I have heard thy prayer, I have seen thy tears, behold I will heal thee.
2Kings 20:5

Monday, June 20, 2011

Why Did I Choose Pittsburgh?

I guess I never REALLY thought about this question in some ways because I didn't really get much of a "choice". In case you haven't followed my blog for long, I cultured a nasty bacteria called Cepacia which is resistant to most antibiotics and for me automatically disqualified me as a "transplant candidate". I called, contacted and sent my medical records to pretty much all the transplant centers in the country (or at least the largest ones) I learned a lot when researching transplant centers. . . .let me share a little information:

#1 Hospitals have politics! Yep, and for the most part their fair share of "Pride". They take pride in what they "have to offer" their patients. SO the drawback is one hospital that may have issues or competition (even if they tell you they are unable to help you), will not refer another hospital even if they KNOW the other hospital is BETTER and can help you. I experienced this FIRST HAND!

#2 Transplant Success RATE?! Is it really accurate? Depends on how you look at it. Lets compare hospital A & B. Hospital A will only accept candidates that have the best chances of survival. Which include culturing NO pan resistant bacteria, have ideal PFT's for transplant with a certain BMI. . .basically they are looking for patients who will most likely survive the surgery with the highest chances of surviving 5+ years. Hospital B is a larger hospital and take on "High Risk" cases, usually including people who may culture bacteria that hospital A would refuse. Along with patients who are on ventilators (many hospitals will not transplant a patient who is currently vented).

If Hospital "A" transplants 10 'ideal' patients with minimal complications and has 9 of them survive then they have great statistics. If Hospital "B" transplants 10 "high risk" patients and say only 7 of them are successful. . .should that really be considered 'less successful'?? They saved 7 "high risk" patients, they deal with complications that other hospitals may never encounter. . . see how the statistics can be viewed? *these are just hypothetical*

#3 Size DOES matter. Smaller hospitals that only do 15-20 lung transplants a YEAR must be more particular with what patients they choose. . .to keep success rates good ;) Larger centers that do 10-14 transplants a MONTH can take more patients and higher risk patients and still keep their statistics relatively high. More volume = more experience and the ability to work with high risk patients. It makes sense. I would rather have a surgeon perform my transplant that does 10 x's as many transplants wouldn't you?

#4 Every transplant center large or small has something to offer. Whether it be convenience, more personal care, experience. . .or the top surgeons in the country. There are many great transplant centers and hundreds of successes. Each patient either LOVES their center or dislikes it for their own reasons.

#5 So remember to research, ask questions , be aggressive, be your own advocate, and do your homework. (Click here to read another post relating to this)Compare what each hospital says and offers because it's important to find the right center for you.

So if I am asked WHY I chose Pittsburgh, the answer is Pittsburgh CHOSE me. No one else wanted to help me. Pittsburgh CF/Transplant team goes by the motto: "When faced with a case/patient when other centers would say "why should we. . ." Pittsburgh says "Why Not?" I feel like they are in the business to SAVE LIVES. Not saying other centers aren't, but I KNOW for a fact Pittsburgh does because they had every reason to NOT transplant me.

I was prompted through prayer and blessings and lead by God to Pittsburgh. God has a plan and knows each and every one of us. He loves us and knows what is best for us. Listen to your heart, search and pray for answers when you are looking for a transplant center.

*These are my opinions along with stuff I learned from dealing with so many hospitals and understanding how they do things. . .this is just information to help you to know what questions to ask and what things to look for. Best Wishes!

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1 comment:

LungTransplantIPF@blogspot.com & RawWealth@blogspot.com said...

Hi Jaime,
Congratulations! I have recently been blessed with a lung transplant and just started my second blog last night. I would like to put your blog on mine and would hope that you would do the same for me. I have pulmonary fibrosis and I would like to give my readers as much information as possible. What are your thoughts? I look forward to reading more about you.
Be blessed,
Alma

Where to start to learn about my transplant!

Thank You for taking the time to read my blog. I am hoping that through this blog and my experiences that I can bring hope, faith and strength to all that may be living with Cystic Fibrosis, CF with Cepacia and Lung Transplant recipients. Information and blog entrees start Nov. 07. My Double Lung Transplant was on Dec. 10th 2007. Please feel free to read about my experience and ask me any questions! My email address is jamiebug77@gmail.com

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My Testimony

It's hard to put into words how I feel toward my Heavenly Father and the Savior. I have so many reasons to be thankful for what I have gone through & endured. Because of my trials in life I have gained a strong testimony of Faith. I have always had Faith in the Lord and in Prayer. As I faced the decision to get a double lung transplant I had to rely on faith to make the choice.....By listening to the spirit, I was guided to Pittsburgh where my life was saved. I believe prayers are answered. I have always tried to follow the philosophy of this: If I do what the Lord expects of me, he will give me what I want & need. That has always worked for me. I Believe in MIRACLES..........My life on this earth is a miracle- I prayed on my knees for years to be healed from my lung disease. I knew that through a priesthood blessing (if it was God's will) I could be healed. So many times I thought he would heal me instantly...my faith was tested as I continued to get sick and no cure was in my future. I turned to prayer....I talked to my Heavenly Father, I cried to him and he heard me and he healed me by guiding me to Pittsburgh and guiding the surgeons hands. I learned humility, and thankfulness. I realized that we need others to lean on and we are supposed to strengthen each others testimonies. I learned that the hardest things we'll do are usually the greatest blessings in our life. I was able to experience a lot of things during surgery and I know I had comforting angels in my ICU room. THe Lord knows each of us by name and he will never leave our side. We need to remember to stay close to him and have Faith that he is watching over us. I know this for a fact! I know that following the gospel will bring us true happiness- the world will tell us otherwise, but I know I am truely happy & living the gospel has brought me that. Amen