Hi My loveliest family and friends.
I only have twenty minutes to write this post before I'm sent back to la-la land. The last twenty-four hours has been challenging to say the least.
Last night, I received news from my nurse that a yeast infection has been detected in my blood and the doctor was coming right in. A new IV and sub-q line was run and we waited only ten minutes. The doctor explained that that yeast that lives in everyone's body has just bloomed and started in my blood. What they were uncertain of was whether it was only in my central line (where they primarily pull blood) or through out my whole body. In the end, on only real option was to pull out the line and start broad rand anti-fungals.
This is news is dreaded by every patient. While a fungal affection doesn't affect the transplanted cell themselves, it can cause enough damage to major organs to cause death. They are notoriously hard to get rid off.
Panicked and upset, I signed my consent. The doctor gave me a little sedative, waited thirty seconds, took out the stitches and pulled out the en-grafted line. I had nurses and Auntie Linda surrounding my bed but I don't remember much about the procedure.
Auntie Linda didn't leave until 11:30 pm last night and bless her heart has been with me all day.
I remember waking up several hours later fearful and unsure. A poor nurse had a hard time talking me down. Likely a combination of waking from sedation and extreme stress.
This morning I woke up feeling like a zombie. Everything hurt and I felt like I had been hit by an emotional mac truck. We changed my meds over to a continuous narcotic which I can add my own doses as needed. While this has been wonderful for the anxiety and pain (the mouth pain is horrid right now), also left me in a state of complete stupidity and non-functioning. Linda has pictures of me with a spoon of food half-way to my mouth but I'm completely asleep. My narcotic world and this world have nothing to do with one another. I always have to ask what I've said or what we are talking about.
Despite this, Linda set me about my normal day trying to get me to do normal things. Very difficult with a completely stoned person.
As well, my CT scan came back showing fluid on my lungs. I can tell. The volume on my breathing machine keeps showing a more and reduced race. Walking and deep breathing helps and so I continue to attempt that.
I tell you all this so that your not all worried about why I'm posting or answering emails, FB messages or phone calls. Linda has doing all the talking or fielding.
Two good things came out of today.
1.the first set my peripheral blood cultures is negative. Translation, in the early reporting from the blood taken from my body, NOT, the central line does not show the infection. We may have taken the line out in time to save my organs. The next couple of days will be nail-biting as we wait for the next results.
2. The nurses today how well I'm doing for my stages of transplant. They said many patients roll into the drug induced fetal position for three days. They are very happy will my focus, humour and determination. This encouragement is huge as it takes a tremendous amount of energy and will just to go to the bathroom. I truly credit this to Linda's support.
The nurses are back to put me into a haze. The anti-fungals need a lot of pre-meds and I need a lot of pain killers to take the premeds. I love you all so, so much. Keep on trucking with anything hard you have to do. I'm with you in spirit.
Hugs and love
E
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