Living Well with a Bad Diagnosis - Lung Disease

Sunday, June 30, 2013


We had fun yesterday. I ran several errands with mom after her hair appointment then we had a nice, long, chatty lunch at Nordstroms. Not being able to avoid the long drive home, I began the journey at 1:48. My twenty-five minute drive took one hour and five minutes. Not too awful. Frank Sinatra Live at the Sands with Count Basie, double record set was blasting through the speakers. Lots of history there:

The weather was the cause of my problems. It was stunning, bright, warm, just beautiful on the coastside. It was hot and miserable everywhere else so thousands came to the water's edge. My home. It is always a pleasure to share it with everyone. Others can breathe in the clean air. Others can enjoy the cooler breezes. But, it is nice when they all go home!

Breathing. The beautiful Susan from the ILD Support Group phoned. She is still dealing with receiving a proper diagnosis and there is some hint that she might actually have HP. Fearing the side effects, she didn't want to do a run of prednisone and cellcept that her doctor recommended. I remember my first run on 40 mgs - seven weeks of nothing but frenetic energy and no sleep but I felt fantastic! She has just moved into a new home and is totally exhausted. There is an overlayment of inflammation so this run could calm that down to allow her to breathe better. After talking it through, she is going to contact the doctor to tell him she has changed her mind and wants to try a run of the drugs.

She is also dealing with needing supplemental oxygen for the first time. So confusing. She thought the portable oxygen systems were indeed portable. She thought they would be worn as a backpack. No one mentioned that they are heavy and hard to get Medicare approval because that has to become your only supplemental oxygen system. They are great during travel but for every day use? Not so much. My oxygen company, which she is joining, no longer is offering liquid oxygen systems for their new clients. It seems that she is going to need 2 liters during exertion and probably at night. Not a lot of oxygen. So, the best systems for her seemed to be the small gas canisters in a backpack for daytime use and a larger tank in her bedroom for nights. No electric concentrators yet!

Today? It is already simply gorgeous. I am running into town early this morning for some meat for dinner then I am staying home the rest of the day. The hidden garden off our bedroom needs some hand trimming but that is the only thing planned. Thousands more will make their way to our little town on the ocean today to breath in the cool, clean air.

Saturday, June 29, 2013

Coastside Sunshine - A Rare June Event

It is warm here. That is a rare event on the oceanside in the summer. It is going to be packed with people trying to escape the 100+ temperatures throughout the Bay Area. There are three ways in and out of town. The major pass will be impossible and will probably take two hours or more to drive the 10-minute pass. The second pass from the north is through the new tunnel, pass a major whale watching beach, along the most famous of surfer's beach and always packed fish restaurant. The third option from the south is over my favorite road but it is long and curvy and I have never driven it alone.

Why reviewing the options? Mom can't drive and she has her standard Saturday morning appointment to get her hair washed. Someone has to get her there! While she is in the chair, I will run up to a very old toy and hobby store to buy a race car set for Oliver, who just turned three-years old. They will be here on Tuesday to celebrate this milestone. After my toy run, we will take her freshly washed hair out for lunch then I will head home. I think I will choose the option from the north but it will be a challenge.

I worked five hours in the gardens yesterday, made dinner then we went to Jim and Kathy's for a bonfire. There was food. There was an amazing array of drinks. There were a lot of people. The night was warm. Around 9:30, I finally told Michael I needed to get home. I was still trying to recover from the drama and lack of sleep during mom's surgery and I was totally done. I have a feeling that I will be taking a nap this afternoon.

Friday, June 28, 2013

Preparing for Colonoscopy and Connection to Hypersensitivity Pneumonitis

With years of prednisone and Imuran flowing through my liver, it is tired and swollen and sore. He wanted to scratch off a possible connection so, the liver doctor asked when I was due for a colonoscopy. Oddly enough, I am due for one now. It has been ten years since the last one. June of 2003. I was 49-years old.

The reason for the colonoscopy when I was so young was constant vomiting, low-grade fever and pain in my left side. It revealed nothing unusual. What we didn't know was these were the first signs of my lung disease. The first symptoms are "flu-like." It all fits into the timeline. By June of 2004, I was seeing a local doctor and having a terrible time with being short of breath, not being able to inhale or yawn and having a dry, hacking cough on exertion.

When I told the doctor about it all yesterday, she was rather shocked. I think she may have thought I was blaming her for not recognizing the lung disease ten years ago. I reminded her that I have a rare disease and it took a lung biopsy for a proper diagnosis.

For the colonoscopy in two weeks, she is going to give me prednisone in my IV as I will not be able to take it that the morning for obvious reasons. She also will be sure my saturation rates stay above 93%. This is one fabulous doctor. She NEVER had her patients drink a gallon of the horrible salt water. Years ago, I drank tablespoons of a phosphate mixture in a small glass of water. That was it. Apparently, a few people had kidney issues with that method so she currently prescribes another way to clean everyone out with 38 pills. But because of my lung disease, she has ordered another way to make sure I am empty before the procedure. The information is below from the web site. So simple. If you are going to have a colonoscopy, realize there are a few options besides drinking the gallon of salt water.

What to Expect with SUPREP Bowel Prep Kit

Be sure to follow your doctor’s instructions and carefully read the information that comes with SUPREP Bowel Prep Kit. Your doctor will tell you when it is time to begin taking SUPREP Bowel Prep Kit.
SUPREP is a low-volume bowel preparation that is taken as a split-dose regimen. A split-dose regimen means that you take two 6-ounce bottles of SUPREP Bowel Prep Kit. The first 6-ounce bottle is taken the evening before your colonoscopy and the second 6-ounce bottle is taken the morning of your colonoscopy.
The evening before your colonoscopy, pour the 6-ounce bottle of SUPREP liquid into the mixing container that comes with the kit. Then add cool water to the 16-ounce line on the container and mix. Drink all the liquid in the container. You MUST drink two more 16-ounce containers of water over the next hour.
Follow these same directions for preparing and taking the second 6-ounce bottle of SUPREP Bowel Prep Kit on the morning of your colonoscopy. You MUST finish drinking the final glass of water at least 2 hour before your colonoscopy.
In clinical studies, the most common side effects that people experienced with SUPREP Bowel Prep Kit were overall discomfort, abdominal distention, abdominal pain, nausea, vomiting and headache. 

Call your doctor if you have any questions about taking SUPREP Bowel Prep Kit.

Thursday, June 27, 2013


Mom is home. The surgery to implant the pacemaker was, as the doctor later told me, challenging. She is in a study of potentially 20 people at her university hospital. She is No. 4. She has committed to three years of extensive testing of the device, which is much smaller than devices currently being used. She has a hand-held device at her house that will read the data from the pacemaker and send it directly to her doctor.

The surgery itself took almost 4.5 hours instead of the expected 2 to 3 hours. I was beginning to get very nervous. Apparently, they inserted the first two leads very easily into the top area of her heart but when they tried to plant the big lead into a vein in the lower area, the vein started to tear. There was a blockage! What a surprise. When the lead pushed on the blockage, it started to tear the vein. They broke through it and the blockage is now holding the lead in place. The only reason all went well was the experience and the good hands of the amazing heart surgeon. Yes, the classical pianist. Love those fingers.

She was doing so well that she was released yesterday afternoon. I got her home, settled, fed and will return this morning. The really bad news is that she cannot drive for two weeks. That is going to be the hardest thing about this whole event. Hard to keep a good woman down!

I am beyond exhausted. Since the dinner party last Sunday, I have not slept well. Finally last night, I passed out. It is going to take days to get my energy back to normal. Today, I need to shower, see mom, take her to Safeway and lunch, meet with my colonscopy doctor, buy groceries and return a bunch of phone calls.

The day has not started well. I tried printing my list of medications and the printer is broken. Then, I noticed that Michael did not close the freezer drawer again last night and I had to throw everything away. I hope nothing else goes wrong today though I just wrote a note to myself to backup my computer!

Wednesday, June 26, 2013

Two Women

After spending the day at the hospital with mom, I was leaving last night around 9:30 when I met her. While waiting for the valet to retrieve my car, a man dropped off a pretty woman along with her large green canister of oxygen at the curb while he parked the car. The valet service only retrieves cars after 9:00 so he had to self park.

There was only the two of us. No one else was around. I approached her and said that I too was on oxygen and that I am on the path towards lung transplants. She smiled and said, "I hope to get my new one lung tonight!" She had IPF, been on the transplant list since May and here she was on a Tuesday night in June standing and waiting for her husband to park the car then her life would be changed forever.

Offering her the best of luck and a wish for the pinkest, prettiest lungs ever, I asked if I could give her a hug. Two women. Strangers. Standing and crying together all alone in the dark infront of a hospital. I have been thinking about her all night. I hope she is alive and well.

Tuesday, June 25, 2013

What is that Smell?

Mom's pre-op went very well yesterday and the surgery to install her pacemaker/defibrillator is this morning. We have to be at the hospital at 9:45 and she should be out of recovery by 6 this evening. She will be spending the night. I probably won't be home until after 9:00. It is going to be a long day and we are both confident that all will go well.

I do have a funny story. After getting dressed to workout at the other rehab yesterday, I got into the car and began to smell something familiar. It took a few minutes to realize that it was the aroma of grilling onions. Apparently, when the Vietnamese food was cooking in the middle of the table the night before, the pants I was wearing picked up the odor of the grilling onions. Yesterday morning, I was wearing those same pants to rehab.

Too late to turn back, I kept going. During rehab, a man I know was beside me working out on another bike. After a couple of minutes together, I asked if I smelled of grilled onions. He said that he had not wanted to embarrass me but, yes I did smell. I told him the story, we laughed and when he finished, he mentioned that he suddenly had the urge for French Onion Soup for lunch!

I warned mom as she welcomed me. Yes, she smelled it. We made jokes about it all morning. Finally, I found myself in a small room with an anesthesiologist. Shall I say something? I decided it was better to mention it. Yes, she could smell it and she was pregnant! I was hoping it wouldn't cause her to be ill! We all laughed again.

While the onions were cooking, I mentioned that there should be a perfume of grilled onions as every man would follow the scent! Wrong! After awhile, even I who loves the smell, had enough. I immediately washed the pants when I got home!

Monday, June 24, 2013

Sleep Deprived

Five and a half hours of sleep. That is what we will be functioning on today. Lots of coffee with be involved. We were welcomed into the home of the owner of the three of our favorite restaurants in the city. It was family. Their two-year old daughter was charming and such a dancer! The food was prepared by Elle who was raised in Vietnam. It started with a combo of shrimp and crab on a baguette, baked then broiled. Dinner was rice wrappers and the filling was cooking in the middle of the table - shrimp, calamari, onions, meat - along with lettuce, mint and bean sprouts. All was then wrapped like a burrito and dipped into her fantastic fish sauce. What a cook! Dessert was strawberries and red wine with whipped cream. Delicious. I have not had fruit in so long, it was delightful. When eating at someone's home, I eat mostly everything offered. I don't want to be rude. I don't have to finish everything but I have to try everything. I will be very careful with my diet today and the next few days.

We almost felt our way home because the fog was so thick along the coast. It is raining again this morning which is so rare this time of year. I glanced at the clock as we climbing into bed at 12:30 counting the hours on my fingers when the alarm would sounds encouraging us to get up. Back to work. Back to life.

I am going to the other rehab this morning then driving mom to her pre-op appointment. By the way, my new glasses arrived on Saturday and I am taking them to be fitted this morning. So very cute. I am very happy with the entire process. Warby Parker. Love them.

Sunday, June 23, 2013

Pool Party Recap

We didn't get into bed before midnight. It is going to be a long day today! And forget about cutting the grass because it actually rained last night! Everything is very wet. My goal? Back to bed within minutes then a quick run into town to buy flowers for the hostess tonight and a nice shower. We need to be in the city by 7:00 tonight.

I have to mention that we were driving in the northern central valley of California, often considered the food basket of the country. This area was mostly known for its nut trees and food crops therefore, it was a total shock to drive past fields after fields of sunflowers standing happily in the hot sun. Thousands of acres.

It was fun to see all of Jeff's relatives enjoying each other, as they rarely are able to be together in one room! Mom enjoyed herself so much. We sat with our legs in the pool when it got into the 90s. None of the adults wandered into the pool so I didn't want to be the first one in. At the end of the day, only the children had enjoyed the pool. There was a beautiful breeze so it really wasn't too hot.

I probably didn't make my sister too happy when my niece hauled me into her old bedroom to bring me up to date. So much has happened to her since her wedding in May of 2012. In January, her husband announced that he may not want children after all, the reason they finally married after seven years together. By April, they were separated. It all made sense after she discovered a couple of issues from his childhood friends. She has filed for an annulment.

The food was fantastic. My pasta salad was a hit, Lee and Jeff served tri-tips and a boneless leg of lamb from the grill and local corn on the cob.

The day was filled with conversations with very nice people, watching three young children who were delightful and sweet, watching my mom and niece sit side-by-side telling stories to each other and it was especially nice to watch Michael relax. He really needed a day off. I think he actually drifted off beside the pool at one point!

Saturday, June 22, 2013


We have our weekend routines. Saturdays, I am usually picking up the house, running to the bank, doing the laundry and working four to five hours in the yard. Afterwards, I take a nice shower and walk through the gardens. We have dinner at home and it is satisfying to have all the work done at the end of the day.

This Saturday, we are leaving this morning to pick up some car parts for Michael at a famous hot rod place then drive to mom's, throw her in the car and drive two hours to my sister's house. The weather here on the coast is expected to be 75 today. The weather at my sister's house is expected to be 95 today. They are throwing a pool party for both of their families. There will be children. There will be lots of adults. I am looking forward to spending time with my niece and also seeing my sister's new kitchen. I made my famous Pasta Salad and will pack it on ice for the long drive. We should be home around midnight.

Usually on Sundays, we either spend the day together or I drop Michael off at his little shop for a couple of hours. I use that time to work out at the other rehab and to do a little shopping. We have lunch together then drive home. The rest of the day we often enjoy a Giant's or 49er game or hang out in the garden together.

This Sunday, I will be exhausted from Saturday so I will try to do nothing but nap. Sunday evening, we have been invited for the first time to the home of the owner of our favorite French restaurant. He is French. His wife is Vietnamese. She is doing the cooking and I can't wait to taste fantastic foods! They have a little girl who just turned two years old. It is going to be a late night.

So, I will be exhausted going into a very stressful week. Mom's pacemaker surgery is Tuesday.

My goal for the next week is to do nothing whenever possible so I can regain my stamina and hopefully not get sick. It will just take a few days. I hope.

Friday, June 21, 2013

First Step

I love when I am the conduit between people. Mom's cardiac surgeon and I were talking music during her appointment weeks ago. He has been a classical pianist for over ten years and wanted to begin to study jazz. Not as easy as it sounds. I have found that people who have classical piano under their belts have a much deeper level of understanding when they learn jazz. He asked me if I could recommend a jazz piano teacher.

My very cool glaucoma doctor was just beginning jazz piano lessons when I met him almost seven years ago. Since then, he has worked hard, has become professional and actually earns money playing on the weekends. I am so proud of him! He gives credit to much of his success to his first jazz piano teacher. So, earlier this week I phoned his office to ask for a referral for mom's fancy cardiac surgeon.

Dr. W. returned my call early Tuesday morning with the name and contact information of his former teacher and was thrilled that another physician is beginning the journey.

At mom's pre-op appointment yesterday to sign all the papers have the new, smaller pacemaker/defibrillator implanted next week, I passed the teacher's name and number to him. That brought on another full conversation amongst the three other people in the room regarding music, the brain and the correlation between musicians and physicians.

So now it is up to him. It is often scary to begin at the beginning. I so admire when people take that first step.

Thursday, June 20, 2013

Cancer Incision

 Okay, maybe this is just a bit too much information but I promised to blog a photo of the incision which removed the basil cell carcinoma from my chest. It is below. It is long. The stitches are being removed on Friday afternoon. It is still tender and I felt some pulling in yoga yesterday so I understand why I was not allowed to exercise for a week. 

Please, please if you are an older adult, have a doctor look at your skin. This was a minor cancer. A less than a centimeter-sized cancer and look at the incision it took for it to be removed. We were raised in the Midwest, wearing sleeveless shirts and shorts and getting many sunburns each summer. There was no such thing as sun screen. 

Throughout William’s childhood, we made sure he never had a sunburn. A couple of years ago, we were sitting in the garden and while just chatting away, his arms were exposed and he had his first sunburn. I felt terrible! It was on my watch! 

So prepare yourself to see it. It is ugly but maybe my freckles will eventually be the camouflage.

Wednesday, June 19, 2013

New Glasses

The Famous Painted Ladies
Saturday evening, we drove to the city to finally buy new sunglasses for Michael before the store closed at 6:00. We brought along his prescription and I threw mine in my purse at the last moment. It was crazy traffic as a freeway filled with cars stopped as the minutes ticked away. Fortunately, most of the cars were headed to the Bay Bridge and we slipped by to escape on the Golden Gate Bridge exit. Into the city we went. Block after block of traffic. We passed Alamo Square with its beautiful Painted Ladies and tons of tourists. We found the area of the store but just couldn't find it. We drove around the block seven times in lots of traffic. Finally, my iPhone revealed that it was IN an antique store which we just passed! Back around, parked (thank you for the disability spot) and finally arrived just thirty minutes before they closed.

Warby Parker.

William had told us about the owners of this company who felt eye glasses were too expensive, began a business, all the hip people on his tours wear them and they are inexpensive! How is works is that they have a very few showrooms throughout the US so most people look at the web site, order five to sample, return and choose another five to be shipped if any of the first group didn't work, all free shipping, a prescription is sent back with the chosen pair and the new glasses arrive a week later. If they need an adjustment, they have an agreement with Costco and Lens Crafters and the company reimburses them $50.00. No cost to the consumer.

I have to tell you, I was very surprised by the quality and the coolness of the samples. Michael bought these:

They were $150. Prescription sunglasses!

I began to try on regular glasses and bought these:

They were $95.

Afterwards, we made our way across the city and saw every tourist in town! We tried to go to North Beach - couldn't move. Stopped traffic. Worked our way up Van Ness. Stopped with buses and traffic. Drive back past Union Square which was also packed with people to finally make our way to Pac Bell Baseball Park, got onto the freeway and off at the first exit. We decided to eat dinner at our friend's restaurant, where we were greeted with kisses on both cheeks and a rare available table. It is a tiny place with the best organic Mexican food. Michael had his duck confit quesadilla and I had a fish taco. They are tiny tacos but they are full of flavor.

We fell into bed satisfied that we finally ordered Michael's glasses and we had an adventure to boot!

Tuesday, June 18, 2013

Growing Organs

I read this on line yesterday. Amazing. Need a kidney, let's grow it! Lungs are waaaaay in the future but I thought the idea of it all was worth passing the article along on the blog.

To ease shortage of organs, grow them in a lab?

NEW YORK (AP) — By the time 10-year-old Sarah Murnaghan finally got a lung transplant last week, she'd been waiting for months, and her parents had sued to give her a better shot at surgery.
Her cystic fibrosis was threatening her life, and her case spurred a debate on how to allocate donor organs. Lungs and other organs for transplant are scarce.
But what if there were another way? What if you could grow a custom-made organ in a lab?
It sounds incredible. But just a three-hour drive from the Philadelphia hospital where Sarah got her transplant, another little girl is benefiting from just that sort of technology. Two years ago, Angela Irizarry of Lewisburg, Pa., needed a crucial blood vessel. Researchers built her one in a laboratory, using cells from her own bone marrow. Today the 5-year-old sings, dances and dreams of becoming a firefighter — and a doctor.
Growing lungs and other organs for transplant is still in the future, but scientists are working toward that goal. In North Carolina, a 3-D printer builds prototype kidneys. In several labs, scientists study how to build on the internal scaffolding of hearts, lungs, livers and kidneys of people and pigs to make custom-made implants.
Here's the dream scenario: A patient donates cells, either from a biopsy or maybe just a blood draw. A lab uses them, or cells made from them, to seed onto a scaffold that's shaped like the organ he needs. Then, says Dr. Harald Ott of Massachusetts General Hospital, "we can regenerate an organ that will not be rejected (and can be) grown on demand and transplanted surgically, similar to a donor organ."
That won't happen anytime soon for solid organs like lungs or livers. But as Angela Irizarry's case shows, simpler body parts are already being used as researchers explore the possibilities of the field.
Just a few weeks ago, a girl in Peoria, Ill., got an experimental windpipe that used a synthetic scaffold covered in stem cells from her own bone marrow. More than a dozen patients have had similar operations.
Dozens of people are thriving with experimental bladders made from their own cells, as are more than a dozen who have urethras made from their own bladder tissue. A Swedish girl who got a vein made with her marrow cells to bypass a liver vein blockage in 2011 is still doing well, her surgeon says.
In some cases the idea has even become standard practice. Surgeons can use a patient's own cells, processed in a lab, to repair cartilage in the knee. Burn victims are treated with lab-grown skin.
In 2011, it was Angela Irizarry's turn to wade into the field of tissue engineering.
Angela was born in 2007 with a heart that had only one functional pumping chamber, a potentially lethal condition that leaves the body short of oxygen. Standard treatment involves a series of operations, the last of which implants a blood vessel near the heart to connect a vein to an artery, which effectively rearranges the organ's plumbing.
Yale University surgeons told Angela's parents they could try to create that conduit with bone marrow cells. It had already worked for a series of patients in Japan, but Angela would be the first participant in an American study.
"There was a risk," recalled Angela's mother, Claudia Irizarry. But she and her husband liked the idea that the implant would grow along with Angela, so that it wouldn't have to be replaced later.
So, over 12 hours one day, doctors took bone marrow from Angela and extracted certain cells, seeded them onto a 5-inch-long biodegradable tube, incubated them for two hours, and then implanted the graft into Angela to grow into a blood vessel.
It's been almost two years and Angela is doing well, her mother says. Before the surgery she couldn't run or play without getting tired and turning blue from lack of oxygen, she said. Now, "she is able to have a normal play day."
This seed-and-scaffold approach to creating a body part is not as simple as seeding a lawn. In fact, the researchers in charge of Angela's study had been putting the lab-made blood vessels into people for nearly a decade in Japan before they realized that they were completely wrong in their understanding of what was happening inside the body.
"We'd always assumed we were making blood vessels from the cells we were seeding onto the graft," said Dr. Christopher Breuer, now at Nationwide Children's Hospital in Columbus, Ohio. But then studies in mice showed that in fact, the building blocks were cells that migrated in from other blood vessels. The seeded cells actually died off quickly. "We in essence found out we had done the right thing for the wrong reasons," Breuer said.
Other kinds of implants have also shown that the seeded cells can act as beacons that summon cells from the recipient's body, said William Wagner, director of the McGowan Institute for Regenerative Medicine at the University of Pittsburgh. Sometimes that works out fine, but other times it can lead to scarring or inflammation instead, he said. Controlling what happens when an engineered implant interacts with the body is a key challenge, he said.
So far, the lab-grown parts implanted in people have involved fairly simple structures — basically sheets, tubes and hollow containers, notes Anthony Atala of Wake Forest University whose lab also has made scaffolds for noses and ears. Solid internal organs like livers, hearts and kidneys are far more complex to make.
His pioneering lab at Wake Forest is using a 3-D printer to make miniature prototype kidneys, some as small as a half dollar, and other structures for research. Instead of depositing ink, the printer puts down a gel-like biodegradable scaffold plus a mixture of cells to build a kidney layer by layer. Atala expects it will take many years before printed organs find their way into patients.
Another organ-building strategy used by Atala and maybe half a dozen other labs starts with an organ, washes its cells off the inert scaffolding that holds cells together, and then plants that scaffolding with new cells.
"It's almost like taking an apartment building, moving everybody out ... and then really trying to repopulate that apartment building with different cells," says Dr. John LaMattina of the University of Maryland School of Medicine. He's using the approach to build livers. It's the repopulating part that's the most challenging, he adds.
One goal of that process is humanizing pig organs for transplant, by replacing their cells with human ones.
"I believe the future is ... a pig matrix covered with your own cells," says Doris Taylor of the Texas Heart Institute in Houston. She reported creating a rudimentary beating rat heart in 2008 with the cell-replacement technique and is now applying it to a variety of organs.
Ott's lab and the Yale lab of Laura Niklason have used the cell-replacement process to make rat lungs that worked temporarily in those rodents. Now they're thinking bigger, working with pig and human lung scaffolds in the lab. A human lung scaffold, Niklason notes, feels like a handful of Jell-O.
Cell replacement has also worked for kidneys. Ott recently reported that lab-made kidneys in rats didn't perform as well as regular kidneys. But, he said, just a "good enough organ" could get somebody off dialysis. He has just started testing the approach with transplants in pigs.
Ott is also working to grow human cells on human and pig heart scaffolds for study in the laboratory.
There are plenty of challenges with this organ-building approach. One is getting the right cells to build the organ. Cells from the patient's own organ might not be available or usable. So Niklason and others are exploring genetic reprogramming so that, say, blood or skin cells could be turned into appropriate cells for organ-growing.
Others look to stem cells from bone marrow or body fat that could be nudged into becoming the right kinds of cells for particular organs. In the near term, organs might instead be built with donor cells stored in a lab, and the organ recipient would still need anti-rejection drugs.
How long until doctors start testing solid organs in people? Ott hopes to see human studies on some lab-grown organ in five to 10 years. Wagner calls that very optimistic and thinks 15 to 20 years is more realistic. Niklason also forecasts two decades for the first human study of a lung that will work long-term.
But LaMattina figures five to 10 years might be about right for human studies of his specialty, the liver.
"I'm an optimist," he adds. "You have to be an optimist in this job."
Michael Rubinkam in Lewisburg, Pa., and Allen Breed in Winston-Salem, N.C., contributed to this story.
Ott lab:
Atala lab:
Malcolm Ritter can be followed at

Monday, June 17, 2013

Our Father's Day

We had a lovely Father's Day. I made some diced ham and eggs for breakfast and we chatted while watching parts of some free movies in the morning - Hangover II, the original Superman and Spaceballs - before we finally got out of our pajamas around 10:00! We never do that but I swear it felt fantastic.

We drove down the coast in the 1966 Mustang that William and Michael have been building from the frame up. It seemed appropriate to drive it on Father's Day. We had the windows rolled down and music playing loud enough to be heard over the roar of the engine. It was so loud, we didn't hear both of our cell phones as William was trying to phone Michael. Oops.

The dive we usually go to south of town was totally booked for Father's Day celebrations so we wandered down the street to a small grocery store. Inside, there was a huge pizza oven and no crowds. Pizza. Probably the worst thing I can eat but...nothing else. Sooooo, I had a very thin crust piece of pizza. Michael was in heaven and I must say that it was delicious. Perfectly cooked. Not a lot of cheese. While waiting, I noticed that William had left a message on my cell phone. We texted back that he would return the call when we were back in the car.

After the pizza, we made our way back onto the road where Michael stopped to phone William. I noticed that the backdrop would make a fantastic photo, so while they were talking, I ran across the street and took the photos. William was in Philadelphia for a day off before today's concert. He said they had just performed for 25,000 people in New York. All were very pleased with the concerts. While they were talking, William's room service order was being delivered. A hamburger. He said he was going to hang out in hotel room and take it easy as it was going to be difficult to get into any restaurant on Father's Day. Room service? We asked were he was staying. The Ritz! Tough tour! HA! Michael reminded him to leave a good tip!

At home, we sat on the swing in the garden, I watered some of my new plantings, we walked through the yards before watching the Giant's game, Mad Men and bedtime! 

Sunday, June 16, 2013

Happy Father's Day

Happy Father's Day to all the wonderful dads.

My dad showed me how to choose a husband. I wanted someone who loved me as much as he loved my mom. He taught me not to settle for someone who didn't adore me as much as he did. His love kept me on the straight and narrow during my teen years. He was generous with his time, taught us with great humor, had a love of music and adored each of us.

Michael is adored by our son. They have a deep love and respect for each other. As a mom and wife, it is a joy to watch them together.

My life has been blessed by the love and support of the two most important men in my life.

Fathers. So important. So important take a day to celebrate them.

Saturday, June 15, 2013

Father's Day Baking

The steri strips are beginning to loosen and the incision is slowing being revealed. It looks good and hopefully won't be too noticeable of a scar. It is a lot longer than I had expected. The stitches are due to be removed on Friday.

Michael has been wanting my cheesecake. It is a simple cheesecake recipe my friend Lindsey gave to me when the kids were young. There was something about it that was fantastic. I asked him what he wanted to do for Father's Day this Sunday and was so surprised when he replied that he wished for my cheesecake with a cup of coffee in the morning, lunch in the city and just a regular dinner. Since it is a million calories per slice, he has been dreaming about it but not sure he wanted to add the calories to his waistline. Since his new job, he has lost so much weight that he is now ready to enjoy a slice.

We made a deal. I will make the cheesecake but he has to get it out of the house on Monday. Too much temptation for me! We will keep a nice large piece for him to enjoy on Monday night and another to give to mom but the rest is going into his work to share with everyone. Spread around the joy. Spread around the calories!

This morning, the baking with happen, the house will smell delightful and it will sit overnight in the refrigerator to produce the perfect slice for a great dad on Father's Day.

Friday, June 14, 2013

Smart Cookies

Chip sent me an email with some vague memories of our times with Ruthe and Bette. I was able to fill in some blanks for him but I love that he was thinking about her. It became clear to me many years ago that my family is filled with strong women and sensitive men. Lovely men. Non-alpha males. I can personally trace this trend back to my mom's dad. My grandpa. My crazy grandpa. He was 100% Norwegian, raised on one of the largest cattle ranches in South Dakota, had the first car in the state and was one of eight children. They don't make characters like him anymore. He was artistic so his family sent him to the Chicago Art Institute as a teenager. He loved Chicago but missed the life of a cowboy.

He fell hard for my grandmother who was Irish, French and English and one strong cookie. He was crazy in love with her. My mom adored her father and I think chose the same fun, supportive, lively, different man for her husband. He was not an alpha male either. She is one strong cookie. They produced three children. Lee is strong in her own way but married an alpha male. Chip is the sensitive tender soul who married one strong cookie. And me? I guess I am one strong cookie married to the most lovely, sensitive, kind, different, non-alpha male. Our children? Lee's daughter is one strong cookie. William? A very lovely, kind, sensitive, creative, artistic non-alpha male.

I see a trend! I remember hearing stories about my grandpa's parents. When grandpa's three youngest sisters wanted to move off the ranch to a specific house that they found in Minneapolis, their father bought it. He was a very kind, lovely, artistic, brilliant rancher, creative man. I would suspect his wife was a smart cookie.

With Ruthe's passing, I am thinking about all the strong women on both branches of my family tree and the wonderful men who were strong enough to take them on. They were happy together.

Thursday, June 13, 2013

Aunt Ruthe

The phone call came about 5:20 last evening. It was totally unexpected. My cousin, whom I have not seen since 1966, was giving me the news that my aunt had died. Aunt Ruthe. The last of my dad’s twin sisters. The last of my dad‘s siblings. She was 85-years old, was in fantastic health just a year ago and died on June 9th just 3 months after being diagnosed with a very aggressive cancer that had spread throughout her body.

Cancer. It is the first case of it on either side of my family. Sadly, she was so bitterly angry with God for taking her twin with Alzheimer’s about 5 years ago that I believe it caused the cancer. Anger is not a healthy thing to have in a body.

I had written two blog posts about Ruthe and Bette. Photos included. These blogs will explain a lot and they are also a fun read:

After hearing about the internment information, Linda told me that Ruthe had been so thrilled to received $25,000 back in the 60s when their Aunt Daisy died. She wanted her nieces and nephew to feel the same delight so she left my siblings and me $50,000 each. Wow. So unexpected. I am still in shock. To be even remembered is an honor but I am speechless.

I phoned mom, Chip and Lee to share the news of her passing before telling them about her gift to us. Each was stunned. Chip said he was having a hard time processing the information. Lee whooped! Chip, mom and I will be lighting a large candle to light her way to heaven. I hope she is happy to be with her twin as well as her siblings and parents. If you hear a joyful noise from the skies, it is them having a ball together.

Wednesday, June 12, 2013

Busy Days But No Exercise

Yesterday was a lazy day but it just flew by. I think I needed this downtime and am really enjoying it. There was even some time spent reading in the garden. But in the morning, I made the Ancho Macho Chili and it took a good three hours to just braise in the oven. While it was cooking, I ironed seven of Michael's shirts, picked up the house, rearranged some drawers, cleaned the stove top and counters then got dressed sometime after noon.

The chili recipe was from Atkins and our friend Jim has lost quite a bit of weight on that diet so I wanted him to enjoy this delicious delight. Jumping in the car and driving to the other end of the town, I dropped a nice container off for dinner. He phoned last evening and was so touched that I made it for them. I did include a new bottle of Ancho Chili Powder and the recipe with the container of food.

I must need the sleep because I passed out again last night. Since I have not been wearing myself out and not being able to exercise due to the incision, I was worried that I would not be able to sleep. Wrong. Thank goodness. The incision feels much better this morning with less pulling and tenderness.

So today, I am facing an hour drive directly east over a bridge and two mountain passes for lunch with Sue. I am so proud of her for taking her life back, losing 80 pounds and pulling way back on her pain medications. It was her decision to jump back into life instead of staying in bed for the rest of her life. It should be an interesting lunch as I haven't actually seen her in person in years.

Tuesday, June 11, 2013

Staying Home

I am still sore and tender from the incision to remove the skin cancer. It is all so very unexpected. As I am driving an hour to meet the wife of a longtime friend for lunch tomorrow, I am going to stay home today. The stack of Michael's work shirts are waiting patiently for me to iron them into perfection. Also, the Ancho Macho Chili will be made throughout the morning and some of it will be delivered to Jim and Kathy after lunch. A nice but not too active day ahead.

When I heard that the new iOS for Apple is named not after an animal, which is traditional but for our very own Maverick's, it made me smile! Maverick's is an area in the ocean that produces huge waves that brings international attention to our little town for a long board surfing competition every year. Am I surprised? The big secret is that the CEO of Apple lives here on the coast. He doesn't live in a fancy house on the golf course but he lives near the ocean in a nice, regular neighborhood. He has a very fancy car and, as I head to yoga class each week, he is usually leaving home to head to work and we pass each other. I think I will begin to wave to him! So living here on the coast, he is very familiar with Maverick's and I love the connection.

Mom and I went to the county fair yesterday and walked our brains out. She was exhausted but proud of herself that she was able to walk as much as we did. Wayne and Jill's son's hog, Honey Boo Boo was asleep awaiting his spotlight, which is tomorrow when the ribbons will be awarded. We saw fantastic flower arrangements, place settings, pottery, baked goods, amazing quilts and oh so much more. County fairs. America is alive and well.

As the rest of the country is dealing with heat and temperatures in the 100s, we are wet and foggy here on the coast. I hope to see a bit of sun today! I am so grateful that we live in a cool moist climate, which is so much better for my poor lungs.

Monday, June 10, 2013

Cancer, Hogs and a Recipe!

The healing has truly begun. The incision under the steri strips is not pulling and complaining as much. This morning, I am going to take my first shower since the removal of the basil cell carcinoma on my chest last Friday. Mom and I are going to go to the county fair at noon. We love to look at all the home goods and plants in competition for ribbons and bragging rights. Wayne and Jill's son Ian entered his final hog into competition as he is hitting the age limit for 4H. I love what he has named his hogs. His first ever hogs were Mary Kate and Ashley and this final one is Honey Boo Boo. Hilarious.

How did I go from cancer to hogs all in one paragraph?

I did workout at the other rehab yesterday morning, even though I am not allowed to exercise for a week. I walked slowly. I strolled for an hour. It felt good to move though at a much slower pace. The only other thing I did was to water some plants in the back yard. Michael took care of everything else. What a guy!

Joanne, a home care nurse and wound specialist friend in Ohio, noted that I should be eating extra protein, Vitamin C and Zinc to help healing at the cellular level. With that in mind, I am staying home tomorrow to cook my most favorite recipe - Ancho Macho Chili. It is all meat. Five pounds of meat. It makes 10 servings so I am going to take a lot of it to our friend Jim along with the Atkins recipe for Kathy. He has lost a tremendous amount of weight on the Atkins diet but has not tried this chili. It takes about three hours to cook and makes the house smell fantastic. I serve it with cabbage for me and am making mashed potatoes for Michael. It's also delicious with a little fat free sour cream on top and a few shakes of hot sauce! Here is the recipe:

Sunday, June 9, 2013


Today, there will be no photo of the incision that removed the cancer. Under the bandage yesterday, I had forgotten that it was totally covered in steri strips and there was even a little dried blood on one of them. Nothing to see.

I did go back to bed yesterday and slept another four hours. Stunning. So surprising. I did awaken enough to make a simple dinner while Michael cut the lawn for me. I even watched a bit of the Giant's game before falling asleep at 8:00 for another 10 hours. I can't seem to get enough sleep!

It is sore this morning as I must have turned on my side during the night. Tender. Michael wants me to go with him over the hill for a few hours this morning. I would drop him off, stroll on the treadmill (I can't do anything to raise my blood pressure for a week), do a little shopping then meet for lunch together. We also need to swing by the butcher's, Trader Joe's and Safeway as I can't lift the grocery bags for a few more days!

It is wet and foggy here but my sister said it was 111 degrees at their home near Sacramento yesterday. Super hot. I just can't imagine but I am positive they spent a lot of time in their pool! It is in the 70s over the hill and 60s here on the coastside today. So good for my poor lungs.

The Formula 1 race is from Montreal today so we will watch it when we get back this afternoon. Should be a very interesting race.

Saturday, June 8, 2013

Cancer Removal - Part 2

After an easy drive into the city, I found a free parking spot within seconds and arrived to the appointment 45-minutes early. The final remnants of the basil cell carcinoma was to be finally removed from my chest just south of my collarbone. Apparently, my local doctor didn't go deep enough when she removed the rest of the cancer two months ago. The two doctors asked final questions, introduced me to a senior fellow who was going to do the actual supervised removal and we began.

They asked me move my arms and watched how my skin and muscles moved in order to decide where to cut. I ended up with a HUGE, deep incision. It is covered by a large bandage but I will take a photo of the incision for tomorrow's blog as they want it covered for 24 hours. I have a bag of frozen peas sitting on it right now because it is a bit sore.

It was a bigger deal than what I expected. I think the incision is 4-5 inches long. I quit counting the internal and external stitches when it hit thirty. Thankfully, most are internal and will dissolve but they did something interesting. There will be no "tracks" from the stitches when it is healed. It reminded me of a hem stitch I learned in home economics in high school. A slip stitch. There are only a couple of loops on the ends, which looks rather odd but it will leave a less noticeable scar.

The big news is that I am not allowed to exercise for a week. Initially, they said three weeks but I told them I needed to move for my lungs. I cannot do anything that will increase my blood pressure or lift anything that could hurt the tiny internal stitches. No gardening. No food shopping. No nothing. As a joke, I told Michael that I couldn't even lift a pan so we had to go to dinner last night! We had a lovely dinner in town, I have leftovers for today and I am not going to leave the house. This morning, he is going to a major car show about two hours away with Ricky but will be home around 4:00 this afternoon. A few of his cars are in the show.

Me? The sun is shining and I can be found later today on the covered swing in the garden with a good book.

Friday, June 7, 2013

Cancer Begone!

Back into the city today for the final cancer removal. Instead of spending the entire day with mom as our usual Fridays, we are having breakfast together this morning at the sweet little organic cafe on the Avenue before I head to the city at noon. She loves their oatmeal pancakes! Also on the Avenue, is the little chocolate company owned by my former high school teacher who I work out with at the other rehab. The woman who was so lovely to me on the phone while navigating the process of removing the cancer is going to get a box of their chocolates from me today as a thank you.

Michael's sister has arranged a date for a phone call with me after the doctor's appointment later this afternoon. She said she has lots of news. That could be good. That could be bad. Hmmmm.

Sometimes I am reminded of the all rich and famous people who were listed in the roster of the families at the school where I got sick. It was an amazing place to work but it all became very normal. Movie star? No problem. Nice guy, kinda shy. Major movie star? Kinda neurotic. American industrial revolution generational families? One fantastic. One not so much. The stars of the Silicon Valley? Mostly very nice, different, relaxed. The people who started the Bio/Tech industry? Wonderful, funny, brilliant. Movers and shakers? A certain president is going to be at the home of one of those families today. It wasn't until I was gone that it really hit me. It was a place where people met in the parking lot dropping off their kids, they became friends with each other, they sat on each other's Board of Directors, they became household names. A few of these families remain friends of ours today.

What is even more interesting is when I hear what the children of these and all the families are doing in their lives. Recently, I found that one of the kids in my first kindergarten class has her PhD in astrophysics and is teaching at a university. Love that. Another took his father's initial ideas and has grown four successful companies so far. And the former student who I met for lunch on Wednesday is headed for greatness when his journey begins in August towards a PhD in Economics. I smile when I hear of each success. These are the kids who are becoming the leaders in their generation.

Thursday, June 6, 2013

June Gloom

It's called June Gloom around here. June on the coast is foggy and usually wet. The weather is supposed to get warmer by Saturday then the fog is expected to return on Sunday. No sun at all yesterday. Wet and cool this morning.

Mom is coming to the coastside today. We are getting our toes painted, my eyebrows waxed and a lunch of the best fish tacos in the whole world! It is going to be a fun day. While gone, the maid fairies will do their magic and the smell of bleach and a clean house will great me when I get home this afternoon.

William is in Atlanta today. I bet he will visit Porter's Beer Bar for their Shrimp and Grits and swing by Gladys Knight's Chicken and Waffles for the very best in the country. It is hard touring in the south as the food is so fantastic and so cheap it always costs him at least 10 pounds, which he loses after he gets home.

I hope the sun is shining wherever you are. Think of us on the coast, shrouded in fog but so happy to breathe the cool, moist, clean air.

Wednesday, June 5, 2013

More Energy

I think I am feeling better. I found myself up and moving around last evening instead of just resting. A tomato plant needed to be replanted, a flower bed needed water, I printed some stuff I needed, cleaned a drawer in the kitchen...I had extra energy at the end of the day. A rare event lately.

Michael didn't get home until late so I stayed up with him until 10:00. That is very late for me but I slept through the night and got eight hours of sleep. In two hours, I leave for the yoga hell class then the fun will begin. I am meeting a former student for lunch in Palo Alto. It will be a mad dash to change and hit the road to make our lunch on time. I am so looking forward to seeing him.

We got a new person in the rehab class yesterday. He and I were raised in the same area at the same time and he kept saying that I looked familiar. After a chat, we discovered that we indeed know some people in common. Very nice man and will fit into the class just fine.

The ILD Support Group meeting next Tuesday will feature Dr. Kerri Johannson, a visiting fellow from the University of Calgary, who will talk to us about her area of interest - Interstitial Lung Disease and the Environment. Since I have an environmental lung disease, I really don't want to miss this meeting.

I hope my energy level continues to improve.

Tuesday, June 4, 2013

Cancer Removal - Part 1

After working out at the other rehab yesterday, mom and I chatted, laughed a lot then went to lunch before I drove into the city. I gave myself two hours to drive there, find a parking spot on the street near the hospital and headed north with a plan. I was going to go my usual route when I realized that the quicker route, which usually had very heavy traffic trying to get onto the Bay Bridge, actually was very light and I made a last minute decision to go that way instead.

From mom's house to parking in a difficult-to-find parking space on the street, I made it in 45 minutes. I was floored. So, I walked to the Starbucks across the street from the doctor's office, enjoyed a decaf Americano and watched the parade of people walking by. Then I walked a couple of blocks just to move a bit before heading to the appointment 45-minutes early.

A woman named Adeline had helped me through the very difficult process of getting an appointment. We finally met in person, hugged and I was able to thanked her for all of her help. A nurse was watching, hauled me into a examining room where I would be more comfortable and I was seen by the doctor right on time. I was the final appointment of the day so he was not able to just cut out the final vestiges of the cancer during the appointment. He told me that their pathologists downgraded it to the least aggressive of all Basil Cell Carcinomas and that the margins around it had been initially removed by the local doctor but she did not cut deep enough. He said it was going to be a 2-inch incision and was worried how I would feel about a scar. I laughed and said, "Scar? I'm going to have lung transplants!" Then I asked if he could make the incision in the shape of a heart! That made him laugh.

So, I am going back to see him on Friday to have it finally removed. I just want it gone.