Out of state transplants because of b. cepacia?

C

catalinaohara

New member
Hi everyone,

I was wondering if any of you, pre or post tx, have had to deal with going out of your own hospital or nearby hospital for transplant (or tx evaluation) because you have b. cepacia, cenocepacia. The decision by hospitals to stop transplanting cepacia patients has effected me greatly in that I can no longer be transplanted in Boston, my home city, but must go to pittsburgh, because the University of Pitt medical center is one of the only centers in the country still transplanting cenocepacia patients.
I am looking for others out there who have also been effected by this.

thanks so much,
Caitlin
 
M

markinohio

New member
I am going through UPMC for the same reason. I live in Ohio near Toledo and could not get evaluated at U of Michigan or Cleveland because of cepacia. I started the process at Nationwide in Columbus, but the program there quit transplants or cepacia transplants after the director left. I have gone through the transplant eval at UPMC, but am not listed because my numbers are not low enough yet. They will let me drive to Pitt becuase it's about a four hour drive time for me. I know there are a few other people who have gone to Pitt because of cepacia and I hope we can answer any questions you may have. Good luck.
Mark, age 43.
 
A

athanasia

New member
I am also from the Toledo area and got transplanted at UPMC. I was evaluated in 2002 before I had cepacia. My options at the time were Chicago, Cleveland, or Pittsburgh. I didn't want Cleveland because they were just babies in lung transplant compared to the other two at the time and Chicago had done more total but Pittsburgh had done more CF patients. I went there for several years as I got slightly better after being listed but then caught cepacia. I stayed with Pittsburgh even when my docs in Toledo wanted me to switch to Columbus who had started lungs as well. I got my transplant in 2007 and can honestly say that if I were listed anywhere else, I wouldn't have been transplanted and would not be here today. After my surgery, I found out Pittsburgh was one of the only centers in the country transplanting cepacia. They are amazing and I would recommend them to anyone. I knew of a girl who went to Columbus with cepacia and was transplanted there but didn't survive long after. Pittsburgh has been working hard to study cepacia and how to take care of post-transplant cepacia patients. I would recommend them to anyone.

Also, Mark, are you on Ohio Medicaid? If so, they will help you by paying for your stay at family house while in Pittsburgh, reimburse your gas money and food expenses for your trips to UPMC. It is not too bad of a trip from our area.

If either of you or anyone else has any questions about UPMC, I would be happy to answer them. The transplant team there is amazing and very honest. Hope that helps<img src="i/expressions/face-icon-small-smile.gif" border="0"> Good luck to you both.
 
P

pencf

Guest
My daughter was just recommended to U of PITT as well, she has had B. Cepacia for 12 yrs., she is 16 yrs old right now. We aren't ready for a full evaluation and will have follow up visits till we are. Getting the news our lungs functions are now in the range of the TX talk and then knowing that our choices are limited as to where we can get a transplant is definitely a double whammy! I will say this, I have a friend (no B. Cepacia) would was transplanted there and he can't say enough about it. We just returned from our first visit a few wks ago, and the doctor we met was Excellent. He was compassionate and direct. He has given us new approach to keep our Bug "Quiet" and preserving and maybe improving our lung functions. So far, our lives are as back to normal as they can be with CF. I feel blessed that we have a center like PITT near us (we are 5 hrs away in Delaware) and that they are BOLD and BRAVE enough to join the fight against B. Cepacia! We need an antibiotic to KILL the Damn Thing!!!! TODAY! I would recommend PITT to anyone!!!!
 
P

pencf

Guest
Forgot to mention that another patient at our CF Center (18 yrs old) with B. Cepacia was transplanted last year at John Hopkins. Hopkins was not offered to us, and I haven't asked why, does anyone know if Hopkins is still transplant the Cepacia population???
 
C

cftransplant

New member
In 2000, I loaded up the three large dogs, my wife and I move 2,200 miles from home for a TX in the East. Only three centers would look at cepacia. UNC, Duke and Pittsburgh. Tough infection pre and post TX. To visit my TX center is a long trip for follow up visits (expensive trips on aircraft with sick folk).

I do not understand your post. Cepacia does impact your life and the fun seems to never end. Eleven years ago, it was a very tough sell to get anyone to even look at a cepacia. I was diagnosed with CF in Boston in the early 1960's. Get in a vehicle with your support and move for another chance at life. For my whole life, I have had to move for CF. Moving and TX are all adventures. I have had cepacia since 1994.

Hospital's decided to not TX cepacia because it impacts their survival statistics. Lungs are winning the loto of life for a CF and lungs are in very short supply. Many centers do not feel they have the lungs to "risk" on a cepacia. Pitt seems like a nice area for a while. Boston should still exist when you return.

CF 61 cepacia 11 years out
 
J

jamiebug

New member
I have had Cepacia for over 21 years. I was diagnosed with it when I was just 13 yrs old. In 2007 I was VERY sick and I was never given the "You need to look into a lung transplant" talk because it was a well known fact that Cepacia disqualified me as a candidate. I couldn't believe that there was not hope for me. . .so I started contacting EVERY the best hospitals in the country only to be turned down by all of them except for ONE, Pittsburgh. I moved from Idaho to Pittsburgh because it was worth it to me. Despite being what most centers would say "too sick for transplant" UPMC listed me even after I was put on a ventilator just 5 days after arriving and completing the testing. I got lungs 3 days after being listed. The care there is FANTASTIC! They are there to save lives & that is what they do. I will be 5 years post transplant in December. . . I have not had complications such as rejection (yet) and I proved that the statistics against Cepacia transplants are wrong. My transplant is a HUGE Success~ I recommend UPMC to any patient that feels like other transplant centers are not treating them like they are important and worth saving. I LOVE the cardiologist/cf specialist and the surgical team is truly working miracles.

I do not regret having to travel to my center which is thousands of miles away. . .its' worth every breath I can take, every laugh I share with others, every moment I get to spend with my husband. My life has been a miracle that GOD, my Donor and UPMC gave me.

You're welcome to read my blog where I share my life post transplant at http://jamiebug.blogspot.com
 
T

TLM81

New member
i was just told that i cant get one at Cleveland anymore. They have quit doing cepacia patients. I have been with them for 2 yrs but not officially listed bc of my numbers. My only option is pitts as well now. Not sure if that will happen. I hear the outcome is not wonderful which is why cleveland has stopped doing them.
 
C

cftransplant

New member
TLM81

Jamiebug is around 4.5 years out with cepacia.

I am 12 years out of TX with cepacia since 1995-96 time line.

Pitt would have been my second choice years ago, today they would be my first choice.

CF-TX 62 cepacia 12 years out
 
K

kittencaitlin

New member
Wow, i didn't realize i had posted this two years ago and never looked at it again. It was an up and down time, and I was really fighting at the time to try to get tx in boston.

here i am 1.5 years later and am about to be listed at upmc. went there again in march to finish my evaluation. again, the team was great and i am so grateful for all of them there, that they continue to do this.

cftransplant - sounds like you are doing wonderfully. and i cant help but notice your impressive age! that is very cool and incredible that you were able to make it so long without needing transplant, and that you subsequently had a successful one.

i am incredibly grateful for pittsburgh and ready to take on the adventure and journey that it entails. But i still believe that the decision by other hospital's admin teams based on a singular article written in 2008, to stop accepting cepacia transplant patients because of increased liability, is wrong. The team at UPMC has bucked the trend and many of us are lucky for that, but more centers should be on that side. Many people live in or near world class medical cities and uprooting families is often not simply an adventure, but an added cost, stress, and burden that can effect one's health. I am one of the lucky ones that I have a fantastic support system to help me get to Pitt when the time comes, and to help me here in boston, but the adventure would be quite different if my circumstances weren't what they are. Many team members at my hospital and many of the aforementioned no-longer-txing-cepacia-patients hospitals also feel that it is unethical, but so far there has been no real fight.

anyway, like most of you/us, my focus right now is my waiting time and getting this transplant. i am scared (terrified) and excited. good luck to you all and i would love to speak individually with anyone who was at UPMC, if they want to.

thanks!

Caitlin
 
C

cftransplant

New member
Hope you get your gift when needed. I was at Duke last week (routine checkup), they would likely TX me again. I had cepacia at the time of TX and still have cepacia. Talked to a recent TX CF in the hospital, amazed I was twice her age when I had my TX and am close to 3 times her age now. If the waiting time is difficult, check Duke, call a lung transplant coordinator and get their position on cepacia and likely waiting times. You will do well, your young.

CF TX 63 cepacia and 14 years out
 
C

cftransplant

New member
Multidrug resistent Burkholderia Cepacia, may have changed over time (since 95), (currently multivorans not III). Been off walkabout for the past couple of days camping, for PT.

CF TX 63 cepacia 14 years out
 
G

GoryLori

Guest
Look into DUKE University Medical Center in Durham, NC as they have done CF patients with Burkholderia cepaica.
I was evaluated by Duke AND accepted, even with cepacia, yet I chose UNC-Chapel Hill instead.
Long end of the story is I did NOT proceed to transplant. God still has a plan for me!
Gory Lori
 
S

SJO

New member
Can anyone help me understand where B. Cepacia lives and if there are anyways to avoid it? My son is 9 with CF.
 
You must log in or register to reply here.
Top