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Transplant Athlete
Friday, April 30, 2010
  Second Clinic Visit...

Went well. Creatinine 1.9, potassium is down, but still a little high (the docs prescribed a medicine for that), phosphorous is low (I'm supposed to eat more dairy).

I gotta tell ya, I'm feelin' good. I'm dyin' to get back on the bike, but I have to wait a little bit more.

The doc said medically speaking, I can drive, but legally speaking is another story. He explained it this way: If I were to get into an accident and the other person was completely at fault but got a good lawyer, that lawyer would argue that I just had major surgery and was under the influence of painkillers, so I should share 1% of the blame, but in reality, there's no 1%. 1% becomes 50%. So, I need to be off the painkillers for a good long time before I should drive. Wednesday was my last percocet (and it was only one around mid-afternoon) the rest of the day was tylenol. Ten years ago, they told me that they were worried about me applying brake pressure in an emergency stopping situation (but maybe with power brakes that no longer applies).

Which brings me to another point, I think maybe all that cycling raised my pain tolerance...When I was in the hospital, and in my right mind, I was applying the dilaudin every 30 minutes or so, but the pain management team suggested every 10 minutes...I really wasn't in that much pain. It sounded to me like they were a bit surprised.

 
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Monday, April 26, 2010
  Sunday Was A Good Day

I felt pretty good Sunday. My blood pressure had returned to normal; after having high blood pressure for so long, normal blood pressure felt dizzingly low.

Post transplant, we need to obviously take our medicine to keep from rejecting the kidney, but we also need to monitor our temperature (morning and night), blood pressure, Weight (daily before breakfast), and the amount of fluid we take in as well as the amount going out. If I was diabetic, I'd also have to monitor my blood sugar levels.

I'll keep up the monitoring until the clinic says stop. I have the same records from 2000; back then, I also wrote down details of my rides, when I was able to ride.

 
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Sunday, April 25, 2010
  Turned A Corner Last Night

My BP was a bit high last night, so I called the Post Transplant Coordinator at the Transplant Clinic. I am still in pain and I hadn't had a BM yet, so she suggested I take my meds early and then take Magnesium Citrate for the Constipation. I had ABL run out to get me the Magnesium Citrate and that did the trick.

The constipation back in 2000 was rough, this time it felt worse because I'm still really sore at my incision site.

After a good night's sleep, my blood pressure is down, I'm feeling better, and I wasn't waking up every half hour to pee.

 
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Saturday, April 24, 2010
  Recovery Is Rougher The Second Time Around

I tried to switch to Tylenol yesterday, but the pain is too great. I'm taking one percocet every 4 hours to keep the pain down. The pain was pretty intense last night. While I like the analgesic properties of Percocet, they come with a price (constipation), so the sooner I'm off the percocet the better.

I've also had a lot of abdominal swelling, the first time around, I was on high doses of prednisone, which took care of the swelling, but no prednisone this time.

I was up every hour last night peeing, I'd go back to bed and sleep until my bladder woke me up again. I'll be through this soon.

 
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Friday, April 23, 2010
  The Transplant Experience

It took a lot to get to this point. I started this process in November when my dad was tested and while he was a match, his kidney had some anatomical issues that made it impossible to transplant. My sister Clair was next through testing and while she had a kidney that could be transplanted, she inherited the antigens that I would now reject. My sister Heather got tested and she was an exact match (6 out of 6 antigens) to me, but like my father, she had some anatomical issues with her kidney. These issues were milder and just meant a slightly longer time to fix, so Dr. Jonsson approved the surgery.

at night on April 19th, we had to give ourselves enemas to empty our bowels and then we were NPO at midnight which means no food or water after midnight. On April 20th, Heather and her husband, Adrienne and I, and my parents showed up at the Inova Fairfax Hospital Surgery Center at 6am. Heather got called in first around 6:30am. So they could prep her and start working on removing the kidney laparoscopically. They make small incisions and stick tubes into her abdomen. I think they then inflate the abdomen and insert tools and a camera through these tubes. The camera allows the surgeon to see inside and the tools allow him to cut and stitch the blood vessels and ureter. In the past, I'd seen surgeries on tv where they suck the kidney out through one of these tubes (which may be the old way to do it), in my sister's case, they cut a small incision near her bladder and removed the kidney from there.

The kidney then goes into another room where they prep it for insertion in me; from what I've seen on tv, they clean off any fat and I think they flush it to remove any blood.

I was called in to the pre-op area around 7:30am, they took blood, inserted an IV, and asked me a bunch of questions and then had me sign a bunch of forms (Surgery is dangerous, anesthesia is dangerous, etc). The wait seemed crazy long. According to my wife they took me from the Pre-op area at 9:20 am. All I remember is being wheeled out of the pre-op area and then down a corridor that kept getting longer and longer, then nothing.

The next thing I know, I'm being asked to exhale I think and they pulled the intubation tube out through my mouth. They handed me a button to press for the pain, but I was still groggy from the surgery. I kept falling asleep, they would shake me awake, I'd press the button. So, eventually, they took the button away from me. Around this time Dr. Jonsson stopped by and told me that the surgery went well, Heather was fine and was on her way to a room. I was still really groggy at this point, so looking at the doc was like looking through a frosted window.

If I had one complaint about going in for surgery, it's that the surgeons always look fuzzy when they come to talk to me. I sure hope he didn't tell me anything really important then, because I don't remember it...

I was in the Post Anesthesia Care Unit (PACU). Here, there might be one nurse for every two or three patients, so they can give individual and immediate attention to each patient. My nurse was exceptional and went above and beyond the call of duty. This is also a change from ten years ago when I had my first surgery. After my first surgery, they would only allow the nurse to wet a sponge and rub it on my lips. But this time around, my nurse was serving me as much ginger ale as I could drink. I asked for water and she got me water. I asked for cranberry juice and she ordered it, but they were short staffed and so she eventually went down to the cafeteria and bought me three bottles out of her own pocket. I needed medicine and she went down to the pharmacy and got it personally. Adrienne showed up while I was still groggy and she says that was around 4:30 PM. She stayed with me for awhile and gave me a cell phone. I was told I had to stay in the PACU until 7:30 pm so they could watch me and make sure I was recovering ok. I was there until 11:30, but I didn't mind because my nurse was taking such good care of me.

They wheeled me up to my room on the 7th floor around 11:30 pm. The nurses there took vitals and asked a few questions, then they let me go to sleep. They woke me up at 4am for more vital signs. Later, the surgeon who worked on my sister, Dr. Piper came by for rounds and he told me that I had to do 150 laps of the 7th floor (He was joking because the nurses tell me that's over 13 miles). He said the most important thing was for me to get up and walk around, if I only did a handful of laps he'd have to keep me an extra day.

Getting up that first time is really difficult. With two nurses on either side of me, I sat up in bed and just sat there on the edge of the bed. My head was loopy. I waited a good long time at the edge of the bed. Then I stood up and shuffled into a chair right next to the bed. While I sat in the chair, the nurses stripped my bed. I then went back to the bed for a few minutes and the nurses moved my chair to the bathroom so I could clean up. I again sat up in the bed and then stood up very slowly and then shuffled over to the bathroom. I must have looked like George Burns, all hunched over and barely moving my feet, pushing an IV pole in front of me. It's around this time that you notice the foley catheter snaking out from underneath my hospital gown. When you're lying in bed, you don't really feel it, but once you start moving, it's banging around and snagging on things. It was heavily taped to my leg, but it would twist and yank. I sat down at the sink and cleaned up, the nurses gave me a clean gown to put on, then I went back to bed to rest.

Back in 2000, when I was first transplanted, it was really hard to accept. I thought, I'm healthy, I'm strong, I should be able to walk fine, I sat up in bed quite quickly and fell back into bed just as quickly. This time around I was under no illusions and took it easy.

I did my first lap of the floor, with the nurse by my side. She was an adventure racer and she was really curious about my long distance cycling. She was also going through a career change from firefighter to nurse. I stopped three times to sit down in a chair, I was a bit nauseous during that first lap, so the nurse brought me a bucket just in case. I stopped by my sister's room, but they told me she was unavailable. I then finished my first lap. Once that first lap was over, I was good to go for more laps. I managed to do 20 laps on Wednesday, a couple of them with my sister.

when I pressed the button for pain meds, I was administering Dilaudid, I believe this is what I had back in 2000. After the initial incident in PACU, I was only pressing the button every 30 minutes or so, I wasn't really in pain, but the nurses warned me not to get behind or I would be. One of the nurses who specialized in pain management encouraged me to press the button every ten minutes, but 30 was working well for me. The Dilaudid was starting to make me itch, so they were administering Benadryl, but that didn't work, so they tried another drug, that didn't work, so they administered an IV form of benadryl. Even dispensing the dilaudid every 30 minutes, I eventually was encountering itching so bad (this happened back in 2000 as well, but back then benadryl cleared up the itching), I had to ask them to switch me to another pain med. I asked for Tylenol, they said, "how about Percocet?"

Percocet allowed me to sleep and the itching evetually faded away. Thursday morning, I woke up around 6am and did another 5 laps of the 7th floor. One of the people who assisted on my surgery came by and asked how things were going. I told him about the 20 laps yesterday and the 5 laps today and asked if the foley catheter could come out. He said he'd check with his boss. Just before breakfast, he showed up with Dr. Piper. Dr. Piper joked that he heard I was ready to ride my bike. I told him I tried for 150 laps, but only got 20 in. He said he was going to discharge me as soon as my medicines came in from DC. He ordered the removal of the foley catheter, the IV, and the central line.

The foley catheter was more painful than I remember. It's held in place by a balloon filled with saline. So the nurse used a syringe to remove the saline, then she removed the tape that was holding the catheter to my leg. She started pulling the tubing out and I started screaming in pain, so she stopped and I had to yell, "keep going". In dialysis, the needles are very painful going in, but once they're in you don't really feel them. With the catheter, it was really painful coming out, but I knew once it was out, I would feel better. She finished pulling it out and I was really relieved. They were thinking of keeping me an extra night so they could keep the catheter in a little longer. Over the past 20 months, I've been producing very little urine, so my bladder had shrunk, they were concerned that I would have to urinate every 3 minutes if the catheter was out. Well, they were close, it's every 15 minutes.

Later that day, a student nurse and his instructor arrived to remove my central line. The student was making lots of mistakes and she kept instructing him to redo it...with my small bladder, halfway through the procedure, I really needed to go.

Heather and I were discharged at the same time. My dad made a couple of trips down to the car with all the things we had to take home. Then, around 1pm on April 22nd, Heather and I took the elevator down to the lobby and hobbled out to the main entrance. My dad drove us to my house, where I immediately went to the bathroom. Heather stayed in the car so that her kids could see her, but not jump up on her, then my dad drove her to her hotel so she could sleep. She is staying down here until Saturday, then she'll be going home to New Jersey. She'll have to stop every 45 minutes and get out and walk to avoid getting blood clots.

The donor always has it worse, when that kidney is removed, it takes some time for the other to realize it has to do the work of two kidneys, in the meantime, her blood chemistry goes a little out of whack. For the recipient, me, my creatinine started at 12 and dropped to 7 by Wednesday. By Thursday it was down to 4. It will roughly half each day. After a couple days it should settle out at normal. So for me, I started feeling better immediately.

I'm not on prednisone this time, so I don't feel as superman-like as I did in 2000, but that's ok with me. It came with some pretty harsh side effects (a 40 lb weight gain and I wasn't the nicest person due to the mood swings).

 
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Saturday, April 17, 2010
  Just A Couple Days Left

Met with the Surgeon yesterday. The only hiccup for Tuesday could be my blood pressure, so I called my nephrologist and they upped the dosage of Minoxidil (my hair hasn't been this thick in years). The last time I tried this dose of Minoxidil, I had a reaction, but I'll suck it up for three days if it'll control my blood pressure.

I had a late dialysis session last night and I left there with a pretty good blood pressure, I was able to get through the night without having to check my BP and swallow a bunch of meds, so I'm cautiously optimistic.

I've been letting my facial hair grow for the past couple of months, I'm going to have my daughter take some pictures, then I'll shave. The Surgeon warned me that it interferes with the anesthesia. I kinda like the hair on my chin, it came in full (thanks to the minoxidil) and I think it looks great, but my wife hates it.

 
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Wednesday, April 14, 2010
  Complications

I've obviously been suffering from pretty severe hypertension lately. I'm wondering if it could be the hepatitis vaccines they've been giving me at the dialysis clinic...
 
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Monday, April 12, 2010
  Small Change In Plans

I went in to the hospital Saturday night because my blood pressure was out of control and got out this morning. I was really worried the surgeon would cancel the transplant surgery because of my high blood pressure, so I asked my nephrologist if I could dialyze every day this week. That should lower my blood pressure and get me ready for next week. So...5 more dialysis sessions to go.

I had a pretty good dialysis session today, there was very little pain. On the drive home I was contemplating getting the word "Remember" tattooed on my lower left arm near where I get stuck for dialysis, but I'm pretty sure I'm going to remember how sucky dialysis is without the tattoo. Then I thought it should read "Never Forget", but that sounded too "Real Genius-y".

 
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Saturday, April 10, 2010
  April 20th

8 of the past 9 dialysis treatments have ended in excruciating pain and hypertension (and two ER visits). I got word that Inova Fairfax Hospital has accepted my sister's kidney as matching and transplantable and the surgery is set for April 20th. That means I have 4 barbaric dialysis treatments left.

Zinger, you can rest easy, Adrienne isn't going to steal your kidney and leave you in a tub filled with ice.

And here's a little bit of Star Trek to cause I'm feeling good now. Don't miss the little old lady a little over 4 minutes into the clip.

 
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Tuesday, April 06, 2010
  I Know, I Know...

Everyone's tired of hearing how dialysis sucks, how I'm sick again, and how I've been back in the hospital...Well, My sister, Heather, is down from New Jersey getting poked and prodded. If everything's ok with her kidney, this will all be over soon. 30 days soon.

 
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I've gone through kidney failure twice. The first time in 2000, my mother donated a kidney; and again in 2008, I'm on dialysis waiting for a breakthrough in immuno-suppression medicines before seeking a new kidney.

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Warning Signs for Kidney Disease:

  • High Blood Pressure
  • Burning or Difficulty when Urinating
  • Frequent Urination at Night
  • Blood in your urine
  • Cola or tea colored urine
  • Swellig of the eyes, ankles, or feet
  • Lower back pain unrelated to physical activity


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