credit: Online Stock Photos
Good morning everyone! This is not an easy post to write today. After a 6 month wait, I finally got in to see the pulmonary specialist & the news was not the best. Where I was under the impression I had mild to moderate COPD, he informed me this morning I have moderately severe COPD which means I skipped the whole moderate section while I wasn’t looking! LOL!
I have to have a lot more tests done now – a lot of them dealing with my heart because I am experiencing chest pains & numbness in my left arm & then even more tests for the COPD because something has shown up on the x-ray which was never mentioned to me before. I have to be assessed for at home oxygen. The specialist added yet another puffer to my regime which costs a fortune, but because hubby just started work & we don’t have prescription coverage yet, the doctor was nice enough to prescribe a new drug with a drug company free trial for a while.
With the news this morning & his recommendations, I am hoping to finally get some provincial & federal disability coverage so at least my meds will be paid for. Quite frankly, the hoops they make you jump through are very tiring – & all of this when you are already sick.
Next week (Thursday & Friday) I have to go for a MIBI test (a chemical stress test of my heart) since I am not able to do a physical stress test. It involves a machine like an MRI & is done over a 2 day period. I am terrified! I am extremely claustrophobic & have had difficulties with these machines in the past – panic attacks in the machine causing them to have to stop the test & then I have to start all over again. I have gotten permission from my psychiatrist to up my meds on that day so I will be partially sedated.
The only good news this week – I lost 11 pounds! I have been struggling to lose some weight because it would be easier on my knee & back & would definitely help with my breathing. I had been sitting at a plateau for the last 6 months due to thyroid problems even though I was taking medication. But it seems I have finally broken through the plateau. This makes about 30 pounds lost for me since June of last year.
Please understand, I don’t tell you this because I am looking for sympathy. My posting schedule has been pretty erratic lately & with all the tests, etc. I have to go through now, it may get even more erratic. A lot of these tests wear me out so much I end up coming home & napping for days to get caught up. I have not forgotten any of you & I try to catch up with reading your posts when I can.
Any good thoughts or prayers would be greatly appreciated. Love to you all!
~ Benze
benzeknees 
Jun 12, 2014 @ 14:03:43
Prayers going up. You know where to find me. I wish that I could be there in person for you xo
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Jun 12, 2014 @ 19:04:05
I know you would sweetie & I appreciate everything you do!
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Jun 12, 2014 @ 19:06:12
Hugs xo
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Jun 12, 2014 @ 14:08:02
It’s cool, Benze; I’m seeing doctors repeatedly for my own stuff– I had another MRI (6th? 7th?) just two days ago. Of course our (Cimmy & I) thoughts, prayers, and meditations are with you.
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Jun 12, 2014 @ 19:05:00
Thanks Jak & Cimmy! How is your back? Did you ever get in touch with Mark (the Idiot)?
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Jun 12, 2014 @ 19:23:12
Not really. I don’t think he ever saw my comment.
I’m in terrible pain today. Basically the surgeon thinks a few of my screws were placed too close to my spinal cord, and they’ll have to come out.
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Jun 12, 2014 @ 14:10:29
HUGS!
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Jun 12, 2014 @ 19:05:24
Thanks! I’ll take everyone I can get!
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Jun 12, 2014 @ 14:18:54
Glad the Dr could set you up with the free prescription. Hope the province follows soon too, and they get you the treatments you need.
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Jun 12, 2014 @ 19:05:59
Thanks Guaps! Been missing you – how is your time off going?
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Jun 12, 2014 @ 19:54:47
It’s actually a relief to not be online so much. And I’ve been enjoying doing other things. Thinking perhaps I’ll just be a reader and commenter, not a blogger anymore.
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Jun 12, 2014 @ 21:44:49
Oh no! I would miss you terribly Guaps!
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Jun 13, 2014 @ 05:02:51
Thanks, but I’ll still be around, reading.
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Jun 12, 2014 @ 15:16:56
I’m so sorry you’re facing all this. You are most definitely in my thoughts, and I’m sending positive energy your way. Good luck with the tests. I hope they go well.
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Jun 12, 2014 @ 19:06:50
Thanks Carrie! I know you understand, being a doc.
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Jun 12, 2014 @ 15:54:12
I’ll remember you in prayer.. Hope the tests go okay. The sedation should help with the test that causes the claustrophobia …. Diane
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Jun 12, 2014 @ 19:07:33
Thanks Diane!
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Jun 12, 2014 @ 16:02:44
You are definitely in my thoughts and good wishes for a positive outcome with the tests. Here are some flowers to cheer you up! 💐 🌺
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Jun 12, 2014 @ 19:08:15
Thanks Princess – it means a lot to me!
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Jun 17, 2014 @ 21:00:22
How are you?
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Jun 17, 2014 @ 23:48:30
Rough day with the tests, I feel battered & bruised & have a bunch of holes in me from needles & IV’s, but it wasn’t quite as bad as I originally thought. I didn’t even have to take extra anti-anxiety meds. Thanks for remembering & asking!
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Jun 18, 2014 @ 08:33:03
🙂
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Jun 12, 2014 @ 16:43:55
I am covering you in prayer. You have so much going on but the good news sounds like you are getting answers and much needed help and meds. We will all be right here cheering you on!!
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Jun 12, 2014 @ 19:08:47
Thank you Beth Ann!
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Jun 12, 2014 @ 17:01:26
Don’t stress about the mibi test, I am quite claustrophobic and hate to sit still and have had a mibi. I didn’t find it too horrible and it shouldn’t take too long for them to get the pictures, Hope the new meds help soon, hugs to you 🙂
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Jun 12, 2014 @ 19:09:43
Oh, girl – you know I want to pick your brain now, don’t you? How long does the test take exactly?
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Jun 12, 2014 @ 19:16:33
The actual lying still part was 15 minutes or less, but before they do that they have to start your I.v and inject the thallium and then wait about 30 minutes while it gets in your system. So about 45 minutes total from start to finish.
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Jun 12, 2014 @ 21:43:11
Does this stuff make you flush or hot?
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Jun 13, 2014 @ 03:45:01
Yeah its a contrast, and they can make you feel flushed for a few minutes.
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Jun 12, 2014 @ 21:46:47
What’s the 2nd day for? They said I have to go back the next day . . .
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Jun 13, 2014 @ 03:47:58
Hmm I’m actually not sure about that one. In the hospital we always do a one day stress test.
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Jun 17, 2014 @ 23:54:16
OK, here’s the scoop on these tests – the first day is the stress part of the test. They inject you with radioactive material & something to stress your heart. You don’t feel like your heart is beating hard or anything. I felt nauseous, dizzy & clammy but it is only in your system for about 10 mins. I was monitored by a doctor the entire time. Then they give you another chemical to flush this out & give you coffee to help the process. Then I went to the “chair” where I had an x-ray type machine pushed into my diaphragm & my left side. I was only allowed to take shallow breaths for about 5 mins., then they laid me down & did it all over again. Tomorrow I have to go back & have the pics in the “chair” done again. Total time today – 2 hrs. & I expect it to be same tomorrow.
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Jun 18, 2014 @ 06:48:07
Aww two hours too long! How are you feeling? Is the shortness of breath getting any better?
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Jun 18, 2014 @ 10:13:34
I had trouble with the SOB when I had to go to the hospital after these tests to get a blood gas done. The respiratory lab is almost the opposite side of the building from the entrance! I have to use a can for walking & by the time we got there I was huffing & puffing really good. Hubby tried to find me a wheelchair to get me back , but believe it or not, there didn’t seem to be any extra wheelchairs in a hospital! He finally located one & pushed me back to the entrance, then had to return the wheelchair back to where he got it from. I haven’t heard from the pulmonary doc yet today!
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Jun 12, 2014 @ 18:32:19
“the doctor was nice enough to prescribe a new drug with a drug company free trial for a while.”
That is so great! What an awesomely compassionate doctor he is.
” Quite frankly, the hoops they make you jump through are very tiring – & all of this when you are already sick.”
Yes, my mother went through the same thing with her insurance company. Oh, the hoops she had to jump through while she was ill, however, it did all work out well.
Benze, please know that my thoughts, good vibes, prayers and love are with at this time. 🙂
((((((((((((( You ))))))))))
X
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Jun 12, 2014 @ 19:10:27
Thanks Ron, I can feel the hug from there!
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Jun 12, 2014 @ 18:38:09
You will be in my thoughts, Benze, and I hope that the new treatment gives you a breath of fresh air and a respite from all you’ve been going through.
Last year when I was quite sick, I spoke with my doctor who said taking Xanax not only before the tests I had but also the night before would be OK. I had a whole lot of tests and my tush was so TD sore that I panicked over the idea of a Pap smear! The Xanax helped me enormously. So did re-learning that tests are never as bad as I imagine they will be — and that my panic and anxiety make them worse!
You will be great!!
Xx
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Jun 12, 2014 @ 19:03:22
Thanks Elyse! Most of the rest of the tests don’t bother me too much – I had the spirometry test today & it’s very hard work. But I have to say being cooped up in a tube too small for me is really getting to me. I will be taking extra meds for anxiety before the test, hubby will drive me so I can be almost sedated.
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Jun 12, 2014 @ 20:51:09
That should work. You will ace it!
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Jun 12, 2014 @ 19:47:45
Oh silly Benze thinking that we might think you had forgotten about us :). We are your blogging family, and we will always be here waiting for you whether you post once a week or have to skip it for 6 months. When you can’t post we will be thinking about you, and when you do post we are here to listen and support you. Keep smiling – you will get this sorted out, I just know it!!
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Jun 12, 2014 @ 21:43:51
Aaahh, thanks Cindy!
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Jun 13, 2014 @ 05:01:21
🙂
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Jun 12, 2014 @ 20:18:18
Positive thoughts and prayers headed your way, dear L. xoxoM
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Jun 12, 2014 @ 21:41:31
Thanks Margarita! Send me some pretty flower pics to keep me happy 🙂
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Jun 12, 2014 @ 20:25:51
I am heartbroken… except for the losing weight part… sniff…
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Jun 12, 2014 @ 21:42:30
You can’t be heartbroken – that’s my job!
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Jun 12, 2014 @ 22:04:42
awwwwwwwwww
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Jun 12, 2014 @ 23:10:35
You must be shocked that you are being considered for home oxygen, benzeknees.
I have found with my Copd, it worsens and then plateaus for a while before I step down again. I have stayed on the same numbers for years.
My heart goes out to you having to navigate costs. We are lucky to have free medical care and subsidized medicines in Australia, but it’s still expensive having a chronic disease. Do take the puffers and avoid coming into contact with colds and flus. These will knock out your lung function.
I’ll share some good advice that I received re numbers and stages like mild, medium, severe. Do not invest too much in their meaning. No two cases of Copd are alike. They may hold you back.
The best response to worsening breathlessness is meds of course, exercise and singing, as we have discussed. Some folk need anti-depressants.
Pulmonary rehab is a great help.
All the best and keep us posted. I have a bit of experience with O2 if you need any feedback.
x
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Jun 13, 2014 @ 10:41:32
Thanks Barb! It was just a shock to hear the word severe linked to my COPD diagnosis for the first time.
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Jun 13, 2014 @ 00:33:37
Sending you good wishes and good luck, and prayers for your improved health. I hope you will have no difficulty accessing the medical care you need, and that you’ll be well looked after. Take care.
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Jun 13, 2014 @ 11:38:33
Thanks for the support SJ! Just the one test scaring the bejeebers out of me so far!
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Jun 13, 2014 @ 04:48:14
Benze, You have gotten a mixed bag of information from the variety of doctors you use to maintain your health. All the info isn’t bad, nor is it all good. But you how have a starting point, and more importantly so do your doctors and specialists. Also congrats on the weight lost, that is significant and will help you greatly in the long run. Keep your spirits up, and do the best you can to maintain your courage. Also listen, and if you hear something you don’t understand ask them to repeat it, do this as often as it takes. Take care, BillIn a message dated 6/12/2014 3:59:29 P.M.
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Jun 13, 2014 @ 10:42:18
Thanks Bill! I can always count on you!
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Jun 13, 2014 @ 07:34:56
All the best to you Benz for a positive outcome. As for the tests…I know what I do to myself, which is not good. Stay positive,relax and know we are all on your side.
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Jun 13, 2014 @ 10:38:37
Thank you – had a heart sonnogram this morning. This one wasn’t so bad because it was just on a bed in the middle of a room. It’s the one in the MRI machine, with injection that has me freaked!
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Jun 13, 2014 @ 20:34:37
I have some idea what your going through with the disability thing (I won’t say complete idea as I’m not in your shoes and everyone’s story is different)… Actually it’s hubby who is the one disabled, but as his wife – I deal with it all right along with him.
Like you, hubby is claustrophobic (in his case has to do w/ being pinned under a wall when injured) and those MRI (or CT scans??) are dreaded… In fact he can’t do w/o sedation – Freaks out too much.
Wishing you all the best with all this. I know it’s a lot to deal with.
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Jun 14, 2014 @ 00:54:59
Thank you for your empathy! I just found out this afternoon, the particular clinic I will be going to has a chair (like a dentist’s chair) for the test. I will be hooked up to cameras & wiring, etc. but my head will not be enclosed. For me, this is a great relief. Hopefully, maybe the next time your hubby has to have a test they may have a machine like this.
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Jun 14, 2014 @ 06:10:43
That is excellent news 🙂 Last hubby had MRI, he was able to have it done on an open machine…. Still needed some sedation, but not as bad… Perhaps, next time, we can see if such a machine as you describe is available – worth a look. Continued thoughts & prayers.
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Jun 14, 2014 @ 11:44:30
I hope your hubby gets to use this kind of machine in the future if he needs more tests!
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