Sandra Vanzyl
Forum Replies Created
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…..so sad to read Serena’s writings. Fight or flight ….when we are chronically ill as much as we want to try to keep exercising and keep up with daily in home jobs it does become very difficult and so very tiring in and of itself. As we prepare our move to Toronto for transplant I am somewhat worried about the physio that i will attend 3 x week….I want to be as strong as possible but also am doubtful of how long I can walk on the treadmill with oxygen at 10litres …..I hope I am over worrying about nothing..I bought the Book from Amazon written by Robert (president of lung transplant fundraising) he was so ill that he had to sit down when going from his bedroom to his washroom) I can only imagine that he wasn’t able to do very much exercise wise . I guess we will find out more on the 14th …Robert had a successful lung transplant and I will go with that for now !
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Hi Charlene, I do hope you know that your employer cannot let you go because of your illness and they have to keep paying your benefits while you work through this IPF, are you looking into transplant at this point, as you know I am and have all my assessments done all with great results (meaning there is nothing else wrong with my body !) and my boss can’t wait for me to return to work which may be months still but if I can return that is my plan ….I loved my job , it was a huge part of my life Charlene….feel free to email me at [email protected] anytime my friend ….we will beat this together ….sending virtual huggs to you !
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This is no doubt a horrible disease Charlene, and I doubt very much that you would use this as an excuse of any kind to avoid doing certain things with friends. Whomever said that you’d always have the better excuse because you are ‘dying’ is way off the mark. That was beyond cruel and in my mind I would never trust that person again nor would I ask her for any help. I’m sorry that she put you in that situation…she must be very self absorbed to say those words. Whoa….beyond upsetting. I guess the fact that I’m going to be 65 soon puts a different light on things. Being older I have even less energy that younger people just because of age…we need to have positive people around us…sure we can’t really go to the beach with all this ‘equipment’, can’t imagine dragging that oxygen tank on wheels through the sand …OMG…that would be very annoying ….I would be so bold as to ask some guy if he could help me out..I’m not afraid of asking strangers ….LOL …I’m definitely going to meet you when we’re in Toronto for the week of assessment. It’s a winding road we’re on and I think they are making headway with this disease and they are now using lungs from some of the opioid deaths in Toronto even tho they are Hep C ….we can always chat over the phone as well Charlene ….xo
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Hi Ladies, I’ve been on oxygen since January 2018′, 2l at rest, 6L when I’m up and about the house such as doing things in the kitchen, tidying up etc. 8L to climb the stairs and sometimes I need it on 10 for the stairs tho’. Sleep with it on 2.5 L ….the portable oxygen and or tanks are used when a have a coughing episode and now I crank them up to 15 because it shortens the episode of coughing ! This is so life changing ……most days I’m happy and try to get things done and others like yesterday and today where I have the energy of a knat .
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…..thankful for the many days that I was so lost and had to do something while i tried to mend ….I seem to mend by March and then have recently been feeling listless and no energy to do much…..I will email a small selection of my hobbies ! Cheers for now Charlene !
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I am going to try to upload a few pix of my hobbies I’ve been working on since home from hospital (well, not right away, since I was so unwell till into February ). Loved painting , knitting and some simple little quilts for the grandkiddies …..hope I can upload the photos …
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I would love any advice for my Husband who will be as much a part of my transplant as I will be. ?
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Hi Charlene, new kidney issues….forgive me for being so blunt but I sure wish you could meet with the transplant doctors here at TGH….if this new kidney infection is caused by your medications for IPF I honestly think this team would be much more knowledgeable in this ….not that this has happened to me (yet)..but the transplant patients can have so many issues with kidney, and other medical issues and they seem to be able to adjust patients meds to make them better. Just a thought, my ILD Doctor in Ottawa has moved to California to continue her practice and join her husband who has been there for 3 yrs. I’m so thankful that I met her when I did, she was beyond amazing and is the one who pushed for transplant . I hold her in high regard as well as how empathetic she was…..
cheers
Sandy
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….that’s so good that you have some great hobbies and watercolours to get back into NanaJane…..I’ve been finishing up a wee quilt just tonite for my granddaughter and also have been knitting up some ‘cowls’ ….it was a quiet Christmas here, we invited no one to visit nor did we visit anyone as we prepare for transplant ….I am now listed and meeting the Surgeon on the 14th of January and beginning physio 3 x week for a month at the hospital and then we will go from there. I’ve been on oxygen 24/7 coming up to 1 year in early January , it’s been a life changer is all I can say. Hope you keep well and hopefully you aren’t on oxygen as I write this !
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Hi Ginger , sounds like you’ve got some great hobbies going on…..we are truly fortunate to have crafts, hobbies, photography, art , quilting, knitting to keep us busy some days ….I try to work on something everyday but the odd day here and there I just do nothing and then I feel guilty at the end of the day….it’s almost 1 yr since I’ve been on oxygen 24/7 as I wait t be listed for lung transplant …all the tests have been done and all with great results (thankfully at 65 my failing lungs are the only thing wrong with me, altho that’s a big one) ….so today I’m going to get some knitting done as well as maybe some Christmas gift wrapping ! …enjoy your day
Cheers Sandy in Ottawa , Canada ??
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I’m on a quilting site. Quilt with Pat Sloan, so much happening and sharing on this FAcebook Page…you would be happy to sign up for it.
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Hi Chuck, I know that waking up in the night routine, coughing my head off, I’ve been doing that for years ….there is a prescription medication that I use when I’m going out to dinner or the movies …it’s called Tussinex…it’s a cough suppressant and it works 95% of the time . Coughing is brutal and pains our bodies and our minds…..I don’t know how I’ve managed this cough for over 15 years (badly diagnosed by many doctors ) ugh…when I’m coughing now I can’t wait for the gag reflex to come so that I know it’s almost over ! Sad but true. We’ve been invited to a wedding on the 29th (my GF Son) I said we won’t come to the Church so that if I start to cough up a lung I won’t be looked at with ‘WHAT are you doing Lady ‘ I mean what if it’s being videotaped and all you can hear is coughing ….till I gag. ! We will go to the after party tho ….there are people from Scotland that I want to see again! I’ll just double up on the Tussinex and have a good old time ! …hope you slept well last night ! All the best Chuck
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Hi Charlene, in replying to your ‘caregiver’ question, my Husband John is my caregiver, and he has been a wonderful caregiver since home from the hospital in January. He does all the cooking (we also do takeout food , chicken, pizza, Greek food platters, ) but by far does everything as well as hold down a full time job in sales ! He was off last week with me and I encouraged him to golf which he did 4 or 5 times and I’m good with that because he needs to have some normalcy in his life ….I find when he is home he wants to be with me every minute which isn’t necessary ! We have a week of assessment coming up for transplant possibility and he is taking that week off as well but glad to see there is some time when he doesn’t need to be with me , so I hope he can meet up with some friends for lunch or coffee ! Or maybe he can wander over to the Eaton Center and buy my some diamonds. LOL…..that’s just too funny, material things mean nothing to me at all, I have all the worldly things anyone could want, I just want to get better !
I am open for any questions or ideas anyone has !
Cheers …..one breath at a time, one day at a time ! ❤️
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Thank you Charlene ! Have a wonderful Day !!!
Cheers
Sandy
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hi Bill, I have def had some brain fog with ILD….it was especially bad when I was on prednisone so I was slowly weaned off of that. For the cough I use Tussenix which is very very helpful…it’s a prescription so call your doctor to ask him for a prescription for it….itvis an opioid but as my RN said…when you use an opioid for the purpose it was made for you will never get addicted ….I don’t take it all the time…but my cough is brutal…lasting 10 – 15 min and a few weeks ago ine lasted 45 minutes , that was a bad day. I’m am going for Lung Transplant assessment in a few weeks and pray that I’m accepted for the transplant list ! This is a tough disease to battle with and I have been battling this cough for over 15 years and just not diagnosed until about 5 or 6 years ago . I am on oxygen 24 /7 since January when I was hospitalized with pneumonia . Best Sandy
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Hi Charlene …..I don’t really drive too much since I’ve been off work, I had a company vehicle and as of June they have given it to the person replacing me. But I did drive with the portable and didn’t have any issues with it….lugging it around is definitely a pain in the butt (LOL) but recently got a walker to put it and my purse into the basket and that sure takes the weight off my shoulders….both the portable and my purse both weigh about 10 lbs…eeeek ! I don’t need the walker to actually walk though so am happy about that. Oh and last time I was at Walmart I used the electric chair rides there….that was kinda neat, somewhat reminded me of go carting and no helmet needed ….the buggies were great too but the Therapist at the Lung Association said to try to make your travels the easiest you can to save your lungs and heart overworking ! Makes some sense to me !
cheers to all
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greetings Mike Sturgill and Charlene….I must be some kind of wonder patient because I’ve been suffering with ILD over 15 years ago (well that’s when the nasty , gagging cough began ) then misdiagnosed for 7 years with asthma which I do not have and never did. Things progressively got worse…then I’d have a few months of no coughing….fast forward to January 2018 when I was hospitalized and had contracted pneumonia. I was in hospital for 10 days and have been on oxygen 24/7 since Jan 3rd. I managed to get better from the pneumonia but have yet to return to work (I’m a liquor representative , loved my job…and probably should have stopped earlier ) …I’m still an employee there altho they have replaced me with someone who is on contract until I decide whether I will return to work after transplant . Hubby and I are going to Toronto General soon for the assessment , I cannot imagine why I wouldn’t be accepted but then nothing is for sure. I missed work terribly and now I don’t think about it much as I am trying to be strong and get strong for my upcoming Journey . I’m so lucky to have such a Fabulous Husband who does so much for me. I look forward to hearing back from you both. CHEERS ….Sandy