Re: Husband of Still's patient

[Guest guest]

Hi Kumail.

Tell I am so sad she went through all of this.

I sent you a list of Rheumatologists in Brooklyn.

I know that you might want to try Mr Sinai.. I think Dr Gorevic is the

Chief...I will send you the list of the doctors there as well. Mt Sinai is on

the

upper East side of Manhattan and is an excellent hospital, that is where I

would go if I were you . .When they hear how seriously ill your wife was, I am

sure you will be able to get an appointment with a good doctor, hopefully

soon .

I lived in NYC for 37 years in Bayside Queens. My rheumatologist is no

longer there.

Tell emily that this group is a terrific support. Lots of nice people from

all over. Lately we are thinking of getting together for an easy coast support

meeting. Well, let us know if you get an appointment. Good Luck

Liz NJ

diagnosed 1972 ( 3 major flares and 20 mini ones )

**************Start the year off right. Easy ways to stay in shape.

http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

[Guest guest]

Welcome,

My name is Mike and I have Stills. These story rip at my very fabric. I had a

lot of these symptoms but had no trouble with my heart or lungs, thank god. I

got every possible diagnosis in the world before they came up with Stills and my

family also thought i was dying, I was also healthy before it hit me like a ton

of bricks. I have only been a member for about a week, but one thing I know is

there is wonderful people here who will do anything to help in anyway.

Welcome to the family and don't be afraid to email as often as you guys need

to.

Mike,,

Winnipeg, Canada

Kumail Nanjiani wrote:

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

__________________________________________________________

Looking for last minute shopping deals?

Find them fast with Yahoo! Search.

http://tools.search.yahoo.com/newsearch/category.php?category=shopping

---------------------------------

Looking for last minute shopping deals? Find them fast with Yahoo! Search.

[Guest guest]

Kumail,

Thanks for sharing your and your wife's story. You make me glad that mine

was never so severe.

It's refreshing to see a spouse that admits they have no idea what it is

like to have Still's and your dedication to her is to be commended. Many

think it's not as bad as is seems to them to be and I have seen some who

bail. She is lucky to have you.

As far as which doctor I cannot say as I do not live in the area. I think

the group has a list of doctors on the group site that treat the disease.

What I did was set up an appointment with several RA doctors and went to

each. Had them examine me and run various tests. Then decided on which

doctor I liked best. As it turns out, it's a 120 mile round trip for me to

see the doc but she's well worth it. Here grandmother and mother both were

diagnosed with RA so she was the ONLY doctor I found who really knew the

disease from the patients point of view and was compassionate about seeing

to it that I managed my illness. Hopefully your insurance will cover the

ability to see different rheumatologist. For what it's worth, I am with

Kaiser Foundation and can see any rheumatologist I within Kaiser.

Wish my best. My granddaughters name is too. Don't run in to

it too much these days. :-)

Regards,

Darv

Darvin Atkeson

http://www.liquidmoonlight.com <http://www.liquidmoonlight.com/>

[Guest guest]

Kumail,

Wow, your wife's history reads almost the same as mine! And I commend you and

the other spouses for joining in the group to get support and learn more about

this disease.

Let me just say... you are doing everything just right. Speaking as a woman

who went through a divorce while battling this disease, it's devastating when

your spouse does not try to understand or listen. Thank goodness my current

husband does. He is just like you, worried, can't stand to see me sick or in

pain, and just wants to help in any way. Sometimes, though, I think he fusses

over me too much, but I think, hey there are worse things in this world, what am

I complaining about?

I have dealt w/Still's since I was 18 (39 now) and have been on different

treatments. I have had varying degrees of illness w/this, but now that they

know what it is (took them 8 years to diagnose me) they know what to do. On the

bright side, I have also had periods of remission. But I find as I have gotten

older, the remissions are fewer and more far between.

I am sure this didn't help you much. Just wanted you to know you're not

alone. If my husband would email (he doesn't) he would be the perfect person

for you to talk to. Sometimes I wonder if we shouldn't have a separate group

for the spouses/mates for this? Simply b/c I know it would be a big help.

Welcome, welcome!

Gail

Kumail Nanjiani wrote:

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

__________________________________________________________

Looking for last minute shopping deals?

Find them fast with Yahoo! Search.

http://tools.search.yahoo.com/newsearch/category.php?category=shopping

---------------------------------

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

Hello Kumail and

As I live in U.K. can't help on the doctor front but just wanted to welcome

you to our family. It must have been really frightening for you to see

so ill. Now that she has been diagnosed with stills at least the

doctors know how to give the right treatment and hopefully things will

settle down again very soon.

All the best to you

Joan U.K.

_____

From: Stillsdisease [mailto:Stillsdisease ]

On Behalf Of Kumail Nanjiani

Sent: 11 January 2008 19:56

To: stillsdisease

Subject: Husband of Still's patient

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

__________________________________________________________

Looking for last minute shopping deals?

Find them fast with Yahoo! Search. http://tools.

<http://tools.search.yahoo.com/newsearch/category.php?category=shopping>

search.yahoo.com/newsearch/category.php?category=shopping

[Guest guest]

Hello Kumail, sorry your wife has Stills but you've found one of the best

groups out there. I've had Stills since 1-15-04 and haven't really improved.

I don't have much to offer except that check with your state health services

because if you fall into a lower income class, you may be eligible for

assistance. Without the prescription assistance I'm getting now I'd be up

the creek without a paddle, as it on average costs me over $4500.00 per year

for prescriptions.

If she gets it so bad that she can't work,apply for Social Security. Once

again, I am lucky as I got that, so I can at least live better than I would

have otherwise.

You can ask anything you'd like to here, and I'm sure you'll make some

friends, Hope she feels better, Kirk from NE Pennsylvania.

>

> 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

>

> __________________________________________________________

> Looking for last minute shopping deals?

> Find them fast with Yahoo! Search.

> http://tools.search.yahoo.com/newsearch/category.php?category=shopping

>

>

--

Everything in life sucks except things that should!