Update on us...

[Guest guest]

I just realized I never posted an update on this group {and a couple of others}.

Please forgive me for cutting and pasting, I hope you all understand we are

really exhausted right now. I do want to let those of you who offered so much

love and support .

This is the latest: {below this I will post why we did this}

Steve had the surgery Monday morning. The trach itself could not have gone any

better. He did have some scary complications but he is better now. I have been

trying to update on my blog but I hope you all understand I am exhausted and

overwhelmed right now. He should go back to work on Monday and hopefully I can

clean up from 10 months of never ending ambulance rides, ER visits,

hospitalizations, ICU admits and endless doctor visits. Not to mention crap

loads of meds and on and on and on.

I will be back here soon and posting up a storm. My daughter is doing MUCH

better. Now just on Claritin. Winter is her trigger so we are praying and

keeping our fingers crosses. She turned 10 on Wednesday...lets hope she outgrew

the nasty asthma!!

Love to you all!! {oh...I am updating my blog as often as I can:

http://untyeingtheknots.blogspot.com/ }

Rhonda~

{I posted this on another list when someone asked if he finally had a diagnoses}

What appears to be the problem is vocal cord injury from surgery, complicated by

severe acid reflux. It's actually called laryngopharyngeal reflux {

http://jaapa.com/issues/j20050801/pdfs/lpr0805.pdf }, it's supposed to be the

" silent " type of reflux, except for DH it isn't so silent!

When he had minor knee surgery in January he did have a very hard time coming

around from anesthesia. He told me later he started having trouble breathing not

too long after. Of course like some men do he didn't tell me he was having chest

pains until I found him on the porch waiting to die! He ended up in the ICU, 10

days after the surgery, with what they said was pneumonia.

That started the revolving door of hospital admissions and stays in ICU. They

could never give a definite diagnosis and there were lots of judgments because

he was a smoker {quit in Jan after the first hospital trip} IMO the hospital

docs never really looked or listened to him and wrote him off as COPD and he's

just going live on oxygen and medi-care the rest of his life. But NONE OF IT

FIT! I KNEW it had to be something else....but I was told I was in denial.

FINALLY we decided to go to the county teaching hospital..you know, where all

the addicts and homeless go. We were hooked up with the most awesome

pulmonologist. Of course he told us DH had a lung disease that has no known

cause and no known cure and it kills within a year. At that point I would have

taken COPD! The only way to tell was a lung biopsy. That was HORRIBLE! DH still

has pain from it, but the test was NEGATIVE!!

After looking in his lungs and the biopsy report the pulmo doc did a pulmonary

function test and lo and behold all of the problem was in the upper airway...not

the lungs. {Just like DH had been saying from the beginning. Like someone was

choking him} He immediately took him off all the steroids and antibiotics and

referred him to a ear-nose-throat doc. This was mid September and the

appointment was not until November 24th!

Well DH did not last long and went right back in the hospital, another ICU admit

and them inpatient pulmonary rehab. One week later he was taken by ambulance for

multiple blood clots in both lungs. Likely there since January from the knee

surgery and exacurbating his breathing difficulties. His CT scans were always

fuzzy and had " ground glass opacity " which suggested COPD. Now they say if was

the blood clots, they just couldn't see them until they were big enough. He's

lucky he's alive!

I was not content to wait till the end of November for a consult so I called

Stanford. They asked if I could have him there in 10 days and I said we'll be

there.

The doctor put a small tube down DH's throat and looked at his vocal cords. i

did not need to be a doctor to see something was wrong. One side of his throat

is completely paralyzed. When he breathes it collapses to the other side,

completely blocking his airway. The tissue was red and swollen 3 x the normal

size. The doc explained that when they get so irritated by the acid he has

attacks, they twitch and swell up and he can't breathe. There is nothing you can

do except fix the acid problem but with the injury it takes time, or never

heals. The pulmo doc also says he does have asthma because of the reflux. We

don't know if that goes away if the reflux is fixed or will he still have it. He

does have severe sleep apnea as well....although it has obviously worsened

because of the vocal cord issue. The trach is actually a 100% cure for that and

a lot of people get them for that and it completely changes their lives.

I'm sure you can imagine all of this has weakened him, actually all of this!

What the plan right now is is for him to recover his strength and then we will

see the GI docs at Stanford and explore whether he needs the stomach surgery,

fundoplication, to correct the reflux. And we he may need evaluating for the

vocal cords. There are possible surgeries if they do not heal...but that is down

the line. Right now we just want to stay home and HEAL!

And by the way...his lungs are FINE! The nurses were amazed at what a strong

cough he has and how well he is recovering. The typical new trach patient has to

be suctioned numerous times a day and isn't even thinking about returning to

work a week later! He is breathing perfectly and has so much energy he doesn't

know what to do with himself! He has tried but he can't even take a nap...he

isn't tired!

[Guest guest]

Hi Rhonda,

I had read some of your postings here over time and I am so glad for

you that you have some solid answers now. Best wishes for a speedy

recovery to your husband.

>

> I just realized I never posted an update on this group {and a couple

of others}. Please forgive me for cutting and pasting, I hope you all

understand we are really exhausted right now. I do want to let those

of you who offered so much love and support .

>

> This is the latest: {below this I will post why we did this}

>

> Steve had the surgery Monday morning. The trach itself could not

have gone any

> better. He did have some scary complications but he is better now. I

have been

> trying to update on my blog but I hope you all understand I am

exhausted and

> overwhelmed right now. He should go back to work on Monday and

hopefully I can

> clean up from 10 months of never ending ambulance rides, ER visits,

> hospitalizations, ICU admits and endless doctor visits. Not to

mention crap

> loads of meds and on and on and on.

>

> I will be back here soon and posting up a storm. My daughter is

doing MUCH

> better. Now just on Claritin. Winter is her trigger so we are

praying and

> keeping our fingers crosses. She turned 10 on Wednesday...lets hope

she outgrew

> the nasty asthma!!

>

> Love to you all!! {oh...I am updating my blog as often as I can:

> http://untyeingtheknots.blogspot.com/ }

>

> Rhonda~

>

> {I posted this on another list when someone asked if he finally had

a diagnoses}

>

>

> What appears to be the problem is vocal cord injury from surgery,

complicated by severe acid reflux. It's actually called

laryngopharyngeal reflux {

http://jaapa.com/issues/j20050801/pdfs/lpr0805.pdf }, it's supposed to

be the " silent " type of reflux, except for DH it isn't so silent!

>

> When he had minor knee surgery in January he did have a very hard

time coming around from anesthesia. He told me later he started having

trouble breathing not too long after. Of course like some men do he

didn't tell me he was having chest pains until I found him on the

porch waiting to die! He ended up in the ICU, 10 days after the

surgery, with what they said was pneumonia.

>

> That started the revolving door of hospital admissions and stays in

ICU. They could never give a definite diagnosis and there were lots of

judgments because he was a smoker {quit in Jan after the first

hospital trip} IMO the hospital docs never really looked or listened

to him and wrote him off as COPD and he's just going live on oxygen

and medi-care the rest of his life. But NONE OF IT FIT! I KNEW it had

to be something else....but I was told I was in denial.

>

> FINALLY we decided to go to the county teaching hospital..you know,

where all the addicts and homeless go. We were hooked up with the most

awesome pulmonologist. Of course he told us DH had a lung disease that

has no known cause and no known cure and it kills within a year. At

that point I would have taken COPD! The only way to tell was a lung

biopsy. That was HORRIBLE! DH still has pain from it, but the test was

NEGATIVE!!

>

> After looking in his lungs and the biopsy report the pulmo doc did a

pulmonary function test and lo and behold all of the problem was in

the upper airway...not the lungs. {Just like DH had been saying from

the beginning. Like someone was choking him} He immediately took him

off all the steroids and antibiotics and referred him to a

ear-nose-throat doc. This was mid September and the appointment was

not until November 24th!

>

> Well DH did not last long and went right back in the hospital,

another ICU admit and them inpatient pulmonary rehab. One week later

he was taken by ambulance for multiple blood clots in both lungs.

Likely there since January from the knee surgery and exacurbating his

breathing difficulties. His CT scans were always fuzzy and had " ground

glass opacity " which suggested COPD. Now they say if was the blood

clots, they just couldn't see them until they were big enough. He's

lucky he's alive!

>

> I was not content to wait till the end of November for a consult so

I called Stanford. They asked if I could have him there in 10 days and

I said we'll be there.

>

> The doctor put a small tube down DH's throat and looked at his vocal

cords. i did not need to be a doctor to see something was wrong. One

side of his throat is completely paralyzed. When he breathes it

collapses to the other side, completely blocking his airway. The

tissue was red and swollen 3 x the normal size. The doc explained that

when they get so irritated by the acid he has attacks, they twitch and

swell up and he can't breathe. There is nothing you can do except fix

the acid problem but with the injury it takes time, or never heals.

The pulmo doc also says he does have asthma because of the reflux. We

don't know if that goes away if the reflux is fixed or will he still

have it. He does have severe sleep apnea as well....although it has

obviously worsened because of the vocal cord issue. The trach is

actually a 100% cure for that and a lot of people get them for that

and it completely changes their lives.

>

> I'm sure you can imagine all of this has weakened him, actually all

of this! What the plan right now is is for him to recover his strength

and then we will see the GI docs at Stanford and explore whether he

needs the stomach surgery, fundoplication, to correct the reflux. And

we he may need evaluating for the vocal cords. There are possible

surgeries if they do not heal...but that is down the line. Right now

we just want to stay home and HEAL!

>

> And by the way...his lungs are FINE! The nurses were amazed at what

a strong cough he has and how well he is recovering. The typical new

trach patient has to be suctioned numerous times a day and isn't even

thinking about returning to work a week later! He is breathing

perfectly and has so much energy he doesn't know what to do with

himself! He has tried but he can't even take a nap...he isn't tired!

>

[Guest guest]

Rhonda that is terrific news! I know that you are so relieved. It is

amazing that he returning to work so quickly. I was also told by a

pulmonologist that my problem was just severe asthma, and I was in

denial. Obviously, I am not seeing that guy any more. There is

definitely an asthma issue, but it is complicated with the shrinking

of the lungs and the dead tissue at the bottoms. So persistence pays

off. Get some rest (cut and paste is great). Let us know how both he

and your daughter are coping in the coming winter weeks. Lots of hugs

from Georgia!

Madeline