2/4/10 

It’s been 8 days since I have been hospitalized. I’m feeling almost back to being 100% human. I am starting to get antsy which means it is time to go home. I entered the emergency room last week with severe abdominal pain, nausea, body aches and fever. I had a hard time exercising the week of the 18^th and had a lung capacity test on 1/20/10, which showed a drop in lung function. So I ended up with a lung biopsy on 1/21/10, which showed acute rejection and a cytomegalovirus (CMV) infection. CMV is a virus that 85% of the general population has been exposed to and it sits dormant in one’s body unless you have a decreased immune system. It is common to flair up in transplant patients and people with HIV/AIDS.

 Acute rejection is common in many lung recipients and is treatable with high dose steroids (1800 mgs of IV prednisone). This crushes the immune system to prevent further rejection. Normally such a high dose of steroids gives a person lots of energy, but for me I ended up sluggish and tired so I had feeling something else was going on.   So by the time I came to the ER on Wednesday 1/27/10 I was completely miserable and unable to sit or stand much. I couldn’t even pack or drive myself to the hospital! Four days later, the CMV results finally came back showing an elevated titer of 100,000 (normal is < 600). I have been on some heavy hitter anti-CMV drugs since and they seem to be working. Today is my first day without a fever! JOY!

After being completely useless and unproductive for the past week, I am able to blog a bit.   Many people with CF or transplants know the hospital environment very well, like me. We help ourselves to kitchen, the linen closet, and set our own schedules. It is truly our second home and I know it like the back of my hand.  The hospital  is the best and worst of all worlds. It is a place where one surrenders when they have no choice, when their body refuses to cooperate with daily life and loses all functioning. In this way, it is a godsend, a refuge, and a place of hope for recovery.  The hospital is a place full of miracle drugs, advanced diagnostics, and most of all, nurturing caring people who are not afraid of being near sick people who are unhappy, tired, hungry, crabby, and otherwise miserable. It is a place of people with the best intentions. But it is also a massive institution, filled with ridiculous rules and protocols, all intended to protect the patient and protect the hospital’s liabilities. It is a place of tons of people trying to follow these rules, while creating more, and of the right foot not always knowing what the left foot is doing. It is a place of frequent communication mistakes, and a place where self-vigilance and proactive assertiveness are vital to survival.  There is a loss of dignity, privacy and to some extent humanity when entering the hospital.

For example, my doctor had for some reason written an order for only 1 unit of insulin per meal. Well, one unit covers about 15 grams of carbohydrate which is about 4 ounces of juice. I insisted that I usually take 8-10 units of insulin per meal but they wouldn’t give it to me because it wasn’t in the order. An hour later my sugar was 400 and they get all panicked like their hair is on fire, when all I could say is “I told you so.” (of course I didn’t tell them about the previous meal when I took my own damn insulin from home hidden in my bag- this is self preservation.)

Many of you know how many interruptions there are in the hospital. There is often not 15 minutes that go by without a knock on the door. Some of these visitors are essential, like my doctor, and others are “courtesy visits” such as the visit from the nurse manager who wants to make sure all my needs are met. Somehow he seemed surprised when I told him my call light went unanswered several times. I’ve never had a hospital stay when that did NOT happen. 

Here is a ridiculous example of the type of visitors that come to my door. Two random hospital employees show up with gloves on. They claim that they are with the hospital’s “bedsore committee” and they visit patients at random to check their “backsides” for bedsores. I told them I am young and mobile and can guarantee to them that I do not have a bed sore. They insist they have to check anyway. So reluctantly I let them look at my ass. Now, is that a loss of dignity or what for two strangers to come in and end up looking at your rear? What the hell?

Another time, an elderly Asian pink lady volunteer (aka candy stripper) walks in and opens my food tray to examine my food. She states that I need to eat more vegetables so I don’t gain weight sitting in bed all day. Since when is a candy stripper supposed to give medical advice? Whatever…

 So I have to approach each hospital stay expecting the craziest most random experiences and laughing about them afterwards.

My hospital  started this new organic food menu, which is pretty nice. It is a lunch or dinner option of homemade veggie soups, breads, fresh salads and beverages that are all organic. Of course, lunch and dinner  is served here at 11:30 and 4:30 respectively, which means that by the time I get around to eating on my own schedule, the soup is cold. (Who eats dinner at 4:30??)  The first organic meal tray was great; the second was good; the sixth was blah. For the seventh day I had to settle with fish sticks. Aren’t I spoiled? I get tired of the same foods because my life is so privileged to have so much variety in foods.

Funny thing is, I eat this organic meal which is probably no more than 200 calories, and, then, to get more calories, I drink a nutritional supplement like Ensure which includes completely artificial ingredients such as corn maltodextrin, thiamine chloride, hydrochloride, and acesulfame potassium. These fake ingredients probably negate the health affects of the organic tray!

Oh well, it is with best intentions.

I hope to be discharged soon. The doctors want to see that the CMV viral titers are coming down, to prove that the drugs are working, before they release me. The ridiculous thing is that the CMV test is run only weekly in the lab, so I am literally just here right now waiting for these results. The blood was drawn on Mon and Wed, but it is sitting until the “CMV test day” which may be today or tomorrow. Oy vay. I’m sure my insurance company would freak out if they knew this.

My big personal dilemma and one of major debate with Isa is when to return to work. How much time off should I give myself before my vacation time is used up, my job is threatened or my coworkers exhausted from covering for me? Isa wants to me to take a long leave of absence, but I do not.  I love my job and my coworkers, and the benefits are life saving, so it is not an easy question. So many people have lost their jobs this year from the recession; here I have a perfectly awesome one, so why would I be crazy enough to let that go?

Anyway, this bump in the road of my transplant journey proved to me again that the physical body is in charge and I can’t live or act like a  normal person without some payback eventually. I have to pace myself more and listen to my body when tired. I am no longer the energizer bunny but rather a 38 year old double double underweight Cfer with a body that crashes and burns every few years. I’m so grateful for everything Isa and I have been able to do in the last few years with our book tours and travels. But this will teach me I can’t do it all, I can’t say yes to everything and we really need to pace, pace, pace.

That being said, I will sign off now. Gotta check my email ! ; )

Many thanks to so many of you who have written or called with get well wishes!
Love and health to all of you!

ANA

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