On the fence

On the fence

As you might recall, Gloria Neal with CBS Channel 4 in Denver is working on a story about Living Kidney Donation. Once complete and aired, we hope to provide a link on this blog so people across the country can watch it. I finished up my part of the interview with Gloria on Monday. She asked me a question that I don’t think I did justice to in my response. The question was: “with my experience behind me, what advice or guidance would I give to someone considering donation, but on the fence?” I think I rather diverted my response, because my first reaction is not all that positive. In my opinion, someone “on the fence” isn’t ready to donate. And if you are going to go through living donation – e.g. surgery, removal of an organ – you need to be ready and committed to following through. So, I’d like to provide a bit more perspective to someone considering donation.
1. Be informed/educated about the entire process. Too often in our health care system, as patients we allow the system to take care of us vs. being empowered to take care of ourselves and protect ourselves. I’m not saying the system is evil – but that as a potential patient (remember this is voluntary) that your expectations are realistic. You need to ask questions. You should not assume that if you haven’t read something or been told something that it’s not in your best interest knowing. If you have a question, and there is no dumb question – ask it! As an example, while I don’t have any plans to get pregnant, I still had a question – what if – I got a wild hair and decided I did indeed want a child? Is it possible with one kidney? Would I have additional risks – other than being over 40 years old? (the answer is kidney donation does not prevent pregnancy. Women with one kidney are perfectly able to have children. The one caution –which I read about – is that there will be special attention paid to pregnancy related hypertension). You are donating a part of your body, it is your responsibility to ask questions and protect yourself, do not assume the health care system will do it for you.
2. Really, really think hard about your motivation and be sure it’s pure. Is your motivation in-line with your beliefs and value system? If you can, picture yourself in the period post donation – do you think you’ll regret your decision? What is nudging you to action? I’ve mentioned this before, but for me – I needed to know that my kidney was going to someone I could trust would do everything she could to keep it. Some things are outside of the control of the recipient and the health care system, but for me – I’ve taken care of my kidney, I only wanted to give it to someone who would do the same. It’s really important to identify your motivation and confirm it’s consistent with your beliefs. The entire process takes strength and courage and you’ll need that from within yourself.
3. Verify that you have the support of your family. While I spoke to the most important family members to get their reactions, I didn’t learn until after surgery that my donation was causing some stress and anxiety and it wasn’t likely to go away. At that point, I could do nothing. I don’t know that had I known I would have done anything different. But I will admit to anger. So, I had physical support post-donation, but not sure I had the emotional support I expected. Fortunately, as I mentioned previously, I’m stubborn. I chose a course of action, I stuck with it and I have no regrets. I can’t control others. But as a potential donor, will your family support your decision? How will you react/cope if they don’t?
4. If you know the recipient, have a discussion about what your donation means to them and what they expect from you. You both need to be on the same page. This goes back to the blog about the psychological aspects of donation and post-surgery implications. Things change post-surgery. You’ve done what you decided to do. It’s now up to the recipient. For altruistic donors, this is still an area you need to ponder. What if your recipient never wants to know you? What if you never have contact? Are you okay with your kidney being out there in the world and not knowing? I’ve aired my views on this topic and my expectations in a past blog – no need to make anyone cry again.
5. Do you have the support of your employer? Provided you aren’t independently wealthy or retired early… can you take at least 2 weeks off? Do you have the vacation time to cover your time off? Or sick time, or other kind of leave? If you do – GREAT! But if not, you need to think about the financial implications of taking time off or using short-term disability which doesn’t typically pay at 100%. And keep in mind, that while most people seem to return to desk-type jobs at about 2 weeks post-surgery – this isn’t true of everyone. Consider worse case scenarios where you might be out longer. Do you have enough money saved to cover all of your obligations?
6. What expenses will be covered by the recipient? Remember, you cannot accept money for your donation. However, your basic needs right prior to surgery (if you have to travel to the surgery location), health care costs, etc. might be covered by the recipient’s insurance. In our case – Lisa and I both have Anthem Blue Cross Blue Shield. However, other than some mistakes by the medical laboratory, all of my expenses were covered by Lisa’s policy. My travel to and from Denver, my hotel the night before surgery and all care provided to me in the hospital and leading up to surgery. Lisa was also very generous and paid for my mom and sister to get to Denver and home as well. I don’t know if her policy would have covered my expenses in the days post-surgery when I needed to stay in Denver. I stayed with friends. But, that is something to consider – while I only asked 3 transplant centers, all wanted the donor in the town of surgery for a week post-surgery.

There are probably some additional considerations I’ve missed, and I’ll add those when I think of them. For those living donors following this blog – if you have anything you’d like to add to this discussion, please let me know and I’ll be glad to put up an additional blog on this subject. Perhaps the most important aspect of this and most important consideration is how will your sacrifice benefit another? How will that make you feel? What could that decision do to change your life?

I have no regrets. I’m super pleased that Brutus is doing well with Lisa and it has given her hope. Hope for a life off dialysis. Hope for a long future with Daniel, Sophie and Mr. Bingley.

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4 thoughts on “On the fence

  1. Sarah, thanks for these insights and for writing this down. Incredible. Since a TV feature can only do so much (and is regional at best), there must be a way to share what you said with a national audience. And all of join you in wishing Lisa a long long life with Brutus, along with Daniel, Sophia and Mr. Bingley! Brilliant, bravo!

  2. I agree with every thing you said. As my donor team told me, once they started the surgery and the kidney was out, I’d never get it back. Since I donated to my mom, my parents had concerns that I never thought about. Their main concern was what if down the road I developed some unforeseen medical condition that caused me to go into kidney failure and needed a transplant myself, how I would be treated. I am 29 years old and at this point have no want to have children, but I was told by Mayo that I could have a healthy pregnancy. My expenses were covered entirely by my mother’s insurance. I luckily had Short-Term disability from work that covered my wages, and had 7 weeks off work. I was in the hospital for 4 days including the day of surgery, and since I lived less than 2 hours from the Mayo, I could have gone home the same day I was released.

    I appreciate the blog a lot. It is nice to see others have similar feelings that I have, and most just can’t relate.

    Nicole

  3. Sarah,

    My nonprofit organization is helping many people interested in donating a kidney. (Two of them have their transplant scheduled for this coming week…what a Christmas present.)

    I would welcome discussing how we could help other people through the process.

    Feel free to contact me directly.

    Harvey Mysel
    Founder, Living Kidney Donors Network
    a Not-for-Profit 501(c)3 Organization
    Office 312-473-3772
    Mobile 847-912-7059
    Fax 312-238-8621
    http://www.LKDN.org
    http://www.facebook.com/LivingKidneyDonorsNetwork
    http://LKDNblog.blogspot.com
    http://www.twitter.com/LKDNorg
    harvey@LKDN.org

  4. Sarah, What thoughtful questions to ask yourself. Thank you for sharing your story. Mary

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