Cleveland Clinic Transplant Center

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Cleveland Clinic Transplant Center

Friends of Cleveland Clinic Foundation

Website: http://transplantfriends.com
Members: 47
Latest Activity: Feb 3

Discussion Forum

Cleveland Clinic Friends

Started by Hostess Risé. Last reply by David Apr 10, 2013. 3 Replies

If Cleveland Clinic is your transplant Centerplease join us and share whatever you likeTo keep this group organized- you can create discussions instead of just leaving a comment in the box which is very difficult to follow. Just suggesting- Thanks…Continue

Cleveland Clinic Heart Transplant Discussion

Started by DAP1122 (Don). Last reply by Judee Jan 26, 2013. 29 Replies

Discussion for CCF Heart transplant patients and family members, evaluations, listed & waiting, LVAD, or post .... Continue

Tags: Transplant, Heart

Cleveland Clinic Kidney/Pancreas Transplant Discussion

Started by DAP1122 (Don) Nov 25, 2012. 0 Replies

Discussion for CCF KIDNEY/PANCREAS transplant patients and family members, evaluations, listed & waiting, or post .... Continue

Cleveland Clinic Liver Transplant Discussion

Started by DAP1122 (Don) Nov 25, 2012. 0 Replies

Discussion for CCF LIVER transplant patients and family members, evaluations, listed & waiting, or post .... Continue

Cleveland Clinic Lung Transplant Discussion

Started by DAP1122 (Don) Nov 25, 2012. 0 Replies

Discussion for CCF LUNG transplant patients and family members, evaluations, listed & waiting, or post .... Continue

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Comment by DAP1122 (Don) on September 15, 2013 at 8:53am

Bobbiejo ..... All Cleveland Clinics ..... we are one BIG happy family! I wish you weel!

~ Don

Comment by Bobbiejo on September 15, 2013 at 8:42am

If you do not mind me asking, is this group for a specific Cleveland Clinic or is it for all of them? I am just wondering because my surgeon recently moved to a Cleveland Clinic in Weston, Florida from the University of Miami/Jackson Memorial Hospital. I still do not live in Florida, but I keep in contact with him and his nurse coordinator by phone and email. Best of wishes.

Comment by greg on December 2, 2012 at 11:28pm

 While I was an LVAD patient I was asked to speak to several people that needed an LVAD because they we unsure of the outcome, the last I visited was a young lady who was only 26  at the time and is now an LVAD patient due to problems after child birth, she is doing great but was told they would not list her because of her age, she was told she needed to wait, and is now very discouraged. At some point while I was at the hospital -Cleveland Clinic I saw on the Cleveland news and later read about a new heart pump system that was totally self sufficent and is now being perfected. They told of Korea giving Cleveland Clinic 30 million dollars to hlep speed up the process, I later asked a couple of people at the clinic if they had heard that story and they had. I told the story to my lady friend and it gave her hope, and so for the rest of you VAD patients pray that this technology is developed. Not only would it extend life but no rejection meds will be needed.

Comment by hearttxp on November 21, 2012 at 9:59am

No Holly. I only had one of the older style LVAD's. When I did my intro I mentioned that to the two ladies from the Heart mate company. Since my LVAD was not made by their Company. But neither of them where not even working for HM anyway. 

I was siting at the table close to the windows.

Please take time this thanksgiving to give thanks to all of our donors and thier familes. I know I will !

Hard to beleive My 15th  thanksgiving all because of my donor !

Comment by ORLAN W. HOLMES on November 20, 2012 at 8:47pm

Thanks, figured thats what it was.  Yes they had a big get together but I wasn't allowed to go.  Surgury was to recent.  Thanks again.

 

Comment by DAP1122 (Don) on November 20, 2012 at 8:43pm

Orlan, The social worker for the heart transplant teams is the driving force and "hostess" for a monthly dinner for heart recipients, those waiting and we've also had some LVAD patients stopping by. I know that around the time you got your lungs this summer that there was a pretty huge lung recipient gathering at CCF.

Mike did write a nice review and Holly's comments also really captured the "soul" of our dinners. They are a blessing. I was 6 weeks out, weak, frail and in a wheel chair and SCARED when I went to my first one .... that first dinner was amazing, it gave me strength and drive!

I just hope that if our social worker ever leaves that this dinner will be continued.

Comment by Holly on November 20, 2012 at 6:08pm

Mike,

were you the gentleman that was on he total artificial heart? I was on Big Blue to. Was hoping to talk with yo but never got the chance.

Comment by Holly on November 20, 2012 at 6:06pm

I was at the dinner as well on Thursday. It truly is an inspiring time. To have a group of not just all the TX patients but the people we all refer to as "our rocks". As strong as we needed to be to indure our pain, "our rocks" had to not just watch us helplessly but be strong for us. I trly believe their job was harder than ours. What a group of totally amazing people. I feel blessed to be a part of them.

Comment by ORLAN W. HOLMES on November 20, 2012 at 6:00pm

so did ccc have a dinner in Oct and for Thanksgiving that I didn't know about?

 

Comment by hearttxp on November 20, 2012 at 3:08pm

Since Buddies went away ? I will repost some of my last post there ?

This past thrusday at our monthly heart Transplant dinner things I realized How much the contact with Post Heart Txp people helps those who are waiting ! And do to the fact that most now wait at home or off site from the transplant floor the contact with others does not exsit. Durning my stay at CCF almost 15 years I ago I relied on my weekly visists from that great group of guys and gals from the Mended hearts visitors. Guys like Bruce - Max and Percy all gave me hope that there was light at the end of that stay at CCF.

These dinners would not be here if it was not for Kay and all of those supposors ie the drug compaines-Device compamies or even the Local TRIO  chapt. I remeber those few first dinners which where Pot Luck where nurses and staff would bring dishes.

Congrats to Kay for doing what she does. She is the best. And to all who call /email/ or just pop in and visist patients waitng for that Gift of Life.

Mike heart recieapant 14+ years Cleveland Clinic

 

 

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