Come On . . . Really?

[Teken]

Hello,

We had the privilege of meeting Jacks new specialist yesterday, Dr. XXX XXX. Although we were only expecting to see her for a pre-procedure check-in, our appointment ending up taking almost two hours. Two hours of talking to one doctor... unheard of to me. She had Jack walk her through his entire experience beginning in the fall of 2008 and then she asked questions to clarify certain parts or to provide additional information she required. After that she dove in to a diagnosis, cause, treatment plan and this is what we found out:

There was a lot of information we received so I'm going to attempt to break it down point form:

- Jack definitely has a motility disorder. Out of the population only 5% of people have various forms of motility disorders, IBS, etc. Out of that 5% only 20% are male. Out of that 20% there is a spectrum and Jacks disorder is on the extreme end and very rare side. So rare that there is no exact name for it currently.

- In the fall of 2008 Jack was diagnosed with pancreatitis as many of you know. Dr. XXXX believes that the pain he experienced at the time was not pancreatitis but in fact a viral infection of his pancreas. The viral infection was what caused his current motility disorder by shutting down his control mechanisms during the course of the infection.

- Jacks small & large bowels have become paralyzed. Their receptors are no longer sending signals to the brain to move the food along through his digestive tract.

Now that we know what this is we can now begin a treatment plan. Unfortunately since this is such a rare disorder, there is no current proven-to-work plan in place. It is by patient basis and will take work and lots of trial and error.

- The first step is that Jack will be going on long term disability, effective immediately. The doctor expects him to need a minimum of 3-6 months, and up to in excess of a year. We will access every three months to see how he is doing. This step is necessary for Jacks mental health as he begins the treatment plan process.

- The second step is that Jack has been put on a liquid diet. Since he is able to swallow, this will be done orally and a feeding tube will not be required. His diet will consist primarily of 4 bottles of Boost or Ensure per day. He can also have any other type of liquid such as juice, pop, tea, coffee, broth, milk based smoothies, etc. The goal is to give his digestive system a break and in time be able to teach it to function again.

- The third part is sleep management. Jack has not been sleeping well for months due to the amount of pain he experiences on a daily basis so he will be taking an anti-anxiety pill to help him fall asleep at night. By being well rested, he should be better suited to cope with his pain during the day.

- The fourth part is pain management during acute attacks. Jack knows when he is about to have an attack that will send him to the hospital so he has been prescribed morphine to take at home. Hopefully this will help him decrease the pain and the attack and minimize the amount of trips we currently take to the Emergency Room.

Jack will be going for the gastroscopy next week Wednesday which will help Dr. XXX confirm that she has ruled out all other diseases and there are no underlying issues that have been overlooked. This will also be required if at some point his treatment plan needs to be sent to the Mayo Clinic.

After the procedure, Jack will get to try an experimental drug called Prucalopride (you can read more about it here - http://en.wikipedia.org/wiki/Prucalopride) which is still in the testing phase. We found out the drug is not $1000/wk but rather it is only $100/mth. The drug doesn't work on all patients so we're not sure if it will be of any value to Jack but we'll know within two weeks of when he starts. If this drug doesn't work the next drug will be Cisapride (http://en.wikipedia.org/wiki/Cisapride) but we will have to apply to have it on compassionate grounds as it was pulled off of the market due to the amount of cardiac arrests it caused. If neither of these drugs work then we'll see what our next option is.

Jack will be seeing Dr. XXX every week to two weeks for the foreseeable future.

This will be a very large adjustment not only for Jack but for our family. It's a lot to take in and we're still in shock.

We thank you all for your ongoing support, prayers and love as we journey through this together.

Lisa XXXXXX

1. What is you impression of this letter?

2. Is there anything in this letter that raises a flag?

3. Are there things stated with in this letter that seem over the top?

Insight

Teken . . .

[NitroPress]

I really don't quite know what to make of this. How old is Jack?

[Jamesbbh]

Yea I don't get it.

[R-132 Fan]

I don't know, if his bowels are paralized, it seems like he would have already been on the liquid diet already.
It takes a while to get onto long term disabiltiy. I have had some friends who have had the misfortune to go on disability and I assure you it takes a while to go through the system.
It's challenging to make a comment on this without knowing if this is a situation that you have been watching from a distance, a close family member, or just something random dropped into your email.

[phbsales]

This seems peculiar:

- The fourth part is pain management during acute attacks. Jack knows when he is about to have an attack that will send him to the hospital so he has been prescribed morphine to take at home. Hopefully this will help him decrease the pain and the attack and minimize the amount of trips we currently take to the Emergency Room.

If Jack knows he's about to have an attack that will send him to the hospital anyway, how is the morphine going to minimize the amount of trips to the ER?

[demographic]

Context? Who sent you this letter? Email?

[Stuart in MN]

I think the only people who would be able to respond intelligently to this letter are doctors, and due to ethical and liability reasons I doubt any of them will respond.

[srmofo]

Honestly.....it sounds like jack is full of shit...literally

[ckadams00]

Originally Posted by srmofo

Honestly.....it sounds like jack is full of shit...literally

[bimmer1980]

Sounds like this letter is from someone close to Jack (wife, etc) and is informing others in his "circle", if you will, of his recent diagnosis and the plan going forward.

If that was the intent, the letter sounded straightforward and to the point. If I had received that letter about one of my dear or distant friends, I would have been surprised, but would have appreciated the update and the prognosis.

No offence would be taken.....

Why, what happened?

[Teken]

Alright some context here: This person is related to my girl friends sister. He is aprox 27 years old.

My observations are as follows: He has never aspired to excel in anything that I know about besides having the ability to exaggerate, whine, and thrive for attention. Having said this, he is one of those people who literally inhale food with out thought or taking the time to enjoy that meal.

He simply knows to gorge himself and the only reason he has stopped eating is the simple fact that there is no more food in sight.

He likes to drink, he is one of those people who buys those semi expensive cigars and just inhales them for something to do.

He is currently one of the most inactive people I have ever met. Yet, prior to meeting him I was told he was some type of spy / wanted assassin.

I shit you not . . .

Now, his SO in my mind has always come across as a pretty squared away person and would be one of the first people to call out bull shit.

When, and where it came up. In this case it seems that anytime it has to do with a boy friend all common sense is lost, and cast to the wind. It literally took two years for her to come clean and accept this short, fat, and unassuming person was clearly NOT a spy, or assassin.

If there was anyone who could be identified as a potential risk in abusing any form of medicine, it would be he.

To put things into perspective: This is the first time the two of them have ever met this doctor. With out so much as any tests, or supporting documentation she has summary decided to order that this sloth take leave from work.

(His SO is currently on MAT leave)

So, his lowly income is the only thing coming in besides the 50% income the SO receives from the MAT leave. With out any testing she is issuing drugs to someone who clearly can't control his basic life never mind using something that has been proven to be highly addictive.

Morphine . . .

In the same breath this doctor has instructed that he only consume Boost as a meal replacement??? There is a follow up e-mail to follow which I received this morning.

What I am trying to ascertain is whether or not I am the one who is off my rocker?? Please keep in mind I have no relations with this fellow and can only provide insight as to my observations of such through the last 5 years of interactions etc.

Insight.

Teken . . .

[R-132 Fan]

What does "MAT" mean? Is it an abbreviation?

[Stinger]

You already know the answer:

Lazy sloth (assassin) finds new way to pawn system in order to get paid to maintain sloth-like lifestyle.

[bimmer1980]

LOLOLOL---well, that certainly lends a different light on the guy.

Sounds like if he exercised a little self control on food, drink, etc, that his problems would decrease or go away.....

Just one question....does he have medical insurance???

just let nature take the course and I'm sure you'll have a darwin story to report in awhile.......

[NitroPress]

In that context... things like IBS, pancreatic pain etc. are among the top imaginary/faked/exaggerated "syndromes" used to get disability, medical claims, etc.

I think I know how I'd bet on this.

[Teken]

Originally Posted by bimmer1980

LOLOLOL---well, that certainly lends a different light on the guy.

Sounds like if he exercised a little self control on food, drink, etc, that his problems would decrease or go away.....

Just one question....does he have medical insurance???

just let nature take the course and I'm sure you'll have a darwin story to report in awhile.......

We have universal health care here. With respect to drugs etc every person has a annual deductible that must be met prior to it being free. This varies based on your income etc.

Originally Posted by R-132 Fan

What does "MAT" mean? Is it an abbreviation?

His SO is on maternity leave = MAT Leave

Originally Posted by NitroPress

In that context... things like IBS, pancreatic pain etc. are among the top imaginary/faked/exaggerated "syndromes" used to get disability, medical claims, etc.

I think I know how I'd bet on this.

I don't want anyone to be swayed by my views and observations here. I can only offer my insight and real world experience with this person. If he is indeed ill I hope very much that he does receive the best care the system can offer him.

Now . . .

Some of the key points I want to high light are these: His SO which as I stated above has always come across as pretty level headed and well grounded.

But, often times (she is the youngest of five kids) is also seeking attention and pretty much has had everything handed to her. Good for her, I don't care either way, but at times this attitude that everyone will come to rescue her from her own failings and mistakes does rub me the wrong way at times.

Now, back to this fellow, the fact that the doctor or anyone did not chime in or state all drinking and smoking needed to stop makes me really pause.

Really?? You as a medical doctor, with out any supporting documents, and only have what a person is stating as material fact. Order someone to consume drugs and liquid foods with out tests?

I have no words for this, really.

As stated also, given his lack of physical fitness and being so young why is there no form of physical therapy being ordered?

When you guys are ready for the second installment please do let me know.

Because I literally fell out of my chair reading the letter . . .

Teken . . .

[ckadams00]

Thanks for the context, I didn't have a clue what I was looking at.
But . . . .you lost me at the "wanted assasin" part.

Usually assasins like to keep in pretty good shape, what with unprovoked ninja attacks and all.

[Teken]

Originally Posted by ckadams00

Thanks for the context, I didn't have a clue what I was looking at.
But . . . .you lost me at the "wanted assasin" part.

Usually assasins like to keep in pretty good shape, what with unprovoked ninja attacks and all.

I lost you?? I have been lost for the last 5 years trying to understand how anyone could spew out such none sense and say it with a straight face!

Yet, his SO accepted this as material fact for more than two years. Regardless, as of today the latest letter paints a dark and unknown future for this young fellow.

To put some things into perspective: During the X-Mas season he some how managed to obtain a walking cane? Is there something wrong with his legs and feet??

I had to watch this guy attempted to remove a broken aszz star off of the X-Mas tree for 12 minutes. Not a soul in the room uttered a word besides me getting up to take a piss because I couldn't stand watching this Gong Show any longer.

Lucky for me the broken aszz star was removed via his walking cane upon my return.

Finances: Both of these people have no clue how to manage their funds. Yet they live fast and lose, don't have a care in the world.

Why??? Because it seems there is always someone out there bailing them out at each and every turn. How does it affect me ?? I have to listen to this drivel on a weekly basis . . .

At first it was like * I hope he gets better etc *

Now, after seeing this guy laying around playing X-Box, Surfing the net, and watching TV all day. All the while others are working hand and feet to serve this guy.

I have to take pause and ask what the blue fuck is wrong with these people and why hasn't anyone called him out??

The family is clearly misguided or blind to it all. His employer, I have to feel for these poor people.

The extended family (Thats me & my GF) have to listen to the endless voice mails, e-mails, and family gatherings about this.

Teken . . .

[On1Wheel]

Originally Posted by Teken

I lost you?? I have been lost for the last 5 years trying to understand how anyone could spew out such none sense and say it with a straight face!

Yet, his SO accepted this as material fact for more than two years. Regardless, as of today the latest letter paints a dark and unknown future for this young fellow.

To put some things into perspective: During the X-Mas season he some how managed to obtain a walking cane? Is there something wrong with his legs and feet??

I had to watch this guy attempted to remove a broken aszz star off of the X-Mas tree for 12 minutes. Not a soul in the room uttered a word besides me getting up to take a piss because I couldn't stand watching this Gong Show any longer.

Lucky for me the broken aszz star was removed via his walking cane upon my return.

Finances: Both of these people have no clue how to manage their funds. Yet they live fast and lose, don't have a care in the world.

Why??? Because it seems there is always someone out there bailing them out at each and every turn. How does it affect me ?? I have to listen to this drivel on a weekly basis . . .

At first it was like * I hope he gets better etc *

Now, after seeing this guy laying around playing X-Box, Surfing the net, and watching TV all day. All the while others are working hand and feet to serve this guy.

I have to take pause and ask what the blue fuck is wrong with these people and why hasn't anyone called him out??

The family is clearly misguided or blind to it all. His employer, I have to feel for these poor people.

The extended family (Thats me & my GF) have to listen to the endless voice mails, e-mails, and family gatherings about this.

Teken . . .

I'd strongly suggest they get a second opinion and try to make it seem as though it's because you're concerned for his health. If another doctor corroborates the diagnosis, then I'd let it go.

There's two reasons to do that. First, you obviously don't think he has a condition that warrants him going on disability nor should he be given morphine. If you are right, then he's fleecing your healthcare system and could potentially get hooked on the drugs.

Second, what if he really does have some other condition and this quack is trying to be Dr. House and just tossing treatments at him? He could wind up dead and his child fatherless (assuming the baby his SO gave birth to is his).

It might be hard to convince them to get that second opinion, but if they are being taken advantage of by the doctor then maybe they'll listen.

[truckman5000]

at first i thought Jack was a young kid..just assumed.
But with reading, probelly 30% of this country people are tring to get something for free. So With Jack being a person that dosent want to make something of himself. Im not surprised. And with doctors, you just need to find the rite one. Like below...

I hired this kid, he was always 25-30 mins late in the morning. He seemed screwed up.
He was late because the methadone clinic opened at 7:30. He had a doctors note saying he needed ect...haha