The Transfer to UCSD

September 16, 2015

As you guys saw in our previous post, we got our transfer to UCSD. This was both preferred and necessary for my continued treatment. In the cytogenetic testing of my leukemia, an abnormal variation was identified, thus upping the potential complexity of my treatment.

So we got to SD with hearts full of optimism, I was battling another persistent high fever, and a fresh team of nurses who had no idea how to help us. The first night was so rough they transferred me to the department with the next higher level of care. I'm still here.

 

The frustration continued because the new doctors insisted on running their own diagnostics. This was necessary and understandable, but it meant that in the first four days I got nothing from my docs except repeating descriptions of the tests in progress and what they were hoping to find.

On a day to day basis, the goal is fever management. My pattern is to fight at least one big one a night. Drug-wise I get IV Tylenol on a strict schedule. Because it's given every 8 hours, It doesn't necessarily line up perfect with my fevers but the fetch is long enough that it's going to help some.

We abandoned using oral Tylenol because we found it much less effective. When we identify that I have a fever coming up--or fully raging--we have a super serious ice pack regimen. 1 in the groin, 1 in each armpit, 1 behind my neck and I just have to deal with it until my temperature comes down. This is where having effective and proactive nurses is essential.

Good nurses know exactly when the computer will authorize the Tylenol and have it hung and are just waiting to hit the go button on the IV pump. Good nurses understand that getting ice packs ASAP can keep my temperature from escalating from 103 to 105. Good nurses will avoid waking me up for arbitrary pill giving or blood withdrawals and will just wait until I'm awake anyway.

 

After a couple of nights of bad nurses we've had a string of good ones. It's probably because Dani went to the head of the department and had a discussion about everything that was unacceptable. I love that woman.

 

 

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