General Message Board

• Hey everyone!
  I'm Cavan and I've got CF. I'm backpacking around the world starting in less than two weeks. I will be heading to NZ at the end of August. I may have an issue with restocking my medication when I get to NZ (may have to be shipped from UK). Has anyone done this before? As I can't carry 10 months supply with me!!
  
  My email is cavanarrowsmith@googlemail.com and travel blog is www.cavanarrowsmith.co.uk

  Cavan Arrowsmith (14-02-2010)

• Hi, my name is Trudy and I am 35 years old, I've got CF and had a double lung transplant 12 years ago. I am doing great and absolutely loving every minute life gives me. If any body wants to ask questions of someone who has got CF and has had a transplant I am more than happy to chat and answer questions, no question is a stupid question. I can be reached on email trudes2898@yahoo.co.nz

  Trudy Hannan (02-02-2010)

• hi all.i have a 2yr old boy Austin who has cf and would like to hear from anyone around my district of Levin that have any children around his age.mainly to help with some ideas around eating as we have just spent 1 week in Palmerston North hospital with a suffecent amount of weight loss for my young man.any ideas from anyone would be greatly appreciated.
  my email address is austyburger@hotmail.com
  Thanks Linda
  

  Linda Seng (30-01-2010)

• To Kate Thanks for letting me know that, tell him i said hi if you talk to him and wish him all the best. He'd 2 lovely children. Angela x

  Angela (30-01-2010)

• Angela - Paul is fit and well and enjoying life with his new lungs!
  Regards Kate Russell, CEO

  Kate (29-01-2010)

• Hi Jo - the contact for the Auckland Branch is Helen Geary 09 636 0351 - give her a call and she will put you in touch with other Mums in your area

  Kate Russell - CEO (29-01-2010)

• Hi there was just reading your message board, as i was watching a television programme 2 nights ago, about a man of 43 who had a lung transplant, he had cystic fibrosis(cf). I was just wondering if anyone knew how he was doing i can't remember his 2nd name his first name was Paul and he was from New Zealand. Thank you.
  
  I also have cf i am 45 years of age in April (this year 2010), i am also diabetic i keep very well on the whole!. I live in Belfast, Northern Ireland.
  
  Thanks a lot for your help if anyone knows who im talking about much appreciated.
  
  Angela

  Angela (29-01-2010)

• Hi, my name is Jo Ringer. Myself and my family have just moved to Auckland from the UK. Our little boy Jack has CF, he is eight. We also have twin daughters Kate and Ellen, they are twelve(they don't have CF). It would be nice to meet some other CF mums in the North Shore area.
  So far everyone in the CF team at Starship have been fantastic and really made us welcome. Thank you!

  Joanne Ringer (09-01-2010)

• Hi Helena - my name is Stephanie and I have a 3 year old boy with CF. I don't live on the North Shore, but would love to catch up with you if you want too? I had lunch with 2 other mum's just before xmas, one lives over the shore and another out west and are looking at making it more permanent and would love to have other mum's join us. Also, we have just started up a fantastic Facebook network that I am finding a huge help to me, just being able to connect with others in the same situation as me and also meeting some fantastic and inspiring adults with CF. Email me if you want to catch up on bpauto@xtra.co.nz or add me if you are on facebook.

  Stephanie Payne (30-12-2009)

• Hi, My name is Helena and I lived in Auckland since 1999. I have 2 children that were diagnosed with CF before we arrived in New Zealand. I am wondering if there is a family that lives on the North Shore, Auckland, that has recently had a child diagnosed with CF, that would like to meet up. I remember the days following the diagnosis of my son Frazer, and I wished I could have met up with a parent that understood

  Helena Donaldson (16-11-2009)

• Hi Jeanette, I am a CF patient who had a double lung transplant almost twelve years ago, I do understand where the transplant team is coming from, the whole point of having a transplant is to be able to have a second chance at life, to get out there and lead a normal life. I was back working full time six months after my transplant and its the best thing you could ever do. so perhaps your daughter might consider getting stuck into her second chance, get a job and experience everything there is to living with a some what normal lung function. Having a job and starting a normal life is all part of it so why wait. I understand that she has been sick for the last 5-6 years, but she isnt sick anymore, so why go for a sickness benefit when you are no longer sick? go for it and enjoy your new life, its amazing!

  Trudy Hannan (06-09-2009)

• My daughter had a lung transplant 13 months ago - she is doing really well - still a bit of ongoing follow up clinic appointments etc - WE don't go to cf clinic anymore and are under the transplant team. It is time for her WINZ review and the transplant team has refused to sign her disbility review form for her sickness benefit which I find is extraordinary. Al she got was a phone call and the nurse told her to get a job Hellow this kid has never been able to work or even finish her education - been really sick for the last 5-6 years and all of a sudden your off the books so to speak. Any suggestions, we are still getting over the miracle of her new life.

  Jeanette Glynan (25-08-2009)

• Hello Jenny
  
  Please email all your details to us at kate@cfnz.org.nz and we will put you our mailing list. Kate

  Kate Russell (24-08-2009)

• I have just had a great niece diagnosed with cf and I would like to know how i can join up wiith the association so I can keep up with news, medical stuff and ways to support.

  Jenny P (23-08-2009)

• Hello All
  
  I am Alex Mckays hockey coach and would like to say how incredibly proud I am of him. I did not know that he suffered with this illness as it isn't apparent in his nature or attitude to life. He captains the senior hockey team also and I am so pleased he has achieved so much.
  
  For all those suffers out there I pray and hope that you are doing ok and for every bad day you have at lease one good day in return. My thoughts are with you all.
  
  Congratulations Alex - see you at training.
  

  Emma Leigh Edwards - Sports Facilities Manager at Sacred Heart College (11-06-2009)

• Hi
  i would like info about people with CF and horse riding. My daughter is 5 weeks old and has just been diagnosed with CF. I have horses and one day she will prob ride them as well but in the mean time i want to know about me be around horses then picking her up etc. I have been reading about people with CF and not be able to muck out horse stables
  one article said "The downside though is the expense, and also you must NOT muck out the horses. The hay tends to be full of Aspergillus and Psuedomonas Auerginosa (sp) bacteria." is the bacteria in the horse poo or in the hay?? any info about this would be great. I dont keep my horses in stables but i do pick up their poos from the paddock.
  thanks
  mego46@hotmail.com or 034657511

  Hannah Hutcheson (08-06-2009)

• Hello Cara
  Health care in NZ IS free but I am not sure that would apply to you unless you ad citizenship or at least residency. We have a child disability allowance payable but again this is determined by your citizenship status.You do have to pay for GP visits but SOME offer free visits for under 5's - it depends on where you live and which PHO (primary Healthcare organisation) you come under. No we do not have carer payments in NZ but those families in high need of respite and'/ or carer support qualify for some carer support hours paid for by the government. If you have any other questions, please email me direct on kate@cfnz.org.nz and I will put you in touch with one of our Social Workers.

  Kate Russell CEO (08-06-2009)

• Hi there, we are looking at moving to new zealand (from scotland) and are looking for more info on CF care in NZ. our daughter is only 5mths old at the moment and has had no health problems so far. I would just like to know what kind of care you get, do you have to pay for any of it? Over here all healthcare if free and we do not need to pay for prescriptions or visits to the GP. Also we receive something called Disability Living Allowance on my daughters behalf which is money paid to those who may require extra care. i also receive carers allowance which is an additional payment because I am basically my daughters carer. Is there any such thing in NZ?(these things are paid irrespective of your income and working status). We are just trying to balance everything up before we start to make any decisions as obviously my daughter comes first. I would be grateful for any information you can provide. Many Thanks Cara

  Cara (07-06-2009)

• Hi There everyone, I am looking for information about CF adult care in NZ. My 20 year old daughter is travelling in your country and has hit a bad patch in her health. Wondering if anyone knows of a adult CF clinic/centre around the Christchurch area? Many Thanks.

  Sally L Smith (17-04-2009)

• Hi Linda
  Are you in touch with the Central Districts Branch? They are your best source of information about people in your area. Call us on 0800 651122 for contact details. Kate Russell CEO

  Kate Russell (23-03-2009)

• hi everyone i posted a comment early in the year asking if there is anyone else in the Levin area that has cf still hoping to hear from anyone.my little man is now 15 months old and still doing fantastically well.i have a new email address linjae1@hotmail.com look forward to some emails :)

  linda (23-03-2009)

• Hi, my name is Jonathan Fowler. I'm 26 with CF from Taranaki. I had a doubble lung transplant on the 19th of December 2008 and I'm doing really well. Life is so amazing!!
  
  Just want to say a HUGE thank you to the onging support from the CF association in NZ and Taranaki over the years and especially in recent times. The support has been awesome!
  
  I want to do all I can to help spread awareness about CF and transplantation so anyone that wants any info at all or even just to shoot the breeze is welcome to contact me. 0273031086 thechurchofexportgold@hotmail.com jono2specialtreats.co.nz.
  
  Also I will be at every national conference from now on that I can get to so anyone is more than welcome to come up to me and ask me anything.
  
  Thanks CFNZ!
  Jono

  Jono Fowler (10-03-2009)

• Greetings from the United States. I have a 2 1/2 year old daughter with CF. I have done a lot of research and found that your country seems to be further advanced in CF research then mine. I was wondering if anyone would be willing to offer advice about living with CF in New Zealand. I am actually considering moving to NZ if it would provide better care and research for my daughter. Please email me at lisa@ribbonzncurlz.com with ANY information! I would love to hear from anyone, thank you for your time!

  Lisa Ritter (10-03-2009)

• Hi everyone I'm karen and have a nearly 2 year old daughter with cf. She was diagnosed at 6 weeks of age and is doing really well. She gets wonderful care from the nurses and doctors at Tauranga hospital and they are always there for my many questions.

  Karen (24-02-2009)

• hi my name is Janet Camplin I have an 17 year old son with cf and am chairperson Otago please contact me either by e-mail or my home ph no is 03 4710170 mobile 0273216297 i would love to go and visit and introduce others as we go look forward to email or call.
  

  Janet Camplin (16-01-2009)

• hi there
  my name is linda and i have a 13 month old boy that got diagnoised with c.f when he was 3 months old :( but we deal with it now but would to know if there is anyone from Levin that has or has a family member with c.f that would like to drop us a line.we are very lucky as we have a very healthy little man.my email address is linjae@hotmail.com

  linda (15-01-2009)

• Hi Erin
  Your friend should get in touch with us - are they a member of our association yet? We have great field workers who can help her and put her in touch with people in her area. Get her to call us on 0800 651122 Kate

  Kate Russell CEO (12-01-2009)

• Hi there
  my best friends daughter has C.F and she is having a hard time dealing with it i try to be there as much as i can but living 3 hrs away it can make it hard,She lives in milton,south otago.i was just wondering if anyone would be willing to meet her for a chat i think she feels like she is alone.her daughter is 16 mths.
  thanks
  Erin

  erin kinraid (08-01-2009)

• Hello everyone, my name is Jessica Paterson myself and my husband have a beautiful daughter Grace who has c.f, we would just like to put our thanks out there to everyone that has helped us in gracies 16 months she is so clever and extremley happy all her doctors are amazing and if it wasnt for these people we dont think grace and other c.f people would be doing so well it gives us a lot of hope. thankyou

  jessica paterson (24-11-2008)