Re: runs off at the mouth

[Guest guest]

Dear ,

It is good to hear from you and happy to hear that you

are able to get out and about. Nice to hear that you

have been able to take your daughter and her friend to

school.

These infections do tire us. I am always tired and my

cat woke me up last night at 3:00 am. She was not in

the room with me. She was yelling loudly at my door!

Whenever I am needed to gain weight and just maintain

it better I have found the generic and brand name

shakes helpful. Normally, I also buy generic. I have

also found making my own mil shakes and " blizzards "

helpful, although they lack the nutrients contained in

the shakes. To make a blizzard, I add whatever kind of

ice cream, cookies, or chocolate bar, and mix it up in

a blender. You could also add chocolate of

butterscotch syrups. When making soups use whole milk

and perhaps a bit of cream. The dietician recommended

that I use whole milk (2%) or 1% when I was trying to

gain weight. At the time, I was scrawny, underweight

form fighting Pseudomonas.

Keep your peak flows up. That is excellent!

Although I am well aware of the bronchiectasis study

suggesting that Pulmzyme would not help people with

bronchiectasis who do not have CF; I have to wonder

about that, as I believe that it may well help some

adults and children with bronchiectasis. Its

unfortunate, that because of this study that some

doctors may be opposed to trying this drug given the

expense. I have heard that some doctors have

prescribed pulmozyme for their COPD patients. It is

also being used successfully in some post-lung

transplant patients. . I have been on pulmozyme since

1999. Puylmozyme has saved me form some home IVs and

hospital stays. I just wish that I had had the

opportunity to try it when my lungs were less damaged,

as it took years of fighting to get this medication,

but it has been a godsend for me. Although, some

pulmonary specialists agree that I do have cystic

fibrosis others feel that I do not. None of them

suggest stopping the pulmozyme. They know given

medical history that it has been helpful. The worst

thing about pulmozyme is the cost. That being said it

has helped my lungs a great deal. However, my GP and

ID specialist believe that I do have a variant form of

CF and with 1400+ mutations unless one has the full

screen its quite likely for some to be missed.

Infectious disease specialists are helpful. I hope you

are able to get to a good ID specialist soon. So sorry

that your insurance would not cover the specialist

that had seen you in hospital.

Please keep us informed of your progress. Best wishes

to your daughter on her school year.

Hugs:0)

Liz in Nova Scotia, Canada with cystic fibrosis

(??), bronchiectasis, asthma, etc...

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

) " 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 don't understand, why can't you demand a 1400 panel CF screen, my daughter had one in July, just got the news it is also negative, however, we are awaiting the word on PCD?

[Guest guest]

,

My daughter's case has never been text book either, however, You just need to literally "fight" for "everything" that you believe you need. Please do not give up. I believe you live in Canada? Correct? We live in the United States, so I do not understand how your system works, however, Here in the states I have been a huge promoter of the "Canadian" medical system. Anotherwords, I believe everyone has a basic right to Good medical care, simply by being a citizen of that country, It seems our system here, tends to favor the more wealthy people. But since that 1400 screen, could ultimately help you and determine if you have CF, then it seems to me that it would save your system ultimatley alot of money, by determining what is wrong with your lungs. There is a PCD trial here in the US at 4 or 5 hospitals. They ran a CF test on my daughter, more to rule out CF, since she has had 3 negative sweat chlorides and a 97 panel that also proved negative. The 1400 panel also proved negative. I believe she has PCD, they have taken tissue from her. Please try every avenue, that you possibly can, to get the correct diagnosis even if if seems almost impossible. As I read most of the postings, I get the feeling that alot of us get "the run around" and I believe that you have to be your most important medical advocate, and if that means "demanding and staying on task' until you recieve the test that you believe is important to your well-being then keep doing it. I have fought with insurance companies this summer, until they did FINALLY comply and allow me to take my daughter to a different hospital 300 miles away, and cover it as if it were "in-netwwork" here locally. Please keep trying. I hope I have not bothered you, but I felt that it was important that I expressed my opinion to you. Good luck and keep reaching for the stars.....

[Guest guest]

Hi Vickie,

Not sure if this post is intended for or me.

About the genetic screen, the argument to have this

test done had been made at various appointments with a

former respirologist. He will remain nameless. This

doctor was not up on the latest in cystic fibrosis

research, although said specialist is one of the adult

CF doctors which in my opinion the fact that this guy

is allowed to be a CF doctor is scary and dangerous

for his patients. He does not believe in variant forms

of CF, although research clearly indicates that these

cases exist. It could be argued that he is most likely

not up on PCD. The doctor in question believes that

bronchiectasis is not a serious lung disorder although

it can be and in fact bronchiectasis varies from

person to person. Each case is different. This same

doctor never ordered pulmonary function tests, rarely

ordered sputum cultures, etc. When my lungs were

growing three-or-four (cannot remember clearly)

bacteria last summer, and I was in need of IVs he

never showed concern. In fact, although I was quite

ill he never got back to me with the results of these

cultures. My family doctor had to contact my ID

specialist to get me on a protocol. I had been with

the respirologist in question for 8 years. He never

did anything to help my family doctor or me. After my

appointment with him in June, it was the last straw. I

refuse to go back to him.

Getting another respirologist is not an easy task. One

of them made some nasty remarks in my medical file. He

said I was faking my illness and manipulating the

medical system. Other lung specialist believe him, and

will not even look at my CT-chest scans, sputum

cultures, PFTs, blood work, etc. In fact, they refuse

to see me although there is concrete proof via

CT-scans of the bronchiectasis diagnosis. He told my

mom (when her mind was a bit better, still could not

leave her at home alone) and I that I was faking and

MRSA+ pneumonia. The pneumonia clearly being visible

on the chest x-ray. We have no recourse. Go to the

medical board, and most of the time they defend

doctors like this for as long, as they possibly can.

It is a strange system with little support for

patients and families.

To make matters worse for me my illness being complex

has never followed the textbooks. Therefore, I am a

black sheep. None of the respirologists in Halifax

(main teaching centre and respirology centre for the

province) wants to treat or touch me with a ten foot

pole since obviously I'm a trouble maker that is

faking her bronchiectic lung disease.

Thanks and Hugs:0)

Liz

--- VickieVL@... wrote:

> I don't understand, why can't you demand a 1400

> panel CF screen, my daughter

> had one in July, just got the news it is also

> negative, however, we are

> awaiting the word on PCD?

>

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

) " 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]

Dear Vickie,

My family and I have been through many avenues within

Canada, and have been fighting ongoing battles with

various doctors or to get into various specialists

since I was a child. As an adult, as my lungs have

worsened, I have been to Toronto on at least four

occasions, have travelled to Montreal, and to

Saskatoon all in an effort to seek specialised care.

All trips have in some respects a financial burden

(Thankfully, service groups have been helpful.), and

without the added benefit of receiving medical help.

Doctors outside NS will not follow me. Moving was not

an option, as I was looking after my mother, but would

have been willing to fly to Ontario or elsewhere for

follow up care. Toronto specialists that had promised

at the time to provide follow up changed their minds.

Once back in Nova Scotia they were no longer willing

to help. This created disappointment. My brother and I

even asked if I could be followed through a

tele-healthcare network - via video conferencing. We

had been led to believe this could be a possibility.

Only again to be let down later. The medical system is

good in Canada if the doctors understand what is up.

Its much better I think sometimes for the paediatric

age group with rare disorders than it is for adults.

Sick Kids for example is well noted for its research

into children's health. Problem is after a teen turns

18 or so Sick Kids will not follow them. Often it

seems adult hospitals are not up on orphan diseases.

Adults with these issues are more likely to be stuck,

and to receive the run around, because adult

physicians are less likely to understand their

conditions and may not always be so willing to contact

their paediatric colleagues. For people with rarer

problems the system can be more than a hassle.

To be quite honest, I'd rather be living in the US, I

think even with insurance problems ... not sure about

that (really), but it seems there might be in some

ways more options. At the same time I believe that

health care is a right for everyone and not a

privilege. Yet, getting the necessary health care for

me is a long-standing problem. Effectively, at this

time I am blocked from receiving specialised lung

care. I am without a hospital to go to for my

bronchiectasis/CF care since the local hospital lacks

a lung specialist and does not know how to care for

bronchiectasis patients. My lung care follows the CF

protocol that the hospital staff knows even less

about. Yes, I can go there, but they really do not

know how to handle my care. When I am sicker frankly,

this can be scary. Receiving respirology care in

Halifax is simply not an option. Respirologists have

actually refused to accept referrals from my family

doctor. Will not listen to him, refuse to see me. They

have been known to tell my family doctor, as much.

Ruffling feathers, going to the media, and so on when

I am trying to get on a lung transplant list could

make my situation much worse.

Not all of my meds are covered; portable 02 is also

not covered, as my family helps me pay for my 02.

ironically, if the respirologist complied by th NPD

results most everything would be covered under the

cystic fibrosis program including portable 02.

I am working on moving to Edmonton, Alberta, because

medical care is said to be better. Edmonton has a

world class transplant program, and I'm hoping to be

listed for a double lung transplant which will mean

jumping through more hoops, but will be worthwhile. In

my opinion, the Canadian system is not the great

system it once was. Before the government made cuts to

medical schools and hospitals in the 1990s it could be

argued that we had a much better system. The care was

much better, more accessible to all Canadians, doctors

and nurses seemed happier. A lot has changed and not

for the better despite improvements with technology.

The older system was seemingly better.

The bottom line is that doctors already have a CF

diagnosis made through the NPD test in Toronto.

Genetics testing can be useful but will not change my

treatment plan. The only good news is that that I

should be able to receive better follow up and more

care under CF drug programs, but what is covered

varies from province. If Sick Kids would do the test

(with a referral) going through Ambry would become a

moot point. None of the testing will be useful if

specialist on the other hand chooses to ignore

positive results. This is what has happened.

Effectively it has led me to fall through the cracks

in the system.

I agree with fighting and system and haven't given up,

but its not an easy system to fight and the

specialists all " stick " together and side with each

other. Ontario specialists have been known to tell my

brother or sister-in-law and I one thing about my

diagnosis only to write something entirely different

in a letter to my GP.

BTW... You haven't bothered me. I hope this e-mail

makes sense. Late night here and now its off to bed

for me!

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

) " 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]

, Toronto here. I think one of the problem with Canadian medical

care is, as soon as some medical students finish their medical

studies, they head for the US. I have eyetrouble, retina, only 4

surgeons in the Toronto area can do the laser surgery I require.

That's four surgeons for a population of 8 million in this part of

Ontario. My chest docs I visit have the american chest whatever

certificate hanging on their office wall. My chest guy has

certificates from practically every medical school, (US & Can). He's

good doing bronchoscopys, finds little bumps on my thorax, pretty red

pics are in my chart. Then what......? I don't think he knows how to

treat bronchiectasis. He's into Asthma. I once asked him if I could

be tested for CF, he laughed at me and said I had a pregnancy and I am

too fat to have any CF. I mentioned on hot days I sweat and there is

salt on my scalp and forehead, lots. He said I was probably

dehydrated, right, before, druing and after I do my walking and biking

I drink 2 liters of water at times. I didn't say anything. I do not

let myself get dehydrated. Once winter's arrives, I may move over to

St.'s Hospital bronchiectasis and CF clinic.

Karin

>

> Dear Vickie,

>

> My family and I have been through many avenues within

> Canada, and have been fighting ongoing battles with

> various doctors or to get into various specialists

> since I was a child. As an adult, as my lungs have

> worsened, I have been to Toronto on at least four

> occasions, have travelled to Montreal, and to

> Saskatoon all in an effort to seek specialised care.

>

[Guest guest]

Wow, the system there doesn't sound much different than the system here, really. Most doctors stick together. However, I did run into a situation with my daughter this summer, when I took her to Children's Hospital in St.Louis, to get a second opinion. The doctors there did not agree with the Pulmonologist(Here in Kansas City) and refused to do a middle lung resection. Consequently, I think I have aliented the pulmonologist here. I believe he was insulted by my wanting a second opinion. Some doctors have big ego's. Anyway, take care, and I will keep you in my thoughts and prayers. P.S. So sorry it took me a long time to get back with you, we had the 9-11 thing here on Monday and my daughter got sick again, and is back on Prednisone and Augmentin, just thru her pediatrician. Please Take care of yourself.,,,,,

[Guest guest]

, I think I may take your advice. After my regular once every 6

month appointment with the Mt.Sinai respirologist, I will switch.

Thanks

take care,

Karin

>

> Dear Karin,

>

> I understand your frustrations. Respirologists often

> seem to understand very little about bronchiectasis.

> Unfortunately, some assume that it is not serious, but

> it can be.

>

> Actually, concerning women with CF having children

> many are doing just that and raising families. As far

> as weight goes people with CF come in all shapes in

> sizes. Many are thin or even under weight. CF clinics

> also see people with CF who are of average weight and

> even treat patients that are over weight. One of my CF

> friends actually weights over 200 pounds. CF is a

> complex disease with a wide spectrum of symptoms.

>

> You may receive better care at St. Mike's and I'd

> encourage you to move now rather than wait.

>

> Hugs:0)

> Liz

>

[Guest guest]

I've had many respirologists in the last 40 years. When I was 20, I

was given excellent care. I noticed since I turned 60, the doctors

don't seem to care. I'm single, adult son (37). They don't need me.

Karin

>

> i had the same problem for a long time! no resp that i went to

thought bronch was anything to worry about and glossed over my

insistant requests to get a cf panel done.

> so i kept changing resps. i went through 4 or 5 before i finally got

to the one i currently have and love.