Adventures of a Kidney Donor

October 20, 2012

The Curious Case of My GFR Rate

Filed under: Medical — by anne315 @ 4:43 pm
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Hang on to your hats because this gets a little complicated. I am NOT a medical professional so this is just for information and referral to other sources. Please consult a medical professional if you have this issue or are curious about it.

Glomerular filtration rate (GFR) is a test used to check how well the kidneys are working. Specifically, it estimates how much blood passes through the tiny filters in the kidneys, called glomeruli, each minute.  Older people will have lower normal GFR levels, because GFR decreases with age. Your age, race and gender are factors in determining what is normal. The traditional stages of kidney disease as defined by GFR:

OK, are you with me so far?

My GFR saga began one day a few weeks ago when my doctor called me. She didn’t like my GFR number–it was too low–so she wanted me to re-test but without fasting beforehand. Her theory was that maybe I hadn’t had enough fluids before the test. So…I re-tested and the GFR rate was still too low. Technically, my number falls in the stage 3 Chronic Kidney Disease (CKD) range. Well that sounds scary.

Her next sentence made me freak out a little. “We want to ultrasound your kidney.” EEEK. I pulled myself together and started to think. My doctor is great and I am glad she is vigilant, but general practitioners don’t always understand what a nephrologist would. Maybe we should talk to the kidney people. So she called my coordinator at University of Michigan. In the meantime I work at a library so I got my hands on as much as I could about GFR rate. A lot of what I read indicated that the GFR rate will go down for kidney donors but this doesn’t necessarily mean that your kidneys are failing. Often it will go down then back up. It is an estimated number. Also, you need to look at it in relation to other measures such as albumin and proteinuria  levels, your blood pressure and blood glucose.

My other kidney numbers are normal so my transplant coordinator advised to re-test in a year. I am taking this seriously, but I don’t think I am in chronic kidney failure. If kidney donors were experiencing kidney and heart disease in great numbers as a result of low GFR rates, we would have heard about this by now. Many kidney donors experience a drop in GFR, and there is some discussion that there is a need to re-classify  these numbers for kidney donors.

All pretty confusing. The lessons from this I think are:  Get your kidney panel tests done yearly. General practitioners (not their fault, just the nature of medicine) don’t always know enough about kidney issues so consult a nephrologist or your transplant coordinator if the numbers aren’t normal. Don’t assume that you have CKD but don’t ignore your numbers either.  Read as much as you can. Some helpful sources for me were:

Go to List of Resources on Kidney Donation

June 21, 2012

Beware Potential Donors: Ask Your Surgeon About This

Filed under: Medical — by anne315 @ 12:49 pm
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Florinda Gotcher

It must be acknowledged that sometimes there are complications for kidney donors as a consequence of surgery. They are rare, but can be tragic. Florinda Gotcher donated a kidney to her sister. Tragically, right after surgery she bled internally and passed away. This was because the clip that was used to close her renal artery had slipped off. These tiny clips are not supposed to be used in laparoscopic kidney surgery. I had read about this before my surgery and asked the surgeon if he used these clips to close the renal artery and he said no, he did not use them.

The manufacturer has sent letters to surgeons warning them not to use the clips in laparoscopic kidney surgery. The clip packaging has a warning symbol advising doctors to look at the instructions that come with a separate tool used to apply the clips. The instructions, which are typically not kept in operating rooms, state the clips should not be used on kidney donors.

From the CNN article:

To remove a kidney for donation, surgeons have to cut the renal artery They then have to close it back up again, or the patient would bleed to death. There are various ways to close the artery. Many surgeons use staples, but some use tiny surgical clips to hold it closed.These clips are considered safe to use in many types of surgeries, but not laparoscopic kidney donor surgeries. In donors surgeries, surgeons leave only a tiny stump of renal artery, and the clips can slip off. That’s what happened to Gotcher: when doctors opened her back up, they found the clips had slipped off the stump and were floating in a pool of blood in her abdomen.

The article on CNN about the clip 

So potential donors, before your surgery ask your surgeon what they use to close the renal artery. 

Bless Florinda for her donation, and my thoughts go out to her family.

Go to List of Resources on Kidney Donation

April 28, 2012

Recycled Organs!

Erwin, Ray and Cera, Courtesy: Northwestern Memorial Hospital

In 2011 Cera Fearing donated a kidney to her brother Ray, who has focal segmental glomerulosclerosis.  FSGS causes scar tissue to form on kidneys. Shortly after the surgery, it became clear that the kidney would have to be removed because the FSGS was damaging it and the transplant was actually making Ray more ill.  Lorenzo Gallon, Ray’s doctor, realized that the kidney could still be viable in another person.  He asked Ray how he would feel about it going to someone else. Ray didn’t hesitate, and the kidney went to Dr. Erwin Gomez, where it is now thriving.  Amazing!

I couldn’t believe this story when I heard it. It’s wonderful that organs can sometimes be saved after being rejected and actually be transplanted into someone else. A friend of mine has a brother-in-law who donated an organ to his brother, only to have it rejected.  What heartbreak. Even just a few years ago all was lost when something like this happened. This story shows us that there is hope even for rejected organs.

How cool when a recipient becomes a donor! Cera, Ray, Lorenzo and Erwin are ALL heroes in my book! I sure hope Ray gets another kidney soon. He is back on dialysis waiting.  Ray and Cera, you are generous beyond words.

Read the MSNBC article

Read the CNN article

The kidney walks are coming soon. Please give to one or participate in a walk in your area.

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
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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
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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

September 8, 2011

Keep Moving!

Filed under: Medical — by anne315 @ 12:00 pm
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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

September 1, 2011

Living with One Kidney

Filed under: Kidney Donation,Medical — by anne315 @ 7:57 pm
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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

August 26, 2011

Advice from a Kidney Donor

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


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 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

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