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View Full Version : Holy cannoli they FOUND something! Woohoo!!! Oh, wait.... Aww crap!!



Musical_Starling
April 29th, 2013, 07:07 PM
Quick! Someone get me a calendar! I have to write this down!! After being poked and prodded and passed around since August, we finally have a clue regarding my breathing issues. So for those who don't remember (I haven't updated in a while) or who weren't around for the last update, here's the jist of what's happened so far:

In August of last year I spent a night in Emerg because I could barely breathe. Our AC unit gave out and the warm air felt like it was too "thick" to breathe in, so after spending the night in the hospital they told me it was some sort of reactive airway disease. So we tried a yaffle of puffers and waited to see a respirologist. Late September I see the respirologist, he schedules a pulmonary function test and tells me it's likely asthma. Okay, fabulous. So everything is put on hold until the pulmonary function test in February, just take more puffers ad nauseam, hurry up and wait. So after the pulmonary function test, "Hmm, it's not asthma..." Great. So what in the heck is it? Well, it's some sort of obstruction. No hints, no clues, just "obstruction". So off to the ENT doc.

Well today at my ENT appointment I got my answer, or at least part of it. Turns out I have "Idiopathic Subglottic Stenosis". It's apparently rare, usually occurs in young women, and there's no proven cure. Awesome, right?

The "Idiopathic" part just means that we don't know WHY I have it just yet, but we do have a clue. Back in July of 2011 before I had my successful wisdom teeth surgery, I had an unsuccessful intubation. The anaesthesiologist tried to put the tube in my nose, I bled like a cut pig and the blood coated my vocal chords and my O2 sats dropped to about 50. In their panic to get the blood out so it didn't all go down in my lungs, they may have scratched my throat, and then the subsequent coughing like a 2 pack a day smoker made this MUCH worse.

So right now we do know that just below my vocal chords my airway is quite narrow. It's not a long segment that reaches down into my lungs by any means, more like putting an elastic band around one of those long balloons they use to make animals with. Just a small area where my airway has narrowed and makes inhaling difficult and also removing the normal mucus/phlegm that accumulates down there. Yum.

So, at least I have an answer. Somewhat. In the next 3 to 4 weeks I will require a CT scan, lots of bloodwork to rule out any rheumatic/systemic disease as a potential cause, and then surgery where they will have a good look with their big scope (he used the little one today through my nose that hurt like a mofo), biopsy it to make sure it's not something really nasty, and then use a balloon to dilate it so I can (hopefully) breathe again and then inject some steroids in it. Awesome. So for now I just keep taking my puffers and, as I have been doing, hurry up and wait. And then in 6 months or so I might be "lucky" enough to get to go and have the dilation performed again, and again in another 6 months, and again, and again, and again.... *sigh*

I always aim to learn something new every day. Today I learned I have a disease with a name as long as my arm (and almost as long as this post!!) What did YOU learn today? lol

Lisapc
April 29th, 2013, 07:12 PM
I learned after less than a month living in Staten Island, New York that my daughter, SIL and infant granddaughter that came back last night to pick up their soon to be 5 yr old daughter are not going back. They hated it! They are home to stay! I am so excited to have my family back for good! I might even pat my SIL on the back because it was him who made the decision because he sees how miserable my daughter and older granddaughter were. He was unhappy as well.

I am sorry you have such disease but finally having a clue what is wrong with you must be a relief. Thinking of you always!

K. McEuen
April 29th, 2013, 07:15 PM
Ask them if they can shove a piece of garden hose in there and leave it instead of having to go back in with the balloon every six months.

I hope they can come up with something other than the balloon treatment every six months for the rest of your life, because I'm sure that is going to get old real fast.

Musical_Starling
April 29th, 2013, 07:16 PM
I learned after less than a month living in Staten Island, New York that my daughter, SIL and infant granddaughter that came back last night to pick up their soon to be 5 yr old daughter are not going back. They hated it! They are home to stay! I am so excited to have my family back for good! I might even pat my SIL on the back because it was him who made the decision because he sees how miserable my daughter and older granddaughter were. He was unhappy as well.

I am sorry you have such disease but finally having a clue what is wrong with you must be a relief. Thinking of you always!

How awesome is that?? See, there is always something to smile about!! :)

Musical_Starling
April 29th, 2013, 07:19 PM
Ask them if they can shove a piece of garden hose in there and leave it instead of having to go back in with the balloon every six months.

I hope they can come up with something other than the balloon treatment every six months for the rest of your life, because I'm sure that is going to get old real fast.

I wish! Apparently there's a tracheal resection surgery, but he didn't mention that to me today. He was probably already worried he would scare me off with the balloon idea, he was only a young fellow I'd say less than 10 years older than me lol But the garden hose idea sounds like a good one, maybe one of those fancy no-kink buggers, that should do a good job!

cyndiofthevortex
April 29th, 2013, 07:53 PM
I'm sorry you've had all this trouble! You know it has to be true because nobody could make this stuff up!

Musical_Starling
April 29th, 2013, 08:01 PM
I'm sorry you've had all this trouble! You know it has to be true because nobody could make this stuff up!

If I could make up something like this then I have some wicked imagination that would be better used to write some sort of non-fiction novel series lol I wonder how they come up with the names for these conditions though. Were they eating a bowl of alphabet soup and spilled it all over the table and thought "That looks good, I'll call it that!"? Because I'm pretty darn sure it's not English... lol

Divine Daisy
April 29th, 2013, 08:13 PM
glad you have some answers at least. Scarey not to be able to breath though!

Musical_Starling
April 29th, 2013, 08:22 PM
glad you have some answers at least. Scarey not to be able to breath though!

Is it ever! I read something a few minutes ago, and it seems pretty accurate. This condition is like trying to breathe through a McDonald's straw with a clothespin on your nose. You can stay in one spot and you're okay because your breathing is nice and steady, but try breathing through that straw and walking up a set of stairs and see how far you get before you panic and yank that clothespin off and spit the straw out. Wish I could just yank the clothespin off and catch my breath sometimes lol The puffers keep it somewhat under control, but I still can't do much and stairs (almost literally) kill me!

ilive2craft2
April 29th, 2013, 08:38 PM
Oh Dee, I am so glad they came up with a name for it and some treatments that will make it better. It really sucks that they may have to do the treatment every 6 months or so. Would be nice if the garden hose would work. A diagnosis and a plan of action are always better than the unknown. Hope the treatments are pain free and do a wonderful job! Lisa

Musical_Starling
April 29th, 2013, 08:54 PM
Oh Dee, I am so glad they came up with a name for it and some treatments that will make it better. It really sucks that they may have to do the treatment every 6 months or so. Would be nice if the garden hose would work. A diagnosis and a plan of action are always better than the unknown. Hope the treatments are pain free and do a wonderful job! Lisa

Thanks Lisa! I hope so too, although the garden hose is looking mighty tempting... I mean, I do have a spare one in the basement.... :icon_giggle:

WendyI
April 29th, 2013, 09:38 PM
Holy crap on a cracker! Don't you want to just throttle that anesthisiologist?! I just looked it up and that is a definite trigger for it. I'm so sorry you are going through this...hopefully you won't have to do the balloon thing too long and they'll come up with a better solution. I'm glad you are in good spirits tho!

Musical_Starling
April 29th, 2013, 10:58 PM
Holy crap on a cracker! Don't you want to just throttle that anesthisiologist?! I just looked it up and that is a definite trigger for it. I'm so sorry you are going through this...hopefully you won't have to do the balloon thing too long and they'll come up with a better solution. I'm glad you are in good spirits tho!

Just a little. I mean, not enough to kill her, but just long enough so she turns blue... :icon_evil: I'm going to talk to him about the resectioning thing to see if that's an option. If it is then I'd rather put up with a longer one-time recovery than a bunch of little ones!

shannonsaulter
April 30th, 2013, 12:30 AM
Answers are always good..to bad you will be dealing with this for so long...
I learned hmmm that I need to get past my quilting feats..my cuts aren't straight but as long as I try It's worth it...

Musical_Starling
April 30th, 2013, 12:56 AM
Answers are always good..to bad you will be dealing with this for so long...
I learned hmmm that I need to get past my quilting feats..my cuts aren't straight but as long as I try It's worth it...

Have you tried using grippers on the bottom of your rulers? I bought the film stuff that you cut (it's by Omnigrid, the name escapes me) and it's helped me tremendously! That and actually cutting on a table that's a little lower so I can put some weight on the ruler to keep it in place :)

SisterDi
April 30th, 2013, 01:44 AM
Oh, I do not envy you the broncoscopy in your future. I woke up in the middle of my last one. :( They have to sedate me lightly because my BP and respirations are so low from meds, so don't worry about that happening to you.

Isn't it a strange thing to be happy to have a diagnosis? We women are so used to people telling us that it's "just nerves" or whatever, when we know that something is not right. I'd be happy to share one of my two 100 lb liquid oxygen tanks with you while you wait for a resolution to this. All digits crossed that you are fixable!

Musical_Starling
April 30th, 2013, 01:58 AM
Oh, I do not envy you the broncoscopy in your future. I woke up in the middle of my last one. :( They have to sedate me lightly because my BP and respirations are so low from meds, so don't worry about that happening to you.

Isn't it a strange thing to be happy to have a diagnosis? We women are so used to people telling us that it's "just nerves" or whatever, when we know that something is not right. I'd be happy to share one of my two 100 lb liquid oxygen tanks with you while you wait for a resolution to this. All digits crossed that you are fixable!

Oh God, if I woke up in the middle of it I think I would have a heart attack lol They woke me up after my first "failed" intubation and I don't know what they gave me but I had NO idea who I was, where I was, what was going on, my heart was racing and all I could do was cry. It was like the worst panic attack I've ever had multiplied by 1000!

And it is weird to be happy for a diagnosis, especially when it's not necessarily a great one (post nasal drip or acid reflux or asthma would have been a LITTLE nicer lol) but like I've been saying to DH all day, it could have been worse! At least now we know what we're fighting :)

It's funny that you offer an oxygen tank because they had talked about putting me on oxygen at one point lol I also have mild sleep apnea (most likely due to the stenosis) but I can't wear my CPAP because it disrupts my sleep pattern and every time I used to get to REM sleep it would wake me up so I would get to the previous sleep stages but could never achieve "deep" sleep. But I just have a mild case so they left me alone and let me sleep (somewhat) peacefully without any sort of mask to wear :D

Evilynn
April 30th, 2013, 02:52 AM
Oh dear Dee. That sucks so much :( I hope you're able to breathe better by now. :< I imagine it very scary to not be able to breathe! Ugh. That doc that gave you .. or tried to give... the ... ana... ana.... the sleeping thing for surgeries (sorry, I never know how to write it correctly :P) should be fired :icon_rolleyes: Hope you find a way to sort it out even tho there's no proven cure! :(

Hugs,

Steffie

Winniesfriend
April 30th, 2013, 04:36 AM
Wow, great you finally have a diagnosis, at least there is light at the end of the tunnel - even more light once they get the opening stretched - there are always new advances in medicine hopefully some one will come up with something more permanent for you.

SisterDi
April 30th, 2013, 05:21 AM
They give you a dose of Versed right before the bigger anesthesia, and that's the stuff that makes you mellow, and forget your name. :)

Iris Girl
April 30th, 2013, 06:34 AM
So sorry for all these troubles you are having , but glad they have found a reason , now a fix can be done and you can get on the road to recovery. ((((hugs)))

rebeccas-sewing
April 30th, 2013, 06:45 AM
Good grief, Dee! What a pain in the arse! Hope they get you squared away soon so you'll start feeling better.

Monique
April 30th, 2013, 07:03 AM
All in all, I do hope you get some relief in the not-so-distant future.

Musical_Starling
April 30th, 2013, 10:46 PM
Oh dear Dee. That sucks so much :( I hope you're able to breathe better by now. :< I imagine it very scary to not be able to breathe! Ugh. That doc that gave you .. or tried to give... the ... ana... ana.... the sleeping thing for surgeries (sorry, I never know how to write it correctly :P) should be fired :icon_rolleyes: Hope you find a way to sort it out even tho there's no proven cure! :(

Hugs,

Steffie

Not breathing any better just yet, but hopefully soon. They're hoping to get me in for surgery in three or four weeks. In the meantime I have to wait for my call for a cat scan and get some bloodwork done. Once we see how long this dilatation lasts it will be time to decide if something a little more permanent (and risky!) is necessary. And it's not really scary unless I try to walk up a set of stairs or if the wind is blowing in my face. Then I can't catch my breath and it's a little freaky. But as long as I'm either sitting and doing something or taking my time and doing things at a slower pace then I'm fine and I don't notice it. Since this is something that grows over time, it just kinda creeps up on you and you don't notice any problem until you try to do too much. As for the anaesthesiologist (don't worry, I can't spell it right half of the time either, I can barely pronounce it! lol), I'm not sure if she's still working there but I can ASSURE you I will never EVER be a repeat patient for her lol

Thanks ladies, I'm hoping for the best too and sneaking in a little prayer here and there. MIL is so worried you'd swear I was dying lol No use in worrying about what is, just follow doctor's orders and keep putting one foot in front of the other and whatever will be, will be :D

toggpine
May 1st, 2013, 03:46 AM
Dee,
Forget the garden hose! I'll send you a lovely piece of food-grade milk hose. It is approved for contact with food items for human consumption. It's clear with a blue stripe, very pretty! I'll double check the inner diameter, but I know it's at least 1/2", and possibly a full 1". You can easily pull 13 pounds of pressure per square inch (PSI) and it won't collapse. It is easy to clean, although I'm not sure how you are going to get past the gag-reflex to get the hose brush down there. Eh, no biggie, Gargle a little bleach water & it will be fine!
Let me know how long of a section you need and I'll get that off in the mail to you right away!
Hugs! Cath

Sorry for the delay in getting the problem really fixed!

SallyO'Sews
May 1st, 2013, 11:25 AM
I learned that my son needs to practice more before taking his driving test... At 6:15 this morning we were wakened by the sound of him taking out our mailbox with my car, which he needed to move in order to go to work in his wife's car. The plastic housing on the side-view mirror of my minivan is scratched up, but it still works fine. We will, however, need to replace both the mailbox and the post it was attached to.

Hope you're on the mend soon, Dee. I'm glad they've at least figured out what the problem is! Praying for a swift and complete recovery!

pcbatiks
May 1st, 2013, 01:10 PM
Well Dee.........thankfully they found the problem and gave you the name. Hoping everything will go smoothly for you with this procedure. Take care of yourself......will be praying for you.

Garden hoses........food grade milk hoses.........we are taking forum friend mail to a whole other level now! :D

Musical_Starling
May 3rd, 2013, 05:43 PM
Dee,
Forget the garden hose! I'll send you a lovely piece of food-grade milk hose. It is approved for contact with food items for human consumption. It's clear with a blue stripe, very pretty! I'll double check the inner diameter, but I know it's at least 1/2", and possibly a full 1". You can easily pull 13 pounds of pressure per square inch (PSI) and it won't collapse. It is easy to clean, although I'm not sure how you are going to get past the gag-reflex to get the hose brush down there. Eh, no biggie, Gargle a little bleach water & it will be fine!
Let me know how long of a section you need and I'll get that off in the mail to you right away!
Hugs! Cath

Sorry for the delay in getting the problem really fixed!

ROFLMAO! :icon_rofl: Oh how I WISH that was an option! Just gargle a bit of javex once a week or so and I'd be good to go lol Thanks for the laugh Cathy, I needed it!


I learned that my son needs to practice more before taking his driving test... At 6:15 this morning we were wakened by the sound of him taking out our mailbox with my car, which he needed to move in order to go to work in his wife's car. The plastic housing on the side-view mirror of my minivan is scratched up, but it still works fine. We will, however, need to replace both the mailbox and the post it was attached to.

Hope you're on the mend soon, Dee. I'm glad they've at least figured out what the problem is! Praying for a swift and complete recovery!

Poor mailbox didn't even see it coming... Thanks for the prayers :)


Well Dee.........thankfully they found the problem and gave you the name. Hoping everything will go smoothly for you with this procedure. Take care of yourself......will be praying for you.

Garden hoses........food grade milk hoses.........we are taking forum friend mail to a whole other level now! :D

You just never know what's going to show up in your forum mail these days.... lol Thanks for the prayers honey, I think I might need them this time around!

So the past few days have been NUTS. I only found out on Monday, then by Wednesday had a call from the OR they wanted me to be in for surgery this Monday. Umm, no. That's a little too soon (not to mention my "friend from the red river valley" is visiting this weekend. No. lol) So then I tell them that I can't go so soon because I had to have bloodwork and a CT scan done before surgery, so they've got to call someone who has to call someone else to find out what's going on, they FINALLY get back to me today and say they've left it with the doctor and he'll call me on Monday. Five minutes later, I'm scheduled for a CT scan next Thursday lol If only the left hand could keep up with what the right hand is doing we might have a sensible health care system! So as of right now, CT scan and blood testing on Thursday, then surgery any time after that, and by the sounds of it they're trying to rush me in ASAP! Meanwhile MIL is still upset, you'd swear I was on the brink of death or something. Okay, so technically it is a "life threatening" condition, but geez mudder! Gonna have to get that one some happy pills until this all works out lol

K. McEuen
May 3rd, 2013, 05:59 PM
That's a little too soon (not to mention my "friend from the red river valley" is visiting this weekend. No. lol)

Some friends are so darned inconsiderate. She came to visit me the day after I broke my leg in 3 places. I was trying to figure out how to make a diaper out of those blue chuck things in the hospital simply because I could barely move!

Well, it sounds like the doctor has a plan, even if he's not bothering to share it all with you. Hopefully it works out well. Are they doing the balloon thing the first time around or going straight to the resection?

Musical_Starling
May 3rd, 2013, 06:49 PM
Some friends are so darned inconsiderate. She came to visit me the day after I broke my leg in 3 places. I was trying to figure out how to make a diaper out of those blue chuck things in the hospital simply because I could barely move!

Well, it sounds like the doctor has a plan, even if he's not bothering to share it all with you. Hopefully it works out well. Are they doing the balloon thing the first time around or going straight to the resection?

How rude! You think that just ONCE you could reason with Mother Nature and say "You know, now just isn't good for me. Can you come back in a year?" Sheesh. You'd think being a woman she'd understand but noooooooo...

I'm hoping he has a plan because right now I'm just smiling and nodding and showing up when and where I'm told to lol They're doing the balloon thing first, along with a biopsy and a steroid injection directly in my trachea (how in the heck they plan on accomplishing that I haven't figured out and I'm too scared to ask because I'm not sure I WANT to know). As for the resectioning, that's something I found on my own and haven't talked to the doctor about yet. I do know it's covered by MCP (our provincial health care program) but as for whether or not it's done in the province is another question. Cross that bridge when I get to it I suppose!

nanaleslie
May 3rd, 2013, 08:32 PM
Its good to finally have an answer. It sure isn't fun going from Dr to Dr to try and figure out whats wrong. Anyway, take good care of yourself. I wish you all the best. :icon_bigsmile:

BellasQuilts
May 3rd, 2013, 09:08 PM
May I also suggest a trip to the chiropractor? Many, many things are a result of your spine being out of alignment and pinching off vital pathways. It couldn't hurt.

HdWench
May 3rd, 2013, 09:53 PM
(((((((((Dee))))))))))) you are in my prayers and I bet it is a teeny weenie relief to Finally know what the hello is going on!!!! And a plan of action -- uh beside the garden hose and such :icon_shake:

Got to say everyday to myself -- There is some young doctor right now going through school that WILL come up with a "fix" that will help ummm the growing older folks -- that or go crazy *wait I'm already blonde and crazy* :icon_crazy:

hm Today I learned that sewing 1" scraps together to make an entire sewing machine cover takes a LONG ..... SS time

Keep up the spirits or do you need some of them shipped in :icon_popcorn:

Debbie

Musical_Starling
May 4th, 2013, 04:10 AM
Its good to finally have an answer. It sure isn't fun going from Dr to Dr to try and figure out whats wrong. Anyway, take good care of yourself. I wish you all the best. :icon_bigsmile:

Thank you :) I am VERY lucky that my doctor recognized it immediately because it's something that can go undiagnosed for a long time if the doctor is not familiar with it (and many aren't!)


May I also suggest a trip to the chiropractor? Many, many things are a result of your spine being out of alignment and pinching off vital pathways. It couldn't hurt.

Oh how I wish! This is actually something growing in my airway though, it was verified by my ENT doc on Monday. If only I could use some of my "weird" medicine to cure this one lol Thank you for thinking of that though :)


(((((((((Dee))))))))))) you are in my prayers and I bet it is a teeny weenie relief to Finally know what the hello is going on!!!! And a plan of action -- uh beside the garden hose and such :icon_shake:

Got to say everyday to myself -- There is some young doctor right now going through school that WILL come up with a "fix" that will help ummm the growing older folks -- that or go crazy *wait I'm already blonde and crazy* :icon_crazy:

hm Today I learned that sewing 1" scraps together to make an entire sewing machine cover takes a LONG ..... SS time

Keep up the spirits or do you need some of them shipped in :icon_popcorn:

Debbie

Thank you Debbie, you're such a sweetheart! I'm in pretty good spirits, I joked with MIL tonight that I'm doing better than she is lol And if I need any spirits of the alcoholic sort, I have a box full in the closet of our spare bedroom. MIL/FIL gave us a big wine box full of bottles when they left for Alberta because they weren't going to drink them... Well, THEY'RE STILL THERE! At least they can't blame this one on me being a smoker or a drinker! lol