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Transplant Athlete
Saturday, March 28, 2009
  RJ Rides Again

My Parents were down this week to help out while the Nephro tried to kill me, so my Dad and I took RJ for a new, larger bike. He loved the bike, until they rolled it out without the training wheels; I had asked Performance to take them off right before we left the store.

Yesterday, the weather was beautiful, so he put on his helmet and we started rolling around. I got some unsolicited advice on how to teach him, but "this is my kung fu and it is strong" and by the end of the day he was rolling around without support. He's still tentative, but another day like that and he won't need me anymore.

 
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Wednesday, March 25, 2009
  It's Probably Your Medication, It's Something You Did, It's Nothing We've Done

Last Tuesday, I went in to dialysis, but it had been one extra day past when I probably should have had dialysis. During treatment, my blood pressure dropped and I started to feel nauseous. I asked the Tech to stop the fluid withdrawal, even though we had a lot of fluid to take off, I soon asked the nurse to add some fluid from the IV bag. My blood pressure started to spike. A couple hours later I had driven my self to the hospital and I was getting meds to lower my blood pressure, it took them most of Wednesday to get the job done.

They kept me overnight Wednesday so they could dialyze me Thursday mornning. Dialysis at the hospital went fine and they discharged me later that day with a whole bunch o' blood pressure meds.

Saturday I went in for dialysis and after about 2 hours, I started feeling nauseous again. I knew it wasn't the fluid issue, but I'm not a Nephrologist, so I had no clue what it could be. NEITHER did anyone else at the dialysis clinic. I had been dialyzing fine for 2 months and now suddenly I have a problem. I had been told I could get an antiemetic to keep from vomiting, but the nurse was reluctant to give it to me until I started dry heaving. I passed out soon after I received the drug and woke almost an hour later. The nurse told me because of the drug, I couldn't drive home and she asked me whether I wanted an ambulance, cab, or if I wanted to call my wife. I called my wife and she dragged the 3 kids out to pick me up.

I spent Sunday on the couch popping antiemetics and trying to keep from vomiting. I had asked to come in on Monday to take some excess fluid off, but the Nurse told me I had to come in for a full treatment (she was mistaken).

Spending the weekend thinking about the problem, I think it may be the Dialysis solution got changed. I seemed to remember the doctor making some off-hand comment about changing my solution recently (but with my memory, I couldn't recall when). I also seemed to recall that the hospital used a "1k solution" (the solution is refered to by it's concentration - 1K, 2K, 3K). So, Monday morning, I had a discussion with the Tech about my dialysis "bath" or solution.

According to my records, as far as Davita was concerned I was on a 2K bath. The tech couldn't tell me when it was switched. I asked if they kept records of when switches were made and she said "no", the nurse just makes a switch depending on the results from lab tests. I asked to see my chart and then I had issues with my fistula and the next 40 minutes were spent with two Techs and a Nurse trying to get it to work. Luckily, they failed and I was scheduled for an angioplasty Tuesday morning.

I say luckily, because they had me on a 2K solution and the Tech wouldn't change it without the Nurse's say so and the Nurse said he'd "look into it". When I got home, I knew I'd need help, so I called in reinforcements and my parents showed up a couple hours later.

The angioplasty went well and I went in to dialysis later that day. My Tech for the evening, who we'll call Sam, had set me up with the usual, a 1K bath. She hadn't looked at my chart, so she didn't know I was supposed to be on a 2K bath. Normally, that would be a bad thing, but I convinced her to leave it. The Nurse on duty told me she'd order a weekly potassium to confirm the problem. I asked for and was given my chart. Once I flipped past all the insurance info and got to the medical stuff, there, on the first page, at the top of the first page was this " ↑ Δ 2K" This was dated 3/17/09. According to the Tech, my dialysis on 3/17/09 would have been set up as a 2K bath because of that note. AHAAAAA. SO that's what sent me to the hospital. I looked further back and found that I had been switched to the 1K bath back on 1/15/09. I finished dialysis Tuesday night feeling normal again. Hallelujah.

The moral of the story is that some of the healthcare professionals around you don't care why you are becoming sick. They have no motivation to figure out what's wrong. They'll treat the symptoms and go their merry way. You have to learn everything you can about your treatment and be involved. They would have happily kept ripping me apart with each dialysis session until my monthly lab results came back. I am angry.

Tomorrow I will write about something scary I learned from reading my records.

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Monday, March 23, 2009
  Dialysis Is Not The Solution

I think my doctor changed a component of my dialysis regimen and that is why I'm so sick after dialysis. My guess is I'm way too high in potassium after treatment and that's why I'm so nauseous. During Saturday's treatment, I got so nauseous that they had to give me an antiemetic, which of course made me too loopy to drive. ABL had to pick me up with all the kids in tow. I then spent Sunday on the couch, even popping antiemetics every 8 hours I still had a bucket next to me just in case. It looks like Monday may be spent the same way.
 
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Friday, March 20, 2009
  Belatacept

It looks like one of the trials for Belatacept will be finished in April of this year, but there are others that won't be completed until 2011. I can wait 3 more years on dialysis. According to another study already completed, Belatacept is as effective as Cyclosporine in preventing rejection.

Belatacept is purported not to have the same kidney killing side effects as Prograf and at least in the comparison against cyclosporine, blood pressures were lower for the Belatacept group.

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  New York Times Article

A self employed, 47 year old woman in California was on Medicare to pay for her immuno-suppressant medications to keep her kidney transplant from rejecting. Medicare only pays for 36 months of medication, so this woman like many other transplant recipients on Medicare must find some other way to pay for the medications, which in her case was $800 per month (mine would cost over $1,000 per month - if I was still on them). Medicare's reasoning is that after 36 months of treatment, the kidney is functioning fine and the patient is no longer suffering from ESRD.

ABL guessed that the woman wasn't able to pay for her medication and lost the kidney. Well, she hasn't lost it yet, but she will lose it soon.

It's clearly more cost effective for the government to pay for the transplant meds. I'm currently covered by my wife's insurance, but they only cover dialysis for 36 months. So, I'll have to go on Medicare eventually - Medicare will cover dialysis indefinitely. Medicare pays roughly $70,000 a year per person for dialysis. The transplant meds cost anywhere from $10,000 - $17,000 a year per person. That should be a no-brainer. Keep someone on their meds and Medicare saves close to $60,000 per year.

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  It's been awhile...

Ok. Here's an update.
My brother-in-law's father died a couple of weeks ago. Davita gave me crap about moving my dialysis so I could go to the Saturday funeral in New Jersey, so I ended up dialyzing on a Friday and then on Monday. While my sister and I don't have the best relationship, I do like her husband and his father was a nice guy, so I was willing to do what it takes to get to New Jersey.

The next weekend found us driving back up to NJ. My parents and I took RJ and Q (and their cousin Jake) to a St. Patty's Parade in Seaside Heights then we went on the Boardwalk for a while. We had a family party on Sunday for Doreen (cousin Anthony's GF).

This week, I switched back to my normal dialysis schedule and ran in to problems. I was going from dialysis on Friday morning to dialysis on Tuesday evening. I knew I had put on too much fluid up in New Jersey, so I tried to get to dialysis as quickly as possible on Tuesday. My blood pressure was so high, I didn't want to take it (plausible deniability)...Dialysis went as expected. We took off a lot of fluid and my blood pressure dropped down to normal with about an hour to go. I started feeling the effects of low blood pressure, so I asked them to add some saline back in. Then all hell broke loose inside me. I felt like I couldn't lift my head up, or open my eyes, and my blood pressure shot up. At the end of dialysis, they removed me from the machine and taped me up, and asked if I wanted them to call an ambulance. It took me an hour to stand up. They kept asking me if I wanted to call my wife to have her pick me up.

I eventually got in the car and went home, where I took my blood pressure medicine and increased my blood pressure patch. I was nauseous. I tried watching tv, but I kept falling asleep. Around 1am I checked my blood pressure and it was 250/140, so I told my wife I was driving myself to the hospital. She wanted to call someone, but...Here's my thinking:

  1. If I can drive to the hospital, I should (there's no reason to drag my kids out of bed or drag a friend out of bed to drive me or watch my kids unless it's an emergency and if it's an emergency see #2).
  2. If I can't drive to the hospital, then it's an emergency and she should just call the ambulance.

So, I just got out of the hospital...The Doctors spent Wednesday getting my blood pressure back to normal. The normal medicines weren't working, so they had to drag out the good stuff for my IV. I did get some killer pain meds in the ER, I think it was called Dilantin (I felt like the Human Torch), they also gave me an antiemetic to keep me from getting naseous. Mostly, I got sleepy. The good stuff in the IV drip (Sodium nitroprusside) eventually got my blood pressure down and I felt normal, but they wanted to keep me overnight to dialyze me the next morning. I missed my wife and kids, but I sucked it up and spent the night. After dialysis they discharged me. Thanks to my in-laws for coming down to watch my kids while I was in the Hospital.

 
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Monday, March 02, 2009
  Cookie Taster



Q and I had an amazing night out at the Pierpoint Restaurant in Baltimore. It was an alumni get-together for my Alma Mater, Stevens Tech organized by Dawn Madak. Chef/owner Nancy Longo, lead a class on cooking italian food. First she went over the recipes and Q quickly became bored and started flipping ahead "Dad, I already read that page..." Then Q started playing with the camera.

Soon we were supposed to break into groups to start cooking and Q was chompin' at the bit to get started. Q and I went to the Ravioli station.

"Put your back into it kid." (click for larger images).

She started out cranking the handle, as someone else fed the dough through, then Q would grab the finished product, place it on the table, spritz some flour over it, pat it down, and then move it to the side. She'd then repeat the process stacking as she went. Then we'd crank the rollers closer together on the pasta machine and repeat the process. After rolling the first two pieces to the final thickness. The dough went down on the table and started getting an egg wash and then the fillings. Q couldn't wait and kept pushing to get the other pieces of dough through the machine, but we had no place to put the finished pieces. She also got to use the ravioli stamper to cut the finished raviolis out of the strip.

She wanted to help out so bad, that she would wander around and stare at people as they were doing their tasks. I found her in the kitchen at one point watching them fry up the beef scallopine and another time watching them fry the prosciutto wrapped shrimp...I got her to stir the salad dressing as they were making it.
Q is also a budding photographer and took the following pictures(and also the first two):

When we finally sat down to eat what we had created, I was really proud of her because she tried a little bit of everything. After dinner, Chef Nancy asked for her little helper and Q sprang out of her seat. Chef Nancy melted chocolate for Bombolicino, while Q stirred an egg mixture. Then she had Q drop chocolate truffles into muffin tins. The eggs were added to a flour mixture, then the melted chocolate was added slowly to the mix, and then it was poured into the muffin tins on top of the chocolate truffles. While it was cooking, Q helped plate it. She spread Caramel sauce over the plates.
When the cakes came out and made their way onto the plates, Q started serving people, grabbing two plates at a time and handing them out.

Even though she tried a little bit of everything, she didn't really eat, so as soon as we got into the car, she yanked out a lunchbox that ABL had packed for the occasion and she started munching away.

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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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