M-13 - Medical Diseases

[Chloe]

wELL, have any of you heard of it? Anyone have it? i was just diagnosed with it yesterday... i think the american foundation for behcets has a website wll it does... hold on...
ttaken from the website...
What is Behcet's Disease?

Also known as BD, Silk Road, and Silk Route disease - Behcet's Disease currently affects an estimated 15,000 to 20,000 Americans with many more going undiagnosed.

Behcet's disease is a rare, chronic, lifelong disorder that involves inflammation of blood vessels throughout the body. Symptoms of Behcet's disease include recurrent oral ulcers (resembling canker sores), recurrent genital ulcers, and eye inflammation. The disorder may also cause various types of skin lesions, arthritis, bowel inflammation, and meningitis (inflammation of the membranes of the brain and spinal cord). Behcet's disease generally begins when patients are in their 20s or 30s, although all age groups may be affected. Behcet's is a multisystem disease; it may involve all organs and affect the central nervous system, causing memory loss and impaired speech, balance, and movement. The effects of the disease may include blindness, stroke, swelling of the spinal cord, and intestinal complications.

Behcet's disease is a disorder which proceeds over a long period of time in a series of remissions (lack of disease activity) and exacerbations (periods of active disease).

Behcets (http://behcets.com/ivnu)

[totalmuggle]

sorry never heard of it. i only know about what i have. (cystic fibrosis, cf related diabetes, celiac, cancer)

[JofpGallagher]

I am sorry to hear that Chloemnet. Hope you find all the support you need. By the way, you could edit the link you provided since it has the words "ivnu" and it's making the link to fail.

ATTENTION: In addition to all posters and just in case: personal illness is a very private issue. I would like that all of us to be disease-free, but some have. Seeking support from CoS friends is a good thing, but please, avoid to display very personal issues in this forum. Informative inputs, experiences, articles, research studies, debates about the topic, etc. are welcome. Thanks.

[Chloe]

Oh, thank you... yes, i believe the link is just Behcets.com... so type that into your browser. the doctors are 95% sure that i have behcets, but i may actually have Cf, total muggle...

[totalmuggle]

i cant under stand why people cant idmit an illness. people are always trying to hide things. and there must be a few people like you on here, or they might know someone like you.

[SilverStar]

Aww, I'm so sorry, guys!! Thanks for posting this; I was completely unaware of this, which is suprising for me considering I volunteer at two hospitals.

[totalmuggle]

well if they think u might like 5% have cf i hope they wont make you take a sweat test. i had to do it five times so now i have 2 large marks where it was done.(nad cf cost a heckload for my parents-mainly the transplant im getting)
and cf is always active from birth. plus only 40% of people with cf live to be 18.

[totalmuggle]

if you did have cf this is what your meds might sound like

54 creon-about 10 with evry meal and 7 with every snak
4 or 5 nebs. each take about 15 min.
somewhere between 2-25 sometimes even 50 other pills
and youll have to do cpt's with your parents thummping you or have to buy a 17,000 dollar vest. cpt's are done about 20 min. each, 2-6 times a day
you might also need oxygen like i do. and you might have to do home iv's that need picc lines (they hurt for about 10 days)
heres a list of common cf meds.


ABDEK Softgel Multivitamins (60)
$18.95

Acapella DH - blue - low flow (1)
$47.50

Acapella DH - green - high flow (1)
$47.50

Actigall 300mg Caps (100)
$368.46

ADEKs Multivitamins (60)
$21.95

ADEKs Pediatric Drops 60 ml (1 bottle)
$9.99

Albuterol Inhaler (90 mcg) (1)
$21.41

Albuterol Sol. .5% 20 ml (1 bottle)
$14.99

Bactrim DS 800/160ml (30)
$55.56

Beclovent Inhaler (16.8 gm) (1)
$40.90

Broncho Saline 0.9% 240ml (1)
$7.00

Cipro 500 mg Tabs (100)
$527.89

Cipro 750 mg Tabs (50)
$285.13

Colistimethate 150mg/2ml (1 vial)
$50.16

Colymycin 150 mg / 2 ml (1 vial)
$58.65

Cookie Bar - Chocolate or Oatmeal Raisin (12)
$34.95

Creon- 5 Capsules (100)
$43.74

Creon-10 Capsules (100)
$86.03

Creon-20 Capsules (100)
$166.81

Cromolyn Sodium 20 mg / 2 ml (240 ml)
$84.00

Flonase Nasal Spray 16 gm (1)
$68.26

Flovent MDI (220 mcg) (1)
$120.29

Flutter (1)
$44.90

Intal Inhaler (1)
$84.57

LIQUI-E - 355 ml (1 bottle)
$17.00

Mephyton 5 mg Tablets (100)
$59.45

Multivitamin Tablets (100)
$5.00

Nebcin 1.2 gm (1 vial)
$338.00

Nebulizer Acorn II (1)
$1.50

Nebulizer Set PARI LC (1)
$11.00

Pancrease Capsules (250)
$121.25

Pancrease MT- 4 Capsules (100)
$40.10

Pancrease MT-10 Capsules (100)
$100.25

Pancrease MT-16 Capsules (100)
$160.95

Pancrease MT-20 Capsules (100)
$200.46

Pancrecarb MS-4 (100)
$63.75

Pancrecarb MS-8 (100)
$115.55

PARI LC Nebulizer Set (1)
$11.00

Pepcid 20 mg (30)
$55.36

Prednisone 10 mg Tabs (100)
$9.07

Prilosec 20 mg Caps (30)
$125.98

Pulmozyme 2.5ml/ampule (30 ampules/75ml)
$1,378.44

Scandical 8oz. can (1)
$6.75

Scandishake (36 packets)
$61.95

Serevent Diskus 60 gm (1)
$87.81

Sidestream Nebulizer
$19.99

Singulair 10mg Tabs (90)
$256.35

SMZ-TMP DS Tabs (100)
$90.32

SMZ-TMP SS Tabs (100)
$59.80

Sodium Chloride .45% / 500 ml (1)
$32.10

Sodium Chloride .9% UD (300 ml)
$14.00

Sterile Water 5MLx25 (125ml)
$35.00

Syringe BD 0.3cc 29 gauge - Insulin (100)
$24.38

Syringe BD 0.5cc 29 gauge - Insulin (100)
$24.38

Syringe BD 1cc 29 gauge - Insulin (100)
$24.38

Syringe BD LUER 30cc (30)
$22.55

TOBI 5ml/ampule (56 ampules/280 ml)(tobi is a neb and it cost 100 or more a day)(u go one month on one off)(thats 18,000 a year)
it cost $2,896.7 a month here $3145 at walgreens

Ultrase Caps (100)
$47.99

Ultrase MT-12 Caps (100)
$98.90

Ultrase MT-18 Caps (100)
$155.04

Ultrase MT-20 Caps (100)
$171.34

Urso 250 mg (100)
$200.86

Vancenase AQ (DS) Spray (1)
$52.52

Viokase 16 Tabs (100)
$67.28

Viokase 8 Powder 227gm (1)
$145.01

Vitamax Chewable Tabs GRAPE/ORANGE (90)
$12.95

Vitamax Pediatric Drops CHERRY (90ml)
$9.95

Vitamin E 100IU Caps (100)
$4.50

Vitamin E 400IU Caps (100)
$9.99

Water - Sterile 5MLx25 (125 ml)
$35.00

ZANTAC 150 mg Tabs (60)
$123.80

ZANTAC 75mg Tabs (60)
$20.00

ZANTAC Syrup 15 mg / ml (480 ml)
$232.69

Zithromax 250mg (30)
$224.87

Zithromax 600mg (30)
$514.00

Zithromax Z-PAC 250mg(6)
$42.83

and for transplants(most people with cf get one at some piont)

Cytovene 250 mg (180 caps)
$820.67

Neoral 25 mg (30 caps)
$43.46

Prednisone 10 mg Tabs (100)
$9.07

Prograf 1 mg (100 tabs)
$341.60

Sandimmune 25 mg (30 caps)
$47.40


hope you find this useful to an extent
i hope im also not scaring you. im just telling you what you can expect.

[HollywoodBob]

Oh man, I feel ill just looking at the prices of your meds TM. If ever there was an argument for nationalized health care, I think that list is it. :(

-HollywoodBob

[totalmuggle]

Oh man, I feel ill just looking at the prices of your meds TM. If ever there was an argument for nationalized health care, I think that list is it. :(

-HollywoodBob
my transplant is going to cost 300,000 plus the cost of anti-rejection meds!
can you talk about over priced?

[JofpGallagher]

I am very sorry that you have to live through that unfair illness Totalmuggle. I'm hoping you will find all the resources you need to cope with this happily.

Bythe way...I'm sorry if I sound rude, but keep in mind Chloemnet created this thread to discuss the Bechet's disease.

[rotsiepots]

Oh dear, Chloe, I hope you're alright!

I can't say I've ever heard of Behcet's Disease, but I'll do some reading up.

All the best. :)

[Chloe]

Thanks! yes, they diagnosed me as herpes without doing any tests and then we found out it wasnt herpes or anything like tht... TM, i hope you feel better! Behcets is easy to live with though... and i just got a bunch of books and resources and a book called "You are note alone" Where there is a 12 yr old girl and a bunch of other ages of people that have behcets, like me! So that has really helped me out to make me feel better..

[Mireille]

To add to Chloe's list of what the disease does to you, the disease generally begins in people in their 20s or 30s and tends to occur mostly in men than in women. It is commonly found in citizens of Japan, Turkey and Israel and is found less in citizens of the United States.

From my understanding of the reading, the disease comes and goes, but is a lifelong battle.

[totalmuggle]

heres story of a younger person you might want to read

http://www.faculty.fairfield.edu/fleitas/andy-g.html

[Amadeus]

Chloe, I am sorry to hear about this.
That disease must be pretty rare; I've never heard of it. I would love to do some reading on it though. (I want to be a surgeon one day :D. Someone who can be both doctor and mentor/counsellor :D).


This site seems good: http://www.behcets.com/

Again, I hope you will be alright, Chloe. Being diagnosed with an illness may be shocking, but it is not the end of the world. All the best :)

Edit:From what I've read, a lot of people who have the Behcet's disease seems to be diagnosed with Herpes at first because of the ulcers. People who have Behcet's disease seem to be able to lead a normal life (compared to diseases like Cancer, leukemia, etc.).

[thinkpink38]

Thats so sad you guys, I just want to say always have hope and keep on going, never stop. OMG, is it really that expensive TotalMuggle?! I thought I was scrollin to the end of the page!

Hope is the companion of power and the mother of success, For those of us who hope strongest have within us the gift of miracles.
--Sydney Bremer

[totalmuggle]

on Behcets.org there were some really good stories that you also might like. :p

and i have something to ask. has your doc put you on cyclosporine? thats an immune suppressant. it should relive your overactive immunesytem.(look up to my list of ransplant meds. most are IS)

here are the best betcets meds from what i saw.

CYCLOSPORINE
This is an immunesuppresant drug thought to work by blocking interlukin1 from macrophages on the cellular level. There are a number of reports and clinical trials of its effectiveness in Behcet's Disease. Improvements have been seen in ocular disease, mucotaneous symptoms, and various skin lesions. Some side effects reported include acute renal failure which often but not always responds to a stopping or reduction in dose, hirsuitism (facial hair) and nausea.(CYCLOSPORINE 100MG (MOD) CAPS 30 EA $152.99 )


AZATHIOPRINE
This drug is thought to work by exerting an anti-inflammatory effect by suppressing both cellular and humoral immune responses. In clinical trials it was demonstrated to be effective in maintaining visual acuity and having an effect on ulcers. Side effects can include sterility, immunosuppression(duh), liver disease and occurrence of other infections
AZATHIOPRINE 50MG TABLETS 60 EA $60.99

[totalmuggle]

here are some very cool ways to help get a cure!

Talk About It...
Thousands of people go undiagnosed every year. By talking about Behcet's Disease, you may help someone get the information they need to find the right diagnosis and treatment. Please share your knowledge of this disease (or the address of this site) with everyone you can.


Post Flyers...
You can download awareness flyers from this site (available soon) and post them in your local Supermarkets, Libraries, Community Centers, etc.


Support Important Legislation...
Click here to see the latest legislation that can help our cause and how you can support it through Congress.


Volunteer...
There are many ways you can volunteer to help the ABDA with our cause. Making phone calls, doing research, contacting doctors and coordinating fundraisers are just a few ways you can help. Please contact us using the on-line Contact form and select "I'd like to volunteer" in the reason area. or e-mail our Vice President, Cathy Fornabaio directly.


Donate...
The ABDA needs financial support to continue such important events as the National Conference. You can donate on-line or download a form to mail in later.


Collect Donations...
Collecting donations from friends, family, neighbors and co-workers will help us in our fight against Behcet's Disease. Speak to your employer about company matching, etc.


Walk!
We run a Bi-Annual Walk for Behcet's Disease in Long Island, New York. Even if you can't be there, collecting donations for the walk is a great way to raise money to support the fight against Behcet's Disease. Our next walk will be in 2004. We will post the date and agenda as soon as it is ready. in the mean time, please visit the recap of our very successful First Annual Walk.


Fundraising...
Organizing an event is a great way to raise awareness while raising money. Please visit our Fundraising Page or contact us if you are interested in coordinating a fundraiser in your area.

[Doggy]

Chloemnet, I’m giving you the biggest hug in the world right now. *hugs tightly* I’m really sorry to hear about your disease, and I wish you the best of luck.

[Chloe]

Amadeaus: (sp?) Yah, i was diagnosed with herpes... but also the doctor was an evil hag! mauahaha.... sorry had to say it... Penelope: Actually it tends to occur in women because of the progesterone levels more....:) ... And mostly in their 20's to thirties you get it... but it never goes away. Thank you all for your support, and all of the great sites! I enjoy reading your comments :grin:

[totalmuggle]

lifes charmed no matter what it throws at us. belive me i know that for sure.

[pasalita]

Totalmuggle brings up an interesting point regarding the costs of medicine for diseases. As such, to make this a more discussion friendly thread, here are a few start up questions:

How does your country deal with the rising costs of medical treatment?

What issues about medical care would you like your government to address? What suggestions would you make towards improving medical care?

Do you feel that there is a "hierarchy" of awareness and, thus, funding when it comes to diseases/disorders?

[totalmuggle]

the biggest problem that i can ever think of is iv's. when you have privet insurance they try to get you to do iv's at home cuz it cost less for them. and it might seem better for you to but its anything but. you have to go to the doctors office several times a day and if you have a picc in you cant drive! so someone has to drive you. plus when you in a hosp. you feel safer cuz theres a nurse who can help at moments notice. another problem is if you want to go to the hosp with out insurance. it will cost you about 2000-5000 a day plus about 800-900 hundred to insert a picc. and even more for a permentet port and cath.

[J3_]

All I know is that when it costs me $70 to get an X-ray... Well... Medical expenses are way too much.

I don't have any diseases like Behcets or anything (well that I know of, I mean, you can have cancer for years before it's detected, etc), but I can imagine how bad it must be... Just looking at that list of meds! And the prices! I almost had a heart attack... Lucky I didn't, how muhc would that have cost, huh? Lol.

_J

[Tane]

In Britain our financial support for health comes from the wages we earn through a NI (national insurance). The only problem is that you cannot see directly where all this money you contribute goes. Most hospitals are under funded and need a radical reshape in Britain but I think the only way that is going to happen is if the people are allowed to arrange there own insurance. The cost of treatment might be high in America but then I do not know what it is over in Britain. The difference is that Americans get better treatment because the hospitals seem to be able to afford the latest technological and pharmacology around today, in Britain we seem to be lagging behind. I would rather pay more and get better treatment than pay less and not get the best that can be offered to me.

The diseases that concern me the most are the super bugs that roam around British hospitals.

MRSA (methicillin-resistant Staphylococcus aureus) causes an estimated 2,000 deaths in UK hospitals each year, mainly by infecting surgical wounds.

Doctors have become increasingly alarmed by the emergence of resistant strains of MRSA known as VISAs and GISAs (Vancomycin or Glycopeptide resistant Staphylococcus aureus).

http://www.theage.com.au/articles/2003/12/28/1072546402461.html?from=storyrhs

2000 deaths and over 100,000 people contract these types of viruses; no doubt this figure will have increased by now. You hear an increase in reports of people going into hospital and staying in there for illnesses which they never had in the first place but contracted in there ward or on the operating table due to unclean environments. The talk about these viruses seems to have gone quiet but the problem still remains.

[totalmuggle]

well alot of hosp. here have rules to seperate mrsa people. some places even have wards only for people with mrsa to keep it from spreding.

[totalmuggle]

All I know is that when it costs me $70 to get an X-ray... Well... Medical expenses are way too much.

I don't have any diseases like Behcets or anything (well that I know of, I mean, you can have cancer for years before it's detected, etc), but I can imagine how bad it must be... Just looking at that list of meds! And the prices! I almost had a heart attack... Lucky I didn't, how muhc would that have cost, huh? Lol.

_J
well you have to get over the cost and see the goal. people with severe untreated cf will die at bout 1-5 years without treatment! at leats with treatments and my transplant i might live to be 20!

[Magda Quadle]

if you did have cf this is what your meds might sound like...hope you find this useful to an extent i hope im also not scaring you. im just telling you what you can expect.


While the medical expense for cf is high, it isn't quite as high as the whole list as printed. For example, all of the ranges of Pancrease and Ultrase are listed, and one doesn't use all of them. You might have one or two, but not all. My three year old has cf and we spend around $100/month on medicine when she's well, more when she's sick. We spend about $250 a month on nutritional suppliments and alternative health stuff not covered by insurance. Of course, Total Muggle is older and the older you get the more you use/need, so their cost would be higher.

Total Muggle, I noticed that you are listed near a transplant center. Have you been approved for a lung transplant? Do you have other organs that are involved that need transplanting as well?

Cloemnet, if you have cf and you've made it this long with out a diagnosis then you must be doing really well. All the best to you in getting a proper diagnosis. It's crucial that you get one as only then can you get the proper treatments.

Mags

[Chloe]

Mags: Thank you!
they now know that i have behcets disease though... this week im going to the doc, and i might have to be put on a tnf inhibitor... its usually used for people with leukemia, and if i am on it i cant go to school... its an injection

well you have to get over the cost and see the goal. people with severe untreated cf will die at bout 1-5 years without treatment! at leats with treatments and my transplant i might live to be 20!


I know a girl with cf- she's fourteen, and she has it severely but the doctors say she isnt going to die because of the disease...

[saz]

I hate the term Meidcal Disease, when not refering to an actual diease.

[totalmuggle]

While the medical expense for cf is high, it isn't quite as high as the whole list as printed. For example, all of the ranges of Pancrease and Ultrase are listed, and one doesn't use all of them. You might have one or two, but not all. My three year old has cf and we spend around $100/month on medicine when she's well, more when she's sick. We spend about $250 a month on nutritional suppliments and alternative health stuff not covered by insurance. Of course, Total Muggle is older and the older you get the more you use/need, so their cost would be higher.

Total Muggle, I noticed that you are listed near a transplant center. Have you been approved for a lung transplant? Do you have other organs that are involved that need transplanting as well?

Cloemnet, if you have cf and you've made it this long with out a diagnosis then you must be doing really well. All the best to you in getting a proper diagnosis. It's crucial that you get one as only then can you get the proper treatments.

Mags


well for us it cost about 1000-6000 a month!

[totalmuggle]

i only need double lungs


(plus can i add are you a member of www.mycysticfibrosis.com its great for recording med use and symptoms your cf coases you to give to your doc!

[totalmuggle]

because my pft's have stayed around 23% and im completly dependent on oxygen i do quilfy for a transplant. and also beause of test that were run its suggested that i wont live more than 2 years without a transplant( that is one of the main chosing ares). i think your very lucky to pay so little for your childs cf meds!


for me i pay just 100$ a day for tobi and 50$ a day for pulm.
i have been in the hosp. 69 days in 2003. i got set up for a transplant after my b.cipica (however you spell it) infection finished. ive went through 2 rounds of chemo and 1 round of radiation. i currently take about 60-80 pills a day ranging from immune suppresants for my liver to tobi for my lungs!

[totalmuggle]

While the medical expense for cf is high, it isn't quite as high as the whole list as printed. For example, all of the ranges of Pancrease and Ultrase are listed, and one doesn't use all of them. You might have one or two, but not all. My three year old has cf and we spend around $100/month on medicine when she's well, more when she's sick. We spend about $250 a month on nutritional suppliments and alternative health stuff not covered by insurance. Of course, Total Muggle is older and the older you get the more you use/need, so their cost would be higher.

Total Muggle, I noticed that you are listed near a transplant center. Have you been approved for a lung transplant? Do you have other organs that are involved that need transplanting as well?

Cloemnet, if you have cf and you've made it this long with out a diagnosis then you must be doing really well. All the best to you in getting a proper diagnosis. It's crucial that you get one as only then can you get the proper treatments.

Mags


if you read the end of my post you would know i was listed for lungs! ( i also had a liver transplant in may of 2001)

[Chloe]

Total muggle, could you edit yourposts please? no double-posting or triple-.... :)

[totalmuggle]

Total muggle, could you edit yourposts please? no double-posting or triple-.... :)
do you think i know how to? nope. but i will keep it in mind not to post to many posts at once! sorry! :upset:

[Tane]

I hope both Chloemnet and totalmuggle get the care and attention needed. I feel for you both.

It does annoy me when I hear about people with such illnesses having to pay for the medication or treatment required. The cost of these treatments is way to high for ill people to find. It is almost like a slap in the face and I hope it is a non-profitable cost but the pharmacy companies seem too rich for it not to be profitable. They should cut costs and should be paid through a national tax system.

[totalmuggle]

if only things were that easy! but nope they cant be and thats the way it is. theres no use paying for a dying person. its completly useless. so they simply dont do it. ive always thought its a way for a dying person to leave an impact. if we pay then somebody gets our money. it has to go through one way or another. i do understand that its very hard to pay for things but i also know i dont want to leave this world without any impact( all my money will be donated to the cystic fibrosis foundation when i die) and i also wish that someday ytaxes wont be going to dying people but to people who have a fighting chance at life. i hate death but not having an impact on anything but pockets and hearts is painful. we cant leave anyhting in the world. we come with nothing and we take nothin. its a cycle as i understand it. th world goes around and everyone in the cycle is like a rock by the pond. i used to wish it would all change and i couldent understand why people were working so hard to prolong life but now i do understand it. its making an important impact in the world, leaving something behind whn we leave. one of the second strongest things i belive in is in friendships are stronger than death. we will always see eachother perhaps not at the same times but at the apponted time of ourdeath!

[Magda Quadle]

Total Muggle, I'm sorry if I implied that you don't pay much for your daily meds. What I meant was that the list was a bit inaccurate as it listed many different kinds/strengths of enzymes when most cf patients only take one or two. Yes, the other meds are costly and they do add up quickly. The only reason we don't pay as much as you is most likely because my daughter is only three and has not had the time to have the lung involvement that you have. We've not had to do tobi yet as her nastiest bug to date has been staph. But the $40. copay for liquid cipro to treat it was one of those little surprises cf throws at us.

We're not a member of the site you mentioned. I'll check it out. I am a member of several other list serves that talk are for older patients of cf and parents dealing with cf in their children.

To edit your posts...

Look at your post as it appears on the board. There is a little button toward the bottom of the frame that says "Edit." Click on it and it will bring up a window with your original message in it. Finish typing what you forgot to say; or add more if you were the last person to post. Then you can click on save changes and it will repost your message to the list. Maybe that's as clear as mud!!! :p

Mags

[Tane]

I don't know I mean is there any difference between the health service and the education service. People are expected to pay for education so I guess they should pay the same for the health service due to the exact same reason really. I mean equipment is needed and people do need to live.

I can understand your predicaments but as you stated life is not that easy.

[totalmuggle]

Total Muggle, I'm sorry if I implied that you don't pay much for your daily meds. What I meant was that the list was a bit inaccurate as it listed many different kinds/strengths of enzymes when most cf patients only take one or two. Yes, the other meds are costly and they do add up quickly. The only reason we don't pay as much as you is most likely because my daughter is only three and has not had the time to have the lung involvement that you have. We've not had to do tobi yet as her nastiest bug to date has been staph. But the $40. copay for liquid cipro to treat it was one of those little surprises cf throws at us.

We're not a member of the site you mentioned. I'll check it out. I am a member of several other list serves that talk are for older patients of cf and parents dealing with cf in their children.

To edit your posts...

Look at your post as it appears on the board. There is a little button toward the bottom of the frame that says "Edit." Click on it and it will bring up a window with your original message in it. Finish typing what you forgot to say; or add more if you were the last person to post. Then you can click on save changes and it will repost your message to the list. Maybe that's as clear as mud!!! :p

Mags



the list is a bit off. but it also doesnt list all cf meds. the list was taken from the cff site for ordering meds. ( i also want to add that www.mycysticfibrosis.com is to trak your childs or your own cf so you can show it to yuor doc. i really like it because i cant print it out dayly when im in the hosp. and post it on my door so nobody comes in asking things about my meds or my "bathroom reasults"

[Chloe]

right now i dont know the meds names that im on, but im on three- one of them is a steroid, prednisone... and i have yet to start to other two. But like i stated already, i may have to be put on a tnf inhibitor, which will shut down large portions of my immune system and i wont be able to attend school.

[totalmuggle]

right now i dont know the meds names that im on, but im on three- one of them is a steroid, prednisone... and i have yet to start to other two. But like i stated already, i may have to be put on a tnf inhibitor, which will shut down large portions of my immune system and i wont be able to attend school.

sorry to hear that! i hate the whole no scholla nd where a mask deal. so i hope you dont have to get on those meds. lol why doesnt your doc try somthing a little less strong?

[Chloe]

Oh! Right now i am on methatrexate and folic acid... it's small pills at least. and i am taking bromaleine, from pineapple enzymes

[totalmuggle]

i want you all to read the end of my post and tell me what you think!

[Magda Quadle]

i want you all to read the end of my post and tell me what you think!


I've heard it before... One of the mother's on another list serve uses it as her siggy. It's nice, in a sad sort of way...

Mags

[totalmuggle]

I've heard it before... One of the mother's on another list serve uses it as her siggy. It's nice, in a sad sort of way...

Mags
i was taling about the RECIVED LUNGS AT MAYO CLINIC AZ. PART!

[totalmuggle]

right now im on 16 different iv pumps
and i dont know whats exacly in all of them
im still taking tobi and creon

[Chloe]

oh yay! good job! No one get on her case cuz she double posted, either :-b

:lol: Good for you! Yay! im so happy!

[Bee]

Here in Canada mecial care isn't privatized. You don't have to pay for a lot of medicines and x-rays, hospital visits, etc. are free. It's a good system, I think!

I've never heard of Behcet's disease until now... it's a good thing that people on MuggleNet are raising awareness about different diseases like Behcet's and CF... you can never know too much! I guess I'm lucky not to have any serious diseases (all I have is anemia, which just means I black out for a minute when I stand up, and I can't lift anything very well) but I think that when you don't have anything serious happening to you, you can easily forget that it's happening to someone else.

[Magda Quadle]

i was taling about the RECIVED LUNGS AT MAYO CLINIC AZ. PART!

AAAAAArRRRRRRRRRRRRRGGGGGGGGGG!!!! My bad.... I was being hounded about a math problem that I refused to answer from my 8 year old. :blush:

:tu: I am very happy that you've received your transplant. Here's to praying :angel: that all goes well for you and that you'll be up and running in no time!!


Mags

[totalmuggle]

AAAAAArRRRRRRRRRRRRRGGGGGGGGGG!!!! My bad.... I was being hounded about a math problem that I refused to answer from my 8 year old. :blush:

:tu: I am very happy that you've received your transplant. Here's to praying :angel: that all goes well for you and that you'll be up and running in no time!!


Mags
im doing pretty darn good! im sure that im about the first kid in this place to have re-started my constant chatting 2 days after a lung transplant!

[totalmuggle]

i think what was said about " when nothings wrong with you you dont notice that there are things wrong with others" its very true. and can i tell you something IM TRILLED TO BE BACK ON COS!

[Chloe]

:lol: Yay! I'm so happy!
*runs off to put something happy about kittens in her signature*

[Chloe]

Now i am taking Enbrol(SP?), a cancer medicine. It is an injection, but i am doing pretty good with it now. i just cant take tub baths anymore because i can get infections easily.