Adventures of a Kidney Donor

The Kidney… My Kidney

anne315 — Sun, 19 Feb 2012 02:29:28 +0000

Recently I was talking with some organ recipients about the complicated psychology of organ donation and receiving. We talked about possible feelings of guilt when you know someone has died and you have gotten an organ. It is sad but of course the recipient didn’t cause the death. Also, the family must get some comfort knowing that their loved one has saved the life of someone else.

I say this all of the time, but I think it must be more difficult to be a recipient than a donor. It must be hard to be in the position of having to receive rather than give, in addition to coping with the health condition that makes you need an organ in the first place.

One of the most interesting parts of the discussion was how recipients refer to the organ they have gotten. Some people even name the organ. One recipient said: “When I first got my heart I would say ‘the heart.’ After a few months my friends started noticing that I was saying ‘my heart.’ The change was unconscious.” This got me to thinking about “my kidney” out there, now residing in the recipient. I wasn’t aware of it until that discussion, but I stopped thinking of it as “my kidney” as soon as I no longer had it. To me it is “the kidney” but more importantly, I hope the recipient is now saying “my kidney.”

The kidney walks are starting to gear up. Please give to one or participate in a walk in your area.

Go to List of Resources on Kidney Donation

Support for Donors and Recipients

anne315 — Sat, 04 Feb 2012 19:41:25 +0000

If you are a potential organ donor or recipient or have already received or given an organ, you may need support. It is sometimes good to hear about other people’s experiences and to share yours. When I was preparing for donation I read a lot of blogs that showed details on donor’s experiences.

Donors: Living Donors Online is a good place to read about the experiences of others or to share yours. It has message boards and also links to blogs and donor stories. LDO covers all kinds of organ and tissue donation. Also check out national organizations like the National Kidney Foundation.

Recipients: To see if there are online stories, contact your local affiliate of national organizations like the National Kidney Foundation.

If you like to see people tell their stories, go to YouTube and you will see many videos of donors and recipients.

To meet with other donors and recipients, this list has support groups in several states: Transplant Living.org. To see if there are support groups in your community, contact your local affiliate of national organizations like the National Kidney Foundation. Hospitals and doctors often have support group information as well.

Here in Mid Michigan, we have the Transplant Support Group/Lansing Area. It meets the second Thursday of each month at The Peoples Church, 200 W. Grand River, East Lansing, Michigan in the Centennial Room, lower level off the Social Hall. Upcoming meeting dates are: February 9, March 8, April 12, and May 10. For more information Contact Joan C. Smith at (517) 351-2175 or joansmith@mindspring.com

The Transplant Support Group shares experiences and answer questions. Discussion is treated confidentially by the support group so people can feel free to share fears, concerns, successes and failures as it relates to the transplantation process. The group serves pre- and post-transplant patients, such as – eye, heart, lung, liver, kidney, bone marrow candidates and recipients.

The group would like to invite patients and caregivers to join them. You do not have to have had a transplant to come to the meetings. It is open to people who reside in the Lansing area and beyond. Such support is provided without regard for race, color, gender, national origin or faith.

Go to List of Resources on Kidney Donation

Michael: A Hero!

anne315 — Sun, 22 Jan 2012 01:57:12 +0000

Mikey holding a picture of his donor

I saw this on the news and it made me cry. It’s a great story about an organ recipient who has paid it forward in a wonderful way. In 2008 Michael Carraway’s liver failed and he became critically ill. Shortly after that, he received a liver from a young man who died in a motorcycle accident.

After he recovered, Michael wanted to give something to the community and at the same time honor his donor’s memory. To that end, he told his mom he wanted to feed the homeless. So Mikey and his family have helped provide meals to the homeless in Oakland CA ever since. They also provide gift bags with essentials like socks and toiletries. Mikey has participated in every meal distribution since the beginning. Michael is a CNN hero. What a generous young man and mature beyond his 13 years!

Mikey’s Meals also raises awareness about organ donation and they have signed up many donors. To find out more and to donate to Mikey’s meals go to: http://www.mikeysmeals.org/

2011 in review

anne315 — Sun, 01 Jan 2012 00:46:32 +0000

The WordPress.com stats helper monkeys prepared a 2011 annual report for this blog.

Here’s an excerpt:

A New York City subway train holds 1,200 people. This blog was viewed about 4,200 times in 2011. If it were a NYC subway train, it would take about 4 trips to carry that many people.

Click here to see the complete report.

Happy Holidays to All of the Organ Donors and Recipients!

anne315 — Thu, 15 Dec 2011 20:57:12 +0000

As the holidays approach, I am thinking about the person who received my kidney and how this is probably his first holiday without dialysis in awhile. Very cool. I hope he enjoys the holidays and has great health.

Some good news this season, Michigan’s dismal ranking in organ donation is finally improving. Michigan’s organ donor numbers took a dramatic leap in November, with a 56 percent increase over November 2010. Hooray! The article about this quotes Tim Davidson, of Highland, who last month celebrated the third anniversary of his liver transplant:

“It’s exciting to know that more people will have an opportunity to get a second chance at life like I did. Joining the donor registry is an ultimate, random act of kindness. You don’t know who may benefit from your gift, but you do it. I think of it as unconditional love for your fellow man.”

Couldn’t say it better myself! In this season of giving, think about signing up to donate your organs and encourage friends and family to do so. Let’s make the Michigan 2012 stats even better!

Go to List of Resources on Kidney Donation

Three Month Anniversary

anne315 — Sun, 06 Nov 2011 23:24:13 +0000

This Friday is the twelve week anniversary of my surgery. Hard to believe! A lot of things I have read say that at twelve weeks you feel like nothing ever happened, at least physically. Right now I would say I am pretty much back to pre-surgery level, although I still have a little pain at my incision site at the end of the day. Nothing major, but I still feel it a little.

After blathering on about it for so long it seems like the surgery and recovery was over in a flash. I am so glad I did it. I think about the recipient from time to time and imagine that he is getting on with his life too. I hope he is free to do a lot of things that he couldn’t do before.

One of my co-workers just gave a kidney to her dad, so the precious gifts of life keep going. You can give the gift of life too. Even if living donation isn’t for you, register to be an organ donor and urge your friends and family to register. Go to the Michigan Organ Donor Registry or the donor registry for your state. As the saying goes, “Don’t take your organs to heaven, heaven knows we need them here.”

Go to List of Resources on Kidney Donation

Questions for the Kidney Donor

anne315 — Mon, 03 Oct 2011 01:59:52 +0000

I thought I would share with you some of the questions I get asked a lot and how I answer them.

Q: Do you have any regrets about donating?

A: None at all. I want to be totally honest in this blog and not just be a cheerleader for donating. Almost every donor who responds to this question has no regrets, and I feel the same.

Q: Do you miss your kidney?

A: Not at all. The remaining one is doing the job. I haven’t noticed any changes in urination etc. I don’t feel “lopsided.”

Q: Were you afraid?

A: Yes, before the surgery I was nervous about the procedure. This is normal. My advice would be to read as much as you can about the process and this will make you feel more comfortable with the donation.

Q: Is it normal to have doubts about donating?

A: Yes. It varies with each person. Some doubt is to be expected, but if you find yourself overwhelmed by doubts, you may want to ask yourself if donating is the right thing for you. Your transplant team will ask you at your appointments if you still want to donate. Answer them honestly.

Q: Were you in a lot of pain after the donation?

A: There was some pain of course but it was controlled by medication. When I got home I noticed pain in movement, like when getting in and out of bed and up out of chairs. I also never knew how much I dropped things until now. It hurt to pick things up.

Q: What special diet are you on?

A: None whatsoever. A heart healthy diet is recommended (just as it is for everyone) and people with one kidney should avoid high protein diets like Atkins but that’s about it. I need to do better in that area. After my appetite returned I craved comfort food and indulged myself too much–but that doesn’t really have anything to do with the kidney donation!

Q: Can you drink alcohol?

A: Yes! I have never been a big drinker but I like wine and cocktails now and then. Heavy drinking isn’t recommended for donors, but then it isn’t recommended for anyone.

Q: Are you restricted from any activities?

A: Things like running, weight lifting crunches and other abdominal exercises aren’t allowed for the first six weeks after surgery. I am cleared now for these activities but I am still nervous about abdominal exercises and twisting. I still feel some tightness in my main incision area. I think I will try lifting light weights this week, my arms feel like jello.

Q: What was the worst thing about donating?

A: Being patient in recovery. Even though I knew it would take x weeks for this and x weeks for that, I didn’t expect to be so bowled over. It was weird not to be able to do things for myself. Of course this is only a short amount of time in the scheme of things.

Go to List of Resources on Kidney Donation

Woman Fired After Kidney Donation!!!

anne315 — Sun, 25 Sep 2011 02:03:00 +0000

I can’t tell you how upset this makes me!!!!! One of the most cruel things I have ever heard. Claudia Rendon was fired from her job after giving her son a life saving kidney donation. She was NOT protected by FMLA because companies with under 50 employees do not have to adhere to FMLA rules. Another story here.

I am seething. Who in the hell would donate an organ just to get out of work??? Seriously, what is the thought behind this firing? We have a huge shortage of donors and people die every day waiting. &*%$ like this only makes this problem WORSE. UGH.

Claudia is back on salary for now, and when a position opens up she can apply for it. Gee, how nice of her company. I am sure they didn’t do this out of the goodness of their hearts, but no doubt due to backlash they received. I sure hope no one in the company (or someone in their family) who made that crappy decision ever needs a transplant. If that happens they will find out first hand the double cruelty of illness and no support.

This story brings out a lot of issues. FMLA needs to apply to ALL employees, not just those in larger companies. Some kind of funding needs to be organized to reimburse smaller companies if putting employees on organ donation leave puts them in financial hardship. And, where is plain COMPASSION? Sometimes I despair of our society today. Recently Tea partiers applauded when it was suggested that people without health insurance should just die. I am so appalled. When did we take this awful turn??

If something like this happens to you as a donor or recipient or someone you know, FIGHT BACK. Contact your coordinators at your hospital who will be an advocate for you with an employer. Contact the national organizations such as the National Kidney Foundation, Gift of Life etc. Get as much publicity as you can in the media.

Check with your state to see if there are laws that help employees with paid leave for donation or that protect your position while you are off. If you are a federal employee and a donor there are federal laws that cover you.

The National Transplant Assistance Fund helps families address financial hardships arising from uninsured medical expenses related to transplantation.
National Kidney Foundation

Go to List of Resources on Kidney Donation

Back to the Real World

anne315 — Mon, 19 Sep 2011 00:41:52 +0000

Well, last Friday marked five weeks since my kidney donation. I am doing pretty well. I still feel a little “tug” at my largest incision site when I bend or twist but I can move almost normally. I am slower than usual when walking and still can’t use arm weights but probably next week I will be able to use the weights. I still get more tired than normal and go to bed earlier than usual. The “stitch” in my side is almost gone but makes an appearance once in awhile to remind me of my experience.

I went back to work part-time a week ago. I had to have a doctor’s note stating my restrictions which at this point are down to not lifting anything over ten pounds. I thought it would be easier to ease back in at 20 hours rather than jump into 40 hours a week. It’s better to be a little more active so I think this was a good idea. I have to admit it was a little strange at first to be around that many people again. It’s going to be a rude awakening when I go back to full-time soon!

It’s a little strange after yapping about this for so long to have it all to be behind me. I don’t miss the kidney or anything like that. I guess some donors feel like that but it hasn’t been my experience.

I am still glad I made the donation and my coordinator told me the recipient is doing well–hurrah!

Go to List of Resources on Kidney Donation

Keep Moving!

anne315 — Thu, 08 Sep 2011 16:00:07 +0000

Today on my walk I thought of this blog. (When I walk a lot of ideas come to me.) First let me say I am not speaking as a terribly fit person. As a matter of fact, people look surprised when I say that I exercise every day because I don’t look like it. I have my family’s “wonderful” metabolism–after one week of basically not eating after surgery I lost a grand total of two pounds. But more than aesthetics, exercise just helps you feel better. Leslie Sansone (who has a lot of workouts that I like) says: “How many times after a workout do you say, ‘I am sorry I did that?’ Never.”

You really have to keep moving after a kidney donation. Your inclination may be (mine was) to curl up and not move but everything gets better when you move. The hospital didn’t fool around, they had me up and walking the evening of my surgery. Walking speeds your recovery. It helps loosen muscles which tighten from so much lying down. It improves your circulation, lung capacity and helps your digestive system. The benefits go on and on.

When I got home I was dismayed at how much fluid I was retaining and how winded I was. As soon as I could manage even half a mile of walking, the fluid went away and my side aches were better. I normally do two miles a day or more but I can only manage one mile at time for now. I do one mile in the morning and one in the afternoon. Today for the first time I didn’t feel quite as winded and my pace was faster. I know it will take a while to get back to my normal routine.

Do whatever works for you. Walk, run (after six weeks) dance, bike…Some people like the motivation of a gym. I prefer walking outside or home exercise DVDs where no one can see how stupid I look. Your local library probably has exercise DVDs to borrow. I like Leslie Sansone and Chris Freytag which are low impact but there are many others to choose from. Exercise TV has free workouts on cable and satellite.

Having said all of this, don’t do any strenuous exercise for six weeks. I miss my arm weights because my arms are jello but I am not fooling with them for fear of hernia. Don’t run, do crunches or other abdominal exercise etc. Listen to your body and don’t overdo.

Go to List of Resources on Kidney Donation