I need oxygen now!

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Lindaloo
Veteran Member


Date Joined Sep 2006
Total Posts : 1713
   Posted 4/27/2012 6:55 PM (GMT -6)   
Hello my fellow CP'ers.  I hope this evening finds my friends coping well and managing the pain well for the time being.  My prayers are for all of you.
 
Well, as my title suggests, I am now on oxygen.  I went to a respiratory specialist to investigate my extreme shortness of breath as of the last six months.  To make a very long story short, it has been determined that I have severe sleep apnea, two different types and need oxygen during the day, as well as a c-pap or bi-pap mask during my sleep at night.
 
They brought me into the sleep lab for a second time to titrate the mask to eliminate my apnea.  No good.  I felt like a hurricane was blowing at me and it went into my stomach.  So, this Wednesday, I am going again, but during the day and while I'm awake to see if I can overcome my resistance and find a way to get use to the mask and hurricane winds.  lol.
 
Meanwhile, the oxygen during the day has made a tremendous difference in me being able to get around.  Seems I need it so much whenever I go to do anything.  I never realized how out of breath I really got all the time.  So, I carry a cylinder with oxygen whenever I go out and wear the cannula at home hooked to the machine.
 
However,  my husband has been suffering with shortness of breath too and went to a new internist who called his cardiologist and scheduled a cardiac catheterization for him and come to find out, he had a 90% blockage in his heart artery (LAD) and needed a stent.
 
So, on Monday, I have an appointment with the cardiologist and I will set up the same test for myself.  I have some pain in my chest from time to time, but have been attributing it to costochondritis from the fibromyalgia.  However, the oxygen seems to help the pain and so does the nitro I took today.  hmmmmmm!  It warrants further investigation for sure.
 
For those of you who don't remember, I have fibromyalgia with the majority of my pain in my legs and feet and chronic lower back pain and I take oxycodone, lido patches and lyrica for the pain.
 
Anyway, that's the latest with me.  I will certainly continue to post more on my saga to let everyone know how I am doing.
 
God bless you all.  I'll be in touch.
 
Lindaloo
Moderator in Chronic Pain and Fibromyalgia Forums.

Believe in yourself. Be kind to fellow humans and animals. Take time to smell the flowers and the coffee.

And by all means, when you are down, ask me for help. I will be there.


Linda

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2261
   Posted 4/27/2012 8:24 PM (GMT -6)   
Hi Linda I'm sorry you have to have oxygen during the day as well, but I'm glad that it is helping you so much. I wish you good luck with the test and getting the bi-pap settled down to where you can tolerate it. Please do keep us updated on how you're doing.

I'm sorry about your husband having the blockage. I will keep you both in my prayers.

love and hugs
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees
Meds: Fentanyl patch, oxycodone, otc: BenGay, Tylenol Arthritis on occasion

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3694
   Posted 4/27/2012 8:57 PM (GMT -6)   
Hi Lindaloo I am sorry that you have severe sleep apnea! But wecome to the club. I do have a few questions for you, have you mentioned to them that your on pain medications? Many opoid pain meds can cause Central Apneas  these are very difficult to treat and normal CPAP and BiPAP will not effectively treat Central Apneas, ( although they often will set you up first with one or both of these machines, but it is a waste of time!) The only effectively way of treating Central Apneas is with an ASV Machine. Both the major manufactures of PAP machines make them. I am on the VPAP Adapt SV machine, these machines are specifically made to treat central apneas, along with regular obstructive sleep apneas. I also am on Oxygen with it at night I have 3 liters of O2 bled into my hose going into my mask.
 
Anyway I will tell You Linda that adjusting to using the PAP machine and mask was  and is the most difficult thing I have ever had to do! It is like having a thousand mile and hour wind blowing into your nose and mouth all night long! But with that said I forced my self to use the machine every night all night long! It is so important! and I can not stress that enough to you! I know how difficult it is, but you must adjust to it and use it, it will save your life in the end! Sleep apnea, can cause weight gain, high BP and even diabetes, and a host of other medical conditions, and it can even kill you. ( if not by having a stroke or heart attack in the night while you sleep, you could fall asleep at the steering wheel of your car, and get in an accident!) I know my doctor said ir wasn't a question of "IF" I would have a stroke /or heart attack in my sleep it was just a question of "WHEN" !!!! As my O2 sats would go down in the low 60's and stay there for prolong periods of time when I sleep with out my machine!
 
If I can be of any help to you with this PAP stuff  just let me know! I do hope your husband is ok coming out of this procedure, stints are getting pretty common, now days, but it is still a big deal in my book!
 
I wish both of you all the best and Good Luck to YOU!
 
White Beard
Moderator Chronic Pain
After spending nearly 22 1/2 years in the USAF, I retired in Sept, 1991. I then went back to school and became a licensed RN in 1994, and I worked on Oncology and then a Med Surg Unit, I became disabled in late 1999 and was approved SSD in early 2002!-- DDD, With herniated Disk at T-12 and L4-5. C5-C6 ACDF in Sep 2009, C6-C7 ACDF in Mar 1985, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications:Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV I am White Beard with a White Beard!

Lindaloo
Veteran Member


Date Joined Sep 2006
Total Posts : 1713
   Posted 4/28/2012 6:26 PM (GMT -6)   
Thanks for the replies, you guys.
 
I have been told I have significant obstructive and central sleep apneas and many of them during the night.  This is why the doctor is working with me to get adjusted to it.  I will do as you say, Whitebeard, and make sure I get adjusted to it.  I hear how important it is.  I will ask about how low my O2 drops while I am asleep and the risks of having strokes.  I know he asked me if I have ever had brain strokes.
 
We also know about the oxycontin and my antidepressants having an effect on the sleep apnea.  Also, the dr. noted that he knew these meds were not going away any time soon either.  We have to work within the confines of my limitations too.
 
Thanks for always being there for me, Whitebeard and I also thank you Mom.  It is so appreciated.
 
Mario, my husband is doing quite nicely since the stent placement and has even lost 15 pounds.  I also went to my weight watchers meeting today and I have lost a total of  7lbs. as of today.  I am thrilled!
 
I will continue to let you know how things go.  I have an appt with my cardiologist on Monday.  I am thinking that a cardiac cath might be in order for me as well.   We will see. 
 
God bless.
 
Lindaloo
 
Moderator in Chronic Pain and Fibromyalgia Forums.

Believe in yourself. Be kind to fellow humans and animals. Take time to smell the flowers and the coffee.

And by all means, when you are down, ask me for help. I will be there.


Linda

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3694
   Posted 4/29/2012 11:35 PM (GMT -6)   
Linda I hope your appointment with the cardiologist goes well! I am glad things went well for your husband.
 
Your in my prayers, may God's peace be with you!
 
White Beard
Moderator Chronic Pain
After spending nearly 22 1/2 years in the USAF, I retired in Sept, 1991. I then went back to school and became a licensed RN in 1994, and I worked on Oncology and then a Med Surg Unit, I became disabled in late 1999 and was approved SSD in early 2002!-- DDD, With herniated Disk at T-12 and L4-5. C5-C6 ACDF in Sep 2009, C6-C7 ACDF in Mar 1985, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications:Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV I am White Beard with a White Beard!

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 4/30/2012 8:16 AM (GMT -6)   
Prayers are with you Linda. Hope things go good at your appointment today.
Many well wishes to you..
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

Lindaloo
Veteran Member


Date Joined Sep 2006
Total Posts : 1713
   Posted 5/1/2012 1:36 PM (GMT -6)   
Well, I went to the cardiologist's ARNP and she believes my symptoms and quality of life warrant a cardiac catheterization, so Monday at noon, I am scheduled.  Please, those of you who pray, please pray for me.  I am hoping all goes well.
 
I have my granddaughter's first Holy Communion on the following Saturday and I am making her dress.  I am hoping I have enough time to complete it.  Everyone says, don't worry, they can always buy a dress, but this is a once in a lifetime event and sewing is my gift from God, I feel, so I want to be the one who makes it for her.  She is my precious light, my Kelly.  (I also have my precious Anna too, who is my light as well.)  When she turns 8,  I plan to be there to make hers as well.  God willing.
 
So tomorrow is the sleep trial with the mask during the afternoon, while I'm awake and Monday is the cath.  I am a faithful woman and know it will all go well, but I will let you all know anyway.  Thanks for being there for me.  I so appreciate it and all your comforting words.  I need them!!
 
God bless everyone in Healing Well.
 
Lindaloo
Moderator in Chronic Pain and Fibromyalgia Forums.

Believe in yourself. Be kind to fellow humans and animals. Take time to smell the flowers and the coffee.

And by all means, when you are down, ask me for help. I will be there.


Linda

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16284
   Posted 5/1/2012 1:52 PM (GMT -6)   
Hi Linda, try to calm down about the cath, I had one done on an emergency basis and I was terrified. I have to say, I got all worked up for nothing. I was given some sedation and it was a pain free procedure and I remember watching it on the monitor, lol.

We will all keep good thoughts things will go well with you. Try not to stress I know you are afraid..Take care
Susie
Moderator, Chronic Pain Forum & Psoriasis Forum

Lindaloo
Veteran Member


Date Joined Sep 2006
Total Posts : 1713
   Posted 5/1/2012 2:10 PM (GMT -6)   
No, not really afraid. I've had one before about five or six years ago. Just hoping they find something so that they can correct it and my breathing will be relieved. I don't know what to think really. On the other hand, I don't really want them to find a blockage either. That's what I'm nervous about. Also, that I am having chest pain. ?????????? Best to check it out I say. But thanks for the encouragement. Susie. You're a doll!

Lindaloo
Moderator in Chronic Pain and Fibromyalgia Forums.

Believe in yourself. Be kind to fellow humans and animals. Take time to smell the flowers and the coffee.

And by all means, when you are down, ask me for help. I will be there.


Linda

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 5/1/2012 6:17 PM (GMT -6)   
Many well wishes and Prayers for you...
You'll do a great job with the dress...
Keep us posted, we do truly care...
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

blandyjoes
New Member


Date Joined May 2012
Total Posts : 1
   Posted 5/13/2012 10:13 PM (GMT -6)   
Hi Lindaloo.., I am sorry that you have severe sleep apnea. I am sorry that you have to have oxygen during the day as well, but I hope that it is helping you so much. Don't worry Lindaloo everything will be alright with in few days. Be strong and take care.

Post Edited By Moderator (Momto8kids) : 5/14/2012 12:23:57 AM (GMT-6)


Lindaloo
Veteran Member


Date Joined Sep 2006
Total Posts : 1713
   Posted 5/14/2012 9:13 AM (GMT -6)   
Thank you so much, joes. I am honored that you responded to me. Welcome to the forum. I hope you continue to post. Let us know more about you.

Just to let you all know, I am having quite a time with this sleep apnea stuff. The mask at night hurts my face and for the last three nights I have had difficulty falling asleep and then I wake up at 3 am, not able to return to sleep with the machine and mask in place. I am feeling very tired during the day too.

I called the company and we are going to try the nose apparatus that fits in your nose like the oxygen cannula. They tell me I will have to wear a chin strap with that also, to prevent me from breathing through my mouth. Geesh, I am having quite a time of all this.

I will keep you posted as to how I do with all of this. Thank you all for your prayers and your interest. I appreciate it so much.

Lindaloo
 
PS  I had the cardiac catheterization and did well.  They found nothing wrong.  Praise God!  Thank you all for your prayers.
 
Kelly's communion was Saturday and I finished making her dress.  It was spectacular and she had the best time and it was a wonderful day for her.  I am so happy to have been able to be there and enjoy the day with her.
 
Moderator in Chronic Pain and Fibromyalgia Forums.

Believe in yourself. Be kind to fellow humans and animals. Take time to smell the flowers and the coffee.

And by all means, when you are down, ask me for help. I will be there.


Linda

Post Edited (Lindaloo) : 5/14/2012 9:18:37 AM (GMT-6)


tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2024
   Posted 5/14/2012 11:42 AM (GMT -6)   
Sorry to hear you are having a hard time with the cpap machine Linda. Hopefully the nosepiece will work better for you.
Glad you got to finish Kelly's dress and enjoy the ceremony. I know how special those events are. When my grandchildren were baptized in Feb. I was all tears and full of emotions. Such a beautiful day for everyone.
 
Take care
Suzane

Lindaloo
Veteran Member


Date Joined Sep 2006
Total Posts : 1713
   Posted 5/14/2012 3:20 PM (GMT -6)   
Before I started on the enterprise of the communion gown, I finished the quilt blanket and other items I have for you Suzane--for you and your grandchildren. It is all packaged up and addressed and sitting in Linette's car. I am just waiting for her to mail it for me. Hopefully, that will be this week.

I will let you know.

God bless.

Linda
Moderator in Chronic Pain and Fibromyalgia Forums.

Believe in yourself. Be kind to fellow humans and animals. Take time to smell the flowers and the coffee.

And by all means, when you are down, ask me for help. I will be there.


Linda

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2261
   Posted 5/14/2012 4:18 PM (GMT -6)   
Aww Linda I'm so happy for you that you were able to get Kelly's dress done and were able to enjoy the event with her. I know you were a proud grandma and that she loved her dress.

I sure hope your dr can find a way to help you be more comfortable with the c-pap. Take care.

love and hugs
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees
Meds: Fentanyl patch, oxycodone, otc: BenGay, Tylenol Arthritis on occasion

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 5/15/2012 10:34 AM (GMT -6)   
So glad there was nothing wrong with your heart, a big relief...
Sorry your having a hard time with the CPAP, but you will find one that
will work for you, they have many out there...and your energy levels should be getting better
with the oxygen...
Prayers and well wishes...
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******
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