 5-term Massachusetts state senator, another long story). I missed work for doctors’ appointments, my transplant evaluation, etc., but never because I felt too sick to work.

In the summer of 2012, my pulmonologist suggested I be evaluated for a lung transplant. I spent four days at UW, meeting with a surgeon, Dr. Jim Maloney, social workers, psychologists, etc. Apparently I passed because they put me on the list, but I was still low.

There is a “lung allocation list.” In the past, people got on the list in the order they applied. Healthier people were getting lungs while sicker ones died waiting. They changed that to look at several factors and determine who most needs a lung at the time. I went back to work.

Soon after that my doctor suggested I transfer my care to the VA, to have everything under one roof. The VA & UW share doctors, including Dr. Jim Maloney, who eventually put a lung in me, saving my life. I signed up with the VA.

In the Spring of 2013, my PF got worse. I was on 10 liters of O2 just walking around. The VA confirmed this, and after talking it over with my wife, I gave my six-month notice in May for November 30. (An exec can’t walk away after two weeks!) They started a search for a new exec. I tried to hold AAHKS and myself together. It was a challenging time.

They found an excellent one, who has taken AAHKS to new heights, which pleases me. Not all my associations thrived after I left. He took over October 1, though I was on the payroll as an advisor until November 30. (More of a kindness to me than a help to him!)

We had sold the Des Plains condo in June and I was living in a long-term hotel suite. I drove home on October 2 and the VA evaluated me again on October 3. My resting oxygen rate had dropped below the safe level without oxygen, so I was put at the top the transplant list. They said I would likely get a lung in three months. You never know. You are waiting for the right person to die. Meantime I went to pulmonary rehab at the VA three days a week and tried to help the new guy by phone.
At 2:45 am on December 23, 2013, I was awakened by a call from one of the nurse transplant coordinators at the VA hospital. She said, “Mr. Hall. We’d like you to come in to the UW hospital. We thing we have a lung for you.” UW and the VA are attached, and transplants are done in the larger UW operating rooms. Some patients have a couple of “dry runs,” as they get there and the lung is not good or right for them.

I said, "Show time." My wife had big eyes and was a bit discombobulated. I was calm. I went to my computer and sent a prepared email to my list (family, friends, etc.) announcing I was going in. It was headed, “Enemy on island. Issue in doubt.” Heading the email, I said, “extra credit if you can ID the quote.” Two people on the list did!

We went to the UW, met Dr. Maloney, they took me in and put me under. I was in a coma for Christmas. They woke me a day or two later and had me walking in another day. The drugs are bad stuff. I was seeing things climbing the walls. At one point, my granddaughter, Britnye, was standing by the bed. When I opened my eye she, of course, wasn’t really there.

I transferred to the VA on New Year’s Eve. My CAN was Annie, who is now a floor nurse at the VA. They served us steaks which we couldn’t cut. A nurse, Ashia, came around with a real knife and cut them. Mine was very red in the middle, and I couldn’t eat it, so she made me a cheese sandwich with cheese she had brought in for NYE. She has left the VA to raise kids, but we are still friends.

I was out of the VA on January 4th. And breathing “room air.” Things were fine for a while, then I developed complications. It seems every lung does, and they are all different. I was back in four times in 2014.

On one visit I was interviewed by a volunteer for the My Life, My Story project. (I rewrote my story!) I was interview 220. (Copy on request.)

But I developed “slough.” (Say “Sluff.”) That is, a buildup of dead cells from an injury where the lung was joined to my system. (I received a right lung transplant. With PF you can live with one, other diseases require a double.”) They said the only case they saw of slough this bad, they had lost the patient. Soon I was back on oxygen. The docs and nurses thought they were going to lose me. At one point, they sent me to palliative care. That palliative doctor retired last year, and I’m still here.
I wrote a column for the local paper about how the VA had saved my life. Ironically, it was published on the Sunday before Memorial Day, and on Monday, I came very close to checking out. I was in ICU. My oxygen level dropped to 90, the minimum, and I had 100% pure O2 running. Which you can’t stay on, as it damages you. That was my third post-transplant hospital stay.

My nurse was Cory. I think he saved my life. He was calm and collected. He knew what to do, who to call, and what to tell them. Then he got out of their way. The doctor said I was barely making it, with no place to go. He said they could intubate me with a breathing tube, but I should know that many people never came off one. I said, “Let’s throw the dice.” They called my wife, who came in, and went to work. It was more unpleasant for her than me, as I was under.

When I woke up, I couldn’t talk, of course, I was writing note to my wife, jokes to tell the nurses, etc. Of course, my hand writing is bad enough now I sometimes can’t read my notes the next day. Being groggy for the knock-out drugs made it totally unreadable for two or three days.

I was reading, and doing okay. The nurses still comment on that. On Saturday, the antibiotics had caught up with the infection, and they were able to pull the tube. The doctor told me of the hundreds of patients he had intubated, I handled it better than anyone. I said he could thank Parris Island. I’d been under stress before. I didn’t wake up in a panic trying to pull the tubes out. I just dealt with it.

From then on I got better, though I was back in July 4th about four days. (Holidays seemed to be a problem that year!) When I got out on July 7, 2014, my FEV average for the day was 0.91. FEV (Forced Expository Volume) measures the amount of air your lungs can expel in one second. I take three readings in the morning and three in the afternoon, so that day I was putting out less that a liter. For the month of October, 2019, my daily average has always been over three liters!

By August I was back off O2 and haven’t needed it since. I get winded with a little exertion like climbing the stairs, making the bed, etc. I still cough a lot. In the warm months, allergies put mucus in the lung. In the cold months, the cold air irritates it.

My doctors, nurses, CNAs, RT, PT, etc. at the VA have all been superb.

A lung transplant is a life-style change, make no mistake. I need about nine hours sleep a night, and I have an hour and a half medical routine every morning and again every night. I take pills four times a day, though they are down to about 25 a day. Three kinds are to suppress my immune system to prevent rejection. I have diabetes, osteoporosis and a tremor as a side effect of the prednisone. And I had cataracts which the VA fixed.

I use a spirometer twice a day to get the highest FEV numbers I can. That takes about 30 minutes each time, and produces coughing. I use a nebulizer to inhale medicine into my lungs twice a day. That takes at least 30 minutes, sometimes longer. I use an antibiotic in my nebulizer 16 days on, 16 days off, and that takes longer. That’s in addition to the Albuterol to keep the airways open and saline solution to break up the mucus. I take my weight every morning (161.6 lbs. this morning). The less there is of me, the less the new lung has to work. I take my temp and blood pressure twice a day. I take my blood sugar three times a week. I use two nose-sprays for allergies twice a day. I use three different eye drops, two for pressure probably not related to the lung. I drink a nasty drink every night. I’ve had other things I had to do.

I take Metamucil twice a day to keep things moving and I used a Neti Pot twice a day. They didn’t tell me to, but approve. I’ve only had two colds in 15 years. This is good, as the three things that tend to kill transplant patients are infection, rejection and tumors. The tumors because we are immune suppressed and can’t do chemo. So, if I spontaneously mutate a cancer cell, it’s likely so long. I have lost two friends. One, John Payne, a black Marine, got a lung five days before me. He died in June of 2016. We got very close to him and his wife Donna, and drive to Louisiana to visit the month before we lost him. We are still close to Donna and consider her family. The other, Joe, got a lung five months before me. He was doing great, but developed cancer and was gone 15 months post-transplant. But I have met vets who are ten or 17 years out from their lung transplants.

You have major diet restrictions as well. Meat has to be well done. No salad bars or buffets. No more than one drink a day. Lunch meat in the fridge more than three days must be nuked. And so on.

In February of 2017, I felt better and looked for a part time job. I got on as a security officer with a good firm, telling them I could work 20 hours a week. Back in Uniform at 70! But you didn’t know when you were working until the Thursday before, the hours were odd. And being a Marine, I was too reliable. They’d call and ask me to come in that afternoon or the next day, when I wasn’t scheduled, and I’d say yes. There’s a labor shortage around here and pretty soon they were scheduling me for 34 or 37 hours a week, more than I can do. I protested to the scheduling sergeants a couple of times, then I quit.

And tickity-boo a part job opened up for a writer-editor in the My Life, My Story program at the VA. I was hired and started in July of 2017. In addition to interviewing and writing veterans’ life stories for their families, (254 to date), I have also other duties. I edit, process and out stories written by volunteers. If their vet is still in the hospital, I go up and read it back to him or her for corrections and changes. I do call backs for vets who haven’t approved their stories. We try to write in the vets’ own words, in the first person. They can take out or put in anything they want; it’s their story. (Sometimes they take out the best lines, like the vet who threw his wife’s boyfriend out the second story window. He didn’t want that in!) We shoot for 800-1500 words, but the 95-year-old WWII Marine I interviewed talked for three hours and 39 minutes. His story was 7468 words. I sent him copies of the full version for his family, then cut it for the computer records, but I didn’t get down to 1500 words!

I have gone out and spoken about the program, or gone to vets’ homes on my own time.
I have two co-workers, my boss, Thor, who is incredibly patient and nice, and a full-time writer editor, Seth, who is a lot more experienced than me and always helpful. I have had jobs that paid more, but never one that consistently brought me such joy.

I now walk with a cane due to bursitis in my hips and leg pain, but don’t think that’s related to the lung. Due to the sleep needs and the medical routine, I get up about 4:45 am and am in bed at 7:45 pm on days when I’m working.

And, as we Marines say, I “continue to march.”

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