Last night at 7:40 pm est I got a call from my surgeon. He asked how I was doing and I said GREAT---How are You?. I really couldn't figure out why he was calling.....just to check on me?  How sweet. I have only been on the list for 1 month 3 days, so I was not thinking about organs yet. He said he had 'reasonable' organs for me and did I want them?  I was Totally floored! I was NOT prepared for this. Also, wasn't sure what "reasonable" meant.  They had told me it would be 9-15 months for my wait. I can't tell you how terrified I felt. I was shaking so bad I could barely talk.  But my first instinct was to say, No..........I wasn't ready.  After hanging up, I cried.

 

I must say I was (am) quite leery of posting this here. I'm sure I will get many people who will not have nice things to say about my decision. I don't feel like I should defend myself but I want to say that this group means alot to me and I care deeply for the people here. I always try to 'be there' for people who are going through a hard time because I understand. 

This whole process only started for me in May of 2003. My first appt was Oct and my evaluation started in Nov. I as listed by Dec 10th.  This all happened so suddenly for me that I have not had time to catch up with it all. I was going to make an appt to go in and talk to the Dr's about all my misgivings and fears. But they beat me to the punch by giving me "the call". So, because I have declined I am now inactive. Which I should be, so I can work through all this fear and apprehension.  One other thing I wanted to tell you. Since this whole thing began, I have not slept very well. Most nights I sleep 4-5 hours max. Last night, I slept ALL night long, till 7 am. I'm not sure if it was from crying/exhaustion or from some sort of relief at getting a reprieve from all this worry.

I feel like I am still a very healthy person. I have never been on any medication--still not. Well, an aspirin a day. I can still do 90% of the things I've always done and although I know I have a serious disease, I'm not at that 'Place' yet. You know, that place in your mind where you're ok with going ahead and know it's the only way...at peace with the decision...? Besides, I haven't even had time to prepare, or fund raise. I barely got my Living Will finished and my Power of Attorney.

 

There is so much I could say, just not sure how much I should. Not sure if everyone will understand my reasoning but I sure hope you can sympathize.  Please be kind in your remarks because right now, I don't feel like the most stable in the emotional/mental dept.

LOTS OF LOVE

Donna

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Since this has happened, I have gotten many questions about WHY I said no. Some people understand, some don't. All I can say is, to those who don't understand--it is a difficult process and unless you are going through it yourself, you cannot even come close to understanding how this feels. Most of the WHY's come from people who are not involved in the transplant or have never been exposed to it at all. I understand your confusion and I think that knowledge can help give you a better idea what is involved in this. I hope I have put up enough information and links so people can educate themselves. This is a horribly difficult situation to face. You don't have alot of choices and the ones you do have are not good ones. Only 42% of people who have this type of transplant live longer than 5 years. Less than half survive. So those who don't understand, please think about that. I don't want to cut my life short so I need to do this at the right time. New anti rejection medications and new procedures come out everyday. While I am still doing well and I'm fairly healthy, I want to give myself some time. But I can't wait too long. I have a window of opportunity and I can't let that pass by.

This is the most terrifying experience of my life. I cannot even imagine doing this. I know deep down there will come a time that I will have to face this and go through with it. I feel that now is not the time. I am so unprepared. There are so many things to consider. I could stay just like I am for Years and years or I could decline rapidly. I don't know what's going to happen. I just have to follow my instincts and PRAY alot.

I have been put on the INACTIVE LIST now because I turned down this transplant.  Even though we learned the organs turned out to be not acceptable. From what I understand no-one was able to use those organs that were offered. I also found out that 'reasonable' is just a choice of words. Mayo has a certain criteria that is above and beyond what most Centers will accept. All the organs are checked first hand by the surgeons here before they are used and if found to be unsatisfactory for any reason, they pass on them. BUT, in the meantime, the potential recipient is prepped for surgery and the surgeon is with the patient ALL the time, waiting for the answer from the surgeon that is with the organs. When and only WHEN they hear from the surgeon accompanying the organs, do they begin the operation.  

I am going through counseling now and going once a week to Support Group meetings at the hospital.  All of the people here in support group are those that have had their transplants here in Jacksonville. I belong to 2 internet support groups and everyone there is VERY supportive and I'm learning alot and they are all helping me through this.  Soon I will start a program called Pulmonary Rehab. It's Supervised exercise. I cannot exercise alone so this will be a great thing for me. I'm sure I will get better both mentally and physically. 

 

**NOTE**

Our dear friend Donna received her awaited heart/lung transplant on September 14, 2005. She passed away on September 21 due to  problems of the donated organs. We will ALWAYS remember our DEAR and SWEET Donna Murray who fought so bravely to overcome the challenges of transplantation. She is in perfect health now as the Lord has called her home. 

Luba/Manager & friend