tag:blogger.com,1999:blog-4891890415105870203.post9212311084140767501..comments2023-12-24T03:33:10.017-08:00Comments on 2nd chance @ life?: Big health updateAnonymoushttp://www.blogger.com/profile/14461907384160027436noreply@blogger.comBlogger9125tag:blogger.com,1999:blog-4891890415105870203.post-45581332976035975132011-02-22T12:12:42.684-08:002011-02-22T12:12:42.684-08:00Hey xx just a little thing about ur sinisus's ...Hey xx just a little thing about ur sinisus's xx i get really bad sinsitus too, i get alot of what of face ache amd my nose gets really dry. every morning i take a tesco cold relief tablet, 2 if its really bad and then i have the cold n flu max strength for bad days xx but they do really help xx i wudn't survive without them!! xx not sure if u tried them, but i just thought i'd mention it xx might relief a few of ur symptoms xxJoey Hugheshttps://www.blogger.com/profile/15975917119600336930noreply@blogger.comtag:blogger.com,1999:blog-4891890415105870203.post-82300392301687100762011-02-17T15:09:42.945-08:002011-02-17T15:09:42.945-08:00hi kirstie i no how your feeling i have cf am near...hi kirstie i no how your feeling i have cf am nearly 31 and i feel just like u am in hospial at the minute been in 2 weeks tomorrow and i dont feel any better ive been on oxgyen now about 5 months i never wanted it be on this and am waiting for a transplant ive been waiting 2 and a half years now am getting fed up as am getting worse i just wish i would get a call. i also have antibodies aswell so it makes it harder.i also have 2 children who are 12 and 7 they are both fine so i need to be here for them am finding hard now i get tired easy and i carnt do much.well take care and wish you all the best for transplantAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-4891890415105870203.post-49557143873955345372011-02-14T07:52:40.559-08:002011-02-14T07:52:40.559-08:00Dear Kirsty,
I’m sorry things are not going as pl...Dear Kirsty,<br /><br />I’m sorry things are not going as planned and that your chest is not behaving itself. I fully recall the non-stop coughing and sickness and exhaustion that follows.<br /><br />Is there no way, your physiotherapists at the hospital could do some percussion physiotherapy for you say half hour in the morning and again in the afternoon? I recall Gemma on the forum had a home physiotherapist, is this something you could now ask for, especially as you are about to be assessed for transplant. I would ask you team about this and/or you’re GP and put in a strong argument, alternatively I think you should ask for The Vest. The vest is minimal work on your part the vest does the hard work and you just sit there with it on and when it stops vibrating you huff switch it back on huff some more and then a nice cough, bringing up loads especially from lower down and what has been stuck in airways. I had the vest for about a year before my transplant as I was doing up to 5 hours per day physiotherapy to shift the constant build up. I was able to reduce the amount of hours I spent doing physio and I had more energy at the end of the day and more quality time with my husband. You really need to push for these things. I had to fill in a 22 page document to get funding from my local authority for the vest, but it was worth it in the end.<br /><br />Wishing you all the very best, if you need any advice re paperwork on the vest then please get in touch at<br /><br />josephine.josephine@fsmail.net<br /><br />Take care Josie xJosienoreply@blogger.comtag:blogger.com,1999:blog-4891890415105870203.post-14767246439231579972011-02-14T00:53:19.697-08:002011-02-14T00:53:19.697-08:00Hiya,
Brilliant blog entry. People shy away from ...Hiya,<br /><br />Brilliant blog entry. People shy away from telling people the nasties of CF and I think people need to know!!<br /><br />I have terrible sinuses and I'm on 3 different nasal sprays. Nasonex is a steroid one which is brilliant, otrivine (you can also buy this over the counter but I've got it on prescription) and just normal saline drops. They're all really helpful! Oxygen specs give me terrible nose bleeds and the saline drops counteract this by rehydrating the gunk. <br /><br />Sending *hugs*<br /><br />Gem xxxGemhttps://www.blogger.com/profile/02091407226188047122noreply@blogger.comtag:blogger.com,1999:blog-4891890415105870203.post-81977366559472786022011-02-13T11:30:00.598-08:002011-02-13T11:30:00.598-08:00Hi Kirstie,
I love your blog - it's a real s...Hi Kirstie, <br /><br />I love your blog - it's a real skill to convey exactly what you are feeling, the ups and the downs and especially the downs in all their gruesome glory ;). It's the side of CF that isn't talked about in leaflets or magazines but it's what makes it really hard for other people to understand what it's like to have CF and why living with it can be so relentless and unforgiving. It's also the side that's so important for raising awareness about cf and transplantation. So thanks for your honesty, determination and passion. <br /><br />Sometimes drugs don't work and no one knows why and sometimes they do and at other times things can get better when nothing seems to have changed. I hope things will get better for you soon. Keep positive and keep believing in yourself xxHannahhttps://www.blogger.com/profile/03273554814654428698noreply@blogger.comtag:blogger.com,1999:blog-4891890415105870203.post-23197927816726134042011-02-13T11:15:48.081-08:002011-02-13T11:15:48.081-08:00Huge hugs. Hope the nose doc helps... Your blog is...Huge hugs. Hope the nose doc helps... Your blog is so open and honest you will helping so many other people with cf and raise awaraeness of this god awful disease, you should be proud of yourself. XxxAnonymoushttps://www.blogger.com/profile/08288172422712024838noreply@blogger.comtag:blogger.com,1999:blog-4891890415105870203.post-14200968951425961192011-02-13T10:59:38.888-08:002011-02-13T10:59:38.888-08:00Oh Kirstie
I thought I knew about CF but your gra...Oh Kirstie<br /><br />I thought I knew about CF but your graphic description has put it in perspective for me. I don't know how you manage, but you must continue, be strong, until you get your call. <br /><br />From all I have read about you are motivated, determined and don't accept failure. You will succeed.<br /><br />As well as the physical effects of CF you share the emotional side in your blog. What I hear from you is loneliness and fear. Doctors can treat the physical symptoms but how do you treat the emotional side?. I can't tell you what to do, but you probably know the answers anyway.<br /><br />Take care<br /><br />Dave<br /><br />PS Not so keen on the green eyeshadow!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4891890415105870203.post-83411208841836217502011-02-13T05:49:25.250-08:002011-02-13T05:49:25.250-08:00hey :)
i have posted a few comments previously. my...hey :)<br />i have posted a few comments previously. my boyfriend was diagnosed with CF as a child and was once told that if he didnt have a heart and lung transplant, that he would die (this was age 14).he is celebrating his 21st birthday in march this year and although we've only been together for 10 months, we've had long talks about CF and what it means for him and for us. luckily he has had over 70% lung capacity for over 5 years and he's definitely a fighter! <br />he is looked after by visits to the royal brompton every 3 months, which ive been able to go with him to a few times, and for someone who doesnt suffer from CF, its a real eye opener.<br />my boyfriend rarely talks about the tougher times from his past..its usual his mum that talks to me about it, but its very interesting for me to read it from another persons perspective.<br />i honestly wish you all the luck in the world and pray that you get the second chance at life that you and all over CF sufferers deserve<br /><br />c xxAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-4891890415105870203.post-43645210997019367782011-02-13T04:20:16.166-08:002011-02-13T04:20:16.166-08:00Hey lovely!!
I had similar problems before I got ...Hey lovely!!<br /><br />I had similar problems before I got the transplant too, I didn't become resistant to antibiotics but I was highly allergic to a good few and they had to look at some not so common antibiotics for me. Maybe that's something they should look into, different and less known IV's. When they put me on Tementin the first few times I felt a massive difference.<br /><br />Also I had the nose thing too, I had to 'clear it out' as I called it at least three times a day and always had to use numerous tissues. Not nice but needs must and all that. Hope the nose doc can help though!!<br /><br />Love V xxTorihttps://www.blogger.com/profile/05972768005177075575noreply@blogger.com