I have heard thy prayer, I have seen thy tears, behold I will heal thee.
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Thursday, January 21, 2010

"SOAPBOX". . . .other than those patients harboring Burkholderia cepacia

In case I have not made any difference or changed anyone's view of lung transplants for B.Cepacia infected CF patients. . . . .I would like to share this article. It was from 2007 from the University of Pennsylvania in Philadelphia, PA: I just don't agree. . .and I would hope that somehow I can change how most "medical professionals" view this topic. You can read the whole article if you like, but I have highlighted the part I disagree with. Although this exact statement is why I undeniably was given a miracle. . .I was given the University of Pittsburgh, PA, who saw a patient in need of a 2nd chance and they decided to take a chance on me. WHY NOT? was there attitude. Instead of having to always ask WHY? They ask WHY NOT?

Titre du document / Document title

Special considerations for patients with cystic fibrosis undergoing lung transplantation

Auteur(s) / Author(s)

HADJIHADIS Denis (1) ;

Affiliation(s) du ou des auteurs / Author(s) Affiliation(s)

(1) Division of Allergy, Pulmonary and Critical Care, University of Pennsylvania, Philadelphia, PA, ETATS-UNIS

This article reviews lung transplantation in patients with cystic fibrosis (CF). Lung transplantation is commonly utilized for patients with end-stage CF. There are several characteristics of CF that present unique challenges before and after lung transplantation. There is new information available that can be utilized to predict outcomes in patients with end-stage CF, and therefore can help in decisions of referral and listing for lung transplantation. The new lung allocation score, which allocates organs to patients who are on the lung transplant waiting list in the United States, presents new challenges and opportunities for patients with end-stage CF. In addition, the effect of the presence of microbiological flora prior to lung transplantation has been better linked to outcomes after lung transplantation. It is now known that, other than those patients harboring Burkholderia cepacia in their lungs before transplantation, most CF patients can undergo transplantation successfully. Nutrition remains an important issue among CF patients, and diabetes is a common problem after lung transplantation. In contrast, liver disease does not usually present major problems but, if it is severe, can necessitate liver and lung transplantation. Mechanical ventilation prior to transplantation might not be an absolute contraindication for CF patients. CF lung transplant recipients have good outcomes after lung transplantation compared with those of other lung transplant recipients. Quality of life is dramatically improved. However, they are still prone to common complications that all lung transplant recipients are prone to, including primary graft dysfunction, acute and chronic rejection, a variety of infections and malignancies, and renal failure.

*Source / Source 2007, vol. 131, no4, pp. 1224-1231 [8 page(s) (article)] (61 ref.)

Really?? It is known that CF, 'OTHER than ones with B.Cepacia', have good outcomes with transplants???? So all of us who got Cepacia, not by any fault of our own, should be automatically excluded from having the same opportunities that CF patients do, who just got lucky and don't have Cepacia? I think myself, along with several others are proof that this statement is false!! We are all PEOPLE and we ALL deserve a chance at a transplant if that is what we want. They say who gets to have a chance and who doesn't. It's a good thing we have centers like the UNIVERSITY OF PITTSBURGH who are willing to save us "unfavorable" Cepacia patients. I understand the LACK OF ACCURATE & INSUFFICIENT testing on Cepacia patients~ hence the poor statistics... . . but look at what is being done and working.. . . .

I am 2+ yrs post and I know others who are even farther. Yeah, some patients dont make it as far. .. but some CF only don't either. When you have say 100 CF patients transplanted in a year and say 4-5 of them die in the first yr. . .the survival rate is still good. But if you are only transplanting 5-6 Cepacia patients a year and say 1-2 die within the first year. . . .the statistics SUCK. . but look at how crooked the statistics are! How can you possibly even think that is in anyway an accurate success projection?? It's not! OF course CF non-cepacia will seem more likely to survive!! Are we only conserned with survival success? So if your mom has Cancer and she has a low "statistic/projection" that Chemo will help her. . . . shouldn't that be her choice whether to get the Chemo or not? It should be every human beings right to be treated equal as a person, as an individual. Every LIFE is WORTH saving!!!! Some of the great Doctors in this world can see it that way. . . . .some just want to take the "safe" road and be praised for how succesfull the hospital is. If you never take a risk, then how good are you? If you stay safe all the time, then how much are you growing and learning?

Sorry this is so long. . . and maybe a bit "angry", but I feel very strongly that EVERY CF PATIENT whether they are Cepacia or not, should be treated equal. If a patient lives 6 months post transplant free of CF lungs and healthy, then why is that not looked at as a success?? Why is that "failure". If I had only gotten one healthy, happy CF free day out of my transplant, then I would have considered it a success. . .. .any time you give some one just a little more life, a healthier life, a happier life, that is a success! I AM A SUCCESS!

In closing I would like to point out, that if there was not such a shortage on Organs available and willing Donor's and Donor families. . ..there would be more organs and perhaps end the need for doctors to have to pick and choose between patients living or dying. PLEASE, Recycle. . . . . be an organ donor!!

Save a life * Be Someone's Hero * Be an Organ Donor

3 comments:

bo said...

I could be wrong, but I think the abstract you've posted is saying, in effect, that it is KNOWN that non-cepacia CF patients have successful transplants. I don't think the authors are saying that cepcatic patients DON'T have successful transplants, simply that it was unknown (back in 2007) how successful transplants would be.

Keep in mind that you and Ashley and others who had transplants when you did are among the first CF-with-cepacia patients to receive lung transplants. It'll take a while for data to suggest that these types of transplants can be successful, and even longer to learn how long the transplants will remain successful.

Advances in medicine and healthcare and transplants procedures had led to an advanced expected lifespan for people with CF. This raises many issues (successful pregnancy is one) that the medical community doesn't have answers to. Yet. But they work on it, they study numbers and results (which your continued existence contributes to) and in time will publish results.

What I'm saying is, your continued existence will, in time, give someone who needs a transplant a little bit of hope, even if he or she doesn't know you, because the medical community will have more reliable information. They'll be able to say that it is KNOWN that cepatic CF patients CAN have successful transplants.

Jamie said...

Bo,

You're right~ most statistics are outdated, but back in 2007 this is how most medical centers viewed CEPACIA transplants and It will be a while before other centers follow in Pittsburgh's footsteps.

AND that's exactly how I read that article. . .CF, Excluding CEPACIA, has a good outcome. I think it's an indirect way of making both statements. This is not the only article with these same views and opinions. It is a known fact, CEPACIA is a higher risk. But Thank Goodness for the very few hospitals and transplant teams willing to take on the challenge! I am hoping that Ashley, Myself along with the other cepacia patients that were transplanted a few years ago can and do make a difference. Unfortunately most centers do see this as "cepacia automatically disqualifies a CF patient for a transplant". . .

Hanging out with the Riley's said...

You go girl....I wish we could just reach across and give them a child with this life or death situation and see how they deal with their fellow doctors turning them away to face that dark room. I know that Pittsburgh is heaven sent! but they cant do everyone....you are so good to try to get this word out! Love you always ....good luck tonight at Jesters.

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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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