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Post by jim on Apr 22, 2013 5:35:28 GMT -5
I have Emphysema, as well as cyclothymia, generalised anxiety, BPD and chronic fatigue syndrome, I try to take it one day at time.
I live in Brisbane in Australia.
Thankyou Liz74 for leading me here, I hope you and your mother are doing well today.
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Post by Blossom/Jackie W. on Apr 22, 2013 7:53:20 GMT -5
And a warm  and welcome to you as well Jim! Since you're in Australia; I guess you're in bed by now and our "official" Ambassador may not be up yet. Whew..... talk about time zones! That was very kind of Liz to point you here and I hope that in due course this will become like a second home for you. You'll find the members here very supportive, encouraging and helpful and even if they don't have first hand knowledge or info to share on something you're seeking, at the very least they'll point you in the right direction. I see you have a few things going on medically, including emphysema. How far advanced is the big E by the way? It's gotta make it even tougher for you I would think from a psychological standpoint. Not an easy road to walk. Do you have a family? BTW; I have a neice who lives in West Australia.... she comes back to Nova Scotia here (Canada) at least once a year.There's a LOT of good info on this site so take your time, look around, get comfy, use the Search tool if there's something of interest you're seeking and then jump right in anywhere whenever you're ready. Don't worry about posting in the right or wrong place.... we'll move it if need be... no biggie.... My name is Jackie; aka "Blossom" and I look forward to getting to know you better! |
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Post by sandy07 on Apr 22, 2013 10:58:04 GMT -5
Welcome to the forum.
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Post by mary57 on Apr 22, 2013 17:26:30 GMT -5
Welcome Jim, glad you made it here, you will find us a friendly lot, and lots of information on COPD issues.
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Post by Darcy on Apr 22, 2013 20:04:55 GMT -5
Jim I also live with BPD. The depression part lasts longer now as my COPD worsens, so it will nice having you here to chat with. Having people you can identify with can really make a difference in your life. Post lots and post often! |
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Post by jim on Apr 23, 2013 6:18:17 GMT -5
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Post by susanny on Apr 23, 2013 10:23:31 GMT -5
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Post by jim on Apr 24, 2013 0:42:01 GMT -5
Hi susanny, thanks for the warm welcome. It's been a warm sunny day in Brisbane, with just a few clouds and a high of 27 degrees.  |
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Post by jim on Apr 24, 2013 1:06:28 GMT -5
Hi Blossom/Jackie W, thank you for the warm welcome. I'm not sure what is going on with my Emphysema, last time I saw my doctor my brain wasn't working very well, so I couldn't take in much of what he was saying. He said my chest X-ray was good, with more good lungs than bad. In the breathing test, I could empty my lungs OK, but another part of the test showed a result similar to an asthmatic. I have two puffers to take, Spiriva in the morning and Simbicort morning and night and also if I have problems at other times. My breathing varies from day to day, some days I do really well, others I get puffed out very easily. Life has not been an easy road for be, but I try to take it a day at a time. With Cyclothymia I go up and down and when I'm up I try to get as much done before I crash again. At the moment I'm in a high and getting as much as I can done. I know when our weather gets cold, I'll tend to hibernate and it will be a real effort to motivate myself to do anything. Also my chronic fatigue is always lurking and I never know how I'll wake up, some days I just have to go back to bed. Yep I have family, I've been married for forty years and we have a son and a daughter and two grandsons. I had a quick look around the site, looking forward to seeing more as time permits. Anyway I like what I see and the members seem to be very kind and caring, so I have placed a link to here on my website. Take care Jackie, I hope life is being kind to you. |
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Post by jim on Apr 24, 2013 5:58:59 GMT -5
Hi Ripose,
thanks for the welcome. feeling my way around at the moment.
Feel free to PM me anytime, BPD sucks big time and it good to be able to vent.
Hope life is smiling on you.
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Post by susanny on Apr 24, 2013 10:26:49 GMT -5
Jim, what a mess life can seem to be at times, I agree. I have problems with so many things that they won't even consider me for a transplant. Just found that out yesterday and it really hurt. So now I just plug on and hope I don't get sick for a very long time. I too have been married 40 yrs and have 2 children, a boy and a girl, but no grandchildren, darn it. Neither one of mine wants kids and I just love children to bits. Oh well, I have grand dogs instead,  . My daughter has a beagle and my son has a boxadore (boxer/lab mix). They love us and sometimes act like 2 yrs old kids so I guess it's ok. My son lives nearby and my daughter lives 4 hrs away. You said it was 27 in you area; is that in C or F? I don't know how you measure temps in Australia. I live in the US and we measure in F. It is only going to be in the low 50's today if we're lucky. Been a very long and cold winter this season. Still waiting on Spring! Take care and will talk again another day. Sue |
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Post by jim on Apr 25, 2013 5:29:44 GMT -5
Yes Sue, life can be a very hard row to hoe at times. Sorry to hear your bad news, my heart goes out to you. Yep hun, all you can do is take it one day at a time and keep your fingers crossed. Times like this make me realise, that in our in circumstances we should be living for the now, trying to do all those things we have put on hold, like my mother used to say... "at my age, if I want chocolate, I'm going to have it no matter what my doctor says". In Australia our temperatures are in C, so 27C is equal to about 81F. You 50F 10C is too cold for me, it would be very rare for us to get a daytime temperature that low. Take care, it is nice talking with you. |
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Post by David on May 7, 2013 22:36:18 GMT -5
Jim and welcome to the group. I have had emphysema going on 30 years now. First diagnosed in 1983. I will be 62 year old towards the end of May. I sleep under oxygen at night and do the nebulizer 4 or 5 times a day. I also suffer from Chronic Fatigue and found the best medicine that worked for me was Nuvigil (Armodafinil). I took it for two years but it got very expensive in America but it did work wonders for me. I think it is much cheaper in Canada. There is no generic so a script would cost anywhere from $300 to $400 for on month supply of 30 pills. That was about 2 years ago so I have returned to the Chronic Fatigue and trying to learn to live with it. I have a great Primary Doctor but my Lung Doctor goes by the book. The stuff they show on out TV. I took the stuff for years to the point it didn't seem to work anymore. Probably cause the emphysema had advanced. I was told at this point I need to get on the list of lung transplants but I have to seriously think about that. Right now the nebulizer and rescue inhaler works the best for me. I sure wish I could afford the Nuvigil. It gave me a feeling of wakefullness. Maybe someday I can order it out of Canada. Anyway, I hope things work out well for you. Overall I am happy. I just hate the fatigue and shortness of breath. |
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Post by sandy07 on May 7, 2013 22:54:47 GMT -5
It's David...right? I remember you saying your lung problems were from crude oil in the oilfield.
Most COPDers use Spiriva and Symbicort or other such inhalers and later a nebulizer might be added. Have you always used just the nebs and a rescue inhaler? Have you tried anything else for your SOB? The one on TV...you mean ADVAIR ? Didn't work good for me either. I can't comment on your Chronic Fatigue but I know others out there have it and may reply.
Lots of information here to help you with the COPD. Don't be afraid to ask questions. I read you're from Florida. Our linndie is also in Florida. Welcome to the group.
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Post by Deleted on May 8, 2013 15:12:46 GMT -5
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Post by susanny on May 8, 2013 21:11:00 GMT -5
Gerald, how long have you taken this? What has it done for you?
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Post by Deleted on May 9, 2013 0:06:09 GMT -5
I have taking the Adrenasmart on and off for a couple of years.
I find it helps provide come consistent level of energy without depleting other minerals etc, kind of gets rid of the rundown feeling. It also helps me get to sleep at night.
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Post by David on May 9, 2013 17:26:27 GMT -5
Gerald, I will look into the adrenasmart. Thanks for the link.
Sandy, yes I am the one that was in the oilfield and had the problem with crude oil. I was first diagnosed with the beginning of emphysema in 1983 so this year (Fall) will be 30 years of having emphysema. I did Advair and Spiriva for years. They worked good for at first. I stopped the Advair first and the Spiriva about a year ago. I had gotten to where I was using 2 ProAir rescue inhalers in one month. I have nothing against the medicine it just got to where it didn't work for me anymore. I should not have to use a rescue inhaler every 2 weeks. That's 200 puffs in each one.
As soon as I was put on the nebulizer with Albuterol Sulfate Inhalation Solution things improved for me tremendously. I now use one rescue inhaler every 2 months. I reckon it depends on how bad the emphysema has spread to how each medicine works for different people. I wouldn't advise anyone to go against what their Doctor prescribes to them. I have just had to find what works for me. I have a very good Primary Doctor right now who will listen to what I have to say. My Pulmonary Doctor just wants me to give me the stuff I see on TV. I am a new patient to him and he knows nothing about my past and doesn't care to hear about it anyway. I will give him a chance. Like he said "It's bad and you need a lung transplant" and I said "Yeah, I know. I have had it for 30 years". He didn't say much after that. Anyway things are going pretty good for me with my Primary Doctor right now. I live in a tourist town and Doctors seem to come and go. I hate having to change doctors.
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Post by susanny on May 9, 2013 20:40:22 GMT -5
David, where do you live? It doesn't say in your profile and I'm curious about it and your treatments. I also had/have to use my inhaler more often than once a month, more like every 2 1/2 to 3 weeks, so is prescribed for 2 per mo. I use albuterol in the nebulizer as well as Brovana and Pulmicort. Just recently switched from Spiriva to Tudorza and am finding it more helpful. Takes a while for it all to kick in but once it does it helps. I'm still very SOB and can't walk very far without resting.
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Post by John on May 10, 2013 21:53:27 GMT -5
cheerleader0-vi
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Post by David on May 10, 2013 23:37:11 GMT -5
Susanny, I live in Miramar Beach right next to Destin, Florida. It's in the Panhandle of Florida. I had not heard of Tudorza until you mentioned It. I go back to my Pulmonary Dr on May 20th and will ask him about it. If he want listen I will ask my Primary Dr who will listen. My Primary Dr has treated a lot of Emphysema people and so far his way is working for me. But that is just me. We all are different and act differently to meds. Right now we are looking into a Medicine called GKH Gly-His-Lys Emphysema: Stopping Progression and Reversing Damage Information by Boston University Medical Center - Published: 2012-09-01 Citation: Disabled World News (2012-09-01) - Research finds compound used in some skin creams may halt the progression of emphysema and reverse damage caused by the disease: www.disabled-world.com/health/respiratory/emphysema.php I have talked to a guy who is studying this. His name is Loren Pickart. But the FDA is trying to keep him quite. He is not a medical doctor but a biochemist and scientist for cosmetic industry. www.copd-international.com/COPD-Info/index.php/archives/345I apologize if I hijacked this thread. I just started writing and couldn't stop. |
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Post by susanny on May 11, 2013 10:57:12 GMT -5
Wow, David, that is really interesting. I wish they could fast track these kinds of treatments. I wonder how it would be administered. Wouldn't it be just great if all you had to do was inhale it like all our other inhalers and it would go where it needs to go? Couldn't be that easy, but it sounds good.
How do you manage with your breathing in the type of heat and humidity that you live in? I wouldn't survive; I like it to be in the high 60's to low 70's with average to low humidity.
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Post by David on May 11, 2013 19:59:56 GMT -5
It's not to bad here where I live because we have a sea breeze. Feels good when I go to the beach. On the rare days there is no breeze I stay in It does get hot here so I get out mostly late afternoon in the summer months. My Primary Doctor is checking on the GHK and so far has found out it has to be intravenously administered for about 2 hours. That is not written in stone. I will see him in a few weeks and hope he has found some answers. He is a very progressive Doctor but we both know that right now it is not aloud in the US so I am not getting my hopes up. I did enjoy my talk with Loren Pickart. He said he wish he could help and he didn't try and sell me anything. I believe he is very sincere in his research. |
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Post by Deleted on May 11, 2013 20:47:16 GMT -5
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Post by David on May 13, 2013 23:47:49 GMT -5
Thanks for the links. I show my primary doctor this stuff and he reads it and checks into it. My pulmonary doctor shows no interest at all. That's no big deal since my primary doctor is the aggressive one. He was in the Gulf war and saw what happened when the enemy set all those oil wells on fire. It was not good so he understands my situation from me working in the oilfield and getting covered with crude oil. Here is a very interesting link from the Gulf War. www.penfield-gill.com/presentations/CDCall-final.htm |
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Post by jim on May 16, 2013 1:06:40 GMT -5
Hi justdhf,
Thanks for letting me know about the Nuvigil (Armodafinil), I’ll see if it is available in Australia.
Also thanks for your other informative posts. thumbsupde1
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Post by jim on May 16, 2013 1:11:54 GMT -5
Hi Gerald,
Thanks for posting about the "AdrenaSmart by Lorna Vanderhaege", if I can have it shipped to Australia I'll give it a go. thumbsupde1
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Post by jim on May 16, 2013 1:32:42 GMT -5
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Post by jeff on Oct 9, 2013 20:56:06 GMT -5
I found ghk on ebay I was wondering if it could used in my nebilzer ?
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Post by sandy07 on Oct 9, 2013 22:58:09 GMT -5
Hi jeff. I can't help with your question as I don't use a nebulizer. I'm sending people to help you but it could be morning before they answer. Hang in there.
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and welcome to you as well Jim! Since you're in Australia; I guess you're in bed by now and our "official" Ambassador may not be up yet. Whew..... talk about time zones!
. You are welcome with open arms and hope to hear more from you when you aren't so tired. Sleep well, Sue
