Living with One Kidney

From: http://www.kidneycancerinstitute.com/lab-radical-nephrec.html

I wish this was me but I am not this thin! Anyway, this gives you an idea of what laparoscopic scars looks like over time. It’s amazing how small the incisions are. When I look at my largest one I am amazed they got a kidney through it! Kidneys are pretty small.

Recovery is going more slowly than I anticipated. I get winded when I walk just a mile, get a sharp stitch in my left side off and on, and it’s hard to sleep because I am not comfortable in one position very long. I guess from all that I read I thought I would be further along but I am not following my own advice of not comparing myself to others.

A lot of people have asked me what my restrictions are since I only have one kidney. They assume that I can’t drink alcohol, have to have a special diet etc. Not so.  Long term studies have shown that kidney donors live as long or even longer than the rest of the population.  Yet there are things to monitor. So here is a summary of life with one kidney, taken from these sites:

The National Kidney and Urologic Diseases Information Clearinghouse 

National Kidney Foundation 

Living Donors Online

Physical effects: When one kidney is removed, the single normal kidney will increase in size to compensate for the loss of the donated kidney.

Possible effects of a solitary kidney: 

• High blood pressure. Many people who lose or donate a kidney are found to have slightly higher blood pressure after several years.
• Proteinuria. Excessive protein in the urine… People are often found to have higher-than-normal levels of protein in their urine after they have lived with one kidney for several years.
• Reduced GFR. The glomerular filtration rate (GFR) shows how efficiently your kidneys are removing wastes from your bloodstream. People have a reduced GFR if they have only one kidney.
• You can have these conditions and still feel fine. As long as they are under control, they will probably not affect your health or longevity. Schedule regular checkups with your doctor to monitor these conditions.

Follow-up: Every year get a urinalysis and have your blood pressure checked. Kidney function should be checked (creatinine levels and GFR etc.)

Diet: A heart healthy diet is recommended, basically the same recommendations for everyone. Eat a lot of fruits and vegetables and high fiber foods. Limit salt and fat intake. Avoid fad high protein diets since too much protein stresses the kidney.

Medications Avoid NSAIDs such as Aleve, Motrin, Advil and aspirin. These pain relievers are hard on the kidneys. Use acetaminophen (Tylenol) only.

Activity: Some professionals suggest that people with one kidney should avoid contact sports. Anyone with a single kidney who decides to participate in these sports should be extra careful and wear protective padding. Then again, one study indicated that motor vehicle collisions and bike riding accidents were more likely than sports injuries to seriously damage the kidneys.

Pregnancy:  Pregnancy is possible but is usually not recommended for at least six months after the surgery.

Occupational Restrictions: Some branches of military service, police and fire departments will not accept individuals with only one kidney.

Go to List of Resources on Kidney Donation

Advice from a Kidney Donor

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

My Big Kidney Adventure

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

So Now I Have One Kidney…and Someone Out There has Three!

Too tired to do a full play by play of my kidney donation but I will soon. The BEST news is that it looks like the kidney recipient is doing well!!! The docs and nurses have to be careful because of HIPAA Privacy but were able to tell me when I was in the hospital that “All of the recent kidney recipients are doing well.” Hurrah! I am so happy that this person’s life has changed.

Last Friday I had my surgery at University of Michigan hospital. It went well and I was released Monday. My vitals etc. were so good on Fri. that they were even talking about a Saturday release but I am glad that didn’t happen.  On Sunday after a not very fun bout with nausea, the doc looked at me pathetically hunched over in my “going home” clothes clutching my throw-up basin. She slapped me back in bed and re-connected my IVs.  My release was rescheduled for Monday. I have had some trouble balancing the pain and the nausea from the Vicadin but tonight I feel a little better.

I wasn’t expecting to be so whipped so on Monday and Tues I was pretty discouraged and sick.  No solid food for a week and nausea hasn’t helped. I am definitely on the road back to normal and need to be patient.

Many thanks to my caregivers, my sister Mary and my brother-in-law Mike who went with me to the hospital. Poor Mary has had to babysit me day and night ever since. She threatened “Baby Jane” but so far no rats have been served. My brother John and sister-in-law Sarah hosted Mary in Ann Arbor so thanks to them.  My nieces Emma and Ali and my nephew Jack visited at home and in the hospital and Jack even brought over Yahtzee the night before to get my mind off surgery.  Had a nice visit from my mom and stepfather today.  My dear friends Jackie and Doug and their son, my godson Justin visited me in Ann Arbor to give support. Thanks to everyone for their well wishes!!

More later.

Go to List of Resources on Kidney Donation

K-Day is Tomorrow!

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

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