Questions for the Kidney Donor

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!!!

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

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!

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

Living with One Kidney

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

Getting Your Ducks in a Row*

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.