Greetings from My Cave

 June 25, 2010- Six more months until Christmas…

From a wedding to a film festival to… another stay at Stanford Hospital. Is this another example of Stenzel “crash and burn?”  I am now in an isolation room in Stanford experiencing my own private honeymoon and spa- WTF. I came down with a sore throat last Friday that turned into a gushing runny nose by Sunday. Like most compliant lung transplant recipients, this means a trip to the Emergency room for a nasal swab to see if the cold could possibly be due to 2 viruses that are particularly dangerous to lung transplants: respiratory syncitial virus (RSV) and parainfluenza. Well, I had a hunch I had one of those because the head cold became dreadfully horrible within 24 hours. I received a call mid-day  at work on Monday stating that the results did show parainfluenza and that I have to come in for five days of inhaled anti-viral medication, ribavirin, and one parainfluenza immunoglobulin IV (which costs $10,000 per dose). Shoot me now, Blue Cross. I know they hate me.

Ribavirin is administered six hours a day by mask under a plastic 2’ x 2’ square tent over my head. It is aerosolized by a machine called a SPAG, or “small particle aerosol generator”. There are tubes all over the machine. One finds its way to my mask to deliver the medication, another is a suction into the tent, and another is a filter, and another is a mist that delivers moisture into the tent.  

So I put on the mask then, I am covered with the plastic tent and then the aerosol is started. Within fifteen minutes, I am sweating like I’m in a sauna, since the plastic is airtight and my own body heat is trapped  and mist is spewing out everywhere.  By two hours I am drenched, feeling very sticky and claustrophobic and yearning to get out of what seems like some sort of torture chamber. At 90% lung capacity, I can handle it but I don’t know how my more compromised lung transplant friends who have lower lung capacities handle the claustrophobia!   It reminds me of the old “mist tents” that were popular to treat CF back in the 1960’s and 1970’s that actually ended up inadvertently causing  pseudomonas infections.  My respiratory therapist gave me the option of inhaling the daily dose of ribavirin all at once for six hours,  or taking 2-hour inhalations three times a day. Call me a wimp, but there was no way in hell I could tolerate that claustrophobic sauna for six hours at once. I was told I could wear it at night while I slept . Yeah, right, like I would be able to sleep with that thing on! Sedate me, please! Needless to say, I chose the three times a day protocol.

So here in this small isolation room, I am feeling  dreadfully guilty for being so un-eco friendly. Every healthcare provider that comes in the room has to gown, mask, wear eye & hair protection and glove… not so much to protect themselves from the cold virus I have, but rather to protect themselves  from this super teratogen.  It’s really frustrating and guilt provoking to see: A nurse comes in fully covered in protective gear to give my insulin, and then realizes she forgot an alcohol pad. She exits my room, goes through the first of two double doors, removes all the protective gear, throws it in the trash, leaves to get an alcohol pad, comes back through the first double door, puts on new protective gear, comes in , gives my insulin, leaves, removes the gear and puts in all in the trash again. Fuck me, Mother Earth!  This simple cold is putting a huge carbon footprint on Mother Earth and an enormous economic footprint on my insurance company.  All because of a simple head cold. This is exactly why I am so freaked out by germs and have to be so vigilant about people around me who are sick. These are the consequences not only for my health, but for the earth and economics too.  You let me down, Purell!!   

Apparently Ribavirin causes severe birth defects in lab animals. I read about it in Reprotox, our trusted teratogen database that I use in my job, and actually there are 9 case reports of normal human pregnancies. However, because of the animal reports,  I think the protocol errs on the side of safety because the hospital staff treat this stuff like it’s a poison! What am I doing breathing in this stuff?  No babies for me, that’s for sure. I am a walking teratogen for sure, with my ribavirin and CMV positive ass.

When I do my inhalation treatments,  the respiratory therapists put a large neon pink sign on the door that says “Ribavirin ON” and no one  dares to enter.  Hey… that’s a new tactic!  If I want the staff to leave me alone, all I have to do is put up the sign on the door that says “Ribovirin On” and NO one will bother me!  Something to consider when my new husband visits … ;  )

I am spending way too much time online while I am here- up to 7 hours a day. I joke that I came into the hospital with a cold, and I’m leaving with carpal tunnel.  But I’m enjoying new discoveries on the internet, especially YouTube. I found this particularly hilarious, even though it is not a subject matter that should be joked about. If you like parody check out BP Spills Coffee:

Also, I have a new friend I found on YouTube. His name is the Fully Sick Rapper; he picked up drug resistant tuberculosis from Argentina and has lived in the hospital in quarantine for months. So I have nothing to complain about. But he finds humor and spends his time being productive in isolation (like me).  Please see this if you want a laugh:

On another note, here are some random thoughts while in the hospital:

“Why does the refrigerator have a sign on it saying, ‘ This  unit is not built to tolerate explosions?’”

I’ve come to believe that hospitals sometimes run on fear of liability more than they do logic. For example, my insulin is ordered in the computer as “Take with meals.” Well, at Stanford, dinner is served at 4:30pm (I’d like to know who eats dinner that early). Well, on my first night, I arrived at the hospital at 5:30pm. I ate at 7:00 pm. When I asked for my insulin, I was told “no” because it is ordered at 4:30pm and not 7:00pm and therefore I can’t have any. When I explained that I need insulin with meals, I was told “sorry, it was past the time” where I could get any. Does that sound logical to anyone? Insulin is a controlled substance and is highly regulated. With that ridiculous logic, this invites me to re-state exactly why I bring my own damn insulin to the hospital and hide it in my bag. Don’t tell anyone but some rules are meant to be broken.

The next morning I ate 100 grams of carbohydrates for breakfast which would require about 6 units of insulin or else my blood sugar will go through the roof. Well, when I asked for six units of insulin, I was told “no,” the doctor only ordered one unit per meal. I would have to wait until they stopped by – whenever that may be-  to ask them to re-write the order. Well, is it not surprising that my sugar was 280 that morning and the nurse had her hair on fire? Again, this is why I keep my own insulin on hand. 

I’m not complaining, really I am not.  I’m just venting and inviting you to laugh at the situation with me. I actually find this quite humorous. And this is no fault of the nurses. They are just following orders. They are meticulous, caring , wonderful men and women and their care is actually very good. 

But there’s just some shit you have to put up with when incarcerated.  As one of my good transplant friends says, “same bullshit , different hospital ization.” Well said.  

My happiest moments here were when my dear friend Mari brought me my favorite Japanese food- natto and rice-  and I sat eating it, looking out of my window at the beautiful garden area with blooming trees, flowers, birds and a bright blue sky filled with sunshine.  Other great moments where when I escaped at 9:30 pm and took a walk around the hospital in the cool, dark, starry sky, feeling the fresh air inspiring me to run (a little). Joie de vivre.  I can’t complain really. Life is good. I have a treatable , mild, yet costly  reason for being in the hospital, and I thank God for good healthcare and insurance.

Tomorrow I will finish my fifteenth inhalation treatment and can go home. My white count is only 2.7 so I am very immunosuppressed so I have to force myself NOT to go straight to the gym and start training for the Transplant Games. They are on July 29th… Ah, the pressure, the pressure. I am so incredibly out of shape from sitting here for five days.

Thank you for being such faithful readers of my verbose blog.  May you stay cold and flu free this summer.

Love ANA

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1 Comments to “Greetings from My Cave”

  1. Kay Walker says:

    LOVE NATTO! The jealousy stops there though. The “camping” at Club Med is not a good honeymoon :( The improved health at the end of this will make a better honeymoon whenever you can find time off! I am disappointed at the inflexibility of the nurse – if she really thought about it, changes could be made in the schedule… duh nursie! Listen to me…a nursing STUDENT! As a CFer’s mom, I have many DUH nurse stories too, which make me laugh NOW. Like the time they were giving Kyra enzymes because of the time on the clock—without food! I said “NO!” and had to explain (to a nurse!) how enzymes work!!!

    love you and are so happy you shared!

    Love, Kay, Kyra, Ella and Eric

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