A BREATH OF FRESH AIR: First Setback

Friday, September 12, 2008

First Setback

As anyone with a lung transplant will tell you, you fear that first chest cold or set back of any kind. Mine came just the last couple of weeks. Dr. Hodges put me on two antibiotics for 2 weeks, but my pft levels were still down somewhat. With that in mind, he scheduled 3 infusions of steroids, a unit of blood for anemia, and a bronch. The bronch did reveal congestion with several blocked bronchials. Feel much better now, but putting up with the swollen legs from heavy steroids. Anyway, it is great to be exercising again and not coughing.

1 comment:

Marty Zelei said...: Nice blog, it is so very informative about everything involved. You are in our thought and prayers. Your grandkids are cute.
Monica and Marty; September 12, 2008 at 8:22 PM

THE TRANSPLANT PROCESS

On February 22nd, I received a call from the transplant coordinator telling me that I might have new lungs. I had about an hour to get to the hospital so that they could get me prepared. Meanwhile, one of the two surgeons was out getting the lungs. I was warned that it might be a false run--depending on the condition of the lungs. The lungs were great and the surgery took place. The surgery was difficult because my lungs were in such bad condition that they literally had to be scraped from the wall of the chest. This caused excessive bleeding, but the two surgeons finished in 6 hours. I awoke three days later breathing freely.

FIRST REJECTION

I had heard all along to expect a rejection within the first year. My year passed and no rejection, must be lucky. At 15 months out, I started feeling a little weak, but otherwise fine. My PFT's were down a little, but xrays and lung sounds were great. Within several days, the team detected excess acid in my blood test and also some antibodies which probably were produced to fight a virus I may have had at some time recently. I was put in the hospital and given a series of 5 plasma cleaning treatments. Too technical for me to explain. I was released 6 days later having lost 15 pounds (mostly water). Naturally, I was very weak. Returned to the hospital 5 days later, because my PFT's were down substantially and very weak. Right now I am gaining strength, my oxygen levels are in the 90's, xrays appear clear, but lung capacity has been reduced. What I have learned from this is to pay close attention to you body even though all tests look good. Be the first responder in your health. Do not let anything slide.

VENTURING OUT

After living with lung disease for so many years, it became very difficult to venture away from the security of home. Even after having new lungs it can be difficult to venture out for some. I have been very conservative and probably have not done some of the things which would have been fun in fear of having a "problem". Gradually, we ventured out to do fun things around our secure environment. Going to California broke the ice for us. Visiting Nancy's son and family in California gave me the chance to get away. What a blast! Visiting a unique city, Ojhi, a winery, and best of all, the wonderful beach. The beach was so full of life with the sounds of rushing waves, beautiful rocks rising out of the ocean, sounds of kids and adults screaming with joy, and the feel of cool sand beneath our feet. This experience had not been a part of my life prior to my transplant. Guess what, the Lungs work well even outside my security area.

LUNG TRANSPLANT SUPPORT ORGANIZATION

Carl and Michele are the brain childs behind the LTSO. They recognized the needs of transplant recipients as they go through the process from testing through recuperation. As members of this non-profit organization we strive to: educate and promote DONOR AWARENESS, educate and support transplant recipients as needed throughout the transplant process, provide limited financial assistance for such items as out-of-pocket co-pay prescriiption costs, providing gas cards, and assisting in the cost of housing expenses during the transplant.

We will be involved in speaking to groups, talking to individuals about out experience, and advising where they can go to seek more information. Getting started financially will involve the selling of T-Shirts, coins, and donations. We have extablished non-profit status, so donations are tax deductible.

Anyone wishing information or assistance from the LTSO please email me at stjosephs13@yahoo.com

STANDING UP FOR WHAT IS RIGHT

In dealing with the enormous deficit in AZ, the legislature was considering cutting out lung transplants from AHCCCS. This would deprive the poor and uninsured to a chance at living a normal level. LTSO sent several members to the meeting garbed in their black gotmask.org shirts. Our presence helped convince the committee not to seek this way of saving funds. Many spoke of the extreme circumstances which would prevail. Carl, our President, spoke and introduced Kelly who was transplanted at the age of 3 months, and is now a ten year old, vibrant young lady. It does pay to be heard.

GIVING BACK through LTSO

We struggle to get our Lung Transplant Support Organization off the ground so that we can serve pretransplants in their quest of a new life. As we become more active, past and future patients will realize the benefits of our experiences and assistance in making their stay, if necessary, less strenuous for all.

As individuals, nothing feels as great as working with someone going through the process of getting a lung transplant and receiving a phone call telling that lungs have been received and all is well. We will work with patients and our transplant team to be there to fight to see that issues that may threaten the program or personal issues are dealt with to the best of our ability.

PSYCHIATRIST INFORMS TRANSPLANT GROUP

Our support group had the privilege of listening to Saint Joseph's psychiatrist about specific problems that transplant patients and/or persons with lung disabilities live with. One of the major points of interest was how the lack of oxygen can affect the brain. Most notice a loss of memory, in particular short-term memory. He also emphasized how many transplants suffer from depression. Generally, it is caused by not reaching self-imposed goals and becoming depressed. There was a lot of information about what takes place in the hospital where a psychiatrist should be part of the transplant team. There was so much information provided that I can't possibly cover it here. My advice would be for anyone who has severe breathing difficulties, for whatever reason, to become knowledgeable of the psychological problems which might occur. I for one thought I was loosing my mind at times when my brain would not be receiving enough oxygen.

EXERCISE FOR LIFE

Prior to my transplant my doctors told me that the most important thing I could do was to exercise and get as strong as possible. I was very thin and my muscles had atrophied. From the time I was out of ICU, the staff was working we me to build my strength. I had to be able to stand up on my own and walk with a walker. For about 6 months, I went to rehab 2 days a week and worked out at home. Each day things got a little better. I am now exercising at home daily in the pool and at our clubhouse weight room. Since the transplant, I have never been short of breath. The only thing holding me back is the strength in my lower body, but that is changing rapidly.

INSURANCE COVERAGE -WHAT YOU SHOULD KNOW

When my pulmonologist informed me that I needed a transplant in order to live, I was elated to hear that my insurance accepted the hospital in which the transplant was to be done. My elation was short-lived. The insurance company would not allow my chosen hospital to perform the procedure because they were not medicare approved; even though they were a highly recognized group who had come from California hospitals to set up this program. I was told to go to either California or Colorado.

The traveling back and forth to California, plus the long wait would have been too much for me to survive. To make a long story short, I persistently challenged the insurance company's denials and wrote and called every influential person I could think of. It eventually (3 Months) came down to our Governor's office calling the Dept of Insurance and telling them to take a second look. The Dept. of Insurance informed the insurance company that they had been overturned. Since then 2 others have challenged this same insurance company and won their right to use this same hospital. The moral of the story is to stay positive, be persistent, and good things will happen. If you have any questions on this topic, email me at azgar@aol.com

LISTEN TO YOUR BODY

What seemed like a simple headcold quickly turned nasty. I did not really feel ill, just hoarse and congestion. It graduated into general overall weakness. I contacted my transplant team after a couple of days and through examination determined that I had contacted RSV. RSV is especially dangerous to young children and persons with suppressed immune systems. I was admitted to the hospital and put on inhaled ribivirin, which is pretty scary stuff. I was required to be isolated and anyone entering had to be dressed in protective gear. Along with the ribivirin was an assortment of antibiotics and respiratory therapy. It is very important that if you are imunosuppressed with a lung transplant that you read your body carefully. When you are not 100%, be sure to make your team aware of it so that they can get a jump on whatever may be attacking your system. This virus is especially dangerous during the months of December through March.

THE ALL-IMPORTANT CAREGIVER (S)

My wife, Nancy, has to be recognized as a major factor in my successful transplant. She made certain that I went to rehab prior to surgery to get myself in as good of condition as possible. During the hospital stay, she was always there by my side making sure that I did what I was told to do. Actually, Nancy's job as a caregiver long before I even considered having a lung transplant. Because of my limitations, she had to assume responsibility for many of the things I used to do.

Bonnie (picture) is my sister-in-law. She came out soon after surgery and was a tremendous help to Nancy. They are very close and between the two of them, they made sure I was progressing. Bonnie, came to be know as "Sarge".

BIRTHDAY'S/ANNIVERSARYS

It's a milestone. All of us look forward to our 1st birthday. 365 days of beautiful experiences since our transplant date. It is such a wonderful experience to get together with friends and fellow transplants. All have provided so much support during this first year and we have become like family. Michele is such a wonderful lady. She has always been first on the scene when anyone needs support. She and Carl started the Lung Transplant Support Organization. We are a struggling non profit organization with a simple goal of helping anyone who needs assistance during the transplant process or prior to it. We love to provide support by telling our story to help others understand what is involved with the transplant.

ORGAN DONATION FACT SHEET

You can register to be a donor at www.DonateLifeAZ.org
It's a federal crime to buy or sell organs and tissues.
There is no cost to the estate or family for donation.
Almost anyone can be a donor despite age or illness.
No major religions oppose donation.
Donation does not disfigure the body or change the way a person appears.
EVERY effort is made to save the person's life before donation.
Race, gender, income, or celebrity status is never considered in determining who receives the organs.
One person can save 8 lives by donating organs.
More than 103,000 people in the U.S. are waiting for a lifesaving transplant. 1800 live in AZ

A BREATH OF FRESH AIR

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Friday, September 12, 2008

First Setback

1 comment:

TRANSPLANT #13

THE TRANSPLANT PROCESS

FIRST REJECTION

MY FIRST HIKE

VENTURING OUT

CALIFORNIA BEAUTIES plusTHE BEACH

BEACHTIME IN CALIFORNIA

OAK CREEK RANCH WINERY

LAURA'S RUN