Adventures of a Kidney Donor

August 26, 2011

Advice from a Kidney Donor

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


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 20, 2011

My Big Kidney Adventure

Filed under: Kidney Donation,Medical — by anne315 @ 4:41 pm
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The picture at left was sent to me by my friend Mark. I love it!

Friday August 12, 2011.  3:30 am my sister Mary and brother-in-law Mike arrived to pick me up for the hour drive to University of Michigan hospital in Ann Arbor. I was nervous but had no doubts. In tow were a few personal belongings and copies of my living will and medical directives (I also had them on file with UM.)

5:30 am I went in for the prep.  My clothes went into a plastic bag and I got to wear one of those lovely hospital gowns. They give you socks to wear which oddly enough was comforting. My vitals were taken and IVs started. As usual, even though I was about to have pretty big surgery, I can’t look when they insert needles of any kind.

I met the anesthesiologist who told me what to expect.  He said that occasionally tubing will nick the inside of a patient’s mouth and my throat might be a little sore after.  He also talked about my nausea levels with anesthesia. I haven’t had much experience except for wisdom teeth extraction 30 years ago and I just remember it making me tired.  They administer some anti-nausea medication along with the rest of the drugs. My sister mentioned that my nephew got pretty ill when he had anesthesia administered during recent surgery, so they increased my dose.

7:45 am Good-bye to Mike and Mary for the time being. They must have administered the relaxing drug they give before anesthesia to me immediately because I saw the operating room lights and that’s the last thing I remember. I don’t even remember seeing the surgical team. Surgery started at about 7:45 am and lasted until 11:30 am. The head surgeon visited Mike and Mary at 11:00 to say that everything had gone well while the rest of the team finished up. See laparoscopic kidney removal for what the surgery was like.

12:00 pm I woke up to hear a nurse saying “Anne, Anne.” I kind of drifted in and out.  I talked to my sister and brother-in-law a little. I didn’t feel pain, I was just tired. My room was ready quickly.

Late afternoon The surgical team visited and said everything went well. They liked the looks of my vitals. They encouraged walking as soon as possible. Because of privacy they had to be careful, but they let me know that all recent kidney recipients were doing well. I was excited because it sounded like “my” kidney was doing well in its new home.

Evening My sis and I took a few laps around the hallway, with me dragging IVs and a catheter bag. The pain meds from surgery were still working so I was slow but it didn’t seem too bad. The nurses began talking of a possible Sat. release! I was on IV pain medication and had a morphine pump to self-administer pain medication at six minute intervals or more. I wanted to keep ahead of the pain so I hit the morphine quite a bit. They also give you an Incentive Spirometry device which is basically a simple plastic breathing machine. You breathe in and out of it periodically to prevent pneumonia and other pulmonary complications.

I had SCD’s on (sequential compression devices) stockings that automatically compress and release to help prevent blood clots.

Saturday August 13, 2011

Morning My vitals were all good. Around 9:00 they took me off IV painkillers and took away the morphine pump and I started oral pain medication. After a few hours I could feel that the oral pain meds didn’t keep the pain at bay as well as the IV and morphine. It wasn’t excruciating, but I could feel pain when I took a breath. I inadvertently started taking shallower breaths to avoid the pain so I got short of breath and a little panicky. In came nurses and three doctors. They took my vitals and all was well, my oxygen level was at 99%.

It was mostly psychological but I still felt short of breath and asked for oxygen. The doctors assured me that I didn’t need it. A savvy nurse saw the psychological benefit so she asked the docs if she could put my oxygen back in. When she did, my sis saw that it was dialed back to almost zero but the psychological effect on me was good.

Afternoon and Evening I had some family members visit and was chugging along. Food was a gross thought. I asked for anti-nausea medication on a schedule.  Some people don’t need it but I was feeling nauseous. I wanted the catheter out but the nurses didn’t like my urine output so they left the catheter on to keep an eye on it. A savvy doctor finally suggested it might be a positional problem more than anything else so she said to walk more. The last thing you want to do is walk, you want to curl up with your pain on the bed but walking helps a lot. Sure enough, after a walk the nurse was amazed at the urine output. My solitary kidney took right over and did its thing.

Sunday August 14, 2011

Morning The catheter came out and it was painless. (I guess for men this procedure isn’t always a breeze.) I had read that some people have trouble urinating on their own after a catheter has been in so I went into the bathroom with some trepidation. Fortunately, no problem! That was the last good news of the day.

Sunday afternoon My sis went off to get my anti-nausea prescription. I got dressed and was feeling worse by the second. I finally ended up in the chair by the bed in that awful state when you know you are going to throw up and you try to put if off. I knew when I did it was going to HURT because of my incisions. A really nice nurse sat with me. I did throw up and given that and no solid food for several days, I stated to shake. The doc didn’t want to send me back home in that state. By the time my sister came back to the room I was back in bed and re-connected to IVs.

Sunday night I left the TV on all night listening to reruns of “The Golden Girl” and “Frasier” for comfort. I was nauseous but not to the point that it was debilitating.

Monday August 15, 2011

Morning By complete coincidence I was sitting on the edge of the bed dutifully breathing into my breathing machine when the surgical team came in. The head of the team said “So, are you trying to tell me something?” He re-checked everything and said I was good to go. I was still queasy and weak but knew I would do better at home. We were trying to tweak the pain meds since the narcotics were making me nauseous. I went home on only Tylenol which turned out to be a mistake.

Noon My sister who is a SAINT had to manage me in the wheelchair and the bags down to the first floor for the one hour trip home. I was dreading it, praying that I wouldn’t barf in front of the entire hospital. Fortunately, no barfing.

Afternoon and Night When I got home I wanted to curl up with my pain but sis wisely talked me into a shower which really did feel good. Frankly I was gross. The Tylenol wasn’t taking care of the pain enough so I didn’t sleep well. Food was gross.

Tuesday August 16 We decided to switch back to half narcotic and half Tylenol to cut the pain better. The pain was better but I was still queasy. I walked like Tim Conway when he played the old man on “The Carol Burnett Show.” My sis was good about encouraging me to keep moving. My niece Ali turned 17 that day but we were all preoccupied so her birthday wasn’t the greatest. She didn’t complain. My family has been so great! My friends have been very supportive too.

Friday August 19  I felt things beginning to turn around. Food was no longer so gross. My niece Emma came over to watch “Paul”  (We are big Simon Peg/Nick Frost fans.) I had to hold a pillow to my stomach because laughing hurt. I was having a little coughing fit and was asking Emma for my pillow to hold over my stomach and I couldn’t get it out so it was like: “Emma get my pill…pill” Emma says: “Pills what pills???” Poor Emma, trying to help her decrepit aunt.

Go to List of Resources on Kidney Donation

August 11, 2011

K-Day is Tomorrow!

Filed under: Kidney Donation — by anne315 @ 8:51 am
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After almost a year and a half of yapping in this blog, it is finally go time! The next time I update this blog I will have one kidney and someone will have three. I am a little scared but in the normal range of scared. I am trying to think of it as a long nap and when I wake up I will be missing a kidney. I don’t have any doubts about going through with it.

Today I am enjoying a lovely diet of jello, chicken broth, tea and magnesium citrate. Probably no solid food again until Saturday. Hopefully I will lose a few pounds out of the deal which believe me, I could use.

I called University of Michigan to see what time to arrive tomorrow. My guess is EARLY as in 5:00 or 6:00 am because of course the recipient’s surgery immediately follows mine. I would like to get it rolling ASAP and get it over with.

Of course I am thinking about the recipient. He/she must be so excited! Their last dialysis (for hopefully at least the next 18 years or more) will be today or tomorrow morning. Wow, that is great! My biggest fear about this whole thing is that this person’s body will reject the kidney but I am trying not to dwell on that. Anti-rejection drugs have improved so much that rejection is less frequent than it used to be.

So my journey has come to its most exciting chapter.  It all started as a paired kidney donation for my dear friend Jackie.  She got a kidney in July of 2010 in a different way–hooray! Since there is a great need for kidneys and the surgery is easier than it used to be, I wanted to go ahead and donate anyway. It took awhile to find a recipient but at last one was found.

Kidney donor Sylvia Glaser sums up my feelings:

“People keep wanting to know why, why, why…It sounds very trite but you pass through this world, and what do you ever do that makes a difference?”

Yes! This is exactly it! I won’t make much of a splash in the world but at least I can do this.  I am so happy this person will be free of dialysis. Wish luck to the recipient and me.  Also wish luck to my sis and family who will be taking care of me. Stay tuned to this blog for my surgery and post surgery adventures. Talk to everyone next week!

 Go to List of Resources on Kidney Donation

June 28, 2011

Another Trip to U of M Hospital

Filed under: Medical — by anne315 @ 10:12 pm
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Today my sis and I went to the University of Michigan hospital. I had to have a repeat of the some of the same tests from May 2010 since it has been so long. I had blood and urine tests, an EKG, and a chest x-ray. Everything is looking good. I was shocked by the number on the scale when they weighed me. Eek, need to try to get that down before surgery. I ALWAYS say that.

The social worker talked to me again. They are very careful at every step to follow protocol to make sure that I am psychologically ready and they keep checking to make sure that I want to proceed. It’s nice that they look out for the donor so much. I am not worried about missing the kidney or anything like that. I am ready!

We also talked about me meeting or not meeting the recipient. When it is an anonymous donation, University of Michigan doesn’t have the donor and recipient meet before surgery. This is a good idea, if things go wrong i.e. rejection etc. the donor doesn’t know while trying to recover. I told the social worker I am fine with whatever the recipient wants to do. The hospital will handle communication between us instead of us communicating directly.  It looks like people usually exchange at least one letter after surgery. I am really fine with just knowing that someone out there in the world is free from dialysis. If meeting is too much for this person, no problem.  In a lot of ways I think it must be so much harder to be on the receiving end than the giving end. Chad the coordinator said the person is excited. Cool! I wonder if they are thinking “I only have a few more weeks of dialysis left.”

A nephrologist talked to me about living with one kidney. It’s pretty much like trying to live a healthy life for anyone, follow a heart healthy diet, exercise etc.  My primary care physician should do kidney function tests every year. One interesting thing he and the social worker both noted was that creatinine levels in people with one kidney may rise but they will still be normal. Sometimes doctors who are not nephrologists don’t understand why the creatinine goes up a little.  My sister and I noted how young the nephrologist looked, I am getting old!

The next step will be another physical about ten days before the surgery. The recipient will be there (we won’t meet) but they are going to match our blood again. I meet with one of the surgeons too. Woo-hoo, getting close.

I am soooo tired. Don’t know why.  I suspect lack of caffeine due to fasting today. Also, with all of the WONDERFUL restaurants in Ann Arbor I managed to pick the WORST Chinese food in town, Bummer! Sorry sis…

Go to Resources on Kidney Donation

June 13, 2011

Blood is in the Mail…Again

Filed under: Medical — by anne315 @ 10:29 am
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I hit the panic button last week because a blood kit arrived in the mail from University of Michigan. I thought the previous one was the last test and it was getting close to go time. Then ANOTHER kit arrived from the University of Toledo, so I thought:  “Great, everything has fallen through and we are starting at square one.” It has been 13 months since my big tests at U of M.

After playing out several scenarios in my head and feeling totally disappointed, I finally got a hold of Chad at U of M and he told me the last blood sample didnt yield enough cells for testing. That sometimes happens. The U of Toledo kit was a mistake because I am now in a one on one program instead of a paired one. So…

I hope today’s was indeed the last blood test before the big day! Actually, I don’t know if they run more tests once they determine we are a good match but if so, that is OK.

Go to Resources on Kidney Donation

May 18, 2011

Hope for the Wayward Kidney?

Filed under: Anne's Ramblings,Medical — by anne315 @ 5:26 pm
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Dr. Shuvo Roy and the artificial kidney

 Chad called from U of M and he thinks FINALLY he may have a good kidney match for me!  I have been yapping about this for a year and people will think I have been making it up so I hope this time it’s a go. I am trying not to get too excited yet. I will have one more blood test next week to make absolutely sure. Oh great, another round with the humorless phlebotomist who never remembers me at the lab! At least she draws blood well.

The thing that touched me the most is that Chad said the person is very excited! I am trying not to get TOO excited in case it falls through. What a cool thing if someone will be off dialysis. I have been thinking about this person all day. As they go to dialysis are they thinking “Soon I will be free of this!” Are they excitedly talking to their family? Wow.

In other news Kiersten (one of my kidney heroes) sent me this link about developing an artificial kidney to replace dialysis. 

The device, which would include thousands of microscopic filters as well as a bioreactor to mimic the metabolic and water-balancing roles of a real kidney, is being developed in a collaborative effort by engineers, biologists and physicians nationwide, led by Shuvo Roy, PhD, in the UCSF  (The University of California, San Francisco)Department of Bioengineering and Therapeutic Sciences…

 How cool is that? It is still years away but what an exciting concept.

 Go to Resources on Kidney Donation

April 21, 2011

Home for a Wayward Kidney?

Filed under: Anne's Ramblings — by anne315 @ 1:32 pm
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Chad called from U of M and is as frustrated as I am about how long this kidney matching business is taking. I had my big tests in May 2010 and entered the altruistic donation program last August after Jackie got her kidney in a different program. He asked if I would be willing to change to a list that isn’t a kidney donation chain, instead I will be matched with a list of people who have been waiting for a kidney for a long time. No chain involved.

Why not?  I am going to do it of course.  At least someone will get a kidney who needs it. It won’t be a “pay it forward” deal but that’s OK. Things should move along more quickly now because they will just match me to one person instead of having to line up a recipient plus another donor to participate in a chain. So…hopefully this Summer I will FINALLY donate.

I saw a news segment this week about a woman who gave a kidney to a stranger and they showed the man being able to swim with his kids for the first time in years. Sniff sniff! Hopefully I can do something like that for someone.

The bigger news is that Jackie is having one (and possibly both if time allows) of her older kidneys removed on Monday. Bummer that she has to experience both the putting IN and taking OUT of kidneys but she has a great attitude.  She wants to do everything she can to ensure the health of her new kidney (which has been with her one year this July.) She will do very well but we are both looking forward to this hurdle being over.

If you don’t know, most kidney recipients have THREE kidneys. The new one is placed in the front and the old ones are left in the body so that the recipient doesn’t have to undergo even more surgery. Usually the old kidneys atrophy and aren’t a problem but if they cause trouble after a transplant they are removed.

So good thoughts to Jackie for Monday!!! My hero!

Go to List of Resources on Kidney Donation

March 14, 2011

Blood is in the Mail!

When I got home on Saturday a box was on my porch. I hadn’t ordered anything so I thought: “Yippee, a birthday present!” It was a birthday present all right, a blood drawing kit for my kidney donation. OK, it wasn’t flowers but I will take it. Hopefully by my next birthday someone out there will be off of dialysis.

Today I had blood drawn for the new donation program I am in. It is with the Alliance for Paired Donation and the University of Toledo Medical Center. This is a bigger pool of recipients so hopefully I can give this kidney away. Who knows, but hopefully it will be late Spring early Summer?

No big deal, but the phlebotomist and I were taken aback by the number of vials in the kit. Yikes! I am used to U of M just wanting a few. U of Toledo needs to keep quite a bit on file to mix with potential recipient’s blood.

Another reminder that the Lansing Kidney Walk is Sunday June 12, 2011  Look for the kidney walks in your area. Come walk or donate to a walker! (Thanks to Kiersten for this info.)

Go to List of Resources on Kidney Donation

February 26, 2011

Will I Ever Get Rid of This Kidney?

Filed under: Anne's Ramblings — by anne315 @ 2:39 pm
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Chad from University of Michigan called and they haven’t found a match for me in the UM database. He suggested that I enter the University of Toledo Medical Center program. UT and U of M are partners in kidney transplantation. UT has been a pioneer in paired and altruistic donation so it sounds good.  UT began the first computer based computer kidney matching and they seem to be reknowned for kidney transplant surgery so I should be in good hands.

I hope the surgery will be at U of M and the partnering just means patients come from Ohio but if it is in Toledo that will be OK. It will be further for my family to drive but it’s not like it is across the country. We are lucky to have two good hospitals so close to us in lower Michigan.

I was beginning to think this was all for naught. I will find out more next week. I started my first tests almost a year ago so let’s get this kidney show on the road!

Go to List of Resources on Kidney Donation

January 21, 2011

No One Wants My Kidney!

Filed under: Anne's Ramblings — by anne315 @ 4:31 pm
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Not really, it just seems that way. Chad, the coordinator from U of M emailed and the kidney match isn’t a go. I know it’s best to have a good match rather than an iffy one but I am disappointed. There just isn’t anyone in the database for me at this time. Gee, sounds like a dating service! I know it will probably happen eventually.

Right now I feel like I am have been opening up my big yap for nothing. I figure I will wallow in self pity for awhile then get over it. I have no right to complain. The potential recipient has to go back to the drawing board and stay on dialysis longer. Why am I whining?

Go to List of Resources on Kidney Donation

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