Transplant Center

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BigAir

Guest
I am listed at NY Presbyterian/CUMC, like Piper, but CUMC suggested I dual list at UPENN to cover all basis

jerry
55 with CF
www.cfwindsprints.com
www.jerrycahill.com
 
B

BigAir

Guest
I am listed at NY Presbyterian/CUMC, like Piper, but CUMC suggested I dual list at UPENN to cover all basis

jerry
55 with CF
www.cfwindsprints.com
www.jerrycahill.com
 
B

BigAir

Guest
I am listed at NY Presbyterian/CUMC, like Piper, but CUMC suggested I dual list at UPENN to cover all basis
<br />
<br />jerry
<br />55 with CF
<br />www.cfwindsprints.com
<br />www.jerrycahill.com
 
T

Tracy390

Guest
My daughter had her transplant over 4 years ago at Pittsburgh Childrens Hospital. The entire transplant team was awesome from the resp. therapists & nurses to the CF docs & tx. surgeon. We had 2 choices & saw Pitt. first & really liked them so we stayed with them. Now that she is 20 years old we will be transferring to UPMC soon. We have been told it's a very good center who performs many lung tx. yearly. We have looked at other adult centers for her to transfer to but none compare (as far as stats) to UPMC. We live about 5 hrs. from both UPMC & Pitt. Childrens Hosp. The nice thing about those centers is they do not require you to relocate before the tx. We flew by private medical plane when we received the call that morning. I would recommend just doing research & looking at the stats from each hospital & transplant team to help you decide who to choose. Also it helps to get others opinions & personal experiences. Good luck with whoever you decide to go with!
 
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Tracy390

Guest
My daughter had her transplant over 4 years ago at Pittsburgh Childrens Hospital. The entire transplant team was awesome from the resp. therapists & nurses to the CF docs & tx. surgeon. We had 2 choices & saw Pitt. first & really liked them so we stayed with them. Now that she is 20 years old we will be transferring to UPMC soon. We have been told it's a very good center who performs many lung tx. yearly. We have looked at other adult centers for her to transfer to but none compare (as far as stats) to UPMC. We live about 5 hrs. from both UPMC & Pitt. Childrens Hosp. The nice thing about those centers is they do not require you to relocate before the tx. We flew by private medical plane when we received the call that morning. I would recommend just doing research & looking at the stats from each hospital & transplant team to help you decide who to choose. Also it helps to get others opinions & personal experiences. Good luck with whoever you decide to go with!
 
T

Tracy390

Guest
My daughter had her transplant over 4 years ago at Pittsburgh Childrens Hospital. The entire transplant team was awesome from the resp. therapists & nurses to the CF docs & tx. surgeon. We had 2 choices & saw Pitt. first & really liked them so we stayed with them. Now that she is 20 years old we will be transferring to UPMC soon. We have been told it's a very good center who performs many lung tx. yearly. We have looked at other adult centers for her to transfer to but none compare (as far as stats) to UPMC. We live about 5 hrs. from both UPMC & Pitt. Childrens Hosp. The nice thing about those centers is they do not require you to relocate before the tx. We flew by private medical plane when we received the call that morning. I would recommend just doing research & looking at the stats from each hospital & transplant team to help you decide who to choose. Also it helps to get others opinions & personal experiences. Good luck with whoever you decide to go with!
 

mckmodrn55

New member
<span style="font-family: georgia;">In researching available transplant centers for me, first is insurance coverage for which hospitals are available to you; second is national rating via UNOS website; third were interviews with two centers: Denver/Anschutz in Aurora, CO and Stanford University in Palo Alto, CA. Stanford was our choice based upon lower number on waiting list, excellent interview with pulmonary medicine staff: cystic fibrosis and lung transplant group; and mortality ratings.<br><br style="font-family: georgia;"><span style="font-family: georgia;">I hope that these practical steps that we took might be of help. In the end, we moved from NM to San Francisco in order to be close for the potential gift of lungs. The waiting period was 8+ months, FEV1 was at 17% by that date. <br style="font-family: georgia;"><br style="font-family: georgia;"><span style="font-family: georgia;">Luanne McKinnon (CF; age 56; miraculous double lung transplant on 4/4/2011 at Stanford University Hospital).<br>
 

mckmodrn55

New member
<span style="font-family: georgia;">In researching available transplant centers for me, first is insurance coverage for which hospitals are available to you; second is national rating via UNOS website; third were interviews with two centers: Denver/Anschutz in Aurora, CO and Stanford University in Palo Alto, CA. Stanford was our choice based upon lower number on waiting list, excellent interview with pulmonary medicine staff: cystic fibrosis and lung transplant group; and mortality ratings.<br><br style="font-family: georgia;"><span style="font-family: georgia;">I hope that these practical steps that we took might be of help. In the end, we moved from NM to San Francisco in order to be close for the potential gift of lungs. The waiting period was 8+ months, FEV1 was at 17% by that date. <br style="font-family: georgia;"><br style="font-family: georgia;"><span style="font-family: georgia;">Luanne McKinnon (CF; age 56; miraculous double lung transplant on 4/4/2011 at Stanford University Hospital).<br>
 

mckmodrn55

New member
<span style="font-family: georgia;">In researching available transplant centers for me, first is insurance coverage for which hospitals are available to you; second is national rating via UNOS website; third were interviews with two centers: Denver/Anschutz in Aurora, CO and Stanford University in Palo Alto, CA. Stanford was our choice based upon lower number on waiting list, excellent interview with pulmonary medicine staff: cystic fibrosis and lung transplant group; and mortality ratings.<br><br style="font-family: georgia;"><span style="font-family: georgia;">I hope that these practical steps that we took might be of help. In the end, we moved from NM to San Francisco in order to be close for the potential gift of lungs. The waiting period was 8+ months, FEV1 was at 17% by that date. <br style="font-family: georgia;"><br style="font-family: georgia;"><span style="font-family: georgia;">Luanne McKinnon (CF; age 56; miraculous double lung transplant on 4/4/2011 at Stanford University Hospital).<br>
 

mckmodrn55

New member
p.s. The team at STANFORD is INCREDIBLE! We each have our victory story, but this is one fabulous, gorgeous hospital with organic food; free massages twice a week for ALL cystic fibrosis patients; spiritual care; terrific therapists and extraordinary nurses, especially ICU and CF/Transplant Floors. Stanford is listed as #5 nationally for university hospitals and was first in the country to do heart/lung. They are TOPS all the way.
 

mckmodrn55

New member
p.s. The team at STANFORD is INCREDIBLE! We each have our victory story, but this is one fabulous, gorgeous hospital with organic food; free massages twice a week for ALL cystic fibrosis patients; spiritual care; terrific therapists and extraordinary nurses, especially ICU and CF/Transplant Floors. Stanford is listed as #5 nationally for university hospitals and was first in the country to do heart/lung. They are TOPS all the way.
 

mckmodrn55

New member
p.s. The team at STANFORD is INCREDIBLE! We each have our victory story, but this is one fabulous, gorgeous hospital with organic food; free massages twice a week for ALL cystic fibrosis patients; spiritual care; terrific therapists and extraordinary nurses, especially ICU and CF/Transplant Floors. Stanford is listed as #5 nationally for university hospitals and was first in the country to do heart/lung. They are TOPS all the way.
 

paintfreak939

New member
<P>Hi , </P>
<P> </P>
<P>I had a really amazing social worker at the hospital that followed my CF CHKD.  They had several choices for me to research.  I started with researching each site ,  compiling a list of possible centers that was in reason travel distance and once that had the most sucess rates and what thier core disciplines were.  I called each one and found out what my </P>
<P>choices were with them and if they could handle my case.  People with CF are difficult in some degree because of the bugs we cary.  The long and short of the story if the risk is low enough and the success rate is high enough for your cf then you have a good chance at that transplant center.  </P>
<P> </P>
<P>I have cf I am 44 years old and had a double last june my docs here recommended this center and boy was I lucky.  I am just a year out and doing ok but thier are challenges I face.  If distance is not a problem and living coNditioNs are not a factor as in cost.  I would really research DUKE University medical.  They are well organized unbeliviable surgerons, great pre-hab and rehab facilities. tx-cordinators are awesome and mainly just overall awesome. Downside is they are really busy because of thier abilities and forget about those that have already been transplanted.  If you want more information just hit me up </P>
<P><A href="mailto:apanzara@cox.net">apanzara@cox.net</A></P>
 

paintfreak939

New member
<P>Hi , </P>
<P></P>
<P>I had a really amazing social worker at the hospital that followed my CF CHKD. They had several choices for me to research. I started with researching each site , compiling a list of possible centers that was in reason travel distance and once that had the most sucess rates and what thier core disciplines were. I called each one and found out what my </P>
<P>choices were with them and if they could handle my case. People with CF are difficult in some degree because of the bugs we cary. The long and short of the story if the risk is low enough and the success rate is high enough for your cf then you have a good chance at that transplant center.</P>
<P></P>
<P>I have cf I am 44 years old and had a double last junemy docs here recommended this center and boy wasI lucky.I am just a year out and doing ok but thier are challenges I face. If distance is not a problem and living coNditioNs are not afactor as in cost. I would really research DUKE University medical. They are well organized unbeliviable surgerons, great pre-hab and rehab facilities.tx-cordinatorsareawesome and mainly just overall awesome.Downside is they are really busy because of thier abilities and forget about those that have already been transplanted. If you want more information just hit me up </P>
<P><A href="mailto:apanzara@cox.net">apanzara@cox.net</A></P>
 

paintfreak939

New member
<P><BR>Hi , </P>
<P></P>
<P>I had a really amazing social worker at the hospital that followed my CF CHKD. They had several choices for me to research. I started with researching each site , compiling a list of possible centers that was in reason travel distance and once that had the most sucess rates and what thier core disciplines were. I called each one and found out what my </P>
<P>choices were with them and if they could handle my case. People with CF are difficult in some degree because of the bugs we cary. The long and short of the story if the risk is low enough and the success rate is high enough for your cf then you have a good chance at that transplant center.</P>
<P></P>
<P>I have cf I am 44 years old and had a double last junemy docs here recommended this center and boy wasI lucky.I am just a year out and doing ok but thier are challenges I face. If distance is not a problem and living coNditioNs are not afactor as in cost. I would really research DUKE University medical. They are well organized unbeliviable surgerons, great pre-hab and rehab facilities.tx-cordinatorsareawesome and mainly just overall awesome.Downside is they are really busy because of thier abilities and forget about those that have already been transplanted. If you want more information just hit me up </P>
<P><A href="mailto:apanzara@cox.net">apanzara@cox.net</A></P>
 

paintfreak939

New member
<P>oh yea good point to the below responders.</P>
<P> </P>
<P> The waiting list last year was about 18 days at duke.  now that can change depending on your health and what is available.  I waited 36 day after i was listed.  I was actually their for about 7 to 8 months previous to that because I was under weight and needed muscle tone and many other things fixed first so i could survive the transplant.</P>
<P> </P>
<P>sorry for the second writing but its an important decisision.  the writer also said something to the effect of thier are great hospitals and great doctors through out the country i agree absolutely  ith that but the devils rock?</P>
<P> </P>
<P>anthony</P>
 

paintfreak939

New member
<P>oh yea good point to the below responders.</P>
<P></P>
<P>The waiting list last year was about 18 days at duke. now that can change depending on your health and what is available. I waited 36 day after i was listed. I was actually their for about 7 to 8 months previous to that because I was under weight and needed muscle tone and many other things fixed first so i could survive the transplant.</P>
<P></P>
<P>sorry for the second writing but its an important decisision. the writer also said something to the effect of thier are great hospitals and great doctors through out the country i agree absolutely ith that but the devils rock?</P>
<P></P>
<P>anthony</P>
 
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