End-of-Day Update

Col's Johns Hopkins pulmonologist, Dr. Mathai, wants Colleen, still stable, to stay in the hospital a few more days. Although her being in Baltimore means being 3 hours away from everybody, we feel the 24/7 nursing care, the proximity to her doctor and, hopefully, some good sleep, are the best things for Colleen right now.

Two hours ago -- 8 pm EST -- she was still in the ER waiting for a bed and feeling restless. (Pat & Beth had just headed back up to New Jersey.)  It's 10 o'clock there now, so too late to call to see if she's settled in her own room. Please be so.

Powerless.

Stabilized

The Johns Hopkins ER has stabilized Colleen.

No way to say this any easier: back to Baltimore

Colleen is, at this moment, on the road back to Johns Hopkins hospital, her friends Beth and Pat driving. Over the last two days, fluid has built up again to the point where only medical staff can intervene. The fluid buildup is related to the heart-lungs and also kidney symbiosis. Strained lungs cause a backup of blood from the heart which causes hypertension in the pulmonary artery between the heart and lungs and also means that the blood and oxygen flow throughout the entire body, including the brain, is insufficient which then, don't know how exactly, impacts the kidneys. It's at this point, I believe, fluid retention begins.

Prayers.

Postscript to Saint Patrick & Saint Brigit's Day

                                 Isabel Stenzel (left), double-lung recipient  

From the San Francisco Chronicle, March 18, 2013, via my friend Loy in Palo Alto:

Ten years ago, Isabel Stenzel couldn’t walk without getting short of breath. On Saturday, she’ll be playing the bagpipes in San Francisco’s St. Patrick’s Day parade — a job that’s taxing even for people who haven’t undergone a double lung transplant.

The 41-year-old social worker from Redwood City emerged from the operation in 2004 able to breathe normally after a lifetime with cystic fibrosis, a genetic and chronic disease that builds up heavy mucus in lungs and makes breathing almost impossible.

The sound of the bagpipes “is so powerful,” she says, calling it “my donor’s voice, my donor’s sound that would be heard by the world. What a beautiful way to honor his gift of lungs.”

She’d never even played the pipes before her operation.

.....

When Isabel Stenzel wails away on her bagpipes, playing "The Wearing of the Green" and marching in Saturday's St. Patrick's Day parade in San Francisco, she'll be relying on her own fingers, her own legs and someone else's lungs.

"I was so sick before," Stenzel said. "I couldn't even walk without being short of breath. At the end, I couldn't even brush my teeth without being short of breath. And here I am marching, da-da-da, playing 'Scotland the Brave'  in full uniform. I'm like, 'What?' It's more than a dream."

Playing wasn't even a pipe dream in the months following Stenzel's transplant at Stanford Hospital. She had to blow into a device to help reinflate the donated lungs after they shrank slightly in transit, then slowly built up her breathing capacity by jogging and swimming.

Bagpipe fever struck, however, at a donor-recipient event in Hayward a few months after her transplant, when a bagpipe troupe played.

Honoring donor

Stenzel had never played the pipes, but "when they came on stage, I was like, 'Wow. I want to do that,' " she said. "The sound is so powerful. It wouldn't be my sound, but it would be my donor's voice, my donor's sound that would be heard by the world. What a beautiful way to honor his gift of lungs."

She began taking lessons near her job in San Jose and joined the Stewart Tartan Pipes and Drums in 2007, practicing weekly at a church in Saratoga and drilling marching formations in the parking lot.

Stenzel has devoted her life to organ donation advocacy. She and her twin sister, Anabel, were both born with cystic fibrosis - her sister has received two double-lung transplants - and they wrote a memoir about living with the disease that inspired a documentary film in 2011. They're both active in helping others in the Bay Area with cystic fibrosis, and Stenzel has gotten to know the family of her donor, an 18-year-old Fresno man who died in a car crash.

But when Isabel Stenzel puts on her wool tartan plaid kilt, doublet, cape, spats and ostrich-feather bonnet Saturday to march up Market Street, she'll take off her advocacy hat. 

Just like anyone else

"What I love is that my identity my entire life has been dominated by my illness, and I've always been the CF patient, the sick girl, the transplant recipient," she said. "In my piping band, I'm just another piper."

Bagpipes require deep lung capacity, enough to fill the bag with air, which then leaves through three drone pipes that always play the same note and one chanter that plays a melody.

Stenzel, like other beginners, started playing with all three drones plugged to lessen the airflow demand. She had played piano and violin as a child but never a wind instrument, and had no idea how to direct her air. As she played more and conditioned her lungs enough to unplug all three drones, her breathing capacity grew from 95 percent of normal to 125 percent, she said.

"It amazes me that I have the lung power to march and play," Stenzel said. "In one of my earlier parades, I had this very surreal and out-of-body experience. I felt like I was living a different life. I was in a different body, and in a way I am."

This new life, while sweet, could also stop at any point, Stenzel knows. Lung recipients face a risky future even after a successful transplant, with odds slightly higher than 50 percent that they will survive more than five years after the operation.

Twin's second transplant

Stenzel's twin had a double-lung transplant in 2000 and another in 2007 after her body rejected the first set. Stenzel's lungs are vulnerable to infections, and while high airflow from playing the pipes can help, she also has to be vigilant about mold that can grow in the instrument.

She can't swap her pipes with other players, who pass them around at shows and festivals "like a cup of whiskey," she said. And even if she's careful, transplanted lungs can slowly lose function over time.

"Rejection is always a possibility," she said. "I even get very tearful thinking about how someday, I'm not going to be able to play the pipes. I guess that's the case for every human being - all of us have to give up something we love as we age. For me, it's much more imminent."

But while she's still able to play, she said, it's "life-affirming," for herself and for her donor's family. "I feel so alive."

Donating organs

To register to be an organ donor, go to www.donatelifecalifornia.org.

Hepititis B

Another doctor's visit today
First shot in the series of 3 over 6 month s.
No sweat, a prick and a burn.

UPMC wanted me to have this vaccine just in case a lung donor had had this virus.  I know Chelsea had to get it before college and I understand now they give it to the babies.  Most adults  recover in a short time. However, Sometimes the virus causes a long-term infection, called chronic hepatitis B. Over time, it can damage your liver. Babies and young children infected with the virus are more likely to get chronic hepatitis B. 

You can have hepatitis B and not know it. You may not have symptoms. If you do, they can make you feel like you have the flu. But as long as you have the virus, you can spread it to others through contact with the blood and bodily fluids.

Word to the Wise...You may get hepatitis B if you:

• Have sex with an infected person without using a condom.  
• Share needles (used for injecting drugs) with an infected person. 
• Get a tattoo or piercing with tools that were not cleaned well.
• Share personal items like razors or toothbrushes with an infected person. 

I think I'm safe in all these categories.

Helping Hands

I hope your spirits were lifted when you heard the sound of the pipes.  I settled for TV viewing.  It's not the  same but it was still great and it spurred me on to listen to my great Irish CDs, courtesy of Larry.  I missed a good cold Irish Beer and a sing-a-long.   My days have been unbelievably busy.  All of a sudden it's 2 0'clock and I haven't accomplished much.  Tasks take a long time.  Nellie and I are adjusting to one another.    I look like a mad scientist, gloves, swaps, water, .....but she doesn't wake me up anymore at night.  My stuffed up nose from high flow oxygen does.

I woke fatigued and more breathless so the monkey mind gets going. You think you're the only one going through this or that.  Then, for some uncanny reason, you connect with someone who is there to give you a "helping hand".  Thanks to the internet, more of us can find each other.  Ilene from Florida and Scott from right here in Atlantic County spent hours on the phone giving me advice and letting me know some of the logistics of  transplant.  Once again, it made me realize that I'm not in this alone and there are so many good people out there offering a helping hand.

Today, I will do the best that I can.

reporting in . on somers point via santa monica . gusting, high winds of the medical variety . holding steady

                                                

     Since returning from Pittsburgh a month ago on February 16, and since coming home from Johns Hopkins 10 days ago on March 10, Colleen has been fully engaged in reaching the goals set for her by Pittsburgh's Lung Transplant Committee--with Dr. Mathai & Dr. McDyer having her back, so to speak.

     To put it more graphically, my opinion as a manual transmission driver is that Colleen has shifted from 1st to 4th gear without the luxury of stops in between.

     There's a deadline now. Or a "kinda" deadline, since nothing's exact in this arena of infinite variables.

     May 13.

     This is the date of Colleen's next scheduled visit to the University of Pittsburgh Medical Center. Pittsburgh requires all of its lung transplant candidates--even deferred lung transplant candidates like Colleen--to have a very specific series of tests done every three months. No exceptions. And these tests have to be done in Pittsburgh. No exceptions. 

     Colleen's first 3-month checkup is now scheduled for May 13. And, thus, has become her personal deadline for reaching the goals necessary to be put on the transplant list. The Lung Transplant Committee believes that Colleen has a "small window" in which to get a new pair of lungs. Colleen and all of us heard that message loud and clear.

     So, with all that in mind, the following To-Do list might give you an idea of what daily life at 10 Village Drive is like for Colleen at the moment: 

   Put forth the effort to gain weight: do your   
   best, in spite of how difficult it is, to eat 600 
   extra calories a day, in addition to giving myself
   supplemental liquid nutrition at night through 
   NutriNellie; keep NutriNellie clean 
  
   Make sure to get between 50-60 grams of protein a 
   day.

   Put forth the effort to gain strength, especially 
   in the legs, the breathing muscles, and aerobic
   endurance: a Physical Therapist comes to the house
   2 times a week, an Occupational Therapist 2 times 
   a week; Colleen is doing as much indoor walking as
   she can manage. The specific goal here is to be 
   able to walk 400 feet in 6 minutes.

   Put forth the effort to stay in good, regular 
   communication both with Johns Hopkins and with 
   Pittsburgh.

   Be sure to do all required testing, which means 
   making and keeping all necessary doctor 
   appointments, including Colleen going back to 
   Baltimore the week after next to see her primary 
   scleroderma physician, Dr. Wigley. She hasn't seen
   the beloved Dr. Wigley since before going to 
   Pittsburgh. So I'm sure he's eager to see her 
   after all that's transpired since then.

   Welcome the RN, who now comes a few days a week,
   and also Mickey, a friend and home-health aide, 
   who comes for a few hours one or two times a week.
  
   Welcome visitors. Take phone calls.

   Get dressed, shower, wash hair, prepare meals, 
   drink water, manage groceries, manage oxygen 
   supplies and equipment, tend to nose rendered 
   quite vulnerable due to 24/7 oxygen canula, manage
   clean clothes,count pennies, manage sanity and, oh
   yeah, rest. 

   Aim for personal bests.

   Prepare to move to Pittsburgh at a moment's 
   notice.

And that's not all of the iceberg.

Do you think this is a full-time job? Do you think
this is a job for the faint-of-heart? Do you think
even a person with fully operational lungs would 
have the mettle to take this on?

Questions to ponder.


Reminder to all, including myself:  resist the temptation to talk too long on the phone with Colleen. To those who visit: know that, for right now, a short stay is far better for her than a long one. Suggestions only.


PS:  We checked in by phone today with Judy and Ed, whom we met at Family House in Pittsburgh. After being there since before Christmas for Ed's single-lung transplant surgery, they just returned home to New York yesterday. Ed is doing great and no longer psychologically attached to the oxygen canula. Hooray. I asked about the others we'd come to know well at Family House. They're all home now too.