Monday, July 21, 2014

Four Year Update

It's been a while! I just wanted to give you all a little update and let you know that I'm doing just fine and so is Debbie. My life is pretty normal. Here's a quick rundown.

Staying hydrated- I still carry my water bottle with me everywhere. I could probably stand to drink a little more water, but I do okay. If I'm having a cocktail, I always follow it up with a glass of water.

Exercise- I should do more of this! I have no issues with working out. Yoga is my preferred method, but I avoid hot yoga-- doctors orders. A good rule of thumb- if your sweating, keep a water bottle handy.

Pain- It's pretty much non-existent. There is no pain when I apply pressure like there used to be. Sometimes, if I haven't done yoga in a while and I'm doing an up-dog or cobra, I can feel that the area is tight, but it's nothing inhibiting and stretching is so good for the tightness.

Scar-Still there and ugly, but I rarely even think about it. I was just thinking the big one sort of looks like a belly button now. The other two are barely noticeable.

General health concerns- I don't take ibuprofin. At all. I've learned to deal with Tylenol, but rarely have to take it. I also watch my diet. I don't eat a lot of meat (though I'm a big fan of Five Guys Burgers), and I go very light on the salt most of the time. I don't eat much junk food or fast food (except Five Guys). I'm not a health nut, but I do prefer clean, healthy food.

The UTI scare- TMI, I know, but due to over-prescribed antibiotics for acne medication (about 5 years worth), my body became dependent on the antibiotics to fight of any stray e. coli. When I stopped the meds, all hell broke loose, and I had infections on a monthly basis for about a year. This had nothing to do with my lack of kidney, but since I only have one, it put me in a very dangerous and stressful situation. Frustrated with the additional antibiotics and temporary fixes I was being prescribed, I did major research what was happening inside my body (disturbing) and looked into natural remedies. I came across something called D-Mannose which can often be purchased in health food or vitamin stores. After taking it for about 6 weeks, I was cured. Just a note, because it's not a drug, major studies on this remedy are not funded and info is hard to find. But it is there if you look. I did find one source that suggested that large continuous doses may not be good for kidneys, but you don't need to take huge doses of the stuff.

Okay, so that's all for now. Thanks everyone who has sent messages and watched the videos I posted about the experience. If you have gone through the process, I encourage you to document it. Get in touch, and I'll promote your blog. I'm a firm believer in helping educate people about this process.

Monday, June 25, 2012

Two Year Update

It's been 2 years! Time flies! Yes, I would still do it again. Here's a quick update.

Staying hydrated- I was a little worried about my last check up because I know I haven't been drinking enough water, but my levels seemed to be fine. I just had a friendly reminder from the doctors that I need to stay hydrated. I lost my water bottle and what a difference it makes not carrying it around with you. I can definately tell when I'm not drinking enough. Dehydration comes easily. Solution? I bought a new water bottle. :) Also, if I'm drinking alcohol, I drink a glass of water for every other drink I have.

Exercise- The only thing I've been cautioned against doing is hot yoga. Naturally, this is because you are losing way more fluid than regular yoga. But I can run, do cardio and strength training, play sports, hike, swim, all that is fine, as long as I have plenty of water. I went through a long spell of being at the gym 5 days a week and was fine. I did some intense hiking in Utah last July and was concerned about the combination of heat and physical exertion. As long as I had water, I was okay, but I would suggest bringing a lot! I'm little-5'1", and I brought a gallon with me (hydartion backpacks and water bottles) for hikes that lasted usually about 4 hours. At points, I wished I had more.

Pain- I still have a slight sensitivity on my left side. It's not at the incision site. It's between the large scar and one of the small one inch scars. It's been suggested that it might be nerve damage, but it's nothing that intereferes with my daily life. I'm just careful with that one area. For whatever reason, yoga seems to help. The surgeon suggested that stretching is good for it. Also, the pain is not bad at all. It's more of an annoyance if, for example, the cat jumps up my stomach. It seems to be something I feel when there is a lot of pressure on it or when I'm stretching it out. It's not constant by any means and not something I'm constantly aware of.

Scar- My scar is not pretty, and it's very noticable (see "Healing and Reflection" pictures or "One Year Update). At my last check-up with the transplant team (last month), one of the doctors looked at my scar and promptly excused herself. When she came back, she said, "I just want you to know that I spoke to the surgeons about this, and they are working on better solutions to reduce the scarring." Well that was vague. But I'm glad to hear it. I think I've come to terms with the way it has altered bathing suit season but it's not always easy. I have had several people tell me I should get plastic surgery or sue my surgeon. One little boy at the beach took one look at me and said to his dad, "Daddy, I don't like that girls belly." But alas, it is a small price to pay! (She is doing fantastic two years later, by the way!) I know that not all the scars from these surgeries look like mine. Some are in different locations or don't look nearly as noticable.

Other than those issues, I operate like a normal and healthy human being.

Also, by posting this blog and my videos, I've met plenty of people going through the same thing. One of these great people is Laura P who has just posted an excellent blog about her experience. It's really thorough and helpful. As I read it, it brought back very vivid memories of this whole journey. Some made me laugh out loud and others made me cringe. If you are looking for more info and another perspective, I encourage you to check out her blog.

Wednesday, June 1, 2011

One Year Update

June 2, 2011

I had my one year check-up last week. Everything went well. The doctor reminded me of a few important things: I need to be drinking at least 2 liters of water a day, and I shouldn't be taking any of the ibuprofin drugs like Advil or Motrin. Only Tylenol. Done. He said that I don't really need to change my diet, though I already have changed it quite a bit.

I have been trying to stick to a kidney friendly diet which is low in sodium, potassium, and phosphorous, includes alot of fruits and vegetables, and uses proteins from fish and beans rather than meat. (NKF nutrition page.) My favorites on the "good list" are sweet potatoes, red bell peppers, garlic, onions, cauliflower, apples, and berries. Not all fruits and veggies are fair game, though. We are supposed to cut down on regular potatoes, tomatoes, oranges and bananas. There are plenty of great Indian recipes that fit this kind of diet. I drink mostly water. I replaced regular milk with soy or almond milk. I hardly ever have fruit juices; if I do it's lemonade and an occasional orange juice if I feel a cold coming on. Alcohol, of course, needs to be limited as well since it dehydrates you. My transplant coordinator said "one a week, give or take. And always drink an equal amount of water with it." Caffeine and protein drinks should also be limited. I don't drink them at all, but you can get away with a cup of coffee in the morning.

Scars one year later

Ok. Back to the update. While I was scheduling my next office visit, I met a donor who was there for his 3 month check-up. He had donated to his mother who was doing great. We compared notes. We both noticed a change in our ability to regulate body temperature. This was something very evident the first week of recovery. For me, if it is slightly cool, I feel like I'm freezing, and if the temperature is over 70 I'm sweating. He said he felt overheated too. I mentioned it to the doctor; he didn't think it had anything to do with the surgery. Maybe it doesn't, but we both noticed it. 

Scar 3 months after surgery

Prior to surgery, we had both been running, and after surgery we had both gained a bit of weight. There was another younger female donor, also a runner, who had gained weight as well. This is probably due to the fact that you really have to slow down for a couple months. Because you aren't as active, your metabolism can slow down as well. For me, this was a crazy year for my weight. Before surgery I was 112. When I left the hospital I was 102, then steady at 104 for about 2 months, then 4 months later I was 121. I'm at 116 at the moment thanks to diet and exercise, but still have 4 or 5 to go. Now, the 20 pounds is not all attributed to my surgery (more to my recent love of food/cooking and a brief muffin-making fixation), but there were some complications that certainly didn't help.

Three months after surgery (August) I was still having quite a bit of tenderness near the large incision. It was sensitive to the touch. My exercise routine was getting back to normal; I was even jogging. I was doing alot of ab and cardio work to try to lose the "pouch" that had developed from not using those muscles. It seemed like the pain was not going away. In October I checked in with my surgeon. He said that the area was in constant spasm and that whatever ab work I was doing, I needed to totally stop and lighten up the exercise. He suggested I do some yoga to slowly stretch the area out. This slowed down my calorie-burning momentum. I took a beginner yoga class once a week, which didn't seem to do much for the sensitivity or my waistline.

I had my 6 month check up in December, which was a bit of a disaster. When I told the doctor examining me about the sensitivity, she started pushing on different areas of my stomach. There were two separate areas that produced an audible yelp. I don't normally push on my stomach like that and was completely unaware that the other pain existed. The doctor was concerned more about that pain and thought I might have a hernia that kept coming and going. I had a CAT scan a few days later to check it out.

They found no hernia, but thought that my intestines might be telescoping in on themselves. This apparently is a very bad thing that usually only happens to infants. The transplant coordinator called me as soon as they got the results from the CAT scan to see if I was feeling ok. She said usually if you have this condition you are extremely sick and throwing up. But I felt fine.
I saw the surgeon. He showed me the results of the scan and explained that in addition to this questionable area of my intestine, I was also completely "backed up" (literally FOS). This was strange to me because I was going to the bathroom very regularly. He thought that I might not be drinking enough water and recommended that I add more fiber to my diet. He ordered an upper GI tract study two days later to check out the intestine and noted that the fluid I would be drinking would also "clean me out".

If you have not had a UGI study done, it's a pretty crazy game of Simon Says. I had two very young (nice) doctors explaining the "directions" to me with a very intense tone in their voices. It basically consisted of quickly drinking huge amounts of carbonated and disgusting liquids while flipping/rolling around in every possible direction, all very carefully timed and choreographed. The liquid lights up your insides and shows the doctors how everything moves through your intestines.

The study came back normal, and I went back to the surgeon. No one ever really said anything about the newly discover pain (which is gone now). He concluded that the sensitivity I had been feeling all along was nerve damage from the surgery. Some nerves had possibly gotten caught in the scar tissue, or something like that. The only way to really fix it was to open me up again.Without hesitation I told him I would rather deal with the sensitivity. He suggested more yoga.

That was six months ago. I took his advice about yoga. I substituted my once-a-week beginner class with more intense classes three times a week. I can still feel a sensitivity, but it does feel better. I also resumed normal exercise--cardio, abs, etc.

I feel great. The only difference I notice, besides the temperature thing and slight sensitivity, is being thirsty and more aware of dehydration. I have been very healthy and don't feel like missing a kidney will slow me down. Obviously your body needs time to adjust, and I think you have to be prepared for a few months of strangeness and doctors visits. But one year later, my kidney is able to do the work of two.

As for the missing kidney, it is also working just fine. Debbie is doing great and has alot more time to enjoy life. What a wonderful thing to be a part of! 

One last thought for this update...I was talking to the transplant coordinator about the amount of transplants they had been doing lately. She said that there are many people who want to donate but most people aren't healthy enough. We usually think that our health doesn't affect anyone else. Here is a case in which being unhealthy keeps people from being able to help another person, in many cases a loved one. So there's my plug for being healthy.

Sunday, August 22, 2010

A Long Process

Last July (2009), during my visit to a nephrologist (kidney doctor), I explained that I was trying to donate my kidney to someone who had been on the waiting list for 8 years, at that time. The doctor was shocked to hear that she had been on the list so long and explained some statistics to me. He said that the number of people on the waiting list for a kidney for 1-2 years is about 20,000 nationally. Those waiting 3-5 years are closer to 15,000. After 5 years, there are about 10,000 people. “These numbers seem good, right? Like there are fewer people who have to wait that long for a kidney,” he said. I agreed. “What you don’t understand is that this number decreases, not because all these people are getting kidneys, but because many of them don’t make it that long. You need to realize that you are saving someone’s life.”

My friend’s mom Debbie had complete renal failure after a delayed diagnosis of Wegener’s disease, a rare autoimmune disease that attacks all systems of the body. She was able to take medicine to get the Wegener’s under control, but not before her kidneys shut down. She was put on the transplant list and started dialysis treatment for 3 hours a day, 3 days a week.

I had heard my friend talk about the situation, never with too much detail, but another friend Cindy and I would ask about it from time to time. We knew Debbie was on the waiting list for transplants and that there had been no donor matches. In the back of my mind, I wondered if I should get tested, but kind of dismissed the idea, thinking I would never be a match since I wasn’t related, and I didn’t even know my own blood type. Still, the thought kept crossing my mind. Cindy was feeling the same way.

In December 2008 Cindy and I went to see the movie Seven Pounds, the story of a man trying to reconcile his mistakes by donating all of his organs, including his heart (which of course results in his own death) to save other people. Yes, it was depressing, but it brought the idea of a living donor transplant to the surface of discussion for Cindy and me. She immediately started doing tons of research, reading articles and books, talking to donors and the National Kidney Foundation, all along informing me of her findings and forwarding articles to me. We learned that being related wasn’t a requirement, that donating your kidney was relatively easy to recover from, that the other kidney would grow to replace the function of the lost kidney, and that a donation from a living donor had a much higher success rate than that of a deceased donor.

We were interested. But we still didn’t know our blood types, which would be the first step in eligibility. So we ordered a home testing kits. We were both O+, the right type for Debbie. Cindy decided she was going to take the next step and filled out the paperwork for tissue matching by our regional transplant team. She was tested in March 2009 and was devastated to learn she was not a match. She said she had felt all along that she was doing the right thing, but couldn’t understand why it would result in failure. The transplant coordinator explained that finding a match for Debbie was exceptionally difficult because she had so many blood transfusions and surgeries that her body’s “profile”, made up of pairs of antigens, had become more difficult to match.

But Cindy’s efforts were not in vain. The research she had done was something she included me in, and I was now considering the possibility of being tested. I might not have come to this point if she hadn’t taken the initiative. In April 2009, when Debbie had been on the list for almost 8 years, I was tissue-typed. I didn’t tell anyone I was going since I knew the results were likely to be a disappointment. I had decided that if I was a match, it would not be by accident. A few days later, I got a call saying that I was a 5/6 match, which means that 5 out of 6 of my antigen groupings matched Debbie. A 6/6 match is the best and usually shows up in 25% of siblings who are matched. So as the transplant coordinator said, it was incredible that I was a match. She was so unsure about it that she ordered a second round of more detailed testing along with my cross matching, just to be sure. Again, I was a 5/6 match and my cross matching determined that her cells would not attack mine which meant we could move forward with the process. (

When I got the news, I was excited and a little nervous. So far, I had told no one, but in order for me to continue the process, the transplant team requested that I tell Debbie. I wanted to remain anonymous because it would be easier for me to deal with. I had to decide if I was ready and willing to go through with this or not. Like I said, at this point I was convinced it was not an accident, it was a God thing or something like that. I told my husband, my friend, and Cindy, and all were very supportive. I had a harder time convincing my family, especially my mom, who was convinced I was going to ruin my life. My dad and sisters warmed up to the idea gradually.

I told Debbie I was a match the week before Mother’s Day, and with her permission, the intensive testing process began. I was scheduled for about 5 hours of donor education and testing at the hospital including blood work, EKG, chest x-ray, psych eval, etc. Then began a series of visits to radiology, urology, and nephrology to make sure my kidneys functioned well.

There was a lot of testing involving pee. A pregnancy test every time I had blood taken. On three separate occasions I collected my urine for 24 hours and kept it on ice. This included one day that my friends and I participated in the Kidney Walk, and I had to keep the brown jug in a cooler. Typically you only have to do this once, but one time the lab had made a scheduling mistake, and another time my creatinine levels were a little low. For another test, a lasix scan, I was pumped full of fluid until my bladder felt like it was going to explode and then made to wait 15 min until my kidneys fully flushed all the liquid. I have never had to pee so bad. I was convinced I was going right there on the table. Another test injected some chemical that made it feel like I was peeing, but wasn’t. They warned me first. It was mostly a warm sensation, but very weird.

From all those tests, they determined that my left kidney, which seemed to have slightly higher function, would be the kidney that they were taking. My nephrologist, the one I mentioned earlier, recommended that they take the right kidney and leave me the higher functioning one. But the results of other scans made that an unlikely option. I am one of 10% of people who have more than one artery connected to my kidney, which makes surgery a little trickier because the arteries are smaller and there is a higher risk of clotting. They said that the tests showed I had three arteries on my right kidney and two on my left. The left would be easier to take, and the doctors were more likely to be able to do the surgery laparoscopically, saving me some recovery time and a foot-long scar. I guess if you’re going to give someone a gift, you might as well give them the best you’ve got.

The tests seemed to take forever. I was hoping for a surgery in early June, then July. In late July, Debbie had something like a TIA, a mini-stroke. The doctors were unsure what caused it which slowed the process to a stand-still. I was still hoping for a late August date when we met with her surgeon the first time. My husband, sister and Cindy were with me. We thought we were finally getting the ok, but instead, the doctor laid out a solemn case for us. He didn’t know if the odds were in our favor, thought the procedure very risky, and needed Debbie to do more testing in any case. He wanted to make sure I understood that though there wasn’t an increased physical risk to me, the emotional risk would be much higher because there was a good chance it would all go wrong and she could die on the operating table. They said she had a clotting problem and when combined with my smaller, multiple arteries, there was a bigger risk to her. It was a very emotional meeting. Tension permeated the room. My sister asked me to reconsider.

When faced with this dilemma, I had to reevaluate what I was doing. I wanted my friend’s mom to live; I didn’t want to be the cause of her death. For Debbie, it was a risk she was willing to take. Throughout the whole process, she was convinced that this was her miracle. The mere fact that I was a match was proof enough. I was amazed at her strength. She was always speaking positively, in faith, despite the doctor’s gloomy forecast. If she and her family were willing to risk the physical outcome, I would risk the emotional outcome and hold to the conviction I had at the beginning of all this. This was no accident. God was somehow orchestrating these events. It was a leap into the unknown, for sure, but that’s what faith is about.

We met with the surgeon several more times, each time thinking, “This is it,” only to be given a list of procedures Debbie needed to have done before we could move forward. They were stalling. I was angry. At the end of April 2010, over a year into the process, we met again. And as usual, Doctor Gloom-n-Doom (who I later grew quite fond of) was repeating to us the same risks we had heard every time. He said, “I need you to tell me you understand these risks and still want to proceed.” Debbie said she was willing, to which he responded, “I know you want to go through with this but I need to hear it from her.” I was ready. I had been in this for a year and was not backing out now. My mind was made up. I proceeded to unload my frustrations on him at the constant delay in the process. I think he really did need to hear that. The transplant team told me later that they could read the aggravation on my face. He acknowledged that they had indeed slowed the process to make sure I was ready. The doctor said, “One more test.” Then they would meet again as a committee and let us know.
Debbie had the test 2 days later, with good results. I received the call the following day that surgery would be scheduled for Monday, May 10. Ten days away.

Pre-op was the Tuesday before surgery. We were there from 8am-3pm. 16 viles of blood, pre-op teaching, meeting both surgeons, filling out more paperwork, and meeting with the anesthesiologist. Long day.

Day 1 4:44am

Monday, Day 1

4:44 am- I feel good. Ready. I thought I would have more anxiety, but I even slept well last night. I guess this is what they mean by “peace that passes all understanding.”

I got up to shower at 4 since I won’t be able to wash my hair for a while.(!)

My stomach is grumbling already. I was only allowed to have clear liquids since yesterday afternoon in prep for surgery. Also, they have had me on stool softeners for 3 days...

Day 1 5:43 am

5:43 am-Follow the blue line for surgery. In pre-op checking in. I still feel good.

Day 1 6:04am

6:04 am-I’m in a bed now in pre-op. I’m wearing a beautiful green and blue gown with easy-access and a great blue hat made of coffee filters. Plus I get some great socks with grips on the bottom. I’m saving the hat for later.