Re: Glitches & Work in Progress Part 2

[Guest guest]

Sounds like you have great doctors They will figure out what good for you good Lunck Gascoigne SD, 50 yrs old, Renaud's 2008, IPF 7/2009To: Breathe-Support ; pulmonaryfibrosis Sent: Fri, January 22, 2010 10:26:24 PMSubject: Glitches & Work in Progress Part 2

OK I’m

BACK……same warning …….LONG POST.. For those of

you that remember, I whinged about copping Sudden Onset Sensory-Neural Hearing

Deficit last year…..well all the investigations that took place because

of that have finally lead to me being found to have a Patent Foramen Ovale

(‘Hole in the Heart ‘ in layman’s language!) It was diagnosed

via a ‘Bubble Echocardiogram’ & confirmed by a

Trans-oesophageal Echo (done under Anaesthetic) This is a

Congenital Heart Defect that initially causes left-to-right shunting of blood

from the L Ventricle (Oxygenated Blood) to the R Ventricle (de-oxygenated

blood)…THIS is when a closure is best done…….. BUT, over

time, if left undetected & unclosed a complication can sometimes arise

& the pressure in the Right Ventricle becomes greater than that in the Left

(Not the way it should be!) & the Blood Flow goes into Reverse & cause

a shunting of blood from the Right Ventricle into the Left…….NOT

GOOD! This is called

Eisenmenger’s Syndrome & that’s what has happened to me! It’s a

form of Pulmonary Hypertension with extra implications because of PFO & the

‘dirty’ blood mixing with the ‘Clean’ stuff &

getting carried all around the body! Cyanosis, Strokes, Clots…blah,

Blah…..BLAH! Initially I

thought it would be just a matter of having the Darn thing closed (by

catheterisation & a complicated ‘umbrella’ stent) BUT…

once Right to Left Shunting has occurred it is generally considered too late to

do so…Trying to Shut the Door after the Horse has Bolted Scenario. In fact, once

the Reverse Shunt has occurred it’s considered better from a PH point of

view to leave the Hole ‘cos it acts as an ‘Emergency Pressure

Valve’…...closing the Hole could just kill me faster! I’ll be

seeing a Cardiac Surgeon on the 8th Feb in Brisbane to discuss

options & management. It was my new

Pulmo Dude who Gently pointed out the complications & the uncertainty of

closure as an Option. The Neurologist who found it in the first place made it sound

like a Simple Solution…relatively low risk surgery…..Wham Bham

…..she’ll be fixed in a jiffy…but she clearly didn’t

realise the implication of the Direction of the Shunting… There

may be a slight chance that the surgery will still go ahead depending on what

they find when they investigate the Pulmonary Artery pressures via an

Angiogram. If I’m really lucky the reverse Shunt has only just started

& there may be a possibility that they’ll still decide to close the

hole. Not sure where that leaves me with the PH..whether that will stop the PH

from developing further or not! (or at least stop it from developing because of

the PFO…as we all know, PF & Connective Tissue Disease are also

causes of PH as well!) Stop one cause but end up with it progressing because of

the other problems anyway! Lots of things

to consider! Sooooooo

I’ll be seeing the Greek/Australian Cardio Man THEN my Chinese/Australian

Pulmo Dude on the same day ….they’ll work together in figuring out

where to go from there as far as getting me into a PH Program &

Management & then further evaluation of my Connective Tissue Mystery &

evaluating just where my Lungs are up to in the PF Scale (he thinks I’m

in the ‘Moderately Affected Range but still in Stable Phase!). As an amazing

coincidence both the Cardio & the Pulmo have their Brisbane Clinics/Labs in

the SAME Building……. Here was me

thinking LAST YEAR was my Year of Medical Maintenance & that 2010 would be

a Doddle! But you

know… how lucky I am……..if that darn Hole had been undetected

but bigger the Eisenmenger’s Syndrome could have started yonks

ago…babies, children & young adults get it…..it is considered

too dangerous to become pregnant with this Heart Problem….. I’ve got

2 grown daughters & 3 grandchildren that might not exist if this had played

out earlier in my life! In the

meantime I’ve been told to use my POC whenever I do ANYTHING active &

for longer after exertion,,,, been put on Plavix instead of mere Low Dose

Aspirin to keep my Blood thin….. BTW..still no

one can tell me why the Ear thing happened! Maybe it did me a favour..without

that I’d still be ignorant of my weird little Shunting Habit!

……….Lotsa to those of you who hung in there with

me…….. in Oz

in

Oz

IPF:

Fibrotic NSIP/UIP ??

Reynauds'

May

2007

Express yourself with over 10,000 FREE Email Smileys -

click here!

[Guest guest]

I like your posts no matter how long. I'm sorry to hear of the new issue

but so glad to hear of your excellent sounding Pulmonologist. It does

sound like they're willing to discuss and inform and present options and

that they're prepared to treat in a coordinated fashion considering all

factors. I knew on my catheter checking the shunt balance seemed to be

an item they considered quite important but didn't know the details of

something like they found with you. The first thought of a hole in your

heart sounds frightening but again they're still to determine the degree

and risks. Best case I guess and I'm hoping it will be something they

feel they can just continue to monitor. It's amazing how many things

like this exist that require deep digging to uncover. I know another

year of medicos isn't what you wanted but at least they sound like good

ones. I guess we're all sort of stuck with doctors now more than we

desire but it sure helps when they are ones we're comfortable with.

>

>

>

> OK I'm BACK..same warning ...LONG POST..

>

> For those of you that remember, I whinged about copping Sudden Onset

> Sensory-Neural Hearing Deficit last year...well all the investigations

that

> took place because of that have finally lead to me being found to have

a

> Patent Foramen Ovale ('Hole in the Heart ' in layman's language!) It

was

> diagnosed via a 'Bubble Echocardiogram' & confirmed by a

Trans-oesophageal

> Echo (done under Anaesthetic)

>

> This is a Congenital Heart Defect that initially causes left-to-right

> shunting of blood from the L Ventricle (Oxygenated Blood) to the R

Ventricle

> (de-oxygenated blood).THIS is when a closure is best done.... BUT,

over

> time, if left undetected & unclosed a complication can sometimes arise

& the

> pressure in the Right Ventricle becomes greater than that in the Left

(Not

> the way it should be!) & the Blood Flow goes into Reverse & cause a

shunting

> of blood from the Right Ventricle into the Left...NOT GOOD!

>

> This is called Eisenmenger's Syndrome & that's what has happened to

me!

>

> It's a form of Pulmonary Hypertension with extra implications because

of PFO

> & the 'dirty' blood mixing with the 'Clean' stuff & getting carried

all

> around the body! Cyanosis, Strokes, Clots.blah, Blah...BLAH!

>

> Initially I thought it would be just a matter of having the Darn thing

> closed (by catheterisation & a complicated 'umbrella' stent) BUT. once

Right

> to Left Shunting has occurred it is generally considered too late to

do

> so.Trying to Shut the Door after the Horse has Bolted Scenario.

>

> In fact, once the Reverse Shunt has occurred it's considered better

from a

> PH point of view to leave the Hole 'cos it acts as an 'Emergency

Pressure

> Valve'...closing the Hole could just kill me faster!

>

> I'll be seeing a Cardiac Surgeon on the 8th Feb in Brisbane to discuss

> options & management.

>

> It was my new Pulmo Dude who Gently pointed out the complications &

the

> uncertainty of closure as an Option. The Neurologist who found it in

the

> first place made it sound like a Simple Solution.relatively low risk

> surgery...Wham Bham ...she'll be fixed in a jiffy.but she clearly

didn't

> realise the implication of the Direction of the Shunting.

>

> There may be a slight chance that the surgery will still go ahead

depending

> on what they find when they investigate the Pulmonary Artery pressures

via

> an Angiogram. If I'm really lucky the reverse Shunt has only just

started &

> there may be a possibility that they'll still decide to close the

hole. Not

> sure where that leaves me with the PH..whether that will stop the PH

from

> developing further or not! (or at least stop it from developing

because of

> the PFO.as we all know, PF & Connective Tissue Disease are also causes

of PH

> as well!) Stop one cause but end up with it progressing because of the

other

> problems anyway!

>

> Lots of things to consider!

>

> Sooooooo I'll be seeing the Greek/Australian Cardio Man THEN my

> Chinese/Australian Pulmo Dude on the same day ..they'll work together

in

> figuring out where to go from there as far as getting me into a PH

Program

> & Management & then further evaluation of my Connective Tissue Mystery

&

> evaluating just where my Lungs are up to in the PF Scale (he thinks

I'm in

> the 'Moderately Affected Range but still in Stable Phase!).

>

> As an amazing coincidence both the Cardio & the Pulmo have their

Brisbane

> Clinics/Labs in the SAME Building...

>

> Here was me thinking LAST YEAR was my Year of Medical Maintenance &

that

> 2010 would be a Doddle!

>

> But you know. how lucky I am....if that darn Hole had been undetected

but

> bigger the Eisenmenger's Syndrome could have started yonks ago.babies,

> children & young adults get it...it is considered too dangerous to

become

> pregnant with this Heart Problem...

>

> I've got 2 grown daughters & 3 grandchildren that might not exist if

this

> had played out earlier in my life!

>

> In the meantime I've been told to use my POC whenever I do ANYTHING

active &

> for longer after exertion,,,,been put on Plavix instead of mere Low

Dose

> Aspirin to keep my Blood thin...

>

> BTW..still no one can tell me why the Ear thing happened! Maybe it did

me a

> favour..without that I'd still be ignorant of my weird little Shunting

> Habit!

>

> <http://www.smileycentral.com/?partner=ZSzeb001_ZSYYYYYYYYAU>

Question

> Mark....Lotsa to those of you who hung in there with me....

>

> in Oz

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> in Oz

>

> IPF: Fibrotic NSIP/UIP ??

> Reynauds'

> May 2007

>

>

>

>

>

>

>

>

>

> _____

>

> Express yourself with over 10,000 FREE Email Smileys - click here!

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

>

[Guest guest]

....I had no idea what a complex woman you are. It sounds as if your plate is suddenly full. That's an awful lot to take in missy.

I'm so happy that you've found a pulmo who respects your intelligence and actually LISTENS. They are a rare breed in my experience. When you've got one who speaks in terms of alternatives and choices and decisions you know you've got a gem. Hang on to his labcoat and don't let him get away!

I'll be keeping my fingers crossed that they can come up with a good solution for your heart. It's astonishing to me that you've lived your entire life, had children, raised them and never knew. Amazing isn't it what our bodies are capable of coping with?

Keep moving forward my friend, that's all there is to do. Use the O2, it's probably more important now than it ever was. No unnecessary stressing of your heart my dear!

You are in my thoughts . I wish I was there to give you a huge hug!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support ; pulmonaryfibrosis Sent: Fri, January 22, 2010 11:26:24 PMSubject: Glitches & Work in Progress Part 2

OK I’m BACK……same warning …….LONG POST..

For those of you that remember, I whinged about copping Sudden Onset Sensory-Neural Hearing Deficit last year…..well all the investigations that took place because of that have finally lead to me being found to have a Patent Foramen Ovale (‘Hole in the Heart ‘ in layman’s language!) It was diagnosed via a ‘Bubble Echocardiogram’ & confirmed by a Trans-oesophageal Echo (done under Anaesthetic)

This is a Congenital Heart Defect that initially causes left-to-right shunting of blood from the L Ventricle (Oxygenated Blood) to the R Ventricle (de-oxygenated blood)…THIS is when a closure is best done…….. BUT, over time, if left undetected & unclosed a complication can sometimes arise & the pressure in the Right Ventricle becomes greater than that in the Left (Not the way it should be!) & the Blood Flow goes into Reverse & cause a shunting of blood from the Right Ventricle into the Left…….NOT GOOD!

This is called Eisenmenger’s Syndrome & that’s what has happened to me!

It’s a form of Pulmonary Hypertension with extra implications because of PFO & the ‘dirty’ blood mixing with the ‘Clean’ stuff & getting carried all around the body! Cyanosis, Strokes, Clots…blah, Blah…..BLAH!

Initially I thought it would be just a matter of having the Darn thing closed (by catheterisation & a complicated ‘umbrella’ stent) BUT… once Right to Left Shunting has occurred it is generally considered too late to do so…Trying to Shut the Door after the Horse has Bolted Scenario.

In fact, once the Reverse Shunt has occurred it’s considered better from a PH point of view to leave the Hole ‘cos it acts as an ‘Emergency Pressure Valve’…..closing the Hole could just kill me faster!

I’ll be seeing a Cardiac Surgeon on the 8th Feb in Brisbane to discuss options & management.

It was my new Pulmo Dude who Gently pointed out the complications & the uncertainty of closure as an Option. The Neurologist who found it in the first place made it sound like a Simple Solution…relatively low risk surgery…..Wham Bham …..she’ll be fixed in a jiffy…but she clearly didn’t realise the implication of the Direction of the Shunting…

There may be a slight chance that the surgery will still go ahead depending on what they find when they investigate the Pulmonary Artery pressures via an Angiogram. If I’m really lucky the reverse Shunt has only just started & there may be a possibility that they’ll still decide to close the hole. Not sure where that leaves me with the PH..whether that will stop the PH from developing further or not! (or at least stop it from developing because of the PFO…as we all know, PF & Connective Tissue Disease are also causes of PH as well!) Stop one cause but end up with it progressing because of the other problems anyway!

Lots of things to consider!

Sooooooo I’ll be seeing the Greek/Australian Cardio Man THEN my Chinese/Australian Pulmo Dude on the same day ….they’ll work together in figuring out where to go from there as far as getting me into a PH Program & Management & then further evaluation of my Connective Tissue Mystery & evaluating just where my Lungs are up to in the PF Scale (he thinks I’m in the ‘Moderately Affected Range but still in Stable Phase!).

As an amazing coincidence both the Cardio & the Pulmo have their Brisbane Clinics/Labs in the SAME Building…….

Here was me thinking LAST YEAR was my Year of Medical Maintenance & that 2010 would be a Doddle!

But you know… how lucky I am……..if that darn Hole had been undetected but bigger the Eisenmenger’s Syndrome could have started yonks ago…babies, children & young adults get it…..it is considered too dangerous to become pregnant with this Heart Problem…..

I’ve got 2 grown daughters & 3 grandchildren that might not exist if this had played out earlier in my life!

In the meantime I’ve been told to use my POC whenever I do ANYTHING active & for longer after exertion,,,, been put on Plavix instead of mere Low Dose Aspirin to keep my Blood thin…..

BTW..still no one can tell me why the Ear thing happened! Maybe it did me a favour..without that I’d still be ignorant of my weird little Shunting Habit!

……….Lotsa to those of you who hung in there with me……..

in Oz

in Oz IPF: Fibrotic NSIP/UIP ??Reynauds' May 2007

Express yourself with over 10,000 FREE Email Smileys - click here!

[Guest guest]

. You are one tough cookie, girl. How life twists and turns is so bizarre. I'll be adding you to my prayer list, and sending good thoughts your way.

B

Barbara McD

PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever

Beautiful Western NC

Counting my blessings: #32 - Good numbers!

Consider what a great forest is set ablaze by a small spark. ( 3:5)

To: Breathe-Support ; pulmonaryfibrosis Sent: Fri, January 22, 2010 11:26:24 PMSubject: Glitches & Work in Progress Part 2

OK I’m BACK……same warning …….LONG POST..

For those of you that remember, I whinged about copping Sudden Onset Sensory-Neural Hearing Deficit last year…..well all the investigations that took place because of that have finally lead to me being found to have a Patent Foramen Ovale (‘Hole in the Heart ‘ in layman’s language!) It was diagnosed via a ‘Bubble Echocardiogram’ & confirmed by a Trans-oesophageal Echo (done under Anaesthetic)

This is a Congenital Heart Defect that initially causes left-to-right shunting of blood from the L Ventricle (Oxygenated Blood) to the R Ventricle (de-oxygenated blood)…THIS is when a closure is best done…….. BUT, over time, if left undetected & unclosed a complication can sometimes arise & the pressure in the Right Ventricle becomes greater than that in the Left (Not the way it should be!) & the Blood Flow goes into Reverse & cause a shunting of blood from the Right Ventricle into the Left…….NOT GOOD!

This is called Eisenmenger’s Syndrome & that’s what has happened to me!

It’s a form of Pulmonary Hypertension with extra implications because of PFO & the ‘dirty’ blood mixing with the ‘Clean’ stuff & getting carried all around the body! Cyanosis, Strokes, Clots…blah, Blah…..BLAH!

Initially I thought it would be just a matter of having the Darn thing closed (by catheterisation & a complicated ‘umbrella’ stent) BUT… once Right to Left Shunting has occurred it is generally considered too late to do so…Trying to Shut the Door after the Horse has Bolted Scenario.

In fact, once the Reverse Shunt has occurred it’s considered better from a PH point of view to leave the Hole ‘cos it acts as an ‘Emergency Pressure Valve’…..closing the Hole could just kill me faster!

I’ll be seeing a Cardiac Surgeon on the 8th Feb in Brisbane to discuss options & management.

It was my new Pulmo Dude who Gently pointed out the complications & the uncertainty of closure as an Option. The Neurologist who found it in the first place made it sound like a Simple Solution…relatively low risk surgery…..Wham Bham …..she’ll be fixed in a jiffy…but she clearly didn’t realise the implication of the Direction of the Shunting…

There may be a slight chance that the surgery will still go ahead depending on what they find when they investigate the Pulmonary Artery pressures via an Angiogram. If I’m really lucky the reverse Shunt has only just started & there may be a possibility that they’ll still decide to close the hole. Not sure where that leaves me with the PH..whether that will stop the PH from developing further or not! (or at least stop it from developing because of the PFO…as we all know, PF & Connective Tissue Disease are also causes of PH as well!) Stop one cause but end up with it progressing because of the other problems anyway!

Lots of things to consider!

Sooooooo I’ll be seeing the Greek/Australian Cardio Man THEN my Chinese/Australian Pulmo Dude on the same day ….they’ll work together in figuring out where to go from there as far as getting me into a PH Program & Management & then further evaluation of my Connective Tissue Mystery & evaluating just where my Lungs are up to in the PF Scale (he thinks I’m in the ‘Moderately Affected Range but still in Stable Phase!).

As an amazing coincidence both the Cardio & the Pulmo have their Brisbane Clinics/Labs in the SAME Building…….

Here was me thinking LAST YEAR was my Year of Medical Maintenance & that 2010 would be a Doddle!

But you know… how lucky I am……..if that darn Hole had been undetected but bigger the Eisenmenger’s Syndrome could have started yonks ago…babies, children & young adults get it…..it is considered too dangerous to become pregnant with this Heart Problem…..

I’ve got 2 grown daughters & 3 grandchildren that might not exist if this had played out earlier in my life!

In the meantime I’ve been told to use my POC whenever I do ANYTHING active & for longer after exertion,,,, been put on Plavix instead of mere Low Dose Aspirin to keep my Blood thin…..

BTW..still no one can tell me why the Ear thing happened! Maybe it did me a favour..without that I’d still be ignorant of my weird little Shunting Habit!

……….Lotsa to those of you who hung in there with me……..

in Oz

in Oz IPF: Fibrotic NSIP/UIP ??Reynauds' May 2007

Express yourself with over 10,000 FREE Email Smileys - click here!

[Guest guest]

Hi . Sorry to hear about the new complications but at least the docs found

them and are working on getting you better. Keep you chin up girl,get better.

Merf 62 IPF 05

>

>

>

> OK I'm BACK..same warning ...LONG POST..

>

> For those of you that remember, I whinged about copping Sudden Onset

> Sensory-Neural Hearing Deficit last year...well all the investigations that

> took place because of that have finally lead to me being found to have a

> Patent Foramen Ovale ('Hole in the Heart ' in layman's language!) It was

> diagnosed via a 'Bubble Echocardiogram' & confirmed by a Trans-oesophageal

> Echo (done under Anaesthetic)

>

> This is a Congenital Heart Defect that initially causes left-to-right

> shunting of blood from the L Ventricle (Oxygenated Blood) to the R Ventricle

> (de-oxygenated blood).THIS is when a closure is best done.... BUT, over

> time, if left undetected & unclosed a complication can sometimes arise & the

> pressure in the Right Ventricle becomes greater than that in the Left (Not

> the way it should be!) & the Blood Flow goes into Reverse & cause a shunting

> of blood from the Right Ventricle into the Left...NOT GOOD!

>

> This is called Eisenmenger's Syndrome & that's what has happened to me!

>

> It's a form of Pulmonary Hypertension with extra implications because of PFO

> & the 'dirty' blood mixing with the 'Clean' stuff & getting carried all

> around the body! Cyanosis, Strokes, Clots.blah, Blah...BLAH!

>

> Initially I thought it would be just a matter of having the Darn thing

> closed (by catheterisation & a complicated 'umbrella' stent) BUT. once Right

> to Left Shunting has occurred it is generally considered too late to do

> so.Trying to Shut the Door after the Horse has Bolted Scenario.

>

> In fact, once the Reverse Shunt has occurred it's considered better from a

> PH point of view to leave the Hole 'cos it acts as an 'Emergency Pressure

> Valve'...closing the Hole could just kill me faster!

>

> I'll be seeing a Cardiac Surgeon on the 8th Feb in Brisbane to discuss

> options & management.

>

> It was my new Pulmo Dude who Gently pointed out the complications & the

> uncertainty of closure as an Option. The Neurologist who found it in the

> first place made it sound like a Simple Solution.relatively low risk

> surgery...Wham Bham ...she'll be fixed in a jiffy.but she clearly didn't

> realise the implication of the Direction of the Shunting.

>

> There may be a slight chance that the surgery will still go ahead depending

> on what they find when they investigate the Pulmonary Artery pressures via

> an Angiogram. If I'm really lucky the reverse Shunt has only just started &

> there may be a possibility that they'll still decide to close the hole. Not

> sure where that leaves me with the PH..whether that will stop the PH from

> developing further or not! (or at least stop it from developing because of

> the PFO.as we all know, PF & Connective Tissue Disease are also causes of PH

> as well!) Stop one cause but end up with it progressing because of the other

> problems anyway!

>

> Lots of things to consider!

>

> Sooooooo I'll be seeing the Greek/Australian Cardio Man THEN my

> Chinese/Australian Pulmo Dude on the same day ..they'll work together in

> figuring out where to go from there as far as getting me into a PH Program

> & Management & then further evaluation of my Connective Tissue Mystery &

> evaluating just where my Lungs are up to in the PF Scale (he thinks I'm in

> the 'Moderately Affected Range but still in Stable Phase!).

>

> As an amazing coincidence both the Cardio & the Pulmo have their Brisbane

> Clinics/Labs in the SAME Building...

>

> Here was me thinking LAST YEAR was my Year of Medical Maintenance & that

> 2010 would be a Doddle!

>

> But you know. how lucky I am....if that darn Hole had been undetected but

> bigger the Eisenmenger's Syndrome could have started yonks ago.babies,

> children & young adults get it...it is considered too dangerous to become

> pregnant with this Heart Problem...

>

> I've got 2 grown daughters & 3 grandchildren that might not exist if this

> had played out earlier in my life!

>

> In the meantime I've been told to use my POC whenever I do ANYTHING active &

> for longer after exertion,,,,been put on Plavix instead of mere Low Dose

> Aspirin to keep my Blood thin...

>

> BTW..still no one can tell me why the Ear thing happened! Maybe it did me a

> favour..without that I'd still be ignorant of my weird little Shunting

> Habit!

>

> <http://www.smileycentral.com/?partner=ZSzeb001_ZSYYYYYYYYAU> Question

> Mark....Lotsa to those of you who hung in there with me....

>

> in Oz

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> in Oz

>

> IPF: Fibrotic NSIP/UIP ??

> Reynauds'

> May 2007

>

>

>

>

>

>

>

>

>

> _____

>

> Express yourself with over 10,000 FREE Email Smileys - click here!

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

>

[Guest guest]

wow

too much to absorb

glad you are finding docs who listen to you and are working with you

my thoughts are with you on this journey

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Glitches & Work in Progress Part 2To: Breathe-Support , pulmonaryfibrosis Date: Friday, January 22, 2010, 11:26 PM

OK I’m BACK……same warning …….LONG POST..

For those of you that remember, I whinged about copping Sudden Onset Sensory-Neural Hearing Deficit last year…..well all the investigations that took place because of that have finally lead to me being found to have a Patent Foramen Ovale (‘Hole in the Heart ‘ in layman’s language!) It was diagnosed via a ‘Bubble Echocardiogram’ & confirmed by a Trans-oesophageal Echo (done under Anaesthetic)

This is a Congenital Heart Defect that initially causes left-to-right shunting of blood from the L Ventricle (Oxygenated Blood) to the R Ventricle (de-oxygenated blood)…THIS is when a closure is best done…….. BUT, over time, if left undetected & unclosed a complication can sometimes arise & the pressure in the Right Ventricle becomes greater than that in the Left (Not the way it should be!) & the Blood Flow goes into Reverse & cause a shunting of blood from the Right Ventricle into the Left…….NOT GOOD!

This is called Eisenmenger’s Syndrome & that’s what has happened to me!

It’s a form of Pulmonary Hypertension with extra implications because of PFO & the ‘dirty’ blood mixing with the ‘Clean’ stuff & getting carried all around the body! Cyanosis, Strokes, Clots…blah, Blah…..BLAH!

Initially I thought it would be just a matter of having the Darn thing closed (by catheterisation & a complicated ‘umbrella’ stent) BUT… once Right to Left Shunting has occurred it is generally considered too late to do so…Trying to Shut the Door after the Horse has Bolted Scenario.

In fact, once the Reverse Shunt has occurred it’s considered better from a PH point of view to leave the Hole ‘cos it acts as an ‘Emergency Pressure Valve’…..closing the Hole could just kill me faster!

I’ll be seeing a Cardiac Surgeon on the 8th Feb in Brisbane to discuss options & management.

It was my new Pulmo Dude who Gently pointed out the complications & the uncertainty of closure as an Option. The Neurologist who found it in the first place made it sound like a Simple Solution…relatively low risk surgery…..Wham Bham …..she’ll be fixed in a jiffy…but she clearly didn’t realise the implication of the Direction of the Shunting…

There may be a slight chance that the surgery will still go ahead depending on what they find when they investigate the Pulmonary Artery pressures via an Angiogram. If I’m really lucky the reverse Shunt has only just started & there may be a possibility that they’ll still decide to close the hole. Not sure where that leaves me with the PH..whether that will stop the PH from developing further or not! (or at least stop it from developing because of the PFO…as we all know, PF & Connective Tissue Disease are also causes of PH as well!) Stop one cause but end up with it progressing because of the other problems anyway!

Lots of things to consider!

Sooooooo I’ll be seeing the Greek/Australian Cardio Man THEN my Chinese/Australian Pulmo Dude on the same day ….they’ll work together in figuring out where to go from there as far as getting me into a PH Program & Management & then further evaluation of my Connective Tissue Mystery & evaluating just where my Lungs are up to in the PF Scale (he thinks I’m in the ‘Moderately Affected Range but still in Stable Phase!).

As an amazing coincidence both the Cardio & the Pulmo have their Brisbane Clinics/Labs in the SAME Building…….

Here was me thinking LAST YEAR was my Year of Medical Maintenance & that 2010 would be a Doddle!

But you know… how lucky I am……..if that darn Hole had been undetected but bigger the Eisenmenger’s Syndrome could have started yonks ago…babies, children & young adults get it…..it is considered too dangerous to become pregnant with this Heart Problem…..

I’ve got 2 grown daughters & 3 grandchildren that might not exist if this had played out earlier in my life!

In the meantime I’ve been told to use my POC whenever I do ANYTHING active & for longer after exertion,,,, been put on Plavix instead of mere Low Dose Aspirin to keep my Blood thin…..

BTW..still no one can tell me why the Ear thing happened! Maybe it did me a favour..without that I’d still be ignorant of my weird little Shunting Habit!

……….Lotsa to those of you who hung in there with me……..

in Oz

in Oz IPF: Fibrotic NSIP/UIP ??Reynauds' May 2007

Express yourself with over 10,000 FREE Email Smileys - click here!

[Guest guest]

, Please don't get pregnant. I don't think a baby would fit into your lifestyle these days (hee hee) You have indeed found what sounds like the perfect medical team. In the same building no less. Wonderful.My goodness I hardly know what to express my thrill about your new team or my sadness that you have on going problems otherthan IPF. Could you slow it down and just have ONE crisis at a time.. Thank You. You know I love you..Don't you have to fly to Brisbane ? Lordy girl take care of YOU...waiting for part 3

Love & PrayersPeggyIPF, 2004

[Guest guest]

,Wow is all I can say. Congrats on the new pulmodude, who really seems to get it also. They are few and far between. Sorry about your heart thing, Hopefully it's not as serious as it sounds, but it also sounds like the docs have things in hand either way. Keep on keeping on girlfriend!Kathy ILD/Hypersensitivity pneumonitis 3/08Subject: Glitches & Work in Progress Part 2To: Breathe-Support , pulmonaryfibrosis Date: Friday, January 22, 2010, 8:26 PM

OK I’m

BACK……same warning …….LONG POST.. For those of

you that remember, I whinged about copping Sudden Onset Sensory-Neural Hearing

Deficit last year…..well all the investigations that took place because

of that have finally lead to me being found to have a Patent Foramen Ovale

(‘Hole in the Heart ‘ in layman’s language!) It was diagnosed

via a ‘Bubble Echocardiogram’ & confirmed by a

Trans-oesophageal Echo (done under Anaesthetic) This is a

Congenital Heart Defect that initially causes left-to-right shunting of blood

from the L Ventricle (Oxygenated Blood) to the R Ventricle (de-oxygenated

blood)…THIS is when a closure is best done…….. BUT, over

time, if left undetected & unclosed a complication can sometimes arise

& the pressure in the Right Ventricle becomes greater than that in the Left

(Not the way it should be!) & the Blood Flow goes into Reverse & cause

a shunting of blood from the Right Ventricle into the Left…….NOT

GOOD! This is called

Eisenmenger’s Syndrome & that’s what has happened to me! It’s a

form of Pulmonary Hypertension with extra implications because of PFO & the

‘dirty’ blood mixing with the ‘Clean’ stuff &

getting carried all around the body! Cyanosis, Strokes, Clots…blah,

Blah…..BLAH! Initially I

thought it would be just a matter of having the Darn thing closed (by

catheterisation & a complicated ‘umbrella’ stent) BUT…

once Right to Left Shunting has occurred it is generally considered too late to

do so…Trying to Shut the Door after the Horse has Bolted Scenario. In fact, once

the Reverse Shunt has occurred it’s considered better from a PH point of

view to leave the Hole ‘cos it acts as an ‘Emergency Pressure

Valve’…..closing the Hole could just kill me faster! I’ll be

seeing a Cardiac Surgeon on the 8th Feb in Brisbane to discuss

options & management. It was my new

Pulmo Dude who Gently pointed out the complications & the uncertainty of

closure as an Option. The Neurologist who found it in the first place made it sound

like a Simple Solution…relatively low risk surgery…..Wham Bham

…..she’ll be fixed in a jiffy…but she clearly didn’t

realise the implication of the Direction of the Shunting… There

may be a slight chance that the surgery will still go ahead depending on what

they find when they investigate the Pulmonary Artery pressures via an

Angiogram. If I’m really lucky the reverse Shunt has only just started

& there may be a possibility that they’ll still decide to close the

hole. Not sure where that leaves me with the PH..whether that will stop the PH

from developing further or not! (or at least stop it from developing because of

the PFO…as we all know, PF & Connective Tissue Disease are also

causes of PH as well!) Stop one cause but end up with it progressing because of

the other problems anyway! Lots of things

to consider! Sooooooo

I’ll be seeing the Greek/Australian Cardio Man THEN my Chinese/Australian

Pulmo Dude on the same day ….they’ll work together in figuring out

where to go from there as far as getting me into a PH Program &

Management & then further evaluation of my Connective Tissue Mystery &

evaluating just where my Lungs are up to in the PF Scale (he thinks I’m

in the ‘Moderately Affected Range but still in Stable Phase!). As an amazing

coincidence both the Cardio & the Pulmo have their Brisbane Clinics/Labs in

the SAME Building……. Here was me

thinking LAST YEAR was my Year of Medical Maintenance & that 2010 would be

a Doddle! But you

know… how lucky I am……..if that darn Hole had been undetected

but bigger the Eisenmenger’s Syndrome could have started yonks

ago…babies, children & young adults get it…..it is considered

too dangerous to become pregnant with this Heart Problem….. I’ve got

2 grown daughters & 3 grandchildren that might not exist if this had played

out earlier in my life! In the

meantime I’ve been told to use my POC whenever I do ANYTHING active &

for longer after exertion,,,, been put on Plavix instead of mere Low Dose

Aspirin to keep my Blood thin….. BTW..still no

one can tell me why the Ear thing happened! Maybe it did me a favour..without

that I’d still be ignorant of my weird little Shunting Habit!

……….Lotsa to those of you who hung in there with

me…….. in Oz

in

Oz

IPF:

Fibrotic NSIP/UIP ??

Reynauds'

May

2007

Express yourself with over 10,000 FREE Email Smileys -

click here!

[Guest guest]

! I haven't come to your original post yet but I'll just jump in here on MB's answer and as I say frequently, "Ditto" to what she says.

This has to be a complicated situation to share with your family and of course new concerns.

You're the gal who can wade through all of it, I know that for sure but even 'strong women, silly women' have fears.

Do take care dear heart!

Love ya.

MamaSher; IPF 2006; Cellular NSIP, PH, 2009, OR,.Don't fret about tomorrow, God is already there!

From: Beth

Sent: Saturday, January 23, 2010 4:53 AM

To: Breathe-Support

Subject: Re: Glitches & Work in Progress Part 2

....I had no idea what a complex woman you are. It sounds as if your plate is suddenly full. That's an awful lot to take in missy.

I'm so happy that you've found a pulmo who respects your intelligence and actually LISTENS. They are a rare breed in my experience. When you've got one who speaks in terms of alternatives and choices and decisions you know you've got a gem. Hang on to his labcoat and don't let him get away!

I'll be keeping my fingers crossed that they can come up with a good solution for your heart. It's astonishing to me that you've lived your entire life, had children, raised them and never knew. Amazing isn't it what our bodies are capable of coping with?

Keep moving forward my friend, that's all there is to do. Use the O2, it's probably more important now than it ever was. No unnecessary stressing of your heart my dear!

You are in my thoughts . I wish I was there to give you a huge hug!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support ; pulmonaryfibrosis Sent: Fri, January 22, 2010 11:26:24 PMSubject: Glitches & Work in Progress Part 2

OK I’m BACK……same warning …….LONG POST..

For those of you that remember, I whinged about copping Sudden Onset Sensory-Neural Hearing Deficit last year…..well all the investigations that took place because of that have finally lead to me being found to have a Patent Foramen Ovale (‘Hole in the Heart ‘ in layman’s language!) It was diagnosed via a ‘Bubble Echocardiogram’ & confirmed by a Trans-oesophageal Echo (done under Anaesthetic)

This is a Congenital Heart Defect that initially causes left-to-right shunting of blood from the L Ventricle (Oxygenated Blood) to the R Ventricle (de-oxygenated blood)…THIS is when a closure is best done…….. BUT, over time, if left undetected & unclosed a complication can sometimes arise & the pressure in the Right Ventricle becomes greater than that in the Left (Not the way it should be!) & the Blood Flow goes into Reverse & cause a shunting of blood from the Right Ventricle into the Left…….NOT GOOD!

This is called Eisenmenger’s Syndrome & that’s what has happened to me!

It’s a form of Pulmonary Hypertension with extra implications because of PFO & the ‘dirty’ blood mixing with the ‘Clean’ stuff & getting carried all around the body! Cyanosis, Strokes, Clots…blah, Blah…..BLAH!

Initially I thought it would be just a matter of having the Darn thing closed (by catheterisation & a complicated ‘umbrella’ stent) BUT… once Right to Left Shunting has occurred it is generally considered too late to do so…Trying to Shut the Door after the Horse has Bolted Scenario.

In fact, once the Reverse Shunt has occurred it’s considered better from a PH point of view to leave the Hole ‘cos it acts as an ‘Emergency Pressure Valve’…..closing the Hole could just kill me faster!

I’ll be seeing a Cardiac Surgeon on the 8th Feb in Brisbane to discuss options & management.

It was my new Pulmo Dude who Gently pointed out the complications & the uncertainty of closure as an Option. The Neurologist who found it in the first place made it sound like a Simple Solution…relatively low risk surgery…..Wham Bham …..she’ll be fixed in a jiffy…but she clearly didn’t realise the implication of the Direction of the Shunting…

There may be a slight chance that the surgery will still go ahead depending on what they find when they investigate the Pulmonary Artery pressures via an Angiogram. If I’m really lucky the reverse Shunt has only just started & there may be a possibility that they’ll still decide to close the hole. Not sure where that leaves me with the PH..whether that will stop the PH from developing further or not! (or at least stop it from developing because of the PFO…as we all know, PF & Connective Tissue Disease are also causes of PH as well!) Stop one cause but end up with it progressing because of the other problems anyway!

Lots of things to consider!

Sooooooo I’ll be seeing the Greek/Australian Cardio Man THEN my Chinese/Australian Pulmo Dude on the same day ….they’ll work together in figuring out where to go from there as far as getting me into a PH Program & Management & then further evaluation of my Connective Tissue Mystery & evaluating just where my Lungs are up to in the PF Scale (he thinks I’m in the ‘Moderately Affected Range but still in Stable Phase!).

As an amazing coincidence both the Cardio & the Pulmo have their Brisbane Clinics/Labs in the SAME Building…….

Here was me thinking LAST YEAR was my Year of Medical Maintenance & that 2010 would be a Doddle!

But you know… how lucky I am……..if that darn Hole had been undetected but bigger the Eisenmenger’s Syndrome could have started yonks ago…babies, children & young adults get it…..it is considered too dangerous to become pregnant with this Heart Problem…..

I’ve got 2 grown daughters & 3 grandchildren that might not exist if this had played out earlier in my life!

In the meantime I’ve been told to use my POC whenever I do ANYTHING active & for longer after exertion,,,, been put on Plavix instead of mere Low Dose Aspirin to keep my Blood thin…..

BTW..still no one can tell me why the Ear thing happened! Maybe it did me a favour..without that I’d still be ignorant of my weird little Shunting Habit!

……….Lotsa to those of you who hung in there with me……..

in Oz

in Oz IPF: Fibrotic NSIP/UIP ??Reynauds' May 2007

Express yourself with over 10,000 FREE Email Smileys - click here!

No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.730 / Virus Database: 271.1.1/2640 - Release Date: 01/22/10 23:33:00

[Guest guest]

GioFirst--I'm so happy you have found a physician you feel comfortable with .Second--WOW!  You have your plate full.Keep on truckin gril.Roxanne, 59, South Carolina

2006 Asthma/ PF

2008 PF/ Sarcoidosis/Gerd

I pray you enough.....Subject: Glitches & Work in Progress Part 2To: Breathe-Support , pulmonaryfibrosis Date: Friday, January 22, 2010, 11:26 PM

 

OK I’m

BACK……same warning …….LONG POST.. For those of

you that remember, I whinged about copping Sudden Onset Sensory-Neural Hearing

Deficit last year…..well all the investigations that took place because

of that have finally lead to me being found to have a Patent Foramen Ovale

(‘Hole in the Heart ‘ in layman’s language!) It was diagnosed

via a  ‘Bubble Echocardiogram’ & confirmed by a

Trans-oesophageal Echo (done under Anaesthetic) This is a

Congenital Heart Defect that initially causes left-to-right shunting of blood

from the L Ventricle (Oxygenated Blood) to the R Ventricle (de-oxygenated

blood)…THIS is when a closure is best done…….. BUT, over

time, if left undetected & unclosed a complication can sometimes arise

& the pressure in the Right Ventricle becomes greater than that in the Left

(Not the way it should be!) & the Blood Flow goes into Reverse & cause

a shunting of blood from the Right Ventricle into the Left…….NOT

GOOD! This is called

Eisenmenger’s Syndrome & that’s what has happened to me! It’s a

form of Pulmonary Hypertension with extra implications because of PFO & the

‘dirty’ blood mixing with the ‘Clean’ stuff &

getting carried all around the body! Cyanosis, Strokes, Clots…blah,

Blah…..BLAH! Initially I

thought it would be just a matter of having the Darn thing closed (by

catheterisation & a complicated ‘umbrella’ stent) BUT…

once Right to Left Shunting has occurred it is generally considered too late to

do so…Trying to Shut the Door after the Horse has Bolted Scenario. In fact, once

the Reverse Shunt has occurred it’s considered better from a PH point of

view to leave the Hole ‘cos it acts as an ‘Emergency Pressure

Valve’…..closing the Hole could just kill me faster! I’ll be

seeing a Cardiac Surgeon on the 8th Feb in Brisbane to discuss

options & management. It was my new

Pulmo Dude who Gently pointed out the complications & the uncertainty of

closure as an Option. The Neurologist who found it in the first place made it sound

like a Simple Solution…relatively low risk surgery…..Wham Bham

…..she’ll be fixed in a jiffy…but she clearly didn’t

realise the implication of the Direction of the Shunting…  There

may be a slight chance that the surgery will still go ahead depending on what

they find when they investigate the Pulmonary Artery pressures via an

Angiogram. If I’m really lucky the reverse Shunt has only just started

& there may be a possibility that they’ll still decide to close the

hole. Not sure where that leaves me with the PH..whether that will stop the PH

from developing further or not! (or at least stop it from developing because of

the PFO…as we all know, PF & Connective Tissue Disease are also

causes of PH as well!) Stop one cause but end up with it progressing because of

the other problems anyway! Lots of things

to consider! Sooooooo

I’ll be seeing the Greek/Australian Cardio Man THEN my Chinese/Australian

Pulmo Dude on the same day ….they’ll work together in figuring out

 where to go from there as far as getting me into a PH Program &

Management & then further evaluation of my Connective Tissue Mystery &

evaluating just where my Lungs are up to in the PF Scale (he thinks I’m

in the ‘Moderately Affected Range but still in Stable Phase!). As an amazing

coincidence both the Cardio & the Pulmo have their Brisbane Clinics/Labs in

the SAME Building……. Here was me

thinking LAST YEAR was my Year of Medical Maintenance & that 2010 would be

a Doddle! But you

know… how lucky I am……..if that darn Hole had been undetected

but bigger the Eisenmenger’s Syndrome could have started yonks

ago…babies, children & young adults get it…..it is considered

too dangerous to become pregnant with this Heart Problem….. I’ve got

2 grown daughters & 3 grandchildren that might not exist if this had played

out earlier in my life! In the

meantime I’ve been told to use my POC whenever I do ANYTHING active &

for longer after exertion,,,, been put on Plavix instead of mere Low Dose

Aspirin to keep my Blood thin….. BTW..still no

one can tell me why the Ear thing happened! Maybe it did me a favour..without

that I’d still be ignorant of my weird little Shunting Habit!

……….Lotsa to those of you who hung in there with

me…….. in Oz

                         

in

Oz                  

 

IPF:

Fibrotic NSIP/UIP ??

Reynauds'                 

May

2007 

       

Express yourself with over 10,000 FREE Email Smileys -

click here!

 

[Guest guest]

Oh Princess Hee Hee...that would take a TRANSPLANT!

Mind you, after the Doc started asking about symtoms for the heart condition..I realised that I HAD been having Visual symptoms dating from just after my 1st daughter was born...they've continued ever since until now, when I've started taking the Plavix blood thinners (Low Dose Aspirin never stopped them!)..I just never took any notice of them & never thought to ever mention them to a Medico!

Apparently they were signs of imminent Strokes & I have had numerous TIA's over the years without knowing it. My Balance problems are another symptom but HECK who hasn't got Balance problems???

Also, as a kid, I did a lot of swimming/running for School Carnivals ...I was always being told to learn to pace myself 'cos I'd Fly off the blocks lke a Banshee & then just STOP dead in my Tracks...no one ever thought to question any underlying medical cause! I was a FANTASTIC Sprinter for about 10 metres (30 feet).....no blinkin' wonder I never WON anythin'

Fast Pace to Nowhere! that was ME!

I LOVE the way you make me Giggle HRH!

Lotsa,

>> , Please don't get pregnant. I don't think a baby would fit into your lifestyle these days (hee hee) > You have indeed found what sounds like the perfect medical team. In the same building no less. Wonderful.> > My goodness I hardly know what to express my thrill about your new team or my sadness that you have on going problems other> than IPF. Could you slow it down and just have ONE crisis at a time.. Thank You. You know I love you..> > Don't you have to fly to Brisbane ? Lordy girl take care of YOU...> waiting for part 3> > > > > > Love & Prayers> Peggy> IPF, 2004>

[Guest guest]

What a post .I loved all the info and explanations. You are very good at that.You also have a good attitude about this whole thing. Glitches & Work in Progress Part 2

OK I’mBACK……same warning …….LONG POST..

For those ofyou that remember, I whinged about copping Sudden Onset Sensory-Neural HearingDeficit last year…..well all the investigations that took place becauseof that have finally lead to me being found to have a Patent Foramen Ovale(‘Hole in the Heart ‘ in layman’s language!) It was diagnosedvia a ‘Bubble Echocardiogram’ & confirmed by aTrans-oesophageal Echo (done under Anaesthetic)

This is aCongenital Heart Defect that initially causes left-to-right shunting of bloodfrom the L Ventricle (Oxygenated Blood) to the R Ventricle (de-oxygenatedblood)…THIS is when a closure is best done…….. BUT, overtime, if left undetected & unclosed a complication can sometimes arise & the pressure in the Right Ventricle becomes greater than that in the Left(Not the way it should be!) & the Blood Flow goes into Reverse & causea shunting of blood from the Right Ventricle into the Left…….NOTGOOD!

This is calledEisenmenger’s Syndrome & that’s what has happened to me!

It’s aform of Pulmonary Hypertension with extra implications because of PFO & the‘dirty’ blood mixing with the ‘Clean’ stuff & getting carried all around the body! Cyanosis, Strokes, Clots…blah,Blah…..BLAH!

Initially Ithought it would be just a matter of having the Darn thing closed (bycatheterisation & a complicated ‘umbrella’ stent) BUT…once Right to Left Shunting has occurred it is generally considered too late todo so…Trying to Shut the Door after the Horse has Bolted Scenario.

In fact, oncethe Reverse Shunt has occurred it’s considered better from a PH point ofview to leave the Hole ‘cos it acts as an ‘Emergency PressureValve’…..closing the Hole could just kill me faster!

I’ll beseeing a Cardiac Surgeon on the 8th Feb in Brisbane to discussoptions & management.

It was my newPulmo Dude who Gently pointed out the complications & the uncertainty ofclosure as an Option. The Neurologist who found it in the first place made it soundlike a Simple Solution…relatively low risk surgery…..Wham Bham…..she’ll be fixed in a jiffy…but she clearly didn’trealise the implication of the Direction of the Shunting…

Theremay be a slight chance that the surgery will still go ahead depending on whatthey find when they investigate the Pulmonary Artery pressures via anAngiogram. If I’m really lucky the reverse Shunt has only just started & there may be a possibility that they’ll still decide to close thehole. Not sure where that leaves me with the PH..whether that will stop the PHfrom developing further or not! (or at least stop it from developing because ofthe PFO…as we all know, PF & Connective Tissue Disease are alsocauses of PH as well!) Stop one cause but end up with it progressing because ofthe other problems anyway!

Lots of thingsto consider!

SoooooooI’ll be seeing the Greek/Australian Cardio Man THEN my Chinese/AustralianPulmo Dude on the same day ….they’ll work together in figuring out where to go from there as far as getting me into a PH Program & Management & then further evaluation of my Connective Tissue Mystery & evaluating just where my Lungs are up to in the PF Scale (he thinks I’min the ‘Moderately Affected Range but still in Stable Phase!).

As an amazingcoincidence both the Cardio & the Pulmo have their Brisbane Clinics/Labs inthe SAME Building…….

Here was methinking LAST YEAR was my Year of Medical Maintenance & that 2010 would bea Doddle!

But youknow… how lucky I am……..if that darn Hole had been undetectedbut bigger the Eisenmenger’s Syndrome could have started yonksago…babies, children & young adults get it…..it is consideredtoo dangerous to become pregnant with this Heart Problem…..

I’ve got2 grown daughters & 3 grandchildren that might not exist if this had playedout earlier in my life!

In themeantime I’ve been told to use my POC whenever I do ANYTHING active & for longer after exertion,,,,been put on Plavix instead of mere Low DoseAspirin to keep my Blood thin…..

BTW..still noone can tell me why the Ear thing happened! Maybe it did me a favour..withoutthat I’d still be ignorant of my weird little Shunting Habit!

……….Lotsa to those of you who hung in there withme……..

in Oz

inOz IPF:Fibrotic NSIP/UIP ??Reynauds' May2007

Express yourself with over 10,000 FREE Email Smileys -click here!

[Guest guest]

,

Your problems are so complex , i wonder how you cope, I know you have a grea

attitude that doesnt mean you should be destined to bear a larger pile! not

fair!

Take care

love

Geeta

>

>

>

> OK I'm BACK..same warning ...LONG POST..

>

> For those of you that remember, I whinged about copping Sudden Onset

> Sensory-Neural Hearing Deficit last year...well all the investigations that

> took place because of that have finally lead to me being found to have a

> Patent Foramen Ovale ('Hole in the Heart ' in layman's language!) It was

> diagnosed via a 'Bubble Echocardiogram' & confirmed by a Trans-oesophageal

> Echo (done under Anaesthetic)

>

> This is a Congenital Heart Defect that initially causes left-to-right

> shunting of blood from the L Ventricle (Oxygenated Blood) to the R Ventricle

> (de-oxygenated blood).THIS is when a closure is best done.... BUT, over

> time, if left undetected & unclosed a complication can sometimes arise & the

> pressure in the Right Ventricle becomes greater than that in the Left (Not

> the way it should be!) & the Blood Flow goes into Reverse & cause a shunting

> of blood from the Right Ventricle into the Left...NOT GOOD!

>

> This is called Eisenmenger's Syndrome & that's what has happened to me!

>

> It's a form of Pulmonary Hypertension with extra implications because of PFO

> & the 'dirty' blood mixing with the 'Clean' stuff & getting carried all

> around the body! Cyanosis, Strokes, Clots.blah, Blah...BLAH!

>

> Initially I thought it would be just a matter of having the Darn thing

> closed (by catheterisation & a complicated 'umbrella' stent) BUT. once Right

> to Left Shunting has occurred it is generally considered too late to do

> so.Trying to Shut the Door after the Horse has Bolted Scenario.

>

> In fact, once the Reverse Shunt has occurred it's considered better from a

> PH point of view to leave the Hole 'cos it acts as an 'Emergency Pressure

> Valve'...closing the Hole could just kill me faster!

>

> I'll be seeing a Cardiac Surgeon on the 8th Feb in Brisbane to discuss

> options & management.

>

> It was my new Pulmo Dude who Gently pointed out the complications & the

> uncertainty of closure as an Option. The Neurologist who found it in the

> first place made it sound like a Simple Solution.relatively low risk

> surgery...Wham Bham ...she'll be fixed in a jiffy.but she clearly didn't

> realise the implication of the Direction of the Shunting.

>

> There may be a slight chance that the surgery will still go ahead depending

> on what they find when they investigate the Pulmonary Artery pressures via

> an Angiogram. If I'm really lucky the reverse Shunt has only just started &

> there may be a possibility that they'll still decide to close the hole. Not

> sure where that leaves me with the PH..whether that will stop the PH from

> developing further or not! (or at least stop it from developing because of

> the PFO.as we all know, PF & Connective Tissue Disease are also causes of PH

> as well!) Stop one cause but end up with it progressing because of the other

> problems anyway!

>

> Lots of things to consider!

>

> Sooooooo I'll be seeing the Greek/Australian Cardio Man THEN my

> Chinese/Australian Pulmo Dude on the same day ..they'll work together in

> figuring out where to go from there as far as getting me into a PH Program

> & Management & then further evaluation of my Connective Tissue Mystery &

> evaluating just where my Lungs are up to in the PF Scale (he thinks I'm in

> the 'Moderately Affected Range but still in Stable Phase!).

>

> As an amazing coincidence both the Cardio & the Pulmo have their Brisbane

> Clinics/Labs in the SAME Building...

>

> Here was me thinking LAST YEAR was my Year of Medical Maintenance & that

> 2010 would be a Doddle!

>

> But you know. how lucky I am....if that darn Hole had been undetected but

> bigger the Eisenmenger's Syndrome could have started yonks ago.babies,

> children & young adults get it...it is considered too dangerous to become

> pregnant with this Heart Problem...

>

> I've got 2 grown daughters & 3 grandchildren that might not exist if this

> had played out earlier in my life!

>

> In the meantime I've been told to use my POC whenever I do ANYTHING active &

> for longer after exertion,,,,been put on Plavix instead of mere Low Dose

> Aspirin to keep my Blood thin...

>

> BTW..still no one can tell me why the Ear thing happened! Maybe it did me a

> favour..without that I'd still be ignorant of my weird little Shunting

> Habit!

>

> <http://www.smileycentral.com/?partner=ZSzeb001_ZSYYYYYYYYAU> Question

> Mark....Lotsa to those of you who hung in there with me....

>

> in Oz

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> in Oz

>

> IPF: Fibrotic NSIP/UIP ??

> Reynauds'

> May 2007

>

>

>

>

>

>

>

>

>

> _____

>

> Express yourself with over 10,000 FREE Email Smileys - click here!

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

>