Husband of Still's patient

[Guest guest]

Hello all,

My name is Kumail Nanjiani. My wife, , was

diagnosed with Still's disease in April of '07. Here

is the story of her sickness/diagnoses/treatment.

Sorry if it gets a bit lengthy. Bottomline: we just

moved to Brooklyn, Ny and would like recommendations

from you guys on good doctors in the area who treat

Still's disease. Thanks much!

has always been an exceptionally healthy person.

In January of '07, (my girlfriend at the time)

became ill and was diagnosed with a bacterial

pneumonia. This was the third time she had had

pneumonia which is an uncommonly high number of times

for a 27 year old. She had what seemed like a full

recovery. In March, she got ill. Pneumonia again. The

doctor prescribed her antibiotics (Z-Pack) and sent

her home. She developed a pain in her chest and in her

left ankle, which we believed to be unrelated. Her

situation did not improve. Three days later, she went

back in to her physician, who put her in an ambulance

and sent her to the hospital. I was not with her. I

called her every 10 minutes but did not hear back from

her. At 11 pm, she finally called. I went over to the

emergency room and was hooked up to an oxygen

tank. I stayed with her at the hospital that night.

She did not sleep at all, due to a lot of chest pain

and breathing troubles. The next day, the

pulmonologist saw her X-rays, and said they were going

to put her in a medically induced coma and put her on

a respirator. They strapped her down and started

giving her diprivan. I stood there as she struggled

and kicked as hard as she could. Until she stopped.

She would be in this coma for 8 days, which is the

longest that we have gone without speaking to each

other since the day we met. I saw her laying there

completely immobile and remember thinking that if she

ever came out of this, I would marry her.

She had surgery the next day to remove pus from her

right lung and her heart, and the doctor said she

should recover right away. But there was no change in

her condition. 103 fever, very very fast heart rate,

high sedimentation rate, and other medical words that

i had never heard before.

What followed was an awful rollercoaster of diagnoses.

The doctors could not figure out what was wrong with

her. Every day was different. I would go into the ICU

at 9 in the morning and meet with her pulmonologist,

cardiologist, internal medicine doctor, her

hematologist, and so many other ist's. I would stay

till 7 pm and go home, only to return the next day.

Some nights I would drive over at 4 in the morning,

just to watch her sleep. My work was very

understanding of the time off. Some days they would

say it was a lymphoma or a leukemia, some days it was

Lupus. They would inform me everyday of an " infection "

that seemed to be spreading from her lungs and her

heart to her kidneys, her spleen, her liver. A new

organ had gotten infected everyday. I would sit in the

visitors room and cry and wonder if I would ever speak

to my beautiful baby again. I remember thinking " If

its leukemia, atleast I know I'll see her awake

again. "

7 days into her coma, they brought in a

rheumatologist, who thought it might be Still's

disease. She put her on prednisone and her condition

improved right away. After a lengthy rehab period (her

time in a coma had atrophied all her muscles, she

could hardly lift a finger) was back to laughing

and smiling and dancing again. We married in July '07.

She was weened off of prednisone and stopped taking it

a few months ago. She has been on no medication since.

This past weekend, both of us contracted some sort of

virus and fell really ill. 102 fevers etc. I got

better, she did not. She went into see her doctor

here, and he said that she has pneumonia in her lungs

again. I started having flashbacks. She is on

prednisone again now, and feeling a bit better.

We moved from Chicago to Brooklyn, NY a couple of

months ago, and would really like your recommendations

on good rheumatologists in the area. This is something

that we are going to be living with forever, so we

need to get educated and recognize the telltale signs

of an episode early. It seems to start in her lungs.

Does anyone else have these symptoms?

We are both fairly young (she is 28, I am 29) and not

super financially comfortable. But I want to make sure

she gets the best care possible. Any guidance you

could give me would be very very appreciated.

I know I don't know what it feels like to have

Still's, but I know what it's like to be in love with

someone who has Still's. Her time in that coma was, by

a long way, the toughest experience of my life. Hope

neither of us ever have to go through that again.

Thank you all so much in advance. Please contact me

when you can.

Kumail

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