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packrat
@packrat

Posts: 12
Joined: Aug 25, 2011

Heart Transplantation

Posted by @packrat, Aug 25, 2011

I would like to hear from others who were on the waiting list for a donor heart to find out how long you waited before a Heart was available?

REPLY

@mel

I waited a year for mine in 2007.

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I am O-, I was never told that I had a problem with antibodies and I had it at Mayo Clinic , Rochester. Which has a wonderful program!

@dannyc

Because I was waiting for a heart and a liver, my waiting time was more complicated, and I waited amost 2 years. Had it been a heart only, I think the waiting time would have been approximately 6-9 months. Be sure to ask your docs what your STATUS is; that is a key indicator.

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Hi Danny:
I am getting worn from waiting. When the phone rings and its Mayo I think it is for the heart. I looked up the statictics for Mayo Jacksonville and they have only done 7 hearts this year according to OPTN. There are 20 people waiting. Does that mean I have a 3 year wait? Also, what blood type are you and body height? I understand people with rare blood types get hearts quicker than O positives. I am over 6 ft. so I wonder if shorter people will get hearts quicker? Maybe I’m thinking too much.
Rich

@dannyc

Because I was waiting for a heart and a liver, my waiting time was more complicated, and I waited amost 2 years. Had it been a heart only, I think the waiting time would have been approximately 6-9 months. Be sure to ask your docs what your STATUS is; that is a key indicator.

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Hi Rich,
In my opinion, you are thinking too much–and this is quite normal. I was certainly guilty of the same thing.

Some quick answers to your questions: rare blood types do appear to have some advantage; and shorter people do not have any advantage (I’m 5’4″). I’m A negative.

And most importantly, you do NOT necessarily have a 3 year wait. However, there is simply no way of predicting just how much longer your wait will be. The only help I can suggest to give you some indication is to ask your docs two questions: what is your STATUS, and how many people with your blood type are ahead of you. There may be 20 people waiting, but they have not have your blood type or, if they do, their status may be lower than yours. And even if they are your blood type and have the same or higher status, there are still other factors that the docs consider.

The waiting is the toughest part, Rich. Just try to hang in there. Dan

@dannyc

Because I was waiting for a heart and a liver, my waiting time was more complicated, and I waited amost 2 years. Had it been a heart only, I think the waiting time would have been approximately 6-9 months. Be sure to ask your docs what your STATUS is; that is a key indicator.

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Just wanted to shout out… I used to work as a heart and lung transplant nurse in the ICU (MB6E) at Mayo.. if you have specific questions let me know. The surgeons are wonderful, and the nurses are trained so well that you may be rest assured when you get the call- you’re in good hands. I left Mayo only because of health issues myself. I miss it dreadfully.
I know that if a surgeon wanted their patient to be a priority they would admit them and put them in the CCU with a SWAN (a big IV that sits in the heart)… this puts you at the top of the list. The UofMN and Mayo “fight” for organs… but Mayo being as large as it is- often the donor is within the same building.

@dannyc

Because I was waiting for a heart and a liver, my waiting time was more complicated, and I waited amost 2 years. Had it been a heart only, I think the waiting time would have been approximately 6-9 months. Be sure to ask your docs what your STATUS is; that is a key indicator.

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Rich-
Florida’s program is fairly new, even though the staff may not be… staff were recruited to Arizona and Florida to train them… this may account for the smallish numbers.. I know in MN we did a lot more than that a year!!

@dannyc

Because I was waiting for a heart and a liver, my waiting time was more complicated, and I waited amost 2 years. Had it been a heart only, I think the waiting time would have been approximately 6-9 months. Be sure to ask your docs what your STATUS is; that is a key indicator.

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Thank you for contacting me. I’m still waiting for a heart. I am at home on Milranone 24/7 so I am stable. I understand they don’t want to admit me until I go downhill but the waiting can be a hassle as well. Into month 6 of the wait.

@dannyc

Because I was waiting for a heart and a liver, my waiting time was more complicated, and I waited amost 2 years. Had it been a heart only, I think the waiting time would have been approximately 6-9 months. Be sure to ask your docs what your STATUS is; that is a key indicator.

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i’m surprised they haven’t put you on viagra (no kidding here)! I imagine you have a pump at home. Do you live close to Mayo?
Don’t be downcast about waiting for a heart. Mayo is extremely picky about the hearts they accept. I guess that’s a good thing. If worst comes to worst they would put an LVAD (Left ventricular devise) in you. If it’s the right side that is failing- I would myself stay away from the RVAD’s. I can’t remember if you said you were in MN or not… but I have some opinions i’d like to share with you privately. You can email me at nursegina@optonline.net.

Hang in there!

@dannyc

Because I was waiting for a heart and a liver, my waiting time was more complicated, and I waited amost 2 years. Had it been a heart only, I think the waiting time would have been approximately 6-9 months. Be sure to ask your docs what your STATUS is; that is a key indicator.

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Danny- I have to wonder if I took care of you!! I’m glad you are doing well. Hugs to you!

@dannyc

Because I was waiting for a heart and a liver, my waiting time was more complicated, and I waited amost 2 years. Had it been a heart only, I think the waiting time would have been approximately 6-9 months. Be sure to ask your docs what your STATUS is; that is a key indicator.

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I have a Bard ambulatory infusion pump, which runs on AA batteries so I can still get around. I am knowledgable of VAD’s since I spent 35 years selling to CVS and cardiologists. I will contact you by your email.
Thanks
Rich

Dear packrat-
You can find wait times available on the SRTR website here:
http://www.srtr.org/csr/current/Centers/TransplantCenters_Newz201112x.aspx?organcode=HR

I was on the list 1 month and when i relocated to Jacksonville i got my call in 4 days that was 8 yrs ago but not everyone is the same

@angell640

I was on the list 1 month and when i relocated to Jacksonville i got my call in 4 days that was 8 yrs ago but not everyone is the same

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Thanks for your response. I received my gift in June 22nd. This year at Mayo Jacksonville. I waited 1 year with 1 month in the hospital.

@angell640

I was on the list 1 month and when i relocated to Jacksonville i got my call in 4 days that was 8 yrs ago but not everyone is the same

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Congrats to you and good luck

@angell640

I was on the list 1 month and when i relocated to Jacksonville i got my call in 4 days that was 8 yrs ago but not everyone is the same

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My nephew waited from oct to feb
It has been over 5 yrs. and is doing great
He was about 50 yrs. old when he rec. it

I had my transplant 5/23/12 I was on the list for 1 month to the day.

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