Re: new here

[Guest guest]

The doctors said they don't know for sure but there are several things that

could be responsible: smoking, new office building, breathing the air from

9/11 (I worked right across the river from Ground Zero. Could be the

pollution in the NY area where I have lived all my life. Point is I've got

it and am stuck with it and trying to make the best of it.

Marsha/NYC

[Guest guest]

they told you yours is caused by smoking??? My Dr said didn't really say. Guess that is why I'm off to the specialist.

my mom they told her it was probably caused by a bad case of childhood pneumonia. She's never smoked.

Her bother coughs alot too and he's a ex-smoker. We are trying to figure out if its tertiary. But out of the family its only her me and her bother.

Do you have a puffer??? my mom does plus she has to do certain exercises to get the stuff up.

I don't cough up anything. (yea) but dr said I do have liquid sitting on my lungs at the moment.

My Bronchiactasis came on as a secondary condition caused by Alpha1 Antitrypsin Deficiency.

Sandie in MD

Never Look Down on SomeoneUnless You're Gonna Help Them Up

[Guest guest]

hello all. I have some questions about Bronchiectaisis. Dr just told me I have this but I don't really believe him. I've had pneumonia to many time and just had a CT scan and now he's sending me to a lung specialist. He said I still have fluid on my lungs. My mother has this, she was diagnosed 15yrs ago. I don't act like my mother. I do cough a bit but do not cough up stuff. I have read that this can be hereditary. Anyone find this??? What caused yours??? I am a ex smoker ,which I know does not help the situation at all. Any info would bet great..

You really need to get that fluid off of and out of your lungs. What type of insurance do you have?

Can your dr give you a script for a med to help you w/this? There's also something OTC called Mucinex. How's your breathing? Does the fluid in your lungs make it harder for you to breathe?

Have you been to Pulmonary Rehab yet? They can teach you pulmonary cleansing techniques to help rid your lungs of fluid too. This fluid buildup is what causes those horrible infections..we call them flareups..these infections make us so weak and sick. Another term for Bronchiactasis is known as wet lung..makes sense, since it's the fluid in those pockets in the deep recesses of our bronchi that stay wet w/fluid causing infection to breed.

Antibiotics have become a way of life for many of us..

Sandie in MD

Never Look Down on SomeoneUnless You're Gonna Help Them Up

[Guest guest]

hi

thxs.. yes I meant like if I went to Mexico for 2 weeks,, is it ok to skip a week. and could something go wrong with my health whilst I was away on vacation for 2 weeks or if its just two weeks I should have nothing to be concerced about.. Yes all depends on how my test this thursday work out. I could be worring for nothing. But I like to know ahead what I maybe in for.

I have a dream trip which is 6 weeks in Africa.. sort of makes me feel sick that IF I do have a problem I may not get to live my dream. :-(

ahhhh.. one step at a time ok? Don't get too far ahead of yourself..let's get test results back first..but no..you don't want to go 6 weeks without an infusion..oh heavens no..sometimes we can live our dreams..sometimes we must comprimise..and sometimes we need to prioritorize..

One day at a time..Best Wishes

Sandie

Never Look Down on SomeoneUnless You're Gonna Help Them Up

[Guest guest]

I dont know anything yet. I go for my test this thursday. On the 21st I'll then find out if my levels

are low or that I have been worring about nothing. I'm just trying to understand all of this and why he mentioned AAT (?) and what it means to my life if I do have it.

I'm glad there is web-sites cause after I left my 1st appt I had NO idea what he was talking about and was really freaking out. Least now I have some understand.

A1AD..Alpha1 Antitrypsin Immune Deficiency..

Yea Deb..I was dx'd before I had knowledge of the website. . or other people like myself. I felt so isolated, so alone.

I was told this is genetic, rare and progressive.

I thought I was handed a life sentence. I went to my mom's and told her..I have a genetic disease and it's terminal..I'm going to die. She had no idea about this either..she was never dx'd..she's my mom, so if I was born with this..guess where it came from..Hello MOM! She's still in denial..she says her dr told her ' she doesnt' have IT " ..I said ' mom..you don't GET IT" ..it's not a communicable disease. You're BORN with it..it's a GENETIC DISORDER..sooooooooo if you don't " have it " then I guess you're not my mom..and hmmm..what else arent you telling me..

For those who would like to be tested this test is free thru the A1AD foundation. It's also confidential..let me know and I can put you in touch with the contact person at the Foundation in FL. It doesn't matter if you're overseas, in Canda or wherever..the A1AD foundation is there for everyone who needs help.

Best Wishes

Sandie

Never Look Down on SomeoneUnless You're Gonna Help Them Up

[Guest guest]

hi

thxs.. yes I meant like if I went to Mexico for 2 weeks,, is it ok to skip a week. and could something go wrong with my health whilst I was away on vacation for 2 weeks or if its just two weeks I should have nothing to be concerced about.. Yes all depends on how my test this thursday work out. I could be worring for nothing. But I like to know ahead what I maybe in for.

I have a dream trip which is 6 weeks in Africa.. sort of makes me feel sick that IF I do have a problem I may not get to live my dream. :-(

Deb

From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of Sunniesback55@...Sent: Sunday, December 10, 2006 2:25 AMTo: bronchiectasis Subject: Re: new here

I've been reading up on the drugs... so here is my stuiped question.. if this is a weekly thing and a heathcare provider must admin it.. how does one go on vacations???? I love to travel to ie/Mexico etc.

Can you give this to yourself???? what happens if something goes wrong??

ok..I'm not quite sure what you're referring to here, but I'm gonna step out on a limb and assume you're referring to the weekly IV treatments of (in my case ) Prolastin.

A few years back when Prolastin was being manufactured by Bayer Direct, it was routine for them to shut down their plant once a year to do inventory, maintenance and so forth. So..during that time, those of us being infused with Prolastin would start stockpiling for the weeks our prolastin deliveries were put on hold.

We'd infuse every other week instead of weekly. Yes..our serum levels would drop..but it wasn't a danger to us and it was only a temporary thing. So, it was ok.

One doesn't have to put their life on hold because of their weekly treatments. It's ok to skip a week, but I wouldn't suggest skipping two weeks.

We manage our illness..our illness doesn't manage us...remember that.

What do you mean..' what if something goes wrong? "...

Sandie in MD

Never Look Down on SomeoneUnless You're Gonna Help Them Up

[Guest guest]

I dont know anything yet. I go for my test this thursday. On the 21st I'll then find out if my levels

are low or that I have been worring about nothing. I'm just trying to understand all of this and why he mentioned AAT (?) and what it means to my life if I do have it.

I'm glad there is web-sites cause after I left my 1st appt I had NO idea what he was talking about and was really freaking out. Least now I have some understand.

thxs

deb

From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of HoltSent: Sunday, December 10, 2006 8:39 AMTo: bronchiectasis Subject: RE: new here

Hi Debbie,

Is this a kind of med that you would be able to learn to infuse on your own or does it require monitoring by a nurse? Please ask your doctor if this might be a possibility. If so, he might allow you to take meds and all on your trip.

Hugs:0)

Liz e-mail:maryholt12yahoo (DOT) ca or lungsformaryyahoo (DOT) caPre-Lung Transplant Journey - For updates please visit my carepage and leave a message. Thank you!:0)carepages.com name:maryelizabethholt:o) "Miracles happen with love....." ..... Please support your local children's hospital.... and "Give with all your might!" http://iwkfoundation.org/ )Visit.... Children's racle Network.... http://www.cmn.org/ )"I don't give in, I don't give up, and I don't take no for an answer."~Doris ~

All new Yahoo! Mail -

Get a sneak peak at messages with a handy reading pane.

[Guest guest]

curius --- I know it genentic and from what I understand it take mom and dad to make a child with it.

Now my mother has bronchietasis (no one else in the family does) and now they say I have.

IF,, IF I have Alpha 1 the Dr said mom and my son should be tested.

But if it takes mom AND dad the how does mom have it??? that would mean that grandma and grandpa gave the gene to mom but not the other 5 kids and mom and doesn't matter about dad? but it takes mom AND dad , course then gave it to me. So dad would have had to carry the gene too.. or do I have it wrong.???

k..here's how it goes..we're gonna have to get into the dna..and genotypes.

Take me, for instance. I'm A1AD ZZ..which means my mom had to carry ONE Z gene and my bio father the other Z gene. Therein, I'm a ZZ..this is rare..consider the odds of two people getting together pro creating who both carry a deficient Z gene eh?

Ok..now ..there's the genotype MZ..which means one parent carries the " m " malton ( nil ) gene..which means they're a non carrier..and the other carries the Z gene. There in you have offspring with MZ..

Now..take my family (this can get confusing, so try to hang with me ) . My mother is MZ..my bio father had to have been at least an MZ. (my sibs have a different father than I do ). My sisters (2) and my brothers (2) could be MM (the M gene from mom and dad ) or MZ ( the M gene from dad and the Z gene from mom ).

Basically that's how it works. Now there's other genotypes depending on culture etc..you can go to the Alpha1 website and they give you a breakown of all the dif genotypes..those from Scandanavian and Vyking heritage have another type of genotype ( I believe " S " )..and it goes on and on with dif variations..

Read on..it took me 7 years to learn all this..you're getting a mini crash course lol

Sandie

Never Look Down on SomeoneUnless You're Gonna Help Them Up

[Guest guest]

curius --- I know it genentic and from what I understand it take mom and dad to make a child with it.

Now my mother has bronchietasis (no one else in the family does) and now they say I have.

IF,, IF I have Alpha 1 the Dr said mom and my son should be tested.

But if it takes mom AND dad the how does mom have it??? that would mean that grandma and grandpa gave the gene to mom but not the other 5 kids and mom and doesn't matter about dad? but it takes mom AND dad , course then gave it to me. So dad would have had to carry the gene too.. or do I have it wrong.???

ooooooooooohhh head spinning. Think I may reshercah some family history here.

From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of Sunniesback55@...Sent: Sunday, December 10, 2006 10:07 AMTo: bronchiectasis Subject: Re: new here

I dont know anything yet. I go for my test this thursday. On the 21st I'll then find out if my levels

are low or that I have been worring about nothing. I'm just trying to understand all of this and why he mentioned AAT (?) and what it means to my life if I do have it.

I'm glad there is web-sites cause after I left my 1st appt I had NO idea what he was talking about and was really freaking out. Least now I have some understand.

A1AD..Alpha1 Antitrypsin Immune Deficiency..

Yea Deb..I was dx'd before I had knowledge of the website. . or other people like myself. I felt so isolated, so alone.

I was told this is genetic, rare and progressive.

I thought I was handed a life sentence. I went to my mom's and told her..I have a genetic disease and it's terminal..I'm going to die. She had no idea about this either..she was never dx'd..she's my mom, so if I was born with this..guess where it came from..Hello MOM! She's still in denial..she says her dr told her ' she doesnt' have IT " ..I said ' mom..you don't GET IT" ..it's not a communicable disease. You're BORN with it..it's a GENETIC DISORDER..sooooooooo if you don't " have it " then I guess you're not my mom..and hmmm..what else arent you telling me..

For those who would like to be tested this test is free thru the A1AD foundation. It's also confidential..let me know and I can put you in touch with the contact person at the Foundation in FL. It doesn't matter if you're overseas, in Canda or wherever..the A1AD foundation is there for everyone who needs help.

Best Wishes

Sandie

Never Look Down on SomeoneUnless You're Gonna Help Them Up

[Guest guest]

giggle.. thxs.. so where can I go read all this???? IF I do have it??? could I have passed it onto my son??

From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of Sunniesback55@...Sent: Sunday, December 10, 2006 2:42 PMTo: bronchiectasis Subject: Re: new here

curius --- I know it genentic and from what I understand it take mom and dad to make a child with it.

Now my mother has bronchietasis (no one else in the family does) and now they say I have.

IF,, IF I have Alpha 1 the Dr said mom and my son should be tested.

But if it takes mom AND dad the how does mom have it??? that would mean that grandma and grandpa gave the gene to mom but not the other 5 kids and mom and doesn't matter about dad? but it takes mom AND dad , course then gave it to me. So dad would have had to carry the gene too.. or do I have it wrong.???

k..here's how it goes..we're gonna have to get into the dna..and genotypes.

Take me, for instance. I'm A1AD ZZ..which means my mom had to carry ONE Z gene and my bio father the other Z gene. Therein, I'm a ZZ..this is rare..consider the odds of two people getting together pro creating who both carry a deficient Z gene eh?

Ok..now ..there's the genotype MZ..which means one parent carries the " m " malton ( nil ) gene..which means they're a non carrier..and the other carries the Z gene. There in you have offspring with MZ..

Now..take my family (this can get confusing, so try to hang with me ) . My mother is MZ..my bio father had to have been at least an MZ. (my sibs have a different father than I do ). My sisters (2) and my brothers (2) could be MM (the M gene from mom and dad ) or MZ ( the M gene from dad and the Z gene from mom ).

Basically that's how it works. Now there's other genotypes depending on culture etc..you can go to the Alpha1 website and they give you a breakown of all the dif genotypes..those from Scandanavian and Vyking heritage have another type of genotype ( I believe " S " )..and it goes on and on with dif variations..

Read on..it took me 7 years to learn all this..you're getting a mini crash course lol

Sandie

Never Look Down on SomeoneUnless You're Gonna Help Them Up

[Guest guest]

giggle.. thxs.. so where can I go read all this???? IF I do have it??? could I have passed it onto my son??

Remember, I told you this was ' genetic '..so yes..you could pass your deficient gene onto your son..for most MZers, A1AD isnt such a bad thing, as long as they live a healthy lifestyle..avoid toxins in their lungs and liver (most everything we pass thru our livers toxifies it ..med speaking..so just take the extra minute to ask your dr..is this harmful to my liver ..for the healthy liver individual it's something they don't think of..but for us A1ADers we need to ask questions..alert our dr's ..and take the responsibility to protect our livers..remember, though for us A1ADers who are lung symptomatic, it's the " liver ' that's damaged by the retention of the enzyme antitrypsin..it's all there in those websites..feel free to ask questions if there's anything you don't understand..and thanks for wanting to get to know about this disorder. Awareness and Education is the power ..

Best Wishes

Sandie

http://www.alphanetbfrg.org/Login.aspx

www.alpha2alpha.net

www.alpha1.org

Never Look Down on SomeoneUnless You're Gonna Help Them Up

[Guest guest]

cathetar???? ewwwwwwwww omg. I pray I don't have this.

I go on thursday to have my lungs drained and my tests.

I am almost looking forward to it cause I can't really breath. Esp at bed time, I go into

coughing fits. I just want to bring up something but nothing happens. This doesn't help the marriage life either.

My mind is so preoccupied with concern's. I know my husband is really worried.

I hope to feel better on Friday after the procedure. But I know something is wrong cause since my pneoumia I had couple of months ago , its getting harder to breathe. I feel like I am breathing thru cloth. I want to exercise so badly but my body hurts. But I have no breath.

12/21 I find out for sure.

so ..heres to thinking positive . :-)

Deb..yes, catheter..or however you spell it .

Prolastin and the other two meds are IV infused..which means you have a catheter to infuse the meds interveniously into your veins. I've been getting this infusions thru my veins for 7 years and my veins are doing very well. I keep myself well hydrated in order to keep my veins plump for the infusion. Some folks think a port is the way to go.

If I were a chemo patient, yes..definitely. But for prolastin and the other two meds infused interveneously?..no..ports tend to clog up..get infected at the site..it can be a nasty business. I'm relaying this information as relayed to me by others who are also infused . Some say they don't like the stick. Personally, I would prefer the stick each week than taking the risk of a port infection and having to have that surgically removed and then another surgically replaced, implanted..no thank you.

How do they drain your lungs? I understand about how this is a serious wedge between you and your husband and an interferance in your marraige. I'm going thru the same thing. He complains if I sleep on the couch. I sleep on the couch cause I cough so much I keep him awake. Ok fine, so last night I slept in the bed..and TA DAAAAAA...he complained he was up at 2 cause of my coughing..can't win..I just can't win..

Good luck and keep in touch

Sandie in MD

Never Look Down on SomeoneUnless You're Gonna Help Them Up

[Guest guest]

cathetar???? ewwwwwwwww omg. I pray I don't have this.

I go on thursday to have my lungs drained and my tests.

I am almost looking forward to it cause I can't really breath. Esp at bed time, I go into

coughing fits. I just want to bring up something but nothing happens. This doesn't help the marriage life either.

My mind is so preoccupied with concern's. I know my husband is really worried.

I hope to feel better on Friday after the procedure. But I know something is wrong cause since my pneoumia I had couple of months ago , its getting harder to breathe. I feel like I am breathing thru cloth. I want to exercise so badly but my body hurts. But I have no breath.

12/21 I find out for sure.

so ..heres to thinking positive . :-)

hugs

From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of Sunniesback55@...Sent: Tuesday, December 12, 2006 12:42 AMTo: bronchiectasis Subject: Re: new here

Hi Debbie,

Is this a kind of med that you would be able to learn to infuse on your own or does it require monitoring by a nurse? Please ask your doctor if this might be a possibility. If so, he might allow you to take meds and all on your trip.

Hugs:0)

Liz

Actually, yes. they can train you to self infuse..but I could never stick that cathetar in my veins..I know some do though..

Sandie

Never Look Down on SomeoneUnless You're Gonna Help Them Up

[Guest guest]

Hi Debbie, Only nurses (and sometimes doctors) put in heplocks unless there is something new that I'm unaware. I have heard of patients accessing with a butterfly needle? Is this it? Perhaps people are attaching their infusion to a picc line or accessing via a port-a-cath or other central type lines. Picc lines can sometimes be placed by a nurse, but mine have always been put in by radiology. Central lines are wonderful and allow us to run our own meds. When my port-a-cath was working I could access the port with a needle. Its not that bad. Our VON (nursing organisation) brings a CADD prism pump and attaches my line and IV antibiotics and I'm all set. I still have a nurse come and do mine, because my doctor wants them to check in on me, do vitals and keep in touch with him, and often I'm too sick to run my own IVs. Hope this Helps:0) Lize-mail:maryholt12@...

or lungsformary@...Pre-Lung Transplant Journey - For updates please visit my carepage and leave a message. Thank you!:0)carepages.com name:maryelizabethholt:o) "Miracles happen with love....." ..... Please support your local children's hospital.... and "Give with all your might!" http://iwkfoundation.org/ )Visit.... Children's Miracle Network.... http://www.cmn.org/ )"I don't give in, I don't give up, and I don't take no for an answer." ~Doris ~

Be smarter than spam. See how smart SpamGuard is at giving junk email the boot with the All-new Yahoo! Mail

[Guest guest]

Dear Debbie, I'm thinking and praying for you and hope you soon feel much better and that your tests go well. Hugs:0) Liz e-mail:maryholt12@... or lungsformary@...Pre-Lung Transplant Journey - For updates please visit my carepage and leave a message. Thank you!:0)carepages.com name:maryelizabethholt:o) "Miracles happen with love....." ..... Please support your local children's hospital.... and "Give with all your might!" http://iwkfoundation.org/ )Visit.... Children's Miracle Network.... http://www.cmn.org/ )"I don't give in, I don't give up, and I don't take no for an answer." ~Doris ~ __________________________________________________

[Guest guest]

hi

how long does the IV take??? I agree,, I don't think I'd want to go around with a port.

I am getting a bronchoscopy on Thursday.. he said they'd clean out my lungs whislt they are looking around.

My mother had it done 15yrs ago..said she doesn't remember a thing.. other than some painful twitchs afterwards.

Well I'm glad that after my sleep time couphing fit that once I'm asleep ,, I'm asleep. :-)

From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of Sunniesback55@...Sent: Tuesday, December 12, 2006 9:55 AMTo: bronchiectasis Subject: Re: new here

cathetar???? ewwwwwwwww omg. I pray I don't have this.

I go on thursday to have my lungs drained and my tests.

I am almost looking forward to it cause I can't really breath. Esp at bed time, I go into

coughing fits. I just want to bring up something but nothing happens. This doesn't help the marriage life either.

My mind is so preoccupied with concern's. I know my husband is really worried.

I hope to feel better on Friday after the procedure. But I know something is wrong cause since my pneoumia I had couple of months ago , its getting harder to breathe. I feel like I am breathing thru cloth. I want to exercise so badly but my body hurts. But I have no breath.

12/21 I find out for sure.

so ..heres to thinking positive . :-)

Deb..yes, catheter..or however you spell it .

Prolastin and the other two meds are IV infused..which means you have a catheter to infuse the meds interveniously into your veins. I've been getting this infusions thru my veins for 7 years and my veins are doing very well. I keep myself well hydrated in order to keep my veins plump for the infusion. Some folks think a port is the way to go.

If I were a chemo patient, yes..definitely. But for prolastin and the other two meds infused interveneously?..no..ports tend to clog up..get infected at the site..it can be a nasty business. I'm relaying this information as relayed to me by others who are also infused . Some say they don't like the stick. Personally, I would prefer the stick each week than taking the risk of a port infection and having to have that surgically removed and then another surgically replaced, implanted..no thank you.

How do they drain your lungs? I understand about how this is a serious wedge between you and your husband and an interferance in your marraige. I'm going thru the same thing. He complains if I sleep on the couch. I sleep on the couch cause I cough so much I keep him awake. Ok fine, so last night I slept in the bed..and TA DAAAAAA...he complained he was up at 2 cause of my coughing..can't win..I just can't win..

Good luck and keep in touch

Sandie in MD

Never Look Down on SomeoneUnless You're Gonna Help Them Up

[Guest guest]

Thank you Liz

From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of HoltSent: Tuesday, December 12, 2006 8:06 AMTo: bronchiectasis Subject: RE: new here

Dear Debbie,

I'm thinking and praying for you and hope you soon feel much better and that your tests go well.

Hugs:0)

Liz e-mail:maryholt12yahoo (DOT) ca or lungsformaryyahoo (DOT) caPre-Lung Transplant Journey - For updates please visit my carepage and leave a message. Thank you!:0)carepages.com name:maryelizabethholt:o) "Miracles happen with love....." ..... Please support your local children's hospital.... and "Give with all your might!" http://iwkfoundation.org/ )Visit.... Children's Miracle Network.... http://www.cmn.org/ )"I don't give in, I don't give up, and I don't take no for an answer."~Doris ~

__________________________________________________

[Guest guest]

hi

how long does the IV take??? I agree,, I don't think I'd want to go around with a port.

As I stated, I've been infused for 7 years now. It's so integrated into my life, it's just something I do, and ' a normal part of my weekly routine'. I'm usually at the clinic for about an hour. The infusion itself takes no more than a half hour. Piece of cake. I go there, I know the staff..all the nurses. I'm infused at an ambulatory oncology center..I've made a lot of friends there. We sit around with our IVs..talk, laugh, share..empathize. Some of the oncology pt's are very sick, others are recouping well.

There's two others like me, with A1AD..and we've been tagged the Alpha1 group lol..we usually sit together and just shoot the breeze. It's not bad at all.

They serve us lunch..we can have sodas, ensure, juice..I love this place. The infusion nurses are professional, compassionate, they know their stuff and getting stuck really doesn't hurt when you have someone who ' knows their job' as well as these gals do. I'll be there for the rest of my life, and I've told a few of them if I am ever forced to leave, for whatever reason, I'm kidnapping you, cause no one knows my veins better..

It's not such a bad thing..

Sandie

Never Look Down on SomeoneUnless You're Gonna Help Them Up

[Guest guest]

Hi Debbie, Bronchs are not so bad. a lavage (clean out) feels good. Hugs:0) LizDebbie wrote: hi how long does the IV take???

I agree,, I don't think I'd want to go around with a port. I am getting a bronchoscopy on Thursday.. he said they'd clean out my lungs whislt they are looking around. My mother had it done 15yrs ago..said she doesn't remember a thing.. other than some painful twitchs afterwards. Well I'm glad that after my sleep time couphing fit that once I'm asleep ,, I'm asleep. :-) From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of Sunniesback55aolSent: Tuesday, December 12, 2006 9:55 AMTo: bronchiectasis Subject: Re: new here In a message dated 12/12/2006 8:27:05 A.M. Eastern Standard Time, debrestelus (DOT) net writes: cathetar???? ewwwwwwwww omg. I pray I don't have this. I go on thursday to have my lungs drained and my tests. I am almost looking forward to it

cause I can't really breath. Esp at bed time, I go into coughing fits. I just want to bring up something but nothing happens. This doesn't help the marriage life either. My mind is so preoccupied with concern's. I know my husband is really worried. I hope to feel better on Friday after the procedure. But I know something is wrong cause since my pneoumia I had couple of months ago , its getting harder to breathe. I feel like I am breathing thru cloth. I want to exercise so badly but my body hurts. But I have no breath. 12/21 I find out for sure. so ..heres to thinking positive . :-) Deb..yes, catheter..or however you spell it . Prolastin and the other two meds are IV infused..which means you have a catheter to infuse the meds interveniously into your veins. I've been getting this infusions thru my veins for 7 years and my veins are doing very well. I keep myself well hydrated in order to keep

my veins plump for the infusion. Some folks think a port is the way to go. If I were a chemo patient, yes..definitely. But for prolastin and the other two meds infused interveneously?..no..ports tend to clog up..get infected at the site..it can be a nasty business. I'm relaying this information as relayed to me by others who are also infused . Some say they don't like the stick. Personally, I would prefer the stick each week than taking the risk of a port infection and having to have that surgically removed and then another surgically replaced, implanted..no thank you. How do they drain your lungs? I understand about how this is a serious wedge between you and your husband and an interferance in your marraige. I'm going thru the same thing. He complains if I sleep on the couch. I sleep on the couch cause I cough so much I keep him awake. Ok fine, so last night I slept in the bed..and TA DAAAAAA...he complained he was up at 2

cause of my coughing..can't win..I just can't win.. Good luck and keep in touch Sandie in MD Never Look Down on SomeoneUnless You're Gonna Help Them Up e-mail:maryholt12@... or lungsformary@...Pre-Lung Transplant Journey - For updates please visit my carepage and leave a message. Thank you!:0)carepages.com name:maryelizabethholt:o) "Miracles happen with love....." ..... Please support your local children's hospital.... and "Give with all your might!" http://iwkfoundation.org/ )Visit.... Children's Miracle Network.... http://www.cmn.org/ )"I don't give in, I don't give up, and I don't take no for an answer." ~Doris ~ __________________________________________________

[Guest guest]

I thank you for all the info you have given me. I think I am prepared

somewhat. Least I will know what the DR is talking about.

I go tomorrow for the " cleaning " and on the 21st for the results.

I will let you know what DR says.

Thanks

Quoting Sunniesback55@...:

>

>

>

>

> In a message dated 12/12/2006 9:05:58 P.M. Eastern Standard Time,

> debres@... writes:

>

>

>

>

>

> hi

> how long does the IV take??? I agree,, I don't think I'd want to go around

>

> with a port.

>

>

>

>

>

> As I stated, I've been infused for 7 years now. It's so integrated into my

> life, it's just something I do, and ' a normal part of my weekly routine'.

> I'm

> usually at the clinic for about an hour. The infusion itself takes no more

> than a half hour. Piece of cake. I go there, I know the staff..all the

> nurses.

> I'm infused at an ambulatory oncology center..I've made a lot of friends

> there. We sit around with our IVs..talk, laugh, share..empathize. Some of

> the

> oncology pt's are very sick, others are recouping well.

> There's two others like me, with A1AD..and we've been tagged the Alpha1

> group lol..we usually sit together and just shoot the breeze. It's not bad

> at all.

> They serve us lunch..we can have sodas, ensure, juice..I love this place.

> The infusion nurses are professional, compassionate, they know their stuff

> and

> getting stuck really doesn't hurt when you have someone who ' knows their

> job' as well as these gals do. I'll be there for the rest of my life, and

> I've

> told a few of them if I am ever forced to leave, for whatever reason, I'm

> kidnapping you, cause no one knows my veins better..

> It's not such a bad thing..

> Sandie

>

>

>

> Never Look Down on Someone

> Unless You're Gonna Help Them Up

>

>

>

>

>

>

>

>

[Guest guest]

In many of the e-mails I have read since signing up on this website, I have noticed a few who said they have coughed up blood. When I was first diagnosed in 1992 with bronch, I had an incident where I coughed up a lot of blood. Since then--until a few months ago--I rarely have had blood in the sputum. My doc said next time it happens he wants to do bronchosocopy. He said if it keeps up, they will cauterize(sp?) the area. Have any of you had this done before and how do they do a "cleaning"? I want to mention that to the doctor also. There are some days I imagine it would be great if we could just go in and vacuum the "stuff" out! Good Luck Debbie. Hope everything goes okay. Jan in St. Louis, MO debres@... wrote: I thank you for all the info you have given me. I think I am prepared somewhat. Least I will know what the DR is talking about.I go tomorrow for the "cleaning" and on the 21st for the results.I will let you know what DR says.Thanks Quoting Sunniesback55aol:> > > > > In a message dated 12/12/2006 9:05:58 P.M. Eastern Standard Time, > debrestelus (DOT) net writes:> > > > > > hi> how long does the IV take??? I agree,, I

don't think I'd want to go around> > with a port. > > > > > > As I stated, I've been infused for 7 years now. It's so integrated into my > life, it's just something I do, and ' a normal part of my weekly routine'.> I'm > usually at the clinic for about an hour. The infusion itself takes no more > than a half hour. Piece of cake. I go there, I know the staff..all the> nurses. > I'm infused at an ambulatory oncology center..I've made a lot of friends > there. We sit around with our IVs..talk, laugh, share..empathize. Some of> the > oncology pt's are very sick, others are recouping well. > There's two others like me, with A1AD..and we've been tagged the Alpha1 > group lol..we usually sit together and just shoot the breeze. It's not bad> at all.> They serve us lunch..we can have sodas, ensure, juice..I love this place. > The

infusion nurses are professional, compassionate, they know their stuff> and > getting stuck really doesn't hurt when you have someone who ' knows their > job' as well as these gals do. I'll be there for the rest of my life, and> I've > told a few of them if I am ever forced to leave, for whatever reason, I'm > kidnapping you, cause no one knows my veins better..> It's not such a bad thing..> Sandie> > > > Never Look Down on Someone> Unless You're Gonna Help Them Up> > > > > > > >

[Guest guest]

I think coughing up blood is not uncommon with bronchiectasis. The first time I

did postural drainage (about 4 months ago after being diagnosed), I coughed up

copius amounts of bloody mucous. Since then only a little tiny dot here and

there.

Marsha/NYC

[Guest guest]

I'll let you all know how it goes tomorrow.

hugs

From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of GlassSent: Wednesday, December 13, 2006 10:49 AMTo: bronchiectasis Subject: Re: new here

In many of the e-mails I have read since signing up on this website, I have noticed a few who said they have coughed up blood. When I was first diagnosed in 1992 with bronch, I had an incident where I coughed up a lot of blood. Since then--until a few months ago--I rarely have had blood in the sputum. My doc said next time it happens he wants to do bronchosocopy. He said if it keeps up, they will cauterize(sp?) the area. Have any of you had this done before and how do they do a "cleaning"? I want to mention that to the doctor also. There are some days I imagine it would be great if we could just go in and vacuum the "stuff" out!

Good Luck Debbie. Hope everything goes okay.

Jan in St. Louis, MO

debrestelus (DOT) net wrote:

I thank you for all the info you have given me. I think I am prepared somewhat. Least I will know what the DR is talking about.I go tomorrow for the "cleaning" and on the 21st for the results.I will let you know what DR says.Thanks Quoting Sunniesback55aol:> > > > > In a message dated 12/12/2006 9:05:58 P.M. Eastern Standard Time, > debrestelus (DOT) net writes:> > > > > > hi> how long does the IV take??? I agree,, I don't think I'd want to go around> > with a port. > > > > > > As I stated, I've been infused for 7 years now. It's so integrated into my > life, it's just something I do, and ' a normal part of my weekly routine'.> I'm > usually at the clinic for about an hour. The infusion itself takes no more > than a half hour. Piece of cake. I go there, I know the staff..all the> nurses. > I'm infused at an ambulatory oncology center..I've made a lot of friends > there. We sit around with our IVs..talk, laugh, share..empathize. Some of> the > oncology pt's are very sick, others are recouping well. > There's two others like me, with A1AD..and we've been tagged the Alpha1 > group lol..we usually sit together and just shoot the breeze. It's not bad> at all.> They serve us lunch..we can have sodas, ensure, juice..I love this place. > The infusion nurses are professional, compassionate, they know their stuff> and > getting stuck really doesn't hurt when you have someone who ' knows their > job' as well as these gals do. I'll be there for the rest of my life, and> I've > told a few of them if I am ever forced to leave, for whatever reason, I'm > kidnapping you, cause no one knows my veins better..> It's not such a bad thing..> Sandie> > > > Never Look Down on Someone> Unless You're Gonna Help Them Up> > > > > > > >

[Guest guest]

Is it bad for Bronchiectasis if you have a cat?

Marsha/NYC

[Guest guest]

I have 2 .. one sheds like mad. :-)don't think it bothers me.

From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of marsha granvilleSent: Wednesday, December 13, 2006 6:56 PMTo: bronchiectasis Subject: Re: new here

Is it bad for Bronchiectasis if you have a cat?Marsha/NYC