Angels For Amber » lung tranplant

Agenda for Duke Medical Students

amber — Sun, 25 Apr 2010 17:06:05 +0000

Duke Medical School Lecture Agenda
Monday April 26, 2010

1. Introduce myself

2. CF Facts
• CF is the 2nd most common inherited childhood onset diseases in the US.
• Approximately 30,000, w/ 1,000 new cases per year
• CF affects mostly Caucasians, and seen least in Asians
• 70% of patients are diagnosed by 2yrs of age, although I have two friends, one diagnosed at 17yrs old and another at 40 years of age
• What does cystic fibrosis do to the lungs?
People with cystic fibrosis have airway secretions that are drier, stickier, and harder to clear than normal secretions. This thick mucus can block the bronchial tubes in the lungs, and can lead to gradual blockage, infection, and lung damage. The thick, sticky mucus also can block tubes, or ducts, in your pancreas. As a result, the digestive enzymes that your pancreas makes can’t reach your small intestine. These enzymes help break down the food that you eat. Without them, your intestines can’t fully absorb fats and proteins. This can cause vitamin deficiency and malnutrition because nutrients leave your body unused. It also can cause bulky stools, intestinal gas, a swollen belly from severe constipation, and pain or discomfort.
• Prognosis: The median age for survival back in 1955 was 5, now it has risen to about 38 years of age
• RH Factors (symtomless): You must have 2 carriers or one with the disease itself: -25% chance will have CF -50% will carry the gene -25%- will have nothing
• The specific gene for CF was identified (through birth) in 1989. Since then doctors and researchers have been working on clinical trails to cure this disease. Inspire Pharmaceuticals in RTP, NC is in Phase 111 of two drugs to fight CF.
• www.CFF.org

3. Transplant Facts
• Kidneys are the most commonly needed organ
• Approximately 1700 lung transplants in 2009 (www.UNOS.com) compared to 1150 in 2004.
• Two donation types: cadaver and living donation
• Waitlist based on medical condition changed from wait-time on list in Spring of 2005
• Lung transplant needed for many diseases: CF, Pulmonary Fibrosis, COPD, Emphysema, Idiopathic Pulmonary Fibrosis, Primary Pulmonary Hypertension, and Alpha-1
• www.transplantliving.org

4. Share my story
5. Lung Transplant foundation www.luntrasnplantfoundation.org
• “Lungapalooza” September 19th 2-5pm @ Sarah Duke Gardens
6. Appointed questions from Dr. Scott Palmer
7. Questions from students

Holiday Happenings

amber — Wed, 30 Dec 2009 01:52:10 +0000

It has been a few weeks since my last blog, so thought I would share with you the happenings of the holidays. It started on our (Leah, Travis, Rod, myself, and Hank, the 145lb Great Dane) drive to Boston from NC. We left Durham around 5pm, just after the snow began to fall. The usual four hour drive to DC took us 16+ hours. The snow fell so heavy that people just pulled off the freeway and abandon their cars and SUVs. After literally no movement for three hours due to a jack-knifed tractor trailer we continued our journey north. Around 9am we hit Jersey where the snow began to lighten up. Just past Philadelphia we were ahead of the storm. We finally rolled into my mom’s house at 4pm, the following day, exactly 23 hours from when we left. The trip was so long, but I must admit I didn’t drive any and probably slept at least 60% of the time. Thanks Rod and Leah for getting us home safe!

Christmas Eve was a quite time here around the Berry household. My mom and I met a few dear friends for dinner. Of course we missed services again this year. Christmas Day I cooked a full dinner for 12ppl and we opened gifts and shared in the joy of excitement and surprise. Later that evening my sister, her fiancée, and I headed to my father’s for another present exchange and a late night snack.

Then came my 30th birthday, December 27th, I can’t even believe it! The big 3-0!! The doctors told my parents I probably would never make it to my teens and now I am three decades old. My Aunt Susie surprised me with a visit too.

Travis is headed to the Rose Bowl on New Years Day in California. He has been talking about this since Oregon beat Oregon State in the Civil War around Thanksgiving. Go Ducks!

The weather here in Boston is freezing, and I mean like 13 degrees with a -5 wind chill factor. Since my lung transplants I am very sensitive to the cold, plus I think I climatized to the South real quickly. I am having a gynecological procedure at Mass General tomorrow morning. Hope for a quick recovery and fly home to NC in mid-January. I really miss the kids I sit for, both Elle and Griffin. Once I get home I will have another bronchoscopy, PFTs, and x-ray to see if the high dose steroids I took in early December worked to cure the rejection. If not I will be admitted to Duke for a few days for a heavy duty anti-rejection medication.

Happy Birthday December Babies: Bethany Kim, James, Marla, Jan, Sarah, Kellie, Dottie, Ashley, and Lindsey!

I am wishing everyone a happy, peaceful, and healthy New Year!

~Inhale. Exhale. Breathe.~

Rejection Yet Again

amber — Sun, 13 Dec 2009 00:45:44 +0000

This past Tuesday I received a phone call from my lung transplant coordinator, Tracie. She was calling to inform me of my previous week’s bronchoscopy results. They weren’t the words I was expecting to hear, “REJECTION again.” As the pathologists’ reports indicate, it is A1 acute rejection. This summer it was A2, a more serious stage of rejection. Tracie and Dr. Zaas have decided to order me three days of solumederol (by IV) and then a taper down dose of prednisone. I should be ending by late next week. My sister, her fiancée Rod, and my boyfriend Travis are driving up to New England on the 18th where we will stay through the holidays and my 30th birthday! I have a gynological surgery scheduled for January 4th at Mass General Hospital. I hope to be back to North Carolina by the middle of January. I have another bronch scheduled for the 21st. This will indicate if further measures need to be taken to treat the rejection. Dr. Zaas told me yesterday at clinic that Campath, (drug I received during my second transplant) will need to be used again. The down side to this “big gun” medication that it will completely wipe out my immune system again, so I would be on IV Gancyclovir for at least six months. I would remain on the Procrit and Neupogen shots weekly for another year and be highly susceptible to colds, bacteria, and viruses. So let’s cross our fingers that this first round of steroids works!

~Inhale.~Exhale.~Breathe.~

Please continue your prayers for my friend Jana. Also I am remembering my friend Deb Hamlin who passed away this week from transplant complications, my sympathies to her family. To the family of Joey Velucci, keep strong and I am thinking of you all.