Only four years later

Only four years later
This is Jon in April 2010

Saturday, June 26, 2010

FYI / Just an interesting article I came across

By Amanda Gardner
HealthDay Reporter
THURSDAY, June 24 (HealthDay News) -- Scientists have succeeded in fashioning a new, healthy lung out of the structural remains of an old one in rats.
The researchers, reporting in the June 25 issue ofScience, hope one day to replicate the feat in humans, giving hope to the millions of people withcystic fibrosisemphysemachronic obstructive pulmonary disease (COPD) and perhaps even lung cancer.
But that could take as long as 20 or 25 years to accomplish, warned study author Thomas Petersen, a postdoctoral associate at Yale University.
"What we're talking about is still science fiction, although we're a lot closer now," added Dr. Neil Schachter, a professor of pulmonary medicine at Mount Sinai Medical Center in New York City.
Petersen and his colleagues started with a normal rat lung, then treated it chemically to remove all the cells, a process known as decellularization. This left them with just the lung scaffolding, including the all-important airways and blood network.
"We retained the overall structure of the lung but it was completely free of all cells, as well as components that would be detected by the body as foreign, meaning that the scaffold would not be rejected were you to do a transplant," Petersen explained.
This was the most challenging part of the experiment. "The 3-D structure of a lung is quite complex and it's not something that you can easily make," Petersen explained.
The team then seeded the scaffold with blood vessel cells and airway cells, and then grew the lungs in a bioreactor for about a week. During the culture period, the lungs were made to "breathe" mechanically.
With the newly engineered lung tissue, the group was able to perform four transplants of a left lung back into rats.
"The transplants were maintained for up to two hours and they were functioning in terms of pulling in oxygen and getting rid of carbon dioxide," he said. "The lungs were exchanging oxygen."
Researchers now need to do more experiments in rats, refining the rebuilt lung and extending the duration of the transplant.
"The lungs we have now perform quite well, but they're not perfect," Petersen said.
The process would be much the same in humans, starting with replicating the scaffolding, then repopulating it with new cells.
"The more challenging thing will be to identify the right cells and this will probably involve using stem cells derived from a particular patient," Petersen said.
A separate group of researchers also reporting in Science were able to create an artificial "lung on a chip," basically a miniature model of a working human lung made from cultured human cells from lung and blood vessels.
The manufactured "lung" is about the size of a coin or a pencil eraser.
"We basically used microfabrication techniques that were developed for the computer microchip industry," explained study senior author Dr. Don Ingber, founding director of the Wyss Institute for Biologically Inspired Engineering at Harvard University. These were combined with tissue engineering processes.
"They have constituted in a system which is quite elaborate," Schachter said, adding that one aspect of the model seemed particularly useful: the ability to study the interactions of inhaled toxins much more easily than could be done in existing systems.
Ingber and his group are hoping the lung on a chip can replace animal models as the basis for pharmaceutical research. Animal models, Ingber pointed out, are incredibly costly and take a long time to complete.
On top of that, he said, "animals often don't predict what happens in humans. Our motivation was 'Can we shortcut all that.'"
The group is also working towards developing a "human on a chip," which Ingber said is essentially "making multiple organ-on-chips [e.g., lung, heart, gut, liver, kidney, bone marrow] and linking them together by engineered vascular networks."
MedicalNewsCopyright © 2010 HealthDay. All rights reserved.

Thursday, June 24, 2010

Day 118

     Finally, I think I'm turning the corner. It has been 3 good days. Energy level is getting better, the right side is responding better and getting stronger. I've reached, and sometimes exceeded, my weight goal of 175 lbs. Now I see light at the end of the tunnel. It's been a long time coming.
    We had a great weekend in Orlando with my sister and her husband, Thanks. Stayed at the hotel all weekend and rested poolside, etc. I even got permission to go swimming from the doctor. They had a lazy river that I help live up to it's name. We ate a lot! It was grand opening of Harry Potter at Universal, so Orlando and the hotel was very crowded.
    Before I left Friday, I went to have lab work done at the hospital and true to form had meds changed again. Because of the antibiotics for the fungus my Prograf (anti-rejection medicine) level was sky high, so I was told to stop taking the Prograf for 2 days and come in for lab work on Monday. Well Monday's results were high still, so I was to stop taking Prograf for another 2 days and then begin 1mg per day. That's down from 8mg or 8 pills per day. The Prograf make you real jittery and causes tremors and you get lightheaded. Back for labs on Monday.
     It's hot, mid 90's, but no oil on the beaches. We are maintaining.
Thanks for listening.

Thursday, June 17, 2010

Day 111

Hi. Well, I guess I'm not invincible like I thought. Had some swelling all along the incision, so I called my Transplant Coordinator who called the doctor who said come in Monday. So I went to the hospital Monday and he said that the wound was fine and that I probably tore scar tissue inside when I carried the 2 cases of water into the house from the car. Then he proceeds to tell me that they learned from the last biopsy that I had a fungus growing in my lungs. He didn't seem really concerned and he put me on a 90 day antibiotic treatment. I have to go back tomorrow to have blood drawn for lab work because this antibiotic is tough on the kidneys. They have to reduce the anti-rejection medicine Prograf, because it is also tough on the kidneys. Wow, what a balancing act. Now you know something like this wreaks havoc with your mind. I feel good, albeit still low energy. I have a little bit of a cough, but feeling good. Sleep is an issue once more, can't get more than 2 hours of sleep before I wake up and start thinking.
   My Dad came down this week. We had lunch yesterday. He looks good. My sister, Chris and her husband Andy invited us to meet them in Orlando for the weekend. Chris has had health issues recently so I haven't seen her for quite some time. Thank God she seems to be back to good health. It should be a great weekend. Oh, we're also going to see Andy's brother Matt and his wife Joanne. Matt and I actually went to high school together and started a fence company, (short lived), while in high school.
  I asked the doctor when am I really going to see a vast improvement in my ability to do things or is this as good as it gets? Remember they said at 3 months I would feel 20 years younger. Didn't happen, I feel good and I don't have to use oxygen, but not 20 years younger. Anyway, he said because I had the stroke, my rehab has been slowed. He said I will definitely see a great improvement at 6 months and then even more at 1 year. I hope so. This is really frustrating. Everything I do is a struggle. I know it could be a lot worse!
   Enough boo hooing, I am really thankful for everything. Every once in a while the mind goes to a dark place. Thanks to everyone for their love and support. Thanks to everyone who ordered cookbooks. Especially, thanks to everyone for their donations.
   Now, go out and do something good for someone today.

Thursday, June 10, 2010

Day 104

           I know it hasn't been a week since my last post. Good news, I got a call with results from Tuesday's biopsy and clinic. Biopsy came back negative. No rejection and no infection. Lab work came back great all levels are good and kidney function is good. They also cut back on some of  my steroids from 20 mg per day to 15 mg per day. The goal is by the end of the first year to have these steroids down to 5 mg per day. I also asked if they thought that I would be able to stop the insulin injections at some point. The answer was an educated yes. Oh, and now clinic will be once a month instead of every two weeks. Yeah!
         I started walking again, after getting scolded at the hospital on Tuesday. Somewhere around 2 miles per day. I'm over the 7 to 10 mile walks. Remember it's mid 90 degrees here.
        These are the reports that I like to hear. It shows real progress and it lifts the spirits. Have a great day.

Tuesday, June 8, 2010

Day 102

     Had my lung biopsy this morning. Had to be at the hospital at 6 a.m., and Lovely Linda had to drive me. She also picked me up afterwards at 12:00. This was a rough procedure. Not sure why, but while waiting for Linda I felt like I was going to pass out and felt nausea as well. Came home and slept until 4:30. Feeling better. I was told that I need to exercise more, that is the only way to build the stamina. Okay, I already knew that but I guess I've been lazy. Going to look into a low cost gym in my area.
     Thanks to Linda's push,  I've begun trying to give back in my own small way for this gift of life. I am getting re-involved in a website called Transplant Buddies. When I was searching for information, this was a great resource. It is a web site that people that have had transplants can share their stories. It is also an area where people who are diagnosed with ailments and may be in need of a transplant can go and ask questions and get more information about the process. That was something that I felt was needed, a place to get specific information. Not just medical information from doctors and hospitals, but actually experience information from someone who has gone through it. It is a scary prospect learning that the only way to get back some quality of life and continue living is to have an organ transplant. Who'd a thunk it? Something like this that usually happens to the other guy actually is happening to me.
    I've been discussing moving with Linda. It is too much to try and keep up this house and we need to cut expenses, so we are thinking condo. We have to stay close to here for Lin's job, which enables us to get health insurance albeit expensive. I also need to stay close to the hospital, which seems like my second home. I visit every 2 weeks. Anyway, we'll see.
    Most importantly, I'm feeling good. Wow, can you believe no complaints from me? I've got a lot of ideas in my head about other ways to continue this journey and to contribute to society. Don't just go through life, let's participate. There is a lot of anger out there, especially now with the economy, the Gulf crisis and other world events. Let's start showing more compassion in our little world and watch it spread. It could turn into an epidemic, a good one. Take care.

Wednesday, June 2, 2010

Day 96

    Passed the 3 month point. Feeling good. Just disappointed with the level of stamina, or lack of stamina. Still weak on the right side, but overall I feel good. My appetite is good, maybe too good. I've gained another 3 pounds. Better start slowing down. With the energy level low, I don't burn as many calories as I need to maintain a low weight. Trying to maintain at 175 lbs, I am at 174.
    Linda and I went on a road trip to Kentucky to visit our good friends Mike and Gloria. They just transferred to Louisville from Portland Oregon. Beautiful house, beautiful area and such good friends. Thanks for a great time. We drove up on Friday and returned Tuesday. Good trip, except it took two hours to go through Atlanta. The trip turned into a 15 hour ordeal. Fortunately we broke it up into 2 days.
   It's hot here in Florida and that makes it more difficult to get out and do things. Especially in my condition, I have to cover up and protect myself from the sun. Hat, long sleeves, long pants and sunglasses are usually the dress to do outside tasks. My immune system is compromised by the medications that I am taking. Remember the doctor said that it is not if I will get skin cancer, it is when will I get skin cancer. Boy, if that's not a pleasant thought. Speaking of doctors, I have a lung biopsy on Tuesday the 8th. Wish me luck.
   It seems that every week I am ordering more medicines, what a mess. Thanks to all for their support, it really helps offset some of the medical expenses. Hopefully at some point, I can repay your kind generosity.
  At some point in the near future I am going to explain, in detail, the psychological impact of this disease, the transplant and post transplant. You don't know how many times you think about death throughout the process. I mean an intimate look at your mortality, and whether this is your time to go or not. I never saw the white light or anything, but I felt sure that I couldn't take anymore. But that is for another day.
   An interesting perspective that I heard this weekend is, when you are beginning to get frustrated by someone, step back and look at them from another angle. Not physically! Look at them as a neighbor or mother or brother, not as a salesperson or work mate. Try to understand there perspective.