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.