Karyn now asleep and when she wakes we will walk—a promise of 5 laps. Karyn walked 4 laps (1200 feet) this morning. To move to the third step, out of the hospital and the 23 days of rehab at the Center for Living, she must walk 20 laps in a day and have all the tubes removed. Luckily on the 13th day, I don’t have to light a fire under Karyn. Her home fires burn within.
Looking forward to the walks; I so love the walks. When I was kid, I had to walk five miles through the snow, just to change the channel for my parents, but then I was the neighbor kid’s imaginary friend. Humor lets me know things are getting much better.
Looking forward to the days passing, as they should, like the turning of pages in a quiet, lovely book.
Sunday May 31st
One giant leap
Karyn has made great strides since Friday. Walking into her room seeing her sleeping peacefully on the bed, and not seeing her gasp for air, was the first sign something was different. When she awoke, I took her for a walk without oxygen, and at lap 3 she turned to tell me to keep up with the entourage of IV tubes, not realizing that she can now talk while walking. Yes, she can walk and talk at the same time. Chewing gum will come later.
Yesterday, Saturday, she walked twelve laps around the triangle corridor. The doctor in the morning was impressed as twelve was the goal for the entire day. Today, Sunday was an amazing day even with the pneumothorax and we got up to walk for the second time around 11 AM. The mornings are always a little more trying and Karyn feels a bit more stiff and needed two or three breaks during the walk. After the first walk, the new arrivals, my son and daughter-in-law pampered Karyn by shaving her legs and giving her a beautiful pedicure, an awesome hot pink, followed by massaging her legs with a stress relieving lotion. Karyn finished a total of 18 laps around the unit which equals one mile. It wasn’t easy but as we rounded each corner staff and other patients and their families cheered us on. One of her nurses noted that he has two other patients, neither of whom had as invasive a surgery and yet Karyn was walking more laps. Now if we can get rid of the many tubes and IV cords that are attached
One more x ray today, another tomorrow and hopefully your lungs will show progress forward.
Karyn walking one mile; was like watching Kirk Gibson clobber the world series home run. Walking one mile made for a grand slam day.
Talk to you soon, our donor.
Richard
The Other Side
Dear Donor,
Monday June 1, 2009
Karyn had an early walk this morning, and surprised PT with seven laps—the expectation was six. The doctor came by and said another chest x-ray was needed and probably another chest tube would be removed. The upper right hand portion of the right lung will not inflate. The chest tube brings suction to assist the lung in fully expanding. The tube is put in without any meds and shall I say it hurts. How many tubes can one person have in their chest area?
Looking forward to meeting with the pharmacy pulmonologist today, who will advise us on the drug protocol after we leave the hospital. This meeting is very positive, as the hospital only does this as you near the end of your stay. There are many drugs on the list so by the time you finish, you start over with the first one: It sure seems that way.
We walked three laps later in the morning and Karyn was dizzy. Her pulse ox showed 100! I do not know if she was just plumb tuckered out but I put her to bed. Then the vampire phlebotomist came and I sent her away, telling her to come back tomorrow for the ABG. (I will hear about this). Then respiratory therapy came by later, and did their tests. How apropos that one of the tests has Karyn sticking her tongue out. The Pulmonary Function test was the best ever, even with the pneumo. Then another chest x-ray.
Karyn went back to sleep and when a doctor came in, she woke up out of her stupor and saw her transplant surgeon. She knew immediately what this meant: another chest tube, and God Bless Her, she did not stick her tongue out. The half hour procedure took an hour and a half, but it is believed the air came out of the lung, and the right lung pushed back into its original shape prior to the pneumo caused by the chest tube falling out. Another chest x-ray was being done on our pooped-out girl as I left for the evening. Hopefully the lung is back, the scary part is that if not, the lung can fill with liquid and turn to solid.
Tuesday June 2nd
Extra! Extra? Read All About It: Princess Readies Leave from Duke
We met with post-transplant coordinator with a full meeting late tomorrow morning. The lung is fully expanded and there are no leaks. Hopefully by the end of this week, Karyn will leave the hospital. “End of Week” in hospital talk means Friday or maybe the weekend or maybe Monday.
I am learning how to give insulin shots (some transplant patients are diabetic, either short-term or for the rest of their lives). I have given Karyn four of her last shots, and she is still talking to me. I will be graded on shot-giving later today.
I have also learned how to use the GJ tube for medications and feedings. Karyn passed the second part of her swallow test. What a smile on her face as she got to drink a little bit of water with one of her medications this morning. Ah, the smell of that bouquet: tap water 2009, a great vintage. Karyn cannot drink water by itself, and must take her pills with chin down to separate the trachea from the esophagus, to lessen the danger of aspirating into her lungs. A treadmill has been placed in her room, as there are not enough Swedish high boy walkers available. Her exercise goes on though she is complaining about how slow the treadmill moves. She would rather be walking the halls. But this is easier for me, as moving four suction machines to a walker is quite a feat.
Wednesday June 3rd
I had hoped to find many tubes removed this morning, but only one had been taken out before I arrived. The concern is to make sure the right lung stays fully inflated. I helped Karyn onto the treadmill and although she walked very slowly, she did the full 20 minute regimen, which seemed like it took an hour. How she hated the very slow setting of the treadmill. She’s still in a lot of pain as she is healing quite fast, which makes her chest all-the-more tighter. The med cocktails are making her tired and woozy.
As I was walking the halls of third floor today, a young girl of maybe 8 or 9 came out of a room, approached me, and asked, “What’s wrong with that lady you were walking with yesterday?” I explained that the lady, my wife, recently had a double lung transplant, and was given two new lungs. I was pretty darn impressed that this little girl asked about my wife, that she obviously was clearly used to speaking to grown-ups. But then, she turned back into a little kid. “My great-grandma’s 95. Will your wife live to be 95?” Will she live as long as my Grandma Ethel? She had asked this with a little bit more urgency, with the concern that children can show in a way that breaks your heart. I immediately ran through answers, and after a brief hesitation, quickly said matter of factly, “Yes, she will live to 95.”
I have no qualms about answering that way. I don’t think any good would have come from the unvarnished truth. What else was I going to say? I wasn’t going to explain the average life expectancy of a double lung transplant is around 10 years, that at 5 years out, 50 out of 100 are no longer with us, dying of viruses like cytomegalovirus (CMV) or of BOS rejection. There will be plenty of time for that sweet little girl to hear about life, to learn that it contains sorrows as well as joys, to hear that bad things do happen to good people. All that lies ahead of her, Donor, I wasn’t going to be that person, to start that part of life earlier. Life will take care of that.
For that moment at least, she was pretty sure that all was right in the world, and those moments are pretty darn precious in anyone’s life. And Donor, who is to say, how many years Karyn will have?
Watching that little girl skipping down the hall, I am taking it day by day.
Thursday June 4th
Another stage looms. Sometime tomorrow, Karyn will be released fr
om the hospital. One tube remains. The two catheter drainage bulbs will be taken out tomorrow. A new metal trach has been fastened around Karyn’s neck. A lovely smaller choker from Tiffany’s. (DUKE, you shouldn’t have). I passed the trach-cleaning test. Talk about gooey yuck in the throat. The last of the chest tubes was pulled this afternoon. Karyn down to x-ray to make sure your lungs are all in order. This morning her O2 was 100! A perfect score. Karyn is acing her tests at DUKE. We have walked almost a mile of halls today and will do more in a little while. Karyn worked with the speech therapist, who is also the swallow therapist. She had more swallows than Capistrano and, hopefully, doctor’s orders will be up-dated to allow soft foods by mouth, which would include thickened liquids. Being released on Friday is perfect as it will give us two days to set up the regimen at home at the Residence Inn and then start the mandatory 23 days of rehab at the Center for Living. Karyn will handle the 23 days like our Golden, Bo, handles a bone. Bo grabs it, grips it, looks around dreamily while chomping at it, and won’t let anyone take it away from him. Karyn can taste the bone, and I can see the sun setting over the Rocky Mountains this evening.
Thanks for being with me Donor,
Richard
March 15, 2009
DUKE and EVALUATIONS
This Side
Dear Diary,
We were active for a double lung transplant at University Hospital in Denver for 30 months. Not one call. The clock was ticking; its sound louder and louder. I could really die. What if I never got lungs?
Karyn and I evaluated other hospitals in the United States, checking their protocols and UNOS statistics. We considered some very fine hospitals, including Cleveland Clinic, University of Pittsburgh, Barnes Jewish, Stanford, UCLA and DUKE. We chose DUKE for its excellent rehabilitation program, its high number of lung transplants, its propensity to do double lung transplants rather than single lung transplants, and its very quick wait time to transplant once listed.
In March of 2009, we ran the evaluations gauntlet at DUKE Medical Center. I can still see Karyn, slumped over in her wheel chair, going from test to test to test. So exhausted. Her body shrinking into itself. Sucking air, like a fish out of water. From our hikes in Zion, to our dog walks in the neighborhood, to only being able to be driven someplace to eat. Now in a wheelchair to get from place to place. Her shrunken life now was eating, sitting, and sleeping.
Monday morning was an orientation meeting, and then on to clinic to have 25 vials of blood taken. Afterwards, we met with the social worker, nutritionist, and back to clinic to leave more bodily fluids, this of the yellow variety. Back in the wheel chair to be raced off for chest x-rays, and a differential VQ scan. The last test was in nuclear medicine, where a technician held a mask around Karyn’s mouth and nose for five minutes. Are they trying to smother me? I try hard to forget that the tech is releasing a radioactive gas for me to breathe in. Then they give me an injection of a radioactive isotope and more scans over 45 minutes. Tonight my husband can read by my night light.
Tuesday morning we head down the road from DUKE Medical Center to the Center for Living. The CFL is the pulmonary rehabilitation location. A physical therapist takes down all of Karyn’s information and tests her for muscle strength. There is a short exercise pep talk from the PT. You must walk 1000 feet in 6 minutes. Karyn’s heart and blood pressure are checked both before and after the walk. You must walk at least 1000 feet in 6 minutes or you will not be accepted into the transplant program. You must show heart to get into the lung program. Karyn cranked up her oxygen and made the 1000 feet with a few seconds to spare.
Then back to DUKE Medical Center for the esophageal manometry and a 24 hour pH probe. A tech sprayed Karyn’s throat with Lidocaine until it felt difficult to swallow. The technician next put a Lidocaine swab up Karyn’s nose to deaden it, and then inserted a small tube, which goes up the nose and into the stomach. Can you say gag?
Over the next half hour, the tech squirts a bit of saline into my mouth and asks me to swallow once. If I double swallow before I get another squirt, it does not count towards the 10 swallows needed. Each time I swallowed, my throat became sorer. Let’s just say it was miserable. Once they pulled the catheter out, I had a few minutes to regroup and then the process started all over again. More Lidocaine. This time, the catheter inserted into my nose and threaded down into my stomach is much smaller. The probe is hooked into a monitor I wear about my neck. I must record every time I eat or drink anything and when I stop. The monitor can show a correlation between what I eat and when excess stomach acid begins. The tech looked me in the eye and staring at me, said, “I only ask two things. Don’t hit me and don’t vomit in my face.” No fist fights broke out and there was no projectile vomiting. The probe is kind of clever in a sadistic kind of way. I now have the probe in and am able to eat with minimal discomfort. Results will indicate whether there is acid reflux and a probable need for a Nissen Fundiplication stomach wrap surgery after transplant.
Wednesday morning could not come fast enough as far as my throat was concerned. I arrived at the hospital early so the probe could be removed. On to the liver ultrasound. I relaxed on the table while ultrasound jelly was smeared around my lower right ribs and belly. Next onto to radiology for a fluoroscopy of my diaphragm. The machine took pictures while I perform different types of breaths in different positions.
Now the fun ends with a barium swallow study. In high school I memorized the periodic table of elements. Just because they can be consumed does not mean they are appetizing. The drink is almost more solid than liquid. You could use the cup for a dumbbell. The barium inflates my stomach and I need to roll around to give the camera many views.
On Thursday, I have an echocardiogram. Then the heart catherization. The numbing and threading parts are not too comfortable. I cough and am asked not to cough. I cough again. Easy for them to say, hard for me to do.
On the fifth day, we scurry to get in all the tests and meetings. Pulmonary function test in the morning. Arterial blood gas draw. Then to meet the financial coordinator. Luckily, we have strong insurance, and this is not a financial roadblock. How sad when someone cannot be transplanted because of lack of insurance or lack of funds. CT scan of sinuses and my lungs. With contrast. I feel flushed and like I need to pee or maybe like I did. Another IV and dye. Richard and his sister went in the afternoon in search of places to stay. DUKE has an excellent satellite system of housing, and Richard picked the Residence Inn in Durham. There is a good-sized group of lung patients there, and it will be good to be around others, sharing a common experience. It’s a real plus, to be among your own kind, all going through the same program.
We left for home, and the wait for the call. Will I get in? Monday was the beginning of the waiting game. The transplant committee meets on Tuesday mornings and you are notified Thursday or Friday. You must then relocate to DUKE as soon as possible.
Thursday March 19, 2009
COMING TO DUKE
This Side
Dear Diary,
DUKE just called and said, “Come as soon as possible.” I am breathless even sitting with my oxygen turned up. We leave this Sunday, March 22nd, for the 1800 mile drive through nine states to my destiny. We will arrive on Tuesday and make our home at the Residence Inn in Durham. We will take the first 5 days to settle in, put some food in the cupboards, and of course find someone to do my hair.
I start working out next week at the DUKE Center For Living. It’s required. One of the reasons I chose DUKE is they want me healthy and strong. Can a person who is awaiting a double lung transplant be healthy and strong? Well, they want me as healthy and as strong as I can be. That means a minimum of twenty three sessions at the Center for Living, which will take anywhere from five to six weeks, working out four hours a day, Monday through Friday, and attending the Center’s transplant school.
The greatest part of all that, a week or so after completing the r
equired sessions, DUKE activates you for transplant, and the average wait time for lungs is 19 days. Air, here I come. A taste sweeter than any fine wine.
It all seems unreal and I wonder what awaits me on the other side,
Karyn
Saturday
Dear Diary,
It’s spring here. Spring is wonderful, makes you feel like . . . blowing your nose and wiping your eyes. Rich, I need my Claritin!
When we arrived here I was feeling very sick and tired. I do not even remember the drive. Rich drove the entire way, and I slept almost the entire way. When I started rehab at the CFL, I could barely work out and was a real whiner. Turning away from my difficulties and fears has helped me move forward all these years. I now know I must deal with my fears to move ahead and into recovery after surgery.
Moving forward,
Karyn
Sunday
Dear Diary,
Many ups and downs this week. Last Wednesday, I had an incredible work-out. I walked more laps in 20 minutes than I ever did in 30 minutes. Yippee!
The next day was not so good. I woke up and had trouble breathing. We had to meet with a psychologist because they thought I needed coping with panic. I had stopped taking Xanax when DUKE had called and said to come on down but only after I had weaned off of it. THEY thought I would not push through after surgery because of my panic. DO THEY KNOW ME!?
The Taste of Air Page 7