Re: Back home again in Indiana.....

[Guest guest]

YEAH.. Your home.. We missed you. I guess you DID have an ordeal. I do hope you get some rest. I know that is so hard to do when you have been turned inside out, then used for a pin cushion. I can't imagine them putting you through all that in such a short period.

My hubby wants to know if they had to push on your artery for 20 min. after the stint... He has had that twice. and says he'll never do it again..he would..

I hope you told him ( your Dr.) his diagnosis is not acceptable. You are such a strong sweet spirit, I know you'll fight this with with success for at least another 10 years.. yep we're all stickin around long enough to drive our kids nuts.. That's my goal. Anyhow sweetie you take care of you and God Bless you...

Peggy 09/04 ipf

Hi Boys and Girls,

What an ordeal!!! All day Monday and Tuesday they drained all the blood from my body into little tubes, took millions of pictures of my heart and lungs, and asked every question known to mankind. I was sooooo tired by the end of each day. Wednesday, I went for my heart catherization. After the initial torture the doc said he saw a little blockage in a minor artery and they wanted to fix it. Sooo, I waited for the cardiac surgeon and another round of torture began. When he got the baloon and stent up there he discovered that I had an 85% blockage of the right coronary artery...(I never have had a symptom). They put in the stent and I had to spend the night in the hospital. That was fun...not!

Thursday afternoon I met with the transplant doc and his people again. He told me that the heart blockage postponed any decision on transplant for six months. He is also concerned about the voice thing, some old stroke and seizure activity and a million other health problems. He wants me back in six months for another catherization.....if everything else turns out great!

Bad news is that the Bronchiectasis is more pronounced than we thought. Which will probably mean a constant series of inhaled and other antibiotics. Good news is that I had no heart failure or pulmonary hypertension. They had seen the enlarged right artery on the CT and thought it must be PH.

His diagnosis was: Coronary Heart Disease, IPF. Bronchiectasis and of course Lupus.

My husband asked him how much time left....he told us that if it is two years we should live those two years with all our might....and it could be longer. They will not predict. I am fortunate to have had the long run that I have had. So, I am waiting for bloodwork to return and if it is good, then I will go forward with more testing, etc. Wants me to get into shape.

I would reccommend -Jewish Hospital in St. Louis to anyone. Thier statistics are among the top in the country and they take complicated cases that others turn down. It is giagantic. Every single person with whom we had contact was extremely well trained and very nice. I was soooooo impressed with the doctors. The surgeon that did the very first lung transplant at is still there. Came to see me in the hospital after the stent surgery. He was like the guy next door. Just really nice people...everyone.

We are glad to get home. We are both exhausted. My husband must have pushed that wheelchair 80 miles this week.

I missed chatting with all of you. I am going to read every post and catch up.

Hugs,

Joyce PF 1997

[Guest guest]

Peggy,

My hubby wants to know if they had to push on your artery for 20 min. after> the stint... He has had that twice. and says he'll never do it again

You know how the docs, etc. always say..."now this might cramp a little or you are going to feel a little sting" .... and it hurts like everything. This guy came in to put pressure on the artery and told me..."this is going to hurt".....after 20 minutes, I was wet with sweat...it hurt soooooo bad! They wouldn't give me much relaxation medicine (didn't feel any effect at all) and told me that they were giving me morphine afterwards for the groin pain and for back pain. If they had any morphine in that needle, I didn't feel it. I have had morphine! They told me that they could not sedate me any further because of my lungs. My muscles are still sore from all the tension due to pain and needles. Waaagh!! I am a big cry baby!!

Thanks for your prayers and for caring about me!

Hugs,

Joyce PF 1997 >> YEAH.. Your home.. We missed you. I guess you DID have an ordeal. I do hope> you get some rest. I know that is so hard to do when you have been turned> inside out, then used for a pin cushion. I can't imagine them putting you> through all that in such a short period.> My hubby wants to know if they had to push on your artery for 20 min. after> the stint... He has had that twice. and says he'll never do it again..he> would.. > I hope you told him ( your Dr.) his diagnosis is not acceptable. You are> such a strong sweet spirit, I know you'll fight this with with success for> at least another 10 years.. yep we're all stickin around long enough to> drive our kids nuts.. That's my goal. Anyhow sweetie you take care of you> and God Bless you...> Peggy 09/04 ipf> > Hi Boys and Girls, > > What an ordeal!!! All day Monday and Tuesday they drained all the blood> from my body into little tubes, took millions of pictures of my heart and> lungs, and asked every question known to mankind. I was sooooo tired by the> end of each day. Wednesday, I went for my heart catherization. After the> initial torture the doc said he saw a little blockage in a minor artery and> they wanted to fix it. Sooo, I waited for the cardiac surgeon and another> round of torture began. When he got the baloon and stent up there he> discovered that I had an 85% blockage of the right coronary artery...(I> never have had a symptom). They put in the stent and I had to spend the> night in the hospital. That was fun...not!> > Thursday afternoon I met with the transplant doc and his people again. He> told me that the heart blockage postponed any decision on transplant for six> months. He is also concerned about the voice thing, some old stroke and> seizure activity and a million other health problems. He wants me back in> six months for another catherization.....if everything else turns out great!> > Bad news is that the Bronchiectasis is more pronounced than we thought.> Which will probably mean a constant series of inhaled and other antibiotics.> Good news is that I had no heart failure or pulmonary hypertension. They> had seen the enlarged right artery on the CT and thought it must be PH.> > His diagnosis was: Coronary Heart Disease, IPF. Bronchiectasis and of course> Lupus. > > My husband asked him how much time left....he told us that if it is two> years we should live those two years with all our might....and it could be> longer. They will not predict. I am fortunate to have had the long run that> I have had. So, I am waiting for bloodwork to return and if it is good,> then I will go forward with more testing, etc. Wants me to get into shape.> > I would reccommend -Jewish Hospital in St. Louis to anyone. Thier> statistics are among the top in the country and they take complicated cases> that others turn down. It is giagantic. Every single person with whom we> had contact was extremely well trained and very nice. I was soooooo> impressed with the doctors. The surgeon that did the very first lung> transplant at is still there. Came to see me in the hospital after> the stent surgery. He was like the guy next door. Just really nice> people...everyone. > > We are glad to get home. We are both exhausted. My husband must have> pushed that wheelchair 80 miles this week.> > I missed chatting with all of you. I am going to read every post and catch> up. > > Hugs, > > Joyce PF 1997>

[Guest guest]

Hi Joyce, So glad you are back and that your ordeal is over! We missed you so much! I di have a wonderful time in San Diego with my kids and got encouraging news from the transplant team. I had the same experience as you-the doctors were wonderful, professional and so knowledgeable. My lung volume has gone from 34% to 60 % on the steroids which means I'm on hold for the transplant and they think they can manage the PF with steroids and Imuran for several years before it gets worse. They had hoped some of the scarring was inflamation and would disappear with the prednisone-but it has all stayed. Overall though, this was the first encouraging news I have gotten. I am having weird side effects from the steroids-very blurry vision, painful knees and ankles in the morning and I am getting very "fluffy." They would like me to stay on 40 mg for 6 more weeks but I am not sure I

will make it. This morning my knees were so swollen I could not get out of bed for the first hour. Monday I get to go to the cardiologist and get a full exam and then the eye doctor is fitting me with special glasses for the blurriness. To counteract the negatives- I had a wonderful deluxe hour long pedicure and tomorrow my kids ( minus the two in South Dakota and Oregon) are barbecuing and bringing Strawberry Pie over for a family celebration. Next week I am going for a massage (yipee). I better stop writing before I wear you out, but I am so glad our Queen is back! Keeping you in prayer-Joyce wrote: Hi Boys and Girls, What an ordeal!!! All day Monday and Tuesday they drained all the blood from my body into little tubes, took millions of pictures of my heart and lungs, and asked every question known to mankind. I was sooooo tired by the end of each day. Wednesday, I went for my heart catherization. After the initial torture the doc said he saw a little blockage in a minor artery and they wanted to fix it. Sooo, I waited for the cardiac surgeon and another round of torture began. When he got the baloon and stent up there he discovered that I had an 85% blockage of the right coronary artery...(I never have had a symptom). They put in the stent and I had to spend the night

in the hospital. That was fun...not! Thursday afternoon I met with the transplant doc and his people again. He told me that the heart blockage postponed any decision on transplant for six months. He is also concerned about the voice thing, some old stroke and seizure activity and a million other health problems. He wants me back in six months for another catherization.....if everything else turns out great! Bad news is that the Bronchiectasis is more pronounced than we thought. Which will probably mean a constant series of inhaled and other antibiotics. Good news is that I had no heart failure or pulmonary hypertension. They had seen the enlarged right artery on the CT and thought it must be PH. His diagnosis was:

Coronary Heart Disease, IPF. Bronchiectasis and of course Lupus. My husband asked him how much time left....he told us that if it is two years we should live those two years with all our might....and it could be longer. They will not predict. I am fortunate to have had the long run that I have had. So, I am waiting for bloodwork to return and if it is good, then I will go forward with more testing, etc. Wants me to get into shape. I would reccommend -Jewish Hospital in St. Louis to anyone. Thier statistics are among the top in the country and they take complicated cases that others turn down. It is giagantic. Every single person with whom we had contact was extremely well trained and very nice. I was soooooo impressed with the doctors. The surgeon that

did the very first lung transplant at is still there. Came to see me in the hospital after the stent surgery. He was like the guy next door. Just really nice people...everyone. We are glad to get home. We are both exhausted. My husband must have pushed that wheelchair 80 miles this week. I missed chatting with all of you. I am going to read every post and catch up. Hugs, Joyce PF 1997

Yahoo! Groups gets better. Check out the new email design. Plus there’s much more to come.

[Guest guest]

Hey, Joyce: I am so glad that you got some very good treatment. Sounds like God led you to the right place. You Go Girl!!!! Barb in KY / Adult PLCH 6/2006denise randel wrote: Hi Joyce, So glad you are back and that your ordeal is over! We missed you so much! I di have a wonderful time in San Diego with my kids and got encouraging news from the transplant team. I had the same experience as you-the doctors were wonderful, professional and so knowledgeable.

My lung volume has gone from 34% to 60 % on the steroids which means I'm on hold for the transplant and they think they can manage the PF with steroids and Imuran for several years before it gets worse. They had hoped some of the scarring was inflamation and would disappear with the prednisone-but it has all stayed. Overall though, this was the first encouraging news I have gotten. I am having weird side effects from the steroids-very blurry vision, painful knees and ankles in the morning and I am getting very "fluffy." They would like me to stay on 40 mg for 6 more weeks but I am not sure I will make it. This morning my knees were so swollen I could not get out of bed for the first hour. Monday I get to go to the cardiologist and get a full exam and then the eye doctor is fitting me with special glasses for the blurriness. To counteract the negatives- I had a wonderful deluxe hour long

pedicure and tomorrow my kids ( minus the two in South Dakota and Oregon) are barbecuing and bringing Strawberry Pie over for a family celebration. Next week I am going for a massage (yipee). I better stop writing before I wear you out, but I am so glad our Queen is back! Keeping you in prayer-Joyce wrote: Hi Boys and Girls, What an ordeal!!! All day Monday and Tuesday they drained all the blood from my body into little tubes, took millions of pictures of my heart and lungs, and asked every question known to mankind. I was sooooo tired by the end of each day. Wednesday, I went for my heart catherization. After the initial torture the doc said he saw a little blockage

in a minor artery and they wanted to fix it. Sooo, I waited for the cardiac surgeon and another round of torture began. When he got the baloon and stent up there he discovered that I had an 85% blockage of the right coronary artery...(I never have had a symptom). They put in the stent and I had to spend the night in the hospital. That was fun...not! Thursday afternoon I met with the transplant doc and his people again. He told me that the heart blockage postponed any decision on transplant for six months. He is also concerned about the voice thing, some old stroke and seizure activity and a million other health problems. He wants me back in six months for another catherization.....if everything else turns out great! Bad news is that the Bronchiectasis is more pronounced than we thought. Which will

probably mean a constant series of inhaled and other antibiotics. Good news is that I had no heart failure or pulmonary hypertension. They had seen the enlarged right artery on the CT and thought it must be PH. His diagnosis was: Coronary Heart Disease, IPF. Bronchiectasis and of course Lupus. My husband asked him how much time left....he told us that if it is two years we should live those two years with all our might....and it could be longer. They will not predict. I am fortunate to have had the long run that I have had. So, I am waiting for bloodwork to return and if it is good, then I will go forward with more testing, etc. Wants me to get into shape. I would reccommend -Jewish Hospital in St. Louis to anyone. Thier statistics

are among the top in the country and they take complicated cases that others turn down. It is giagantic. Every single person with whom we had contact was extremely well trained and very nice. I was soooooo impressed with the doctors. The surgeon that did the very first lung transplant at is still there. Came to see me in the hospital after the stent surgery. He was like the guy next door. Just really nice people...everyone. We are glad to get home. We are both exhausted. My husband must have pushed that wheelchair 80 miles this week. I missed chatting with all of you. I am going to read every post and catch up. Hugs, Joyce PF

1997 Yahoo! Groups gets better. Check out the new email design. Plus there’s much more to come.

Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

[Guest guest]

Waaagh!! I am a big cry baby!!

W-a-a-W-a-a central here!*!*!*!*!

~Ginger~

IPF 9/04

[Guest guest]

I am so glad our Queen is back!

If Joy-ce is the Queen, does that make me the "Princess"?

kiss kiss

~Ginger~

IPF 9/04

[Guest guest]

.... SOMEONE ought to invent a machine/device to hook up to the doctor

so when they say that whatever YOU feel is feedback to them as well

.... preferably in the genital area!

Best morning so far, the side effect is that I'm losing weight, down

12 lbs since 8 June.

Phred

---- Original Message ----

From: joycedalton29@...

To: Breathe-Support

Subject: RE: Re: Back home again in Indiana.....

Date: Sun, 25 Jun 2006 02:07:42 -0000

>

>Peggy,

>

>My hubby wants to know if they had to push on your artery for 20 min.

>after

>> the stint... He has had that twice. and says he'll never do it

>again

>

>You know how the docs, etc. always say... " now this might cramp a

>little

>or you are going to feel a little sting " .... and it hurts like

>everything. This guy came in to put pressure on the artery and told

>me... " this is going to hurt " .....after 20 minutes, I was wet with

>sweat...it hurt soooooo bad! They wouldn't give me much relaxation

>medicine (didn't feel any effect at all) and told me that they were

>giving me morphine afterwards for the groin pain and for back pain.

>If

>they had any morphine in that needle, I didn't feel it. I have had

>morphine! They told me that they could not sedate me any further

>because of my lungs. My muscles are still sore from all the tension

>due

>to pain and needles. Waaagh!! [(] I am a big cry baby!!

>

>Thanks for your prayers and for caring about me!

>

>Hugs,

>

>Joyce PF 1997

>

>>

>> YEAH.. Your home.. We missed you. I guess you DID have an ordeal. I

>do

>hope

>> you get some rest. I know that is so hard to do when you have been

>turned

>> inside out, then used for a pin cushion. I can't imagine them

>putting

>you

>> through all that in such a short period.

>> My hubby wants to know if they had to push on your artery for 20

>min.

>after

>> the stint... He has had that twice. and says he'll never do it

>again..he

>> would..

>> I hope you told him ( your Dr.) his diagnosis is not acceptable.

>You

>are

>> such a strong sweet spirit, I know you'll fight this with with

>success

>for

>> at least another 10 years.. yep we're all stickin around long

>enough

>to

>> drive our kids nuts.. That's my goal. Anyhow sweetie you take care

>of

>you

>> and God Bless you...

>> Peggy 09/04 ipf

>>

>> Hi Boys and Girls,

>>

>> What an ordeal!!! All day Monday and Tuesday they drained all the

>blood

>> from my body into little tubes, took millions of pictures of my

>heart

>and

>> lungs, and asked every question known to mankind. I was sooooo

>tired

>by the

>> end of each day. Wednesday, I went for my heart catherization.

>After

>the

>> initial torture the doc said he saw a little blockage in a minor

>artery and

>> they wanted to fix it. Sooo, I waited for the cardiac surgeon and

>another

>> round of torture began. When he got the baloon and stent up there

>he

>> discovered that I had an 85% blockage of the right coronary

>artery...(I

>> never have had a symptom). They put in the stent and I had to spend

>the

>> night in the hospital. That was fun...not!

>>

>> Thursday afternoon I met with the transplant doc and his people

>again.

>He

>> told me that the heart blockage postponed any decision on

>transplant

>for six

>> months. He is also concerned about the voice thing, some old stroke

>and

>> seizure activity and a million other health problems. He wants me

>back

>in

>> six months for another catherization.....if everything else turns

>out

>great!

>>

>> Bad news is that the Bronchiectasis is more pronounced than we

>thought.

>> Which will probably mean a constant series of inhaled and other

>antibiotics.

>> Good news is that I had no heart failure or pulmonary hypertension.

>They

>> had seen the enlarged right artery on the CT and thought it must be

>PH.

>>

>> His diagnosis was: Coronary Heart Disease, IPF. Bronchiectasis and

>of

>course

>> Lupus.

>>

>> My husband asked him how much time left....he told us that if it is

>two

>> years we should live those two years with all our might....and it

>could be

>> longer. They will not predict. I am fortunate to have had the long

>run

>that

>> I have had. So, I am waiting for bloodwork to return and if it is

>good,

>> then I will go forward with more testing, etc. Wants me to get into

>shape.

>>

>> I would reccommend -Jewish Hospital in St. Louis to anyone.

>Thier

>> statistics are among the top in the country and they take

>complicated

>cases

>> that others turn down. It is giagantic. Every single person with

>whom

>we

>> had contact was extremely well trained and very nice. I was soooooo

>> impressed with the doctors. The surgeon that did the very first

>lung

>> transplant at is still there. Came to see me in the hospital

>after

>> the stent surgery. He was like the guy next door. Just really nice

>> people...everyone.

>>

>> We are glad to get home. We are both exhausted. My husband must

>have

>> pushed that wheelchair 80 miles this week.

>>

>> I missed chatting with all of you. I am going to read every post

>and

>catch

>> up.

>>

>> Hugs,

>>

>> Joyce PF 1997

>>

>

>

[Guest guest]

.... yabbut, who's The Queen Of De Nile????

Phred

---- Original Message ----

From: TongueDancer2U@...

To: Breathe-Support

Subject: Re: Back home again in Indiana.....

Date: Sun, 25 Jun 2006 12:14:36 EDT

>

>In a message dated 6/24/2006 11:38:35 PM Central Daylight Time,

>dnsrndl@... writes:

>

>I am so glad our Queen is back!

>

>

>If Joy-ce is the Queen, does that make me the " Princess " ?

>kiss kiss

>~Ginger~

>IPF 9/04

[Guest guest]

.. . .it's not De Niece!phredta11bl@... wrote: ... yabbut, who's The Queen Of De Nile???? Phred ---- Original Message ---- From: TongueDancer2UAOL (DOT) COM To: Breathe-Support Subject: Re: Back home again in Indiana..... Date: Sun, 25 Jun 2006 12:14:36 EDT > >In a message dated 6/24/2006 11:38:35 PM Central Daylight Time, >dnsrndl writes: > >I am so glad our Queen is back! > > >If Joy-ce is the Queen, does that make me the "Princess"? >kiss kiss >~Ginger~ >IPF 9/04

Want to be your own boss? Learn how on Yahoo! Small Business.

[Guest guest]

Yes defiantely! Our Princess of Prose and Poetry!TongueDancer2U@... wrote: I am so glad our Queen is back! If Joy-ce is the Queen, does that make me the "Princess"?

kiss kiss ~Ginger~ IPF 9/04

Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

[Guest guest]

^o^ you crack me up Ginger.

Peggy 09/04 ipf

Waaagh!! I am a big cry baby!!

W-a-a-W-a-a central here!*!*!*!*!

~Ginger~

IPF 9/04

[Guest guest]

.... I saw De Neice drivinfg a De Soto once ....

Phred

---- Original Message ----

From: dnsrndl@...

To: Breathe-Support

Subject: Re: Back home again in Indiana.....

Date: Sun, 25 Jun 2006 12:25:12 -0700 (PDT)

>. . .it's not De Niece!

>

>phredta11bl@... wrote:

> ... yabbut, who's The Queen Of De Nile????

>

> Phred

>

> ---- Original Message ----

> From: TongueDancer2U@...

> To: Breathe-Support

> Subject: Re: Back home again in Indiana.....

> Date: Sun, 25 Jun 2006 12:14:36 EDT

>

> >

> >In a message dated 6/24/2006 11:38:35 PM Central Daylight Time,

> >dnsrndl@... writes:

> >

> >I am so glad our Queen is back!

> >

> >

> >If Joy-ce is the Queen, does that make me the " Princess " ?

> >kiss kiss

> >~Ginger~

> >IPF 9/04

>

>

>

>

>

>

>---------------------------------

>Want to be your own boss? Learn how on Yahoo! Small Business.