As I was trying to fall asleep last night the words “numbers” kept circling. I decided it is time to talk more about my hospital stay, since numbers are everything.
When I am admitted the over-arching goal is to get my PICC placed and start my antibiotics to get my “levels.” The PICC line is the most effective way to annihilate the bacteria since it is placed directly into my heart, killing it at its’ core.
If someone listens to me carefully, one might hear me say “Kill, kill, kill.” I, of course, am talking about my beautiful, magical medicine and what it is doing to the bacteria that has created such havoc, such exhaustion. I don’t say it aloud much, but inside I say it.
People often say “I am sorry you have to be here.”
I say, “I am here to get healthy,” (“Kill, kill, kill”).
My “levels” is the exact dose, strength of the medicine to obliterate the bacteria in my lungs 24 hours a day factoring in my metabolism. Too little won’t be effective and an overdose isn’t good either. The medication is hard on my kidneys so a perfect level where I have enough medication in me to do the job without hopefully hurting my kidneys at the same time is optimal.
The pharmacist is the captain of the ship since what he or she says determines how long I am in the hospital. The levels are usually complete over 2 cycles of 24 hours if all goes well.
Hospitals have two languages: medical language – but more importantly, numbers.
On admission, blood draws is done to check all my organ systems. My potassium is a little low so the doctor hands me a strange little orange drink, some liquid potassium to drink. On any other day, I am sure I would have lived with my potassium being a little low. Yum.
When I start my antibiotics is key because that dictates how little sleep I will be getting the first night. Once admitted it is one antibiotic after the other –
The schedule is as such at home:
Antibiotic #1 – 7am (three times a day, every 8 hours)
Antibiotic #2 – 10am (twice a day, every 12 hours)
Antibiotic 1# 3pm
Antibiotic #3 6pm (Once a day, every 24 hours)
Antibiotic #2 10pm
Antibiotic #1 – 11pm
There is some flexibility with the times. I can do 6, 2, 10pm for the one, but 6am is early. If I do 8am, 4pm, 12 midnight that I am up until 1am since most doses take a full hour. Then the other times you have to adjust. The best way to adjust the times is bump one of them a 1/2 hour to an hour a day, but jumping a new schedule overnight will mess up the proper dosing with my metabolism. By the second week I believe my 6pm dosing was closer to 8pm. It is also nice to give my kidneys a break instead of hitting them hard all at once.
The first night I begin my first medication after 8pm. It is late, so I will up for a while. I have a chest x-ray around 11pm, change of shift, so I still have one more antibiotic once I return from my x-ray. There are delays in the pharmacy dispensing my medications, to be expected, so I finally shut my eyes after 1am.
The nurse comes in to do my vitals and my temperature spikes to 101 degrees and my white blood count jumps to 15,000, normal is 10,000. My body is working to fight the infection, all guns blazing.
She connects saline to my PICC and honestly I think every hour checks my temp. By 5am it is normal again. In effort to break the temp, I put on heavy pajamas and socks to sweat it out. If I did not get my temp down it was going to be a big deal. That first night I got maybe 3.5-4 hours of sleep with interruptions.
Second day – all day of drugs, visitors, eating. The first knock is between 6:30 and 7am. I am up and dressed before that. I wait for the sugar lady and then I dash downstairs with my IV pole sometimes and a mask to get a huge breakfast and coffee. The hospital cafeteria cooks up a mean omelet, bacon, potatoes – delicious.
The diabetic sugar checker lady keeps knocking at my door coming in to bother me. She pricks my fingers many times, and eventually I say “I am done.” Dr. S. cancels the orders. Every time she comes in I just finish eating, or am eating. “I am hungry.” I am fighting infections. My stomach has no bottom. As the sugar lady so kindly says, “It is 10pm.” “Yep – I am hungry.”
This was one of Dr. S’s only times to get real-time blood sugars on me since I refuse the annual glucose test. Although, they get my annual AIc blood glucose level which is 5.0 – perfect, but the team is always reaching for more.
Finally at 7pm – the last case of the day, I am going to get my PICC placed! My IV in my hand is becoming quite painful so this is a huge blessing!
Although, placing the PICC is much less fun this time. I have developed scar tissue from the last entrance into my arm. The PICC team works in pairs, use an ultrasound machine, cover me with sterile drapes and then they place the PICC bed side. They draw on me with a Sharpie and do some measurements, from the entrance of the catheter to my humerus then my humerus to sternum, something of that nature. They get their numbers.
The nurse numbs me and punctures my skin. He begins to feed the catheter in with the wire having some difficultly making the turn in my brachiosubclavian artery (artery form your arm, to your collar bone, going into your heart, essentially the curve). He tells me to move my head up, down, straight ahead, to my left, to my right, several times to make the curve. Depending upon where my head is it opens or clenches my artery. I suddenly hear, through my right ear, the wire slide inside my body. As I do he says, “You are going to hear the wire.”
“Yep. Just did.”
It is a bit unpleasant and something I would be happy to not experience again, although I am sure I will.
He slides it around and supposedly we are in.
A portable chest x-ray confirms! Yes! And now the IV can come out and the real killing can begin.
That night I got an almost uninterrupted 5 hour stretch of sleep. This is monumental for being in a hospital.
Third day –
Today they would like me to do the treadmill, to get more numbers to insure that my air capacity isn’t shrinking daily, I guess. That I am close to what I did months ago, to compare.
I walk into the exercise room with the physical therapist and it is at least 75-80 degrees. I cannot work out in the heat. I lose water and salt 3 times as fast as a non-CFer. I lose electrolytes and it makes me feel dizzy as if I am losing my footing, and sometimes my sugars plummet as well. The PT lady said she would try to get a fan.
I jump on and immediately she is taking all sorts of numbers: blood pressure, oxygen levels, heart rate and two “how am I feeling?” scales: 1-10. She checks on these numbers every 2-3 minutes. Just about 20 minutes in and I say “I could keep going but I am dying. It is too hot in here.”
“I guess it is a little too hot.” Then finally she goes over to a fan and plugs it in.
The fans truthfully was hidden and looked old, but once she turned the one on, air circulation!
“I have to get out of here.” So we leave.
“So I will see you tomorrow.” She asks as if it is a question, but really more of a statement.
“No. I am leaving tomorrow.”
“Well, if you don’t – I will stop by.”
Whatever lady. She was very nice, but almost too nice for me. I vocalized clearly I cannot work out in the heat.
I replenish my fluids as much as I can. More antibiotics, which only dehydrate me as the night goes on.
The nurse measures my last vital signs before I go to bed 12:30-1:00am, and the automatic blood pressure cuff reads 78/40. Normal is 120/80, 110/70, right around that. I normally run 100/60.
“How do you feel?” the nurse asks.
“Tired. Fine.” I am sitting up in bed, eyes half open as I have been dozing for 30 minutes or trying to. Honestly, I have no idea how I feel, but tired.
She runs the blood pressure two more times, 80/40 tops. She goes and gets a manual one, 80/40, twice. She then pages a resident and she comes back and hangs a one liter bag of saline. Every hour she checks my blood pressure. During the next 4 hours I suck down two liters of saline and my blood pressure returns to 100/60. I got next to nothing for sleep, three to four one-hour naps at best.
I say, “It is because I did the treadmill and it was too hot in there. I was very dehydrated. I drank what I could . . .” Let me tell you, we (Sheila and I) bring in our own water. I drink close to one gallon a day while in the hospital. So, I drank and still I was severely dehydrated.
All I was thinking – “They better not make a big deal out of this, cause I am leaving. And I am not doing the treadmill again, in that heated room.”
The next day, Dr. S. didn’t mention it. I mentioned it. He says, “Would you like to go home? We got your levels.”
“Yes!”
Get-me-the-hell-out-of-here-before-they-find-some-other-number-to-fuss-over!
I wipe all my equipment down and pack-up in about 30 minutes time.