Guest guest Posted January 15, 2004 Report Share Posted January 15, 2004 Bev, I downloaded some stuff from a Australian Government site (don't know how I actually found it) that has the conditions of going onto Pulmozyme. Eilish has 3 out of 4 which are FEV1 must be over 40%, must have had 3 infections in 12 months (she;s had 2 in 6 weeks), and must be over 5. So I printed it of and will send along with it. He will ring the Dr. on Monday and if nothing happens he will ask for a meeting. (Australia) had enough of this I have had enough of Cf. Eilish has a wet cough back. She has been of IV's 2 days only and wham its here. I truly think its coming from her sinuses. It starts the same way, husky voice then the cough. When I heard it last night I felt like screaming. I just don't know what else to do. 4 weeks of IV's in 9 weeks is heaps and the minute it ********stops its back. I am so angry. I don't know who to be angry with so I am angry with the disease. Any suggestions for sinuses? rang the cf centre and they said to put her on Augmentin. I am not wanting to do this. Although I absolutely trust her Dr. I feel she doesn't need more antibiotics she needs something to thin down the mucus to move it. So I have given her inhaled Ventolin to break it up. I've also spray saline up her nose. At this stage I am open for suggestions. said on Monday he will ring them back (I have had enough) and tell them to do something. Pulmozyme is not on the government listing her so the hsp. has to pay $1000.00 per month for it. They give it out sparingly. But is on the war path for at least a trial of it. Sorry about the moaning but I have had it . Well better go 'bash' her now. She's lucky I love her so much LOL! (Australia) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2004 Report Share Posted January 15, 2004 GREAT. It will save the government money in the long time BUT MORE IMPORT TO US IS THAT EILISH WILL FEEL BETTER FOR LONGER PERIODS AND HER LUNGS WILL NOT BE BEING IMPACKED WITH THE MUSCUS LININGS....THAT'S WHERE THOSE DAMN BUGS GET IN & START ACTING LIKE IT IS HOME TO THEM..................... tHERE ARE SO MANY STUDIES & PAPERS ON PULMOZYME. tHE rules aren't " CUT & DRIED " --THOSE ARE THE general GUIDELINES.... my WAS PUT ON IT AS A WELL PATIENT. NO COUGH , NEVER BEEN IN HOSPITAL IN HER LIFE..........NO INFECTIONS. .REALLY AT 15 YEARS OLD.......... SHE IS STILL THAT WAY. 6FT TALL TOO.sHE WAS IN HOSPITAL OCTOBER BEFORE LAST WITH HER APPENDIX BURSTING. NOTHING TO DO WITH CF.... oh my gosh, I am so sorry about the caps. I just looked up !! I hate reading all caps. -sorry.You do know I hunt & peck with two fingers. I get on a roll ---never looking up ...... ANYWAY----.She should be on it. Someone on line wanted to send you a box of it she had in her refri . She didn't know how to send. But you really need your doc to o.k. it . It can be shipped we do it all the time. JUST IN CASE SOMEONE WANTS TO & DOC says O.K. IT ; Just freeze it , put in zip lock baggie, then a cooler chest, (we have ones -small -made for that. (we get them to us that way)-then we put a frozen cool pack,- same as one would on a picnic to keep items cold. Then in a brown box & ship. Paper is also a great insulator .. better than bubbles. We have never had any ruin , etc, We were the first pharmacy ( by 1 day hehe) to have the pulmozyme in the world. Then by end of month there were 8 of us for about a year across America... now anyone who can buy up front & can stock it , sells it. I wish it would be in Australia & everywhere. I have rattled enough . I pray she is doing better BUT. also want to get ok for you all & that will help all Australians too. LOVE & HUGS< GrandmomBEV had enough of this I have had enough of Cf. Eilish has a wet cough back. She has been of IV's 2 days only and wham its here. I truly think its coming from her sinuses. It starts the same way, husky voice then the cough. When I heard it last night I felt like screaming. I just don't know what else to do. 4 weeks of IV's in 9 weeks is heaps and the minute it ********stops its back. I am so angry. I don't know who to be angry with so I am angry with the disease. Any suggestions for sinuses? rang the cf centre and they said to put her on Augmentin. I am not wanting to do this. Although I absolutely trust her Dr. I feel she doesn't need more antibiotics she needs something to thin down the mucus to move it. So I have given her inhaled Ventolin to break it up. I've also spray saline up her nose. At this stage I am open for suggestions. said on Monday he will ring them back (I have had enough) and tell them to do something. Pulmozyme is not on the government listing her so the hsp. has to pay $1000.00 per month for it. They give it out sparingly. But is on the war path for at least a trial of it. Sorry about the moaning but I have had it . Well better go 'bash' her now. She's lucky I love her so much LOL! (Australia) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2004 Report Share Posted February 25, 2004 You dear sweet mommy. I so wish I could be there & help you. Dog gone. It is just too far for even a weekend. Another gal asked if she could help She was writing you on line, wanted you to write her that sounds great with the girls beds. Maybe the income tax will arrive for too. Have you spoken to Jenn Uphoff again . She might know plenty of folks & contacts there. Maybe you could give her a call. Just asking her if she knew of some discount shops, etc. She has been all over that place for years too. They lived out by the prison in a house just outside it .Her day was a warden.soooo, I bet she might know or have 5-7 beds laying around, She has 7 little ones .Cant hurt to ask .She said for you to call her if she could help & she means it. She wont pry though , she is shy in that way. That is very nice that they will help with the EASTER baskets , etc. The new outfits will be nice to have for church & dress up too. The baskets will be a change , but it will be nice too. .....I will send them a card with " dollar store " or " Big Lots " $$ in them .That way they can get some wee thing or maybe even socks.......to panties, -hehe How about you......Are they going to get you an Easter Bonnet too :)? has your dh sent any of your clothes to you. Maybe your daughter -in law could get something you tell her too & just mail it to you .It would cost much to mail .. I just saw a post .I think it was aunt B .she didn't sign it . asking about the other beds .futon, etc. I wonder if someone knows of another .or even dressers. By the way, check out what the re might have come in at the thrift store or the salvation army store. What the cheapest $$ might be . .... Gee I wonder if unpainted would be less cost too. i used those for my boys rooms when they were little . We were in the navy & all the rooms were so small That was all I could get in them with 5 wee ones . You know how that is :) Well I will let you go & answer some others here . It is great for you to have the computer now. Is it working alright? I hope so I Love ya! LOVE & HUGS, GRDMBEV Bev Hi I found today that I am only getting some mail not all so I had to goto the website to read.Today has been busy clearing out the laundry room as if I will ever be finished with dirty laundry.The church said they have two families with 2 beds so the girls should be covered by that.The pastor told me to write down the kids sizes as there is someone who wants to buy the kids an easter outfit.That will be nice as we usually don't do easter like that.The whole Easter Bunny thing is too commercial so I make baskets with things like a bible or bible book for the younger ones and pencils etc(not candy ) just items relating to what the day represents to us.I am still trying to see if there is an emergency fund at DSS to cover beds etc.I am still waiting to hear back from them.I am calling the red cross to see if they can help.I am asking every where I can think as someone will say Yes eventually.Love BeckyB. Quote Link to comment Share on other sites More sharing options...
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