Reliability

Reliability. You can count on something when you need it. Or somebody. Gabriel's car waited in San Diego a full month, and started right up when he returned. Outside of a dog that car is the most loyal thing, inside it is too small to park it. (sorry Groucho).

People have been great, mostly. Judging people metaphorically:

Reliability is finding the car where I expect. Loyalty is you holding the bottom of the ladder while I am up on the top. If you gotta leave, please wait until I get down.

I wish doctors could make us as reliable as Gabe's car, and our guts as pleasant to service as its engine bay. Recovery has Gabriel moving up and down the ladder for a while. Lots of friends have been supporting him, bringing us food, and doing more than I have done for others.

We will make up for anybody that bails out before Gabriel is safely down from the ladder. No problem, just walk the other side of the street I am on.

Going Home

Just Discharged! Hitting the road heading south, home.

Guantanamo vs. Prednisone

Medical information on the internet is a mixed blessing. Access to collective knowledge is useful, but cyberchondria is also real.

A huge disservice is all the research papers accessible only to paid subscribers.  Patients many times fall back to knowledge disseminated by other patients on bulletin boards. 

It is hard to extrapolate from our singular experience, but there is one topic Graciela felt we had to share.  I have not used the well known Prednisone cortisone myself, but I saw it in action. The mental image of what I saw is darkness. 

I will use a strong dose of sarcasm to complement the picture. If the war on terror decision makers knew how this substance messes up your mind and breaks your will, they would have not bothered with waterboarding. They would have shipped Prednisone pills to Guantanamo. That is all I can and will say, in case somebody else is traveling the same road.

Still planning on going home tomorrow Monday with Gabe, and put the darkness behind. 

 

UCSF Nights

Day 18 and Gabe is eager to get out, we may leave the day after tomorrow.

Nights at UCSF Mount Zion are slow. We took turns with Graciela, one sleeping in the hospital room, and the other in a nearby studio.

In the room when the patient goes to the restroom or a nurse comes for vitals you also wake up,  disassemble the couch, and clear the way. A Spanish Inquisition couch you may say. Au contraire, it is a clever apparatus for bonding with the patient. Our rythms and discomforts are so synchronized that patient and visitor have been known to trade places after a fortnight, as we did on occasion.

Quiet nights on the 5th floor. Exempt from the day time chores of feeding parking meters, and moving the car every 2 hours. In the room Gabe likes podcasts and on-line lectures, some Abstract Algebra on a white board, and often evaluating permutations of the finite set of pain medications nurses can offer.

The streets around UCSF have their own feel late into the night. I crossed paths with a large frame male staff person requesting a security escort for his 40 meter walk to the car. Reminiscent of the Karate competition days in Queens, NY where the streets around the event were more threatening than the sparring inside. Now the streets around UCSF feel less scary than what can happen inside a hospital.

Many youngsters visited Gabe, four of them came from Berkeley the very surgery night.  4 to 6 a day on average, with some days in double digits. They ate Gabe's jello and played board games for hours. This place ain't Rick's Cafe and MD residents are no Bogarts, so there really was no gambling in the house. As for alcohol I hid a bottle for one of the nurses. Nurses do twelve hour shifts of demanding and caring duty. I thought she could use a Spanish Jerez after work. She found the bottle while looking for supplies and gave Gabriel a complicit reprimand.  

The studio was a retreat for a warm shower, sleeping on a bed, and waking up to a view of Golden Gate Park. We didn't spend time there, but we somehow prompted written noise complaints from the downstairs tenants. Heck, I can't fly, I must walk.

We just learned from Paul Ekman's segment about emotions here that restraining locomotion generates anger, and I was ready to vent my anger to that neighbor. I was restrained, the studio sublet was "informal" and pursuing that matter could get my host in trouble. This was a compound case of restraining locution about locomotion. I need to ask Ekman if it creates exponential anger. I am too busy for anger, I just keep a mental list of people that better cross to the other side of the street when they see me. The downstairs tenant is on the list.

Ben joined today back from Uruguay. We spirited Gabe out with Ben for a secret walk to Fillmore street, showed them the streets and foods around UCSF. "Captain Burger" met us for sangria and turkish coffee. It may be that liter of sangria, but on the way back it seemed like most people walked on the other side of the street.

Walk man walk

We are on day 17 of Gabe's UCSF hospital stay when most patients names on the board have changed but Gabe's is still there. Name persistence is proportional to how sick you are, nobody wants that.

We meet other patients walking the hospital walk, we share stories. To feed the illusion that we are getting out really soon we don't use names.

Take Sonoma man, tall, determined, and strong. 30 days and two surgeries. He was told that walking was key to recovery and discharge. He walked the 5th floor day and night like the energizer bunny. The only names we have for him are Sonoma man and energizer bunny. It worked, three days ago he was all smiles being discharged. After walking for miles every day the mindless hospital rules had him pushed in a wheelchair to the street. Oh well. Good luck man! Did you walk 60 miles to Sonoma?

The ultimate anonymous patient has armed guards at his door. We call him the convict, his door only has a prisoner number, just like Jean Valjean in Les Miserables. We haven't spoken to the convict but Gabe has seen him walk with his IV column and ankle chains, and says you hear him coming.

Christmas and New Year at UCSF Mount Zion hospital, the holiday spirit is low. Patients don't want to be there at any time, and staff doesn't want to be there during the holidays. The only one happy to be there is the convict, Mount Zion is better than jail.

Our fearful leaders are arguing in Washington over a health care public option. Little do they know the public option already exists, unlimited tax payer funded health care, anybody can get it, regardless of preexisting conditions. The convict has it. All you do is a crime and you are covered. Next time we run into the convict I can ask about his copay, maybe his is better than my plan.

Three days ago a newbie went through Gabe's surgery and was brought to the floor. No names exchanged but resembles an adult Harry Potter, so that is what we call him. Gabe is his recovery mentor, and of course my wife Graciela who is everybody's mentor on the 5th floor. Well except for the convict she has shown care and advice to everybody. Not because she wouldn't, the guards don't let anybody close to him.

A silent Asian teenager crashes in the relaxation area computer. He is not ill, unless you think video game addiction is a disease. He has been there for weeks playing computer games, and reconfiguring the browser for chinese language and the baidu home page. We pitty him thinking his only adult relative is in recovery, but then again he may have no relatives in the hospital and discovered the public option of PC games and internet access. Just walk into the hospital and play for free.

It has been a long stay but Gabe was always a long distance runner, the longer the race the better he did, and he is walking fast and straight on the 5th floor. Walk Gabe Walk, don't let Harry Potter (or the convict) catch up with you.

Who am I?

Discovering one's identity in a time of crisis is so kitschy I leave it to Hollywood. Walking the streets around the UCSF Hospital for more that two weeks I found something better than my identity.

I found a method for finding who you are, no DNA test involved. Think those lame official questionnaires with race and ethnicity questions, shoehorned answers that don't fit.

You walk into an ethnic Deli, grab a few items, you stay mum, not a word, approach the counter with confidence, pull the wallet as if ready to pay, not a word, and wait until they address you. If they speak to you in their language, that is your identity, if they speak to you in English you try the next Deli.

Really simple, the mirror lies. We are not who we think we are, we are not who we say we are, and in spite of the tired Hollywood line we may not be anything we want to be.

We are what others think we are. If to the locals I am one of them, then I am. If am not, there is no use in pretending.

We are telling Gabe about all the good eateries we are lining up for him the moment his ordeal is over, anything is better than hospital food, specially some good Armenian, Peruvian, French, Italian, Argentinean, Jordanian, and Russian places around here...

I found who I am, and the picture has the answer.

The last mile in Healthcare

This is not a medical blog, but Gabe is recovering from surgery and two weeks with him at the UCSF Hospital brewed much that has to be said. Jonathan is Gabe's doctor. Harold is my mechanic. They are both so good that I will not share their names. Paraphrasing Ben, get your own.

Medicine pooh poohs knowledge acquired without controlled experiments as "anecdotal". Harold can fix any car. Harold has never conducted a random controlled double blind experiment, and unlike doctors he never said that I imagine wheel bearing noises, nor put a placebo in my engine.

The last two weeks I saw that hospital practice is flexible and doctors do admit using trial and error, just like in Harold's shop. Good. Now if doctors were as accessible as Harold's shop... I mean in Who, how, and when to contact for medical help.

That is the last mile of health care, and Jonathan has solved it. Some doctors call you back within a week, or have a nurse call you back in a week, or put you through their answering service Q&A, that is fine if you have a skin rash but not a good thing for chronic or accute care. Jonathan put Al Gore and Steve Jobs together by using the Internet and an iPhone for patient communications, and the outcome is timely, direct, and precise.

Email is not a billable event for profit minded practicioners and insurers, but that thinking is so pre-iTunes, it is vinyl record mentality. Remember the medical equipment telemedicine commercials? Those with doctor-to-doctor sessions and a grateful smiling patient in the background? Get real, patients in pain don't smile, and the only telecommunication that matters in real life is patient-to-doctor, like Jonathan does.

Healthcare change is slow, sick people face the system alone, at a time of weakness, so how can they drive change in the last mile. Answer: Laughing.

That loud sarcastic laughter I use on ridiculous people and ridiculous arguments. Laugh at any doctor unwilling to use the internet to help you. Laugh so loud until it is uncomfortable for the laugher and the laughee. Ridicule them, shame them into retirement until we get a crop of smart multi-taskers like Jonathan. If a browser is good enough to manage their portfolios it should be good enough to ask a question and request a prescription. If Skype is good enough to connect with their college children, it is good enough for a patient followup.

Gabe is recovering and hopefully will be home in a few days, thanks for asking. But fear not, there is pent up laughter and sarcasm waiting to be posted right here, stay tuned.