Feel free to use this letter as a guide to express your thoughts and feelings when writing your own letter. If you choose, you may print this letter and give it to your transplant team.

 

 

 

 

 

I am about to become a Living Organ Donor. I ask you to read this letter and try to understand me. I know you have a job to do, you are very busy and your time is limited. I know you have things you want to do in your personal time but I ask you take this with you. Read it in a quiet time such as a break time when you aren't rushed so you understand me better. You might think this is too much to ask. Please realize Living Organ Donation isn't my job either. Living Organ Donation is a person commitment to better someone's quality of life by forgoing one's own personal comfort, time and desires for a short period of time. Instead of taking a much deserved vacation this year, I am committed to weeks of altering my lifestyle and physical body. All I ask of you is to take a few minutes of your time to read this.

 

 

 

 

 

I am nervous for I know of the "what ifs". I am aware I might die because you told me this is a risk I take. I know I might be disabled, my remaining organ might fail, or I could become very ill  because you told me these are risks too. Even with all these "what ifs", my hope and optimism prevail as I continue forward. While I logically prepare for the "what ifs", I dwell upon the thought that I, one simple person, can change the life of another human being. My hope is they have the same quality of life that I experience everyday. There are times when reality sets in, I realize I am human and not a invisible.

 

I would like to talk with my family and friends but I know they are already nervous. There are times when I don't want to burden them with more emotions. It is difficult to discuss where the life insurance policies, living wills, etc are located, much less talking about my human fear. Sometimes I need an outsider to just listen, not talk at me. I know it is normal to have fear, it would actually be abnormal not to have some fear. While I have some comfort knowing I am not the only one who has felt this way, I still feel alone at times. There are many times I can't discuss my fears and have someone comfort me because they have their own fears. I am a very strong person or I wouldn't be able to donate but I am not a super person without emotions. I would like to discuss my fears with you but this brings on more anxiety and fear. I am afraid you will view my fears and anxiety as reluctance to donate. I am not reluctant, I know the reality of what I am doing. I know you are busy but it would be nice to have an occasional break in the routine of rushing to administer testing, reviewing test results, etc. It would be nice to have an occasional validation of the enormous task I am about to undertake. It would be nice to be validated as a human being with feelings rather than viewed as a group of numbers on lab tests. Please understand the driving factor for Living Organ Donation is pure emotion. The emotion of love for your fellow human being since there is no physical benefit I will derive from being a Living Organ Donor.

 

I know you are busy but don't ignore me. I have the same concerns and issues in everyday life as you do. I am like everyone else. I have a job, family, friends or school commitments also. The only difference is I have an additional commitment to become a Living Organ Donor and better someone's life. Realize when I call your office with a question, it is different than when I call my personal physician about something simple as a sinus infection. The minutes, hours, days, weeks and months are ticking away, while someone else suffers, until I pass all tests and relieve them of their anguish. The burden of whether someone has the potential for a quality life rests upon my shoulders at this time. Help lighten the load upon my shoulders by making the process easier. I don't want to have to fight the system of numerous messages left on answering machines without returned phone calls. I have enough to accomplish in my preparation without more frustration.

 

Please understand when I ask my family to be included I am asking you to include the essence of my being. These are the people during my life, who have been there at all times of the day and night. They have been there when I didn't feel well or when I needed a shoulder to cry on. I will need them after the transplant to help care for me when you aren't there, so don't distance them from me now. They are my eyes and ears when I am no longer able to process any more information because the reality of what I am about to undertake becomes overwhelming. You might not know it is overwhelming, but they know when to step in, so let them. They know me, you don't. They are just as important in this process and I am. Without their love and support, I might not be able to donate.

 

 

 

 

 

 

Please take care of my family and friends. Have someone to check on them when I can not be there to assure them I am alright. Include them in all you do for me they are a part of me that can not be separated from my being. I am who I am because of their love and influence on me. They have taught me the value of life that enables me to love another person so much I would risk my own life for them. They are the reason I love life so much. They are so dear to me and I have worried about them throughout this whole Living Donor Process. I have stifled my fears and worries many times to protect them. I have told them not to worry, to believe in you and me. As I am readied for the operating room, I know I will not be there to comfort them during the most tedious part of the whole transplant process. I am relying upon you to comfort them, to pat them on the shoulder as I have done. Validate their fears and let them know it is ok to have fear but I will be fine. Tell them I am in good hands and mean it.

 

On the way to the OR, hold my hand. Let me know someone is still there to comfort me when my family can't be there. Know when I look around before going into the OR, I am in a foreign land. I don't speak the language, I don't know the layout of the land I am in. Even though I am confident everything will be fine, I still have the whisper of the "what if's". I look around to experience the last face I see, the last hand I hold, the last voice I hear before going into a deep slumber of the unknown where my life is in your hands. During this whole process I have endured the mechanics of it all. It might be routine to you but for me, it like nothing I've ever experienced. Now I need tenderness in the faces I see, hands I touch and voices I hear.

 

In the OR, please talk to me, not around me. Tell me I'm doing fine or you need my help like you do other members of the transplant team. Even though I'm in a fuzzy state, my mind is still alive and processing information. If my heart rate is too fast, tell you need my help by relaxing. Realize I am part of the team also in this whole process.

 

Please tell me you will take good care of me and mean it. Whether I am a laborer, public figure, business person, medical professional, etc, realize I am none of these now. I have taken on the role as a Living Organ Donor. My professional roles are no longer important. What is important is I am now a patient, someone's child, a friend and mabye someone's partner or parent. I believe in you or I wouldn't be here, believe in me also. When the surgery is finished and you are telling each other "good job", please include me also. We coudn't have done it without each other.

 

 

 

 

 

 

Now I wake into a state I have prepared myself for, yet I didn't know exactly how I would feel. Before the surgery there were fears and emotions, there are still fears and emotions but they are different now. Many of the "what if's" are gone but there are a few still remaining. I still wonder if my remaining organ is strong enough to compensate for what is missing. I worry about my family as they see me lying here in discomfort and frightened at all the machines and tubes connected to my body. I try to manage a smile but my mouth quivers. I am tired and can not comfort them much. Please explain to them everything because something as simple as a blood pressure machine beeping creates anxiety for them.

 

In addition to the fears and emotions, I now have a broken body until it heals. A body that is compromised trying to cope with the adjustment. I know I must work hard to return to the healthy state I was in before I went into surgery. I am tired, in pain, groggy and can't remember things. I need your help, I don't know what to do. All the teaching and research I did before hand seems jumbled. Time is foreign to me right now. You need to remind me to cough and deep breath. While the incentive spirometer seems easy to you, it is confusing in this cloud I am in at times. Help me to choose the right foods according to my progress. Check on me to see if I need pain medication. I know to expect some pain and discomfort but I don't know what is normal. Just because I smile at others and I'm not screaming, doesn't mean the pain medication or epidural is working. During this whole process I've learned to endure much and become the strong one. Now is the time I need to focus on my needs in order to get better.

 

Remember to keep me in the loop concerning my recipient if possible. I need to know if my recipient made it out of surgery ok. I still worry about them. I need to know this journey helped them. If I am allowed to see them, help me along the way by telling me what to expect. I know you are busy but I will need some support right now to deal with the emotional issues. If a social worker or chaplain is available to listen to me, please offer their assistance. I need someone to listen to me, not perform a bunch of tasks and be done with me. The emotional turmoil is more troubling at times than the physical pain.  I worry about whether the organ is functioning well for them, if they are healing properly, if they will be able to experience the quality of life I worked so hard to give to them.

 

If I complain about a physical problem, please don't ignore it and say "it is expected". I know things like pain, weakness, bowel issues are expected. I have prepared for this for quite some time. I knew going into this journey it would be difficult. I prepared for the worse pain and weakness I could imagine. I have smiled when others wouldn't smile. I have endured mental and physical challenges in order to do this. I am a strong person, so when I say something is too much, it is too much. Please don't ignore me for I am more than the organ that was taken from me. The fears of the "what if's" that were dispelled from my mind immediately after surgery,  now creep back into my presence. I know most problems occur post-operatively and I need to know my problems will be resolved. Assure me I am in good hands by being attentive to my needs and not dismissing them.

 

I may not say thank you enough but know what I experience with your kindness is much appreciated. I am just tired, overwhelmed and full of emotions right now. When I was a child and ill, my caregivers gentle ways and smiles were sometimes more comforting than the medications they administered. While the cards and gifts I have in my room are nice to look at, it will be your smile and pat on the back I will remember the most. It is not the things we accumulate but the people we meet in our journey that we remember. This has been an incredible journey for me. I will remember the stranger, you the person who took care of me as though I was a member of their family. The person who took a few moments of precious time to talk with me and cheer me onward.