Adventures of a Kidney Donor

February 18, 2012

The Kidney… My Kidney

Filed under: Psychology — by anne315 @ 9:29 pm
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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

February 4, 2012

Support for Donors and Recipients

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

November 6, 2011

Three Month Anniversary

Filed under: Kidney Donation,Medical,Psychology — by anne315 @ 6:24 pm
Tags: ,

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

October 2, 2011

Questions for the Kidney Donor

Filed under: Medical,Psychology — by anne315 @ 9:59 pm
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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

September 18, 2011

Back to the Real World

Filed under: Medical,Psychology — by anne315 @ 8:41 pm
Tags: ,

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

August 26, 2011

Advice from a Kidney Donor

Filed under: Kidney Donation,Medical,Psychology — by anne315 @ 12:47 pm
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Before

No one should talk you into or out of donating. Read as much as you can, talk to other donors and medical professionals and decide for yourself. There is nothing wrong with deciding  that donation isn’t for you.

Read as much as you can, including medical literature and people’s personal experiences. When you are going for tests, read about what those tests will be like. Having said this, don’t read TOO much. If you find yourself getting overwhelmed, set the reading material aside for a little while. I have some resources here: Go to List of Resources on Kidney Donation

Dealing with reactions from others. I had some well-meaning friends that were unconsciously not supportive. People will tell you how dangerous the surgery is, think you are crazy for donating, and I suspect have underlying guilt that they would never consider donating themselves. There is nothing wrong with not being able to consider organ donation.  The other side of the coin is the “hero” aspect. I get uncomfortable with the “hero” idea.

Emotions you may feel: It is normal to be scared, apprehensive, worried, anxious excited etc. Just because you have decided to donate doesn’t mean you can’t feel this way. Many organ donors (as in my case) have never been in the hospital before so there are a lot of unknowns to face.

In the Hospital

Have a supporter with you. You will be out of it so you will need help in asking for things and understanding your doses for pain and other medications when you go home. My sister was invaluable! Thanks sis!

If you are prone to nausea or even think you may be, ask the Anesthesiologist to administer a good dose of anti-nausea medication. Many hospitals don’t automatically administer or prescribe anti-nausea  medication so get on a schedule to receive it. Nausea is hard to chase. Get some anti-nausea  medication to take home.

Don’t be afraid to ask the medical professionals questions and answer their questions honestly about your pain levels, how your urination and bowel movements are going etc.

Keep moving. It might be your inclination to curl up with your pain but you will feel better if you walk. The nurses and doctors will tell you when they want you to start. In my case, it was the evening of my surgery.

Get a small pillow. This was a great “security blanket” for me. It’s a great way to brace your sore abdomen when you move, cough or sneeze.

After

Post surgery advice from Johns Hopkins.

Don’t compare yourself to other donors. I fell into that when I got home because I felt that my recovery was slower than other donors I read/heard about. You will heal at your own pace.

Drink a lot of water. Stock up on foods you like that are easy on the stomach. For those of us in the Midwest, Vernors ginger ale is a godsend.

Keep moving. It might be your inclination to curl up with your pain but you will feel better if you walk as much as possible. Move carefully though, avoid twisting motions to prevent hernia.

Get a bed tray with legs to eat on and to keep your laptop off of your lap.

“Grabber. If you live alone, consider getting something to pick things up off of the floor. I had no idea how many times a day I drop things until it hurt to bend down and get them.  I became pretty adept at picking things up with my feet!

You may feel a little down after the hoopla of the surgery and all that led up to it is over. This is normal.

Think about your recipient being free from dialysis and how much their life has improved. When I am queasy and/or sore this is very comforting.

Go to List of Resources on Kidney Donation

August 9, 2011

Getting Your Ducks in a Row*

Filed under: Medical,Psychology — by anne315 @ 3:25 pm
Tags: , ,

The hospital sent me a letter and made some suggestions on how to prepare for kidney surgery. I thought I should share some of them. Even though the odds are very great that all will go well, it’s a good idea to be prepared and make things easier for your family should something go wrong.

Medical power of attorney.  I live in Michigan and the Michigan State Bar has good information and printable forms on Advanced Directives. The University of Michigan hospital provides the forms too. Check with your State Bar or your hospital. You should designate someone to make medical decisions for you in case you become unable to do so. You will need to give someone medical power of attorney and also have a backup person. The forms need to be signed by you and witnessed.

Living Will You can also have a living will. This is a document in which you inform doctors, family members, and others what type of medical care you wish to receive should you become terminally ill or permanently unconscious. I wasn’t sure how to word it so I found this example helpful. I re-worded it to suit me needs. You can find other examples online or in law/estate books. This will need to be signed and witnessed.

Will. I didn’t opt to make a will but it might be something for you to consider if you have property and assets you wish to distribute.

Other suggestions:

  • If you live alone make sure you have a caregiver for when you get home. (Thanks sis!)
  • Get all of the paperwork done from your employer for your absence.
  • Ironically, make your organ donation wishes known or sign up to be an organ donor in your state.

Some things I have done on my own:

  • Read about your surgery and recovery in medical publications and blogs… BUT watch information overload so you don’t freak yoursef out.
  • Stock foods and beverages for your recovery i.e. soup, jello, pudding, 7-UP and (yes, I am from Michigan remember) Vernors ginger ale.
  • Get a bed tray for eating and to set your laptop on.
  • Stock up on books, magazines and DVDs.

*Origin of this saying varies:

One theory involves bowling. Early bowling pins were nicknamed ducks. Before  automatic resetting machines, these “duck pins” had to be manually put back into place between bowling rounds.

August 7, 2011

Don’t Worry, Family and Friends

It’s normal to be worried when a loved one is going to have surgery. I am having some trouble sleeping myself as K-Day approaches–this Friday! I find myself turning to two different pieces of writing over and over that are very comforting. I would like to share them with the people who are worrying about me.

First, Tom Simon is a kidney donor who wrote an excellent blog about his experiences. An especially good post is “Ask the Kidney Donor.”  Some highlights:

Remind your friends and family of the following things:

The donation of a kidney is laparoscopic surgery, meaning small incision and quicker recovery. Most donors are out of the hospital on the next day, back at work in two weeks, and back to normal in a month. The surgery is no more dangerous than any procedure done under general anesthesia. The anesthesia is the real risk factor…

There is no scientific evidence in 50 years of living kidney donations that there are any ill effects to living with one kidney. Within five weeks of donation, the remaining kidney swells in size and increases its filtering power (the “glomerular filtration rate”) to match the power of two kidneys. In short, you’ll have a single super-kidney instead of two simply adequate kidneys.

When kidney disease occurs, it nearly always strikes both kidneys at the same time. It’s not like one kidney fails and you find yourself knocking on wood, thankful that you’ve got a spare. If I should develop kidney disease, I will need treatment or a transplant – just like I’d need if I had two kidneys. If a kidney donor needs a transplant, they go straight to the front of the line on the kidney transplant list, which seems like a very fair deal to me.

Tom recommends a really good article by Virginal Postrel, “Here’s Looking at You Kidney.” It is a step by step account of her kidney donation to a friend. I like reading it to see how things will most likely go for me. Some highlights:

Things went pretty much as advertised. One minute Sally and I were on beds being wheeled down the hall. I was nervous for about two seconds.

And then I woke up. My husband and parents were there, looking relieved. The nurse took off my oxygen mask so they could feed me ice chips…I got used to answering a list of excretory questions, starting with “Have you passed gas?” After 24 hours on a catheter, my body refused for a while to urinate on command. When I learned to pee again, the nurse did a victory dance. All in all, it was a very dignified experience.

Go to List of Resources on Kidney Donation

July 23, 2011

Yep, I’m Scared

If I sound fearless in these posts I can assure you I am not!  As kidney time gets closer I am starting to feel some anxiety. It hits me at night (Oh my God, they are taking out one of my internal organs!) The other time it hits me is when I get blood drawn. I can’t look when they insert the needle and I think: “How am I going to have surgery when I can’t even look when they take a blood sample???” I have never been in the hospital, never had an IV (until I had kidney tests last year), never had stitches (except for a mole removal)…

I think I will have a few moments of terror as they wheel me down the hallway to the Operating Room. Jackie says you are knocked out before you go into the actual OR so that is good. They also give you a relaxing drug before you are anesthetized. I know there will be pain when I wake up. Several people have told me that they don’t know how much pain medication to give you until you wake up after surgery.  You get a button to press to give yourself pain medication through a pump–but there is a short interval between waking up and getting that going–YOUCH.

Major complications don’t usually happen but they include pneumonia, infection, hernia, bleeding, bowel obstruction, and bowel injury. Adrenal gland problems are rare but sometimes occur.  Some of the adrenal vasculature is altered during a nephrectomy. Usually the other adrenal vessels take over but there have been some documented instances of adrenal problems.

The biggest fear that I have isn’t so much about my pain etc. but thinking that my kidney may be rejected by the recipient. Rejection is less frequent now with the new medications but of course it is still a possibility. What a BUMMER that would be for the recipient and me. Since this is an anonymous donation, if the kidney is rejected right away I won’t know.  I won’t have to recover knowing that it failed.

Having said all of that, I still have no doubts about donating.  It is normal to have some fears before surgery. Dinner with Jackie the other night made me feel even more strongly that this is the right thing for me. She was talking about how her life is so much more free now without dialysis and how wonderful it will be that someone will be free like this after I donate.

My sister has a friend who donated a kidney years ago (via the open method not the laparoscopic method) and she has done very well. She told my sister to tell me her rules of three:  the first three days are rough, the first three weeks you recover, after three months it is like nothing has happened. So in spite of my fears, I know it will all be OK.

 Go to List of Resources on Kidney Donation

April 9, 2011

Great Advice

Earlier I wrote about Tom Walter and Kevin Jordan. Tom is the Wake Forest University baseball coach who gave a kidney to one of his players, Kevin Jordan.  Tom gives five great tips for kidney donors.

Tom is doing great post surgery! He was back to work after ONE week. He must be in great shape. Kevin has already returned with his teammates to the field and threw out the first pitch in a game. He should be playing baseball this summer.

Here are Tom’s tips:

1 Educate yourself about the process.
The surgery is much less invasive than it used to be, since kidneys are removed laparoscopically in most transplant centers today. As a result, the recovery time is generally much quicker.

2. You can opt out, if necessary.
Understand that at any time during the process if you decide that you cannot go ahead with the donation, it is possible to opt out. Your recipient will be told by the medical professionals that you are not a match. This way, you don’t have to worry about letting the potential recipient down. Some people are scared to volunteer but knowing that it’s possible to opt out at any time if necessary may make them more willing to begin the process.

3. Know that the doctors look out for the donor’s health.
They absolutely will not let you donate unless they are confident that it won’t affect your life or health adversely. Kidney donors are very healthy people. You won’t get to the end of the donation process if there are any concerns about your health. Your team of doctors is dedicated to you and to ensuring that you’re going to live a perfectly normal life post-donation. They are completely separate from the recipient’s doctors.

4. Make sure to take care of yourself.
If you’re thinking about donating, proper diet and exercise are essential. I was in great shape and I watched what I ate beforehand. I think that’s one of the reasons I feel so good post-surgery.

5. Remember that this can be the most rewarding experience of your life.
The simple fact of restoring someone’s health through your donation is an incredible opportunity. I am so glad I did it and know that this act will stay with me for the rest of my life.

Go to List of Resources on Kidney Donation

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