4 surgeries, 5 years, and only 26-years-old...

February 18, 2011

Hello everyone,

Needless to say it's been quite a journey. If you review my previous posts you

will know my troubles started with a fun bout of pneumonia. Since then my life

has changed completely.

And before I continue, please let me note: by no means have I endured the

challenges of someone with cancer or an auto-immune deficiency disease. Still,

at times this path God has chosen for me is challenging. But what life isn't.

When I last touched base with you all, I was happily anticipating attending my

third surgery which was to be preformed by the guru of sinuses, Dr. Hwang

of Stanford Hospital. Yes, Stanford University's Hospital, deemed the Harvard

of the west coast (at least on an episode of Saved By the Bell :-) ). For those

who do not know, Dr. Hwang is the Director of the Sinus Institute. As a

graduate of Penn State (another sinus hub), he is renowned for his research and

knowledge of the sinuses. And he's a really nice guy! Very personable, kind,

and he gets it! (As he probably should with such a title).

Anyhoo, due to the kindness of one of my many doctors here in Las Vegas, NV, I

was referred to Dr. Hwang and he kindly took on my issues. Prior to my third

surgery in 2009, I received a pic line for Tobramycin to fight a nice

Pseudomonas infection. When that failed, a surgery was booked. My surgery took

over 5 hours to complete, with over 10 pounds of sinus tissue removed. Prior to

the surgery, I was asked if I would like to donate my sinuses, and I gladly

agree without knowing I would be slatered! ;-)

Post surgery, I felt great. Due to a high tolerance in pain, I elected to use

none of my prescribed pain killers, and found myself dining at my hotel

restaurant and taking a shower all the same day.

Moving forward, I was placed on a nice dose of predisone, high dosage of

levaquin, NeilMed irrigation w/ budesonide and baby shampoo (bubbles! oh joy!).

2 months later, polyps were already growing back. Next I was placed on a course

of sporanox, although many previous blood tests showed I had no allergies to

molds. After no success, it was then also discovered I had stenotrophomonas. A

course of prednisone, bactrim, and biaxin also followed which I took orally for

about 4 months. Dr. Huang also confirmed that both the pseudomonas and

stenotophomonas were biofilms in my sinuses, thus, we (me and the bacterias)

were all one. Always and forever. For better or for worse. 'Til death do us

part. A marriage straight out of hell.

Then life happened: in February of 2010 I lost my job of 4 years (lovely

economy!) however I quickly found a new one with much lousier and more costly

insurance and even better, MUCH lower pay (about 50% reduction in income).

Hoping to move up the wonderful corporate ladder (and salary range) I had to put

off my health so I wouldn't be deemed the sick girl. Therefore no more monthly

trips to Stanford and only visits to my confused and scared as hell doctors in

Vegas.

Fast forward to October of 2010: after a slew of odd jobs (insurance,

waitressing, and sales, you name it!), I landed an AWESOME and steady job with a

new property. My pay was much closer to where I could survive, but I had plenty

of bills to catch up on. Plus, I felt horrible. Drainage, congestion, sneezing,

sinus pressure, migraines, asthma - the usual suspects.

I made a visit to my ENT (who had originally referred me Stanford) and after

clogging two of his suctions and a look in my sinuses, he concluded I needed

another surgery. Awesome! With a 90-probabtion period upon me, I wouldn't have

insurance until February 1st of 2011.

Having no interest in surgery, nor the time, $ or capability with a new job, my

doctor pumped me up on predinsone, biaxin, and bactrim. (Please note Advair

500, albuterol, nasonex, singulair, zyrtec-d, neilmed irrigating have always

been used to maintain thru this journey). At the end of November (prior to my

insurance coverage ending) and after evaluating no success, my doctor switched

out the bactrim and biaxin for cipro.

Thankfully, due to Obama Care, my mother was able to place me back on her

insurance. But of course nothing is ever easy: the insurance coverage would not

be effective until January 1, 2011 until the end of the month of my 26th birth

month. Amazingly, my birthday is January 3, so I would be covered until the

month before my employer's insurance kicked in.

On my actual birthday, I had a followup appointment with no perceived

improvement. My doctor then wanted to place me on an antibiotic (can't remember

the name) that was mainly used for tubercolosis patients and was VERY expensive.

My mother's insurance would not approve the antibiotic and I was referred back

to my infectious disease specialist who gave me the pic line for my first bout

with pseudomonas.

On Jan 31, I visited infectious disease doctor and it was found I had a 103º

temperature and was wheezing (which I'm used to doing). Based off my previous

records and due to my current symptoms, she told me I needed to be admitted to

the hospital and begin a course of antibiotics plus leave a wonderful pic line

as a suvenior. And so I went for three, angonizing, bad television, bored to

death days. As you can see I'm extremely patient.

While the 3 days at the hospital was an event in itself, it was found that my

polyps were back in full affect and approaching my brain. No wonder I felt like

I was going crazy! I returned home for a total of a week and then back to work.

Currently, I am now receiving tobramyacin (once every 24h) and vancomycin (1 per

12 hours) via pic line, ery tab 333 every 6 hours, Methylprednisolone, and the

usual bout of advair, xopenex (instead of albuterol due to ridiculously high

blood pressure), singulair, etc. The vancomycin has been the most interesting,

since it is referred to a antibiotic as a " last resort " . Also, my at home

health care nurse told me that it is so strong that if it was injected into my

body without my pic line it would burn away my vein. Joy. Blood tests showed

that I had contracted a wonderful staph infection (I'm allergic to penicillin,

hence the vancomycin) AND due to all the wonder prednisone my body was now

steriod dependent, i.e. addict to droids. My doctor mentioned my immune system

was weak as someone with a immune definicy and even used an AIDS patient's

immune system as a reference. And as I departed from the hospital, my doctor

left me with promising message: I needed to have a sinus surgery within 2 to 4

weeks.

Since I began this journey, I have NEVER felt this terrible. With my daily

asthma attacks, I have neared dialing 911 many times, probably more than I ever

did when I was a curious, little 6-year-old. Fatigued, stuffy nosed, amazing

sinus pressure has left me slept deprived. As I approach my surgery date, March

3, I anticipate the instant relief it will give me, still, i am filled with

frustration. If indeed, the definition of insanity is doing the same thing over

and over again and expecting different results, please declare me and my

wonderful, confused, well-paid doctors certified crazy.

What's next for me after surgery, I ask? More antibiotics via the pic-line and

gaining control over my asthma. Long-term plans: prayer, hope, and patience.

In essence, I don't know what to do but I can't afford to financially and

mentally do this every year for the rest of my life. I planned to live a long

life. If an bad asthma attack doesn't get to me first (God forbid) I believe

depression may set in sooner than later.

If anyone knows of any alternatives for sinuses badly infected by the

aforementioned bacterias or any other alternative treatments available, please

share. I am at my wits end and need to create a plan to better my life,

forever.

Thank you listening to my journey (and sarcasm). Sending God's blessings and my

best to you all.

SPIRARE.

Mallory

February 18, 2011

Hi Mallory, You HVAE had a very tough time. I cannot believe 10lb of sinus tissue was removed!!! That's horrendous!!

I hope and pray you stay stable til your next operation...and I do feel that sometimes the emotional impact of our illness SHOULD be compared with the emotional impact of cancer on people..why not? We have endured life-threatening situations, horrible surgeries, feeling terrible, dispair. This illness can surely push us to the edge and back...and receives much less sympathy and understanding than that of cancer. Sorry if I sound outspoken, but that is how I feel! I may be doing well now, relatively speaking, but this illness has left a huge emotional scar in me that'll take some healing.

I wish you all the very best, and STRONGLY recommend asprirn desensitisation, as I've had horrendous sinuses in the past, but my latest investigation showed NO polyps at all 6 months after my last op. My ENT thinks I'm cured, but 'll reserve judgement on that lol! I also recommend singulair/montelukast - that will help with your asthma and possibly the polyps too.

Please keep us updated,

Best wishes

Becky

From: malsyopal <MalsYoPal@...>samters Sent: Fri, 18 February, 2011 8:36:31Subject: 4 surgeries, 5 years, and only 26-years-old...

Hello everyone,Needless to say it's been quite a journey. If you review my previous posts you will know my troubles started with a fun bout of pneumonia. Since then my life has changed completely.And before I continue, please let me note: by no means have I endured the challenges of someone with cancer or an auto-immune deficiency disease. Still, at times this path God has chosen for me is challenging. But what life isn't.When I last touched base with you all, I was happily anticipating attending my third surgery which was to be preformed by the guru of sinuses, Dr. Hwang of Stanford Hospital. Yes, Stanford University's Hospital, deemed the Harvard of the west coast (at least on an episode of Saved By the Bell :-) ). For those who do not know, Dr. Hwang is the Director of the Sinus Institute. As a graduate of Penn State (another sinus hub), he is renowned for his research and knowledge of the sinuses. And he's a really

nice guy! Very personable, kind, and he gets it! (As he probably should with such a title).Anyhoo, due to the kindness of one of my many doctors here in Las Vegas, NV, I was referred to Dr. Hwang and he kindly took on my issues. Prior to my third surgery in 2009, I received a pic line for Tobramycin to fight a nice Pseudomonas infection. When that failed, a surgery was booked. My surgery took over 5 hours to complete, with over 10 pounds of sinus tissue removed. Prior to the surgery, I was asked if I would like to donate my sinuses, and I gladly agree without knowing I would be slatered! ;-) Post surgery, I felt great. Due to a high tolerance in pain, I elected to use none of my prescribed pain killers, and found myself dining at my hotel restaurant and taking a shower all the same day. Moving forward, I was placed on a nice dose of predisone, high dosage of levaquin, NeilMed irrigation w/ budesonide and baby shampoo (bubbles! oh

joy!). 2 months later, polyps were already growing back. Next I was placed on a course of sporanox, although many previous blood tests showed I had no allergies to molds. After no success, it was then also discovered I had stenotrophomonas. A course of prednisone, bactrim, and biaxin also followed which I took orally for about 4 months. Dr. Huang also confirmed that both the pseudomonas and stenotophomonas were biofilms in my sinuses, thus, we (me and the bacterias) were all one. Always and forever. For better or for worse. 'Til death do us part. A marriage straight out of hell.Then life happened: in February of 2010 I lost my job of 4 years (lovely economy!) however I quickly found a new one with much lousier and more costly insurance and even better, MUCH lower pay (about 50% reduction in income). Hoping to move up the wonderful corporate ladder (and salary range) I had to put off my health so I wouldn't be deemed the sick girl. Therefore no

more monthly trips to Stanford and only visits to my confused and scared as hell doctors in Vegas.Fast forward to October of 2010: after a slew of odd jobs (insurance, waitressing, and sales, you name it!), I landed an AWESOME and steady job with a new property. My pay was much closer to where I could survive, but I had plenty of bills to catch up on. Plus, I felt horrible. Drainage, congestion, sneezing, sinus pressure, migraines, asthma - the usual suspects.I made a visit to my ENT (who had originally referred me Stanford) and after clogging two of his suctions and a look in my sinuses, he concluded I needed another surgery. Awesome! With a 90-probabtion period upon me, I wouldn't have insurance until February 1st of 2011.Having no interest in surgery, nor the time, $ or capability with a new job, my doctor pumped me up on predinsone, biaxin, and bactrim. (Please note Advair 500, albuterol, nasonex, singulair, zyrtec-d, neilmed

irrigating have always been used to maintain thru this journey). At the end of November (prior to my insurance coverage ending) and after evaluating no success, my doctor switched out the bactrim and biaxin for cipro.Thankfully, due to Obama Care, my mother was able to place me back on her insurance. But of course nothing is ever easy: the insurance coverage would not be effective until January 1, 2011 until the end of the month of my 26th birth month. Amazingly, my birthday is January 3, so I would be covered until the month before my employer's insurance kicked in. On my actual birthday, I had a followup appointment with no perceived improvement. My doctor then wanted to place me on an antibiotic (can't remember the name) that was mainly used for tubercolosis patients and was VERY expensive. My mother's insurance would not approve the antibiotic and I was referred back to my infectious disease specialist who gave me the pic line for my

first bout with pseudomonas.On Jan 31, I visited infectious disease doctor and it was found I had a 103Âº temperature and was wheezing (which I'm used to doing). Based off my previous records and due to my current symptoms, she told me I needed to be admitted to the hospital and begin a course of antibiotics plus leave a wonderful pic line as a suvenior. And so I went for three, angonizing, bad television, bored to death days. As you can see I'm extremely patient.While the 3 days at the hospital was an event in itself, it was found that my polyps were back in full affect and approaching my brain. No wonder I felt like I was going crazy! I returned home for a total of a week and then back to work. Currently, I am now receiving tobramyacin (once every 24h) and vancomycin (1 per 12 hours) via pic line, ery tab 333 every 6 hours, Methylprednisolone, and the usual bout of advair, xopenex (instead of albuterol due to ridiculously high blood

pressure), singulair, etc. The vancomycin has been the most interesting, since it is referred to a antibiotic as a "last resort". Also, my at home health care nurse told me that it is so strong that if it was injected into my body without my pic line it would burn away my vein. Joy. Blood tests showed that I had contracted a wonderful staph infection (I'm allergic to penicillin, hence the vancomycin) AND due to all the wonder prednisone my body was now steriod dependent, i.e. addict to droids. My doctor mentioned my immune system was weak as someone with a immune definicy and even used an AIDS patient's immune system as a reference. And as I departed from the hospital, my doctor left me with promising message: I needed to have a sinus surgery within 2 to 4 weeks.Since I began this journey, I have NEVER felt this terrible. With my daily asthma attacks, I have neared dialing 911 many times, probably more than I ever did when I was a curious,

little 6-year-old. Fatigued, stuffy nosed, amazing sinus pressure has left me slept deprived. As I approach my surgery date, March 3, I anticipate the instant relief it will give me, still, i am filled with frustration. If indeed, the definition of insanity is doing the same thing over and over again and expecting different results, please declare me and my wonderful, confused, well-paid doctors certified crazy.What's next for me after surgery, I ask? More antibiotics via the pic-line and gaining control over my asthma. Long-term plans: prayer, hope, and patience. In essence, I don't know what to do but I can't afford to financially and mentally do this every year for the rest of my life. I planned to live a long life. If an bad asthma attack doesn't get to me first (God forbid) I believe depression may set in sooner than later.If anyone knows of any alternatives for sinuses badly infected by the aforementioned bacterias or any other

alternative treatments available, please share. I am at my wits end and need to create a plan to better my life, forever.Thank you listening to my journey (and sarcasm). Sending God's blessings and my best to you all.SPIRARE.Mallory

February 18, 2011

I'm also 26 and recently had a pseudomonas and fungal infection. My doctor put me on oral cipro as well as gentamycin nasal rinses and amphoterricin B nasal irrigations. His feeling was that by applying it topically rather than systemically through an IV it has a higher concentration in the nasal/sinus cavity.

From: samters [mailto:samters ] On Behalf Of malsyopalSent: Friday, February 18, 2011 3:37 AMsamters Subject: 4 surgeries, 5 years, and only 26-years-old...

Hello everyone,Needless to say it's been quite a journey. If you review my previous posts you will know my troubles started with a fun bout of pneumonia. Since then my life has changed completely.And before I continue, please let me note: by no means have I endured the challenges of someone with cancer or an auto-immune deficiency disease. Still, at times this path God has chosen for me is challenging. But what life isn't.When I last touched base with you all, I was happily anticipating attending my third surgery which was to be preformed by the guru of sinuses, Dr. Hwang of Stanford Hospital. Yes, Stanford University's Hospital, deemed the Harvard of the west coast (at least on an episode of Saved By the Bell :-) ). For those who do not know, Dr. Hwang is the Director of the Sinus Institute. As a graduate of Penn State (another sinus hub), he is renowned for his research and knowledge of the sinuses. And he's a really nice guy! Very personable, kind, and he gets it! (As he probably should with such a title).Anyhoo, due to the kindness of one of my many doctors here in Las Vegas, NV, I was referred to Dr. Hwang and he kindly took on my issues. Prior to my third surgery in 2009, I received a pic line for Tobramycin to fight a nice Pseudomonas infection. When that failed, a surgery was booked. My surgery took over 5 hours to complete, with over 10 pounds of sinus tissue removed. Prior to the surgery, I was asked if I would like to donate my sinuses, and I gladly agree without knowing I would be slatered! ;-) Post surgery, I felt great. Due to a high tolerance in pain, I elected to use none of my prescribed pain killers, and found myself dining at my hotel restaurant and taking a shower all the same day. Moving forward, I was placed on a nice dose of predisone, high dosage of levaquin, NeilMed irrigation w/ budesonide and baby shampoo (bubbles! oh joy!). 2 months later, polyps were already growing back. Next I was placed on a course of sporanox, although many previous blood tests showed I had no allergies to molds. After no success, it was then also discovered I had stenotrophomonas. A course of prednisone, bactrim, and biaxin also followed which I took orally for about 4 months. Dr. Huang also confirmed that both the pseudomonas and stenotophomonas were biofilms in my sinuses, thus, we (me and the bacterias) were all one. Always and forever. For better or for worse. 'Til death do us part. A marriage straight out of hell.Then life happened: in February of 2010 I lost my job of 4 years (lovely economy!) however I quickly found a new one with much lousier and more costly insurance and even better, MUCH lower pay (about 50% reduction in income). Hoping to move up the wonderful corporate ladder (and salary range) I had to put off my health so I wouldn't be deemed the sick girl. Therefore no more monthly trips to Stanford and only visits to my confused and scared as hell doctors in Vegas.Fast forward to October of 2010: after a slew of odd jobs (insurance, waitressing, and sales, you name it!), I landed an AWESOME and steady job with a new property. My pay was much closer to where I could survive, but I had plenty of bills to catch up on. Plus, I felt horrible. Drainage, congestion, sneezing, sinus pressure, migraines, asthma - the usual suspects.I made a visit to my ENT (who had originally referred me Stanford) and after clogging two of his suctions and a look in my sinuses, he concluded I needed another surgery. Awesome! With a 90-probabtion period upon me, I wouldn't have insurance until February 1st of 2011.Having no interest in surgery, nor the time, $ or capability with a new job, my doctor pumped me up on predinsone, biaxin, and bactrim. (Please note Advair 500, albuterol, nasonex, singulair, zyrtec-d, neilmed irrigating have always been used to maintain thru this journey). At the end of November (prior to my insurance coverage ending) and after evaluating no success, my doctor switched out the bactrim and biaxin for cipro.Thankfully, due to Obama Care, my mother was able to place me back on her insurance. But of course nothing is ever easy: the insurance coverage would not be effective until January 1, 2011 until the end of the month of my 26th birth month. Amazingly, my birthday is January 3, so I would be covered until the month before my employer's insurance kicked in. On my actual birthday, I had a followup appointment with no perceived improvement. My doctor then wanted to place me on an antibiotic (can't remember the name) that was mainly used for tubercolosis patients and was VERY expensive. My mother's insurance would not approve the antibiotic and I was referred back to my infectious disease specialist who gave me the pic line for my first bout with pseudomonas.On Jan 31, I visited infectious disease doctor and it was found I had a 103º temperature and was wheezing (which I'm used to doing). Based off my previous records and due to my current symptoms, she told me I needed to be admitted to the hospital and begin a course of antibiotics plus leave a wonderful pic line as a suvenior. And so I went for three, angonizing, bad television, bored to death days. As you can see I'm extremely patient.While the 3 days at the hospital was an event in itself, it was found that my polyps were back in full affect and approaching my brain. No wonder I felt like I was going crazy! I returned home for a total of a week and then back to work. Currently, I am now receiving tobramyacin (once every 24h) and vancomycin (1 per 12 hours) via pic line, ery tab 333 every 6 hours, Methylprednisolone, and the usual bout of advair, xopenex (instead of albuterol due to ridiculously high blood pressure), singulair, etc. The vancomycin has been the most interesting, since it is referred to a antibiotic as a "last resort". Also, my at home health care nurse told me that it is so strong that if it was injected into my body without my pic line it would burn away my vein. Joy. Blood tests showed that I had contracted a wonderful staph infection (I'm allergic to penicillin, hence the vancomycin) AND due to all the wonder prednisone my body was now steriod dependent, i.e. addict to droids. My doctor mentioned my immune system was weak as someone with a immune definicy and even used an AIDS patient's immune system as a reference. And as I departed from the hospital, my doctor left me with promising message: I needed to have a sinus surgery within 2 to 4 weeks.Since I began this journey, I have NEVER felt this terrible. With my daily asthma attacks, I have neared dialing 911 many times, probably more than I ever did when I was a curious, little 6-year-old. Fatigued, stuffy nosed, amazing sinus pressure has left me slept deprived. As I approach my surgery date, March 3, I anticipate the instant relief it will give me, still, i am filled with frustration. If indeed, the definition of insanity is doing the same thing over and over again and expecting different results, please declare me and my wonderful, confused, well-paid doctors certified crazy.What's next for me after surgery, I ask? More antibiotics via the pic-line and gaining control over my asthma. Long-term plans: prayer, hope, and patience. In essence, I don't know what to do but I can't afford to financially and mentally do this every year for the rest of my life. I planned to live a long life. If an bad asthma attack doesn't get to me first (God forbid) I believe depression may set in sooner than later.If anyone knows of any alternatives for sinuses badly infected by the aforementioned bacterias or any other alternative treatments available, please share. I am at my wits end and need to create a plan to better my life, forever.Thank you listening to my journey (and sarcasm). Sending God's blessings and my best to you all.SPIRARE.Mallory

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February 18, 2011

Mallory...I really feel for you. I had 1 surgery and was totally occluded in 6

wks, surgery is just a bandaid. Have you tried alternative sources.

Chiropractic, raw food, feingold diet. etc. Some of these modalities work for

some people. Reiki and energy medicine?

There has to be an answer for us, I miss having a sense of smell but really

would prefer to breath, Prayers to you.

>

> Hello everyone,

>

> Needless to say it's been quite a journey. If you review my previous posts

you will know my troubles started with a fun bout of pneumonia. Since then my

life has changed completely.

>

> And before I continue, please let me note: by no means have I endured the