Waste Of A Precious Gift

Something has been bothering me since my biopsy last Wednesday. I went for a Biopsy to check to see if I was still in rejection and I got a ZERO! After my biopsy I had a appointment with my Transplant Doctor and I met a woman in the waiting room. She asked me how far out I was and I told her 10 months. She had a Kidney and Heart transplant 18 years ago. I was thrilled to hear she had gone that long with her organs. She told us she now needs a new Kidney and a new Heart. She explained that she had become very depressed and due to medicine she has gone into rejection. I said oh wow your anti rejection meds made you reject? No, she said… I got so depressed I STOPPED taking my anti-rejection medications for a year. WHAT???????? I was glad my mask was on because my mouth dropped open. I wished her good luck but I was upset and mad all at the same time. I don’t understand how someone can waste this 2nd chance at life like that. This transplant journey is not a easy one. It comes with a lot of pain, sorrow, trials and struggles. I understand that, I know how hard it is. I also get very sad at times, all transplant patients do. You have to push through that and see the silver lining.. YOU ARE ALIVE!!!! Some stranger that never knew me registered as a organ donor, she then passed away and due to her selfless gift I received her heart and a 2nd chance at life. I look in the mirror every day and thank my donor and I live to honor her. I don’t understand how someone could not take their medicines for a year and not feel guilty. How could you not think of your donor? How could you not think of the pain their family went through loosing a loved one? How could you not think of the pain you were in before transplant? How could you not think of your family and friends and all they have gone through with you along this journey? It take a selfish person to waste a gift like this. I also don’t understand after she is the reason she went into rejection and now needs new organs WHY they would give them to her. I had to go through a lot of tests and I had to have a psych evaluation. They want to make sure you aren’t going to be risky or essentially WASTE the organ. Well she did and now she is going to get 2 more? Today, more than 3,700 patients listed at Florida transplant centers await life-saving organ transplants. What if 1 of those 3,700 don’t get their organ due to someone being so dangerous with their life. My heart is heavy with this. I don’t take my transplant, my donor or this new life for granted! I pray that if it is God’s will for this woman to receive a 3rd chance at life she takes it and doesn’t just throw it away!!!!

Grade 3 Rejection

I realized a lot has been going on and it's been awhile since I have updated on here. July 15 I will be 10 months out from transplant. Life has been going pretty good till recently. I have been getting zeros, 1a and 1b results from my biopsies. 2 months ago I received a grade 2 rejection which they consider grey scale. They changed 1 of my anti-rejection medications from Neorol to Prograf and that seemed to do the trick, the next month I got a big fat ZERO. For the last 2 months I have been feeling GREAT!!!! I have lost 9lbs in a month and was getting back to the swing of feeling normal again and BAM! I went for a biopsy Wednesday, July 6 and found out that day at 5pm that I am in Rejection, Grade 3. They think they brought me down too fast from the prednisone. They have raised me up to 100mg and I will be on a very high dosage for the next 9 days and then come down slowly. I am going back to Shands July 27th to have another biopsy as well as a artery check, heart squeeze and a echo. If I am still in rejection.... well I don't really know what the plan will be, I am too afraid to ask. I am just very shocked that I am in grade 3 rejection because I have been feeling so great. I can't help but go back to this same time last year!!! A week after 4th of July I was admitted into Shands and came home a week later with a PICC line and was on IV medication to get me ready for a heart. I am not ready to go down that road again so soon! I am a fighter and I am going to do whatever it takes to keep this new heart and keep it healthy. I have booked a cruise for September 10-15, it's for Me and my mom to go on and celebrate my 1 year anniversary of my heart transplant. I pray nothing will come in the way of us going.

This week a friend passed away from complications caused by a heart attack, he was young. I am saddened for his family and friends. I also can't help but think of everything I have been through and continue to go through with my heart. I ask myself when is enough..enough? How much can one person handle in a lifetime? I know God never gives us more then we can handle...Well he must think I can handle A LOT!!! I am a very strong person because I have to be! I just sometimes wish I didn't have to worry about my heart, rejection, other organ rejection, medications, etc. But, this is the life I was dealt and I am trying to make the best of it.

I know my Donor Angel is my biggest cheerleader and she is looking down on me and she will help me through these hard times! I wake up everyday and thank her for giving me a 2nd chance at life! With her love, my family and friends behind me I will get through this and everything else that comes along! God has a plan for me to help others going through CHD's and Heart Transplants.

Prayers are greatly appreciated, they have worked all my life for me!!! Thank you all for the support and love!!!

Shands heart transplant MILESTONE REMINDS BRISTOL RESIDENT OF LIFE-SAVING GIFT

I was featured in the 25th Shands Heart Transplant Progrma's Press Release:


March 3, 2011
Contact: Lindsey Robertson, Media Relations Coordinator

Shands Marketing & Public Relations
(352) 265-0373 or (800) 535-0373

Shands e-newsroom: http://shands.org/news/

Shands heart transplant MILESTONE REMINDS BRISTOL RESIDENT OF LIFE-SAVING GIFT
UF physicians and transplant staff reflect on 25th anniversary
If you would like to attend the 25th anniversary event referenced below at 6:30 p.m. March 4 at the Hilton at UF in Gainesville, please RSVP by 4 p.m. Friday to 352-265-0373.


GAINESVILLE, Fla. (March 3, 2011) – Heart problems have been a part of 28-year-old Bristol resident Ramsey Brown’s life since she was diagnosed at 2 weeks old with cardiomyopathy, a weakening of the heart muscle. Brown had two open-heart surgeries before receiving a new heart last September at Shands at the University of Florida.


UF College of Medicine cardiologists and heart transplant surgeons have given 829 patients “the gift of life” since the adult and pediatric heart transplant programs began at Shands in 1985 and 1986, respectively. This month the teams will honor donor families and recipients as the Shands Heart Transplant Program at UF marks its 25th anniversary.



After her transplant, Brown experienced a quick recovery. Staff encouraged her to get out of bed and onto the treadmill within five days of her surgery.

Brown has also formed close relationships with her UF physicians and Shands nurses and transplant team members.



“If anything happens, Shands at UF is the first place I want to go or call,” Brown said. “The doctors and staff are very wonderful, very personal. They really get to know you.”



The Shands Heart Transplant Program at UF team was the first in the state to perform all thoracic solid-organ transplants – adult, pediatric and infant heart transplants as well as combined heart-lung transplants. To date, UF transplant surgeons have performed 676 adult and 153 pediatric heart transplants.



“This 25th anniversary is a very special time for us,” said Juan M. Aranda, Jr., M.D., F.A.C.C., UF College of Medicine professor of medicine and Shands Heart Transplant Program at UF medical director. “We’re reflecting on the achievements of the program and the excellent outcomes we’ve achieved. We especially honor our donor families and transplant recipients.”



The transplant team and recipient patients will gather March 4 for a reception and dinner at the Hilton at UF in Gainesville. Aranda, who has been with the program since 1997, expects about 300 to 400 heart transplant recipients to attend the reunion. Sen. Steve Oelrich, whose son Nick’s organs and tissue were donated to save or enhance the lives of 108 people in 1995, will speak at the event.



“From our UF surgeons and cardiologists, to the excellent Shands transplant and nursing teams, we have excellent collaboration to ensure good patient outcomes,” Aranda said. “It’s an honor to be able to care for patients all across the state and into the southeast.”



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For more information:

http://www.shands.org/hospitals/uf/service/transplant/heart/transplantheart.asp

http://www.shands.org/hospitals/UF/service/transplant/heart/pediatricsheart.asp

http://www.shands.org/berlinheart/

http://shands.org/hospitals/UF/service/Cardio/vad-faq.asp

http://www.shands.org/hospitals/UF/service/Cardio/vad-video.asp

Surviving heart disease- MY TV DEBUT

To watch the video click the link below:
Surviving heart disease

TALLAHASSEE, Fla. - This month is National Heart Health Month.

Doctors say heart disease has been labeled the number one killer in America, even killing more women than men.

May 6, 2010, it was an intense two hour tennis match at Tom Brown Park.

"We were in a nice, long, tough match," said Russ Marsh.

His tennis partner that day happened to be an emergency room doctor.

"The last thing that I remembered was tossing the ball up and raising my racket," said Marsh.

Suddenly, Marsh was being rushed to Tallahassee Memorial Hospital.

"They were basically preparing everybody for the worst."

The next moment Marsh would remember would be waking up seven days later. Marsh would later learn he suffered a heart attack.

"The artery was totally blocked," said Marsh

In a short ten-minute procedure, doctors placed a stint in the artery leading to his heart. Marsh would remain in medically induced coma for seven days.

But the heart attack itself came as a surprise to Marsh who is a relatively active and healthy individual.

Ramsey Brown says, "I got the call at 4:30 that day that they had a match for me."

Ramsey brown has been in and out of the hospital all her life.

"Right before I turned five I had my first open heart surgery."

Having been through one operation after another, including heart bypass surgery in 2006

"That bypass they took an artery out of my leg and regraffed it," said Brown.

Until September of last year when the call came, a new heart had become available.

Only in her mid-20's, Brown was having a new chance at life with a heart transplant.


"People say oh you're too young to have gone through what you have gone through," said Brown.

.
Brown says by sharing her story she hopes others will be encouraged to see if they too may be at risk.

"it's very important for people to have regular check ups with their doctors and have their heart checked," said Brown.

And with a second shot at life, those like Brown and Marsh say they're going to enjoy every moment of it.

"One of the biggest things I take out of this is that everyday you just got to enjoy it," said Marsh.

Doctors say heart disease kills more Americans each year than any other disease. And it doesn't discriminate for things like age, gender, race, or family health history.

Click here to learn more about National Heart Health Month from the American Heart Association.

Go Red For Heart Disease Day

Yesterday I was asked by Karen Chavez with BHBB if I would share my story with WTXL ABC Ch 27 news, I said SURE!!! Well last night I felt like I was back in school again. Who knows my story better then me??? NO ONE yet I found myself having a panic attack that I wouldn't remember dates and names. So I kept reading over all my documents I have kept through the years from Doctors. Anyone that knows me knows I am a talker. Public speaking on the other hand is not something I am comfortable with. Something in my heart told me I had to do this though. I need to reach out to others that may be dealing with CHD or waiting for a transplant. I know that meeting people that have gone through what I have gone through is what helped me through all of this the most. Joining Broken Hearts Of The Big Bend and meeting so many wonderful heart families was one of the best things that happened to me. It made me realize that all the struggles I have gone through in life with my heart someone else out there has or is going through worse and it makes me very THANKFUL of the life I have. My heart breaks for all the lil ones out there living with a CHD and having to have any type of surgery. They are lil heart warriors!!!! So I am sucking up my fear of public speaking and going to share my story on behalf of all my BHBB families!!

So WATCH ME TONIGHT at 11 p.m. — immediately following Barbara Walter’s special, “A Matter of Life and Death,” at 10 p.m. on your local ABC channel — I will be featured on a segment about Heart Disease.

Then join me at Broken Hearts Open House - Congenital Heart Defect Awareness Week
Location: St Stephen Lutheran Church-Elca
Time: 6:00PM Tuesday, February 8th