tag:blogger.com,1999:blog-921971826505373965.post1816155637876054048..comments2023-09-26T04:50:53.501-04:00Comments on Live Laugh Lungs: My Wilting MindLive Laugh Lungshttp://www.blogger.com/profile/14794653870687841789noreply@blogger.comBlogger12125tag:blogger.com,1999:blog-921971826505373965.post-70965791991197348202012-08-03T10:32:49.751-04:002012-08-03T10:32:49.751-04:00Honestly, there is a huge problem with the homeles...Honestly, there is a huge problem with the homeless and mental health. It's quite sad really. You feel trapped between being scared and wanting to help them.<br />Glad you're reading! How are you feeling?Live Laugh Lungshttps://www.blogger.com/profile/14794653870687841789noreply@blogger.comtag:blogger.com,1999:blog-921971826505373965.post-51501580619024902762012-08-02T11:05:21.874-04:002012-08-02T11:05:21.874-04:00Anytime, Chick... I'm glad we found each othe...Anytime, Chick... I'm glad we found each other too... And sorry about the length. (OK, not so much sorry... It's what I do... I've already got a reputation among our Organ Procurement Organizations and medical folks that, when they send me a 5-word simple question, they expect 8-10 paragraphs back...) Love, SteveBreathinStevenhttps://www.blogger.com/profile/13425167024998690437noreply@blogger.comtag:blogger.com,1999:blog-921971826505373965.post-5510192495695395312012-08-01T22:47:24.395-04:002012-08-01T22:47:24.395-04:00I can't believe that man flick his cigarette a...I can't believe that man flick his cigarette at your direction?? holy smokes! what is wrong with people these days???<br /><br />I am a new reader. I like your sense of humour! :D I can totally relate with the need to breathe better. I have a lung disease called pulmonary hypertension!LChttp://phenomenalyouthcanada.blogspot.ca/noreply@blogger.comtag:blogger.com,1999:blog-921971826505373965.post-44280694776277026532012-08-01T21:51:10.942-04:002012-08-01T21:51:10.942-04:00Steve, I love hearing from you. You are full of gr...Steve, I love hearing from you. You are full of great advice and you are just what I need sometimes. Thank you for everything you said. <br />I know how amazing Toronto is and what a leader they are. I feel 100% confident that I'm in the right place. <br />I know the compliance thing is bang on. We know a life full of nothing else. It would be too weird to not have a mountain of pills to take every day. <br />Please know how grateful I am that you found me, or I found you - I can't remember which. Thanks for paying attention to my life and being so inspirational.Live Laugh Lungshttps://www.blogger.com/profile/14794653870687841789noreply@blogger.comtag:blogger.com,1999:blog-921971826505373965.post-31372745222176882462012-08-01T14:25:58.707-04:002012-08-01T14:25:58.707-04:00(Beginning of part two – character limitations…)
...(Beginning of part two – character limitations…)<br /><br />And – you are not only invincible with crazy, dream inspired, martial arts skills – you are a CF warrior. Your life has been surrounded by medical situations. You know hospitals, you speak their language. You’ve dealt with medications, routines, silly-$hit-you-know-you-gotta-do – compliance – all of your life. That makes this transplant stuff and all of the stuff that comes afterwards natural to you… Too many patients have not lived this life… They’re, like, “I gotta take how many pills?!?! – HOW often?!?! Oh, I simply cannot do that… Do they have it in a liquid form?” (Seriously…) They feel good – they stop their drugs – they stop monitoring. They die. That’s not your MO.<br /><br />Many of us CF patients adapt to this situation pretty well – we’re already accustomed to this life… Imagine being strapped to all this crazy stuff, which you’re already dealing with and have all of your life – but being able to BREATHE, and run and play and live!?!? We do well because we know how to be compliant – we know that things that seem unnecessary really ARE necessary, and we know how to watch and care for ourselves…<br /><br />And wear your damn oxygen!!! Right now, living without it doesn’t prove your strength – it’s potentially taxing your heart and your brain. Tuck the vanity away until you never again need oxygen – and wear it often now – especially when you’re doing anything involving movement or excess thought.<br /><br />And taking your advice: I’ve never met you, and I don’t really know you, but I love you. We travel the same road… In 12 years, you need to be where I am. And I hope we’re still exchanging messages then… Now I’m going to go dress up like a donkey.<br /><br />Love, SteveBreathinStevenhttps://www.blogger.com/profile/13425167024998690437noreply@blogger.comtag:blogger.com,1999:blog-921971826505373965.post-67801792267925088252012-08-01T14:24:34.688-04:002012-08-01T14:24:34.688-04:00Hey Beautiful Chick!!!
Are you calling my name?!?...Hey Beautiful Chick!!!<br /><br />Are you calling my name?!?! Are you looking for someone to chat with about being scared?!?! We all are – you wouldn’t be “normal” if you weren’t… Or, at least, we’d be far more abby-normal than we actually are if we weren’t…<br /><br />And not knowing what day it is is totally normal too… Every day is the same in your world now. All of your survival routines are the same every day – it’s not like you have a weekend where things suddenly are more relaxed. It sometimes helps when you have a caregiver who goes to work Monday through Friday, but, sans that, you’re screwed. But what does it matter – the people who know you and love you know you’re not an idiot. And the rest don’t matter… (Forgetting Griffin in your lap is a whole other issue – but if you’re like me, insanity doesn’t run in our family, it strolls through taking its time, having a long visit with each one of us...)<br /><br />The surgery is scary. Any surgery is scary. They’re cutting you. They’re taking out your crappy old lungs – but those crappy old lungs have been keeping you alive for many years. And they’re putting in new lungs that you don’t quite know how to use yet. But use them you will – and they’ll work – and the difference in the O2 and CO2 exchange is freaking amazing.<br />There are trained professionals working on you, who have done this hundreds of times – they’ve seen almost everything, and the things they haven’t seen, others have seen, and they have easy access to the experience of virtually everyone. Toronto started this whole thing – you were the first to successfully do lung transplants, and have been on the cutting edge of many developments.<br /><br />In our support group early on while I was waiting, I remember telling the group I was afraid of the surgery… Afterwards, several of them came up to me and sat with me – and told me not to worry. Yes, there will be pain – but it will be manageable and survivable. The pain management teams will have you well covered. Yes – things will go wrong – there will be bumps – but you’re closely monitored and many are anticipated… They will, and you will deal with them – and survive them.<br /><br />You’ve been reading blogs and whatnot about all the different things that can go wrong, and some do not have good outcomes – it’s good to know the potential bumps, and what to look for – but then you need to file them and not dwell on them. Remember, 85% or more of us survive beyond a year. Freaking 85%. The likelihood that you will be in that group is HUGE!!! Actually, over 85%!!! Them’s not bad odds…<br /><br />I would do it all again, Jess. In fact – if they came to me and told me that something is drastically wrong and they needed to do my surgery again tomorrow for me to live beyond next month – I would be in a hospital gown asking for directions to the OR.<br /><br />And – I’m being very honest – over the years I’d dealt with a number of collapsed lungs, followed by chest tubes and schlerosing – and I remember some of those experiences to be MUCH more painful than the entire transplant experience. Really.<br /><br />(End of part one – character limitations…)(Not mine, blogspots…)BreathinStevenhttps://www.blogger.com/profile/13425167024998690437noreply@blogger.comtag:blogger.com,1999:blog-921971826505373965.post-47653280186322398232012-08-01T13:45:49.382-04:002012-08-01T13:45:49.382-04:00I do have huge muscles. Love you toooooI do have huge muscles. Love you toooooLive Laugh Lungshttps://www.blogger.com/profile/14794653870687841789noreply@blogger.comtag:blogger.com,1999:blog-921971826505373965.post-44359018581548943382012-08-01T13:45:14.229-04:002012-08-01T13:45:14.229-04:00Ooooo, let me know how the donkey roaming went!Ooooo, let me know how the donkey roaming went!Live Laugh Lungshttps://www.blogger.com/profile/14794653870687841789noreply@blogger.comtag:blogger.com,1999:blog-921971826505373965.post-18644246840139801752012-08-01T13:44:51.216-04:002012-08-01T13:44:51.216-04:00Aw shucks, thanks ;)Aw shucks, thanks ;)Live Laugh Lungshttps://www.blogger.com/profile/14794653870687841789noreply@blogger.comtag:blogger.com,1999:blog-921971826505373965.post-71418380490108579502012-08-01T09:14:59.291-04:002012-08-01T09:14:59.291-04:00You are my hero Jess and dont let this go to your ...You are my hero Jess and dont let this go to your head. You are the strongest person that I know and my best friend. I know that post transplant you will do great. You are like Batman, you will rise again and fly above us all and of course bet us in cards when your back here.LOL Love ya girl.xoxoRednoreply@blogger.comtag:blogger.com,1999:blog-921971826505373965.post-42536580514278472132012-08-01T08:55:16.793-04:002012-08-01T08:55:16.793-04:00Thanks for the morning laugh Jess! And, because of...Thanks for the morning laugh Jess! And, because of your post I told my younger brother I love him ... ahhhh! Now you'll have to excuse me, my donkey costume has arrived ;)Joanna Valsamishttps://www.blogger.com/profile/16693877148562858443noreply@blogger.comtag:blogger.com,1999:blog-921971826505373965.post-71770076996590088792012-07-31T22:52:32.421-04:002012-07-31T22:52:32.421-04:00Love you and your sense of humour Gurlfren!Love you and your sense of humour Gurlfren!Pjhttps://www.blogger.com/profile/18393555684207764434noreply@blogger.com