Fear of death?

[dave]

Did anyone else find themselves increasingly scared of death as the donation date approached, or is it just me?  I'm not seriously thinking of backing out.  Just scared.

(Planning to donate a kidney to my Dad on June 13)

[sherri]

Dave,

As the date of surgery approaches many donors start to get anxious and have all sorts of fears related to the surgery. I think that is normal. Major surgery is always very anxiety provoking, especially a surgery that is elective where you gain no physical benefit. I did have a fear of death from the surgery but more often I had a fear of a complication from the surgery which I felt was more likely than death. The surgery is basically straight forward, my surgeon had done it hundreds of times and I was basically a healthy patient undergoing what is considered an uncomplicated procedure. However, I work in health care and I have seen what happens to patients who come in for a "routine" surgery. Often it is complications that occur rather than actual death during the surgery.

What helped me get through it was reminding myself of the rational part. So many people have done this before and I am in well trained hands. I did have my husband stay with me while I was in the hospital. I wanted an advocate should something not be right, someone to make sure I was getting the prescribed medications, checking on me etc.

It might be helpful if you talk to your social worker before to make sure you are completely ok with undergoing the surgery at this time. Maybe you might like to have more time to think about it and ask more questions, get more comfortable. You can certainly postpone it. If you feel you are ready just anxious try to establish a plan of action that may make you less anxious. Some suggestions: Plan on having an advocate to be with you before, during and after surgery to help you feel more at ease. Let the nurses know that you are anxious about having an elective surgery to remove a healthy organ. The nurses tend to underestimate the emotional needs of the donor and are used to taking care of sick patients who need their expertise. If you make your concerns known it may help those caring for you have a better understanding of your needs. Talk to other donors at the hospital who have had your particular surgeon so they can describe their experience and give you pointers on things they may have done differently. If you are a person of faith, contact your pastor, priest, rabbi or other religious/spiritual leader who may be able to offer words of encouragement and peace.

Where are you donating? Maybe there is an LDO member on the forum who could come and visit. Sometimes having another person who has been through this is helpful.

Being a family donor is difficult. It takes a lot of courage to step up and do this. I know other donors have said it was not a big deal, they knew as soon as their loved one needed a kidney that they would do it no questions asked. But many donors are ambivalent, me being one of them and it took me a long time to be ok with that. Some days I am better with it than others. I am 5 1/2 years out and am doing ok. My recipient is well also so we have been very blessed with an uneventful transplant journey.

Please keep talking about this and feel free to get support from anyone you need. Keep us posted and best of luck with whatever you decide to do.

Sherri

[dave]

Sherri,

Thanks for the very thoughtful response.  It's reassuring to hear from donors who were also anxious going in but had a positive outcome.  I'm a worrier by nature, and this is part of that.  I think my fear of death is mostly irrational.  I have two small kids, though, and sometimes I get hung up on "what-ifs".  My wife will be with me before, during, and after the surgery; she's an enormous support.  I'll also look into some of your other suggestions.

Thanks!
Dave

[sherri]

Dave,

Another suggestion from one worrier to another. As a wife and mother I wanted to make sure that I was responsible going into surgery. So as with any other type of planned surgery, I did make sure I had a power of attorney and living will in the event I was not able to make medical decisions for myself. I also checked my life insurance, health insurance etc to make sure that I was prepared and being responsible for my family as well as myself. I actually increased my life insurance a little less than a year post surgery. I wanted to do it then in case my creatinine started to go up because of my one kidney status not because of kidney disease. Insurance companies do not often take that into account and go only by the numbers. I did get the preferred rate.

I think not being in control is one of the hardest parts of this decision and ultimately the surgery itself. So many of us have done well and  I believe you will too. You will be much more relieved when you are on the other side. It will take time to heal so give your body a break and make sure you don't do too much too soon. Looking forward to welcoming you to the club.


Sherri

[Fr Pat]

     I myself did not have that problem, but I think it is perfectly normal. ANY surgery has its risks, and there have over the years been in fact a few kidney donors who have died from problems with the surgery. But I also think that the very "different" nature of undergoing a major surgery simply for the benefit of someone else has its challenges because it is such a "new" risk. I suppose it might be an exagerration to say that you will be in greater danger of death from a car accident on your way to the hospital that you will be during surgery, but I think that it is true that we take for granted the daily possibility of being killed by a drunk driver coming the other way and we don't worry excessively every time we get in a car. But it is good to be very honest in admiting any fears, because they are very real.
     Some donors have said that it was a comfort and strength for them to ask their church or synagogue to offer prayer for them (without necessarily using a name) or to go to their own sources of spiritual strength.
     best wishes,
        Fr. Pat

[dave]

Thanks again for the supportive responses.  This is a great forum.  I increased my life insurance and put together a power of attorney, too.  At this point, most of my t's are pretty much crossed and the i's dotted.  I think my fear of death is really a fear of the unknown - it's tough not being in control of the final outcome, either for me or my Dad.  But I'm glad to be able to do this for him.  I look forward to joining the LD club.  :-)

Dave

[Fr Pat]

Dear Dave,
     If you would care to toss a little humor into the mix of pre-surgery emotions (and if perhaps you are a fan of the "Simpsons" cartoon show) you might want to track down episode #1008 in season 10, "Homer Simpson in Kidney Trouble", where Homer gives an extremely reluctant kidney donation to his dad. Scientific it is NOT! Humorous it is. You might find a fuzzy copy at www.wtso.net but a clearer version would be more enjoyable. (Note that I said "enjoyable", not "instructive".)
   best wishes,
        Fr. Pat

[Mizchelle]

My Anecdote to this fear in particular was listening to subliminal/hypnotic audio books (downloaded from Audible.com and Amazon).

• Stop Fear of Surgery Now by Janet Hall
  Preparing for Surgery by Maggie Staiger
  Preparing for Surgery Subliminal Affirmations by Subliminal Hypnosis

I have no idea if the subliminal/hypnotic technology worked, but hearing the soothing affirmations over and over really diminished my anxiety about surgery.  I listened to these (about 30 mins to an hour) a few weeks before surgery and by 1-week pre-surgery, my anxiety completely dissipated. I listened with both earphones in and often while at work and before going to bed – would even fall asleep listening (so I wouldn’t advise listening in the car).

Its certainly worth a try 

[MrMike66]

Dave,

I had irrational thoughts of fear just like you.  More as I got closer to surgery.  I think self-preservation is a normal human instinct.

What helped me with the fear was thinking about the facts.  Remember that the odds are in your favor.  You had lots of tests that show that you are healthy and in good physical shape.  The doctors would not have let you get this far if there was anything in your labs or history that made them nervous.  The odds are 99.97% that you will survive.  That is really high.  They have gotten so incredibly good at the procedure its now routine.   I feel now 6 weeks after surgery that I would do it again.

I hope this helps.  You are amazing for even considering it.

Mike

[Dirty Rocker]

Dave,

There are some excellent responses here. Everyone pretty much hit the nail on the head, I just thought I'd throw in my experience: it was really quick for us (about 2 months from first crossmatch to surgery) but we hit a last minute snag and had to have an additional crossmatch done 4 days before surgery (not including the pre-op crossmatch the day before surgery). When the results came back compatible, I got really nervous and thought the same things you are thinking. Having to fill out a living will and medical power of attorney didn't ease those thoughts, either. Then my rational brain took over and reminded me of all the things I learned during the process and that I was in experienced and capable hands. It also helped me to remember that I was at this point in my life for a reason, and if I died during the process of saving someone else's life, at least I would know that I had done something noble and selfless. (sounds kind of morbid, but I had to come to terms with the (very, very remote) possibility of death from complications, and that was what worked for me) Those thoughts quickly faded and I started to get excited about taking part in a (literally) once in a lifetime opportunity. I also found it helpful to focus on the little things like how I would get around after surgery, what I would do while I was home from work, etc... and remember that there are a lot of people like us that have done what you're doing - most of us make it through without a hitch! Focus on the majority of 'cases' not the minority. It's worth reiterating that you would not be accepted as a donor if you weren't in exceptional health.

I'm just over a month out, and I feel great! I took a total of 3 weeks off work with surgery on the first Tuesday. I'm still easily tired and a little tender around my large incision, but no general soreness at all. In fact, it's easy to forget I just had surgery until I lean on something! My recipient's outcome was a little rough going at first, but he is now doing very well. If I could go back and do it all over again, I would do it in a heartbeat.

In hindsight, the nerves paled in comparison to the amazing feeling of helping someone who needed me.

Love,
Rocker

P.S. - I felt soooo wonderful after surgery to know that everything went well for both of us that when I saw my surgeon in the hallway on the way out of recovery up to my room, I high-fived him. I was that happy.

[flacapt]

Dave:
As you can see fear and indecision are common. Amazing we can give LIFE to one another isn't it.
You giving to your Dad is so very wonderful. As you can see I gave to my b-n-law over 6 months ago. Once I decided to donate,I never looked back, but I did use this site and others to prepare. I wrote down anything that bothered me, did research and talked it out with my surgeon. This preparation helped me "cope".
Some of us use books, some use cd's, some use GOD, try and find an outlet for your fear that works for you. I have confidence you will be fine and your DAD will be a "Superman"..
Love ya MAN!!
Marc