|
Post by ozboy on Aug 30, 2016 20:17:22 GMT -5
Hi guys..everything is a brand new learning curve....as i prided myself with high saturation between 97-98 no matter what, all was good using PLB to blow off the CO2......but as my 3 recent hospitalisations in dec, feb and june..i think....i dropped 4% from 22% to 18% so my lungs were not doing it's job as well.......this led to possible pulmonary hypertension issues and had an Echo ultrasound that came up with no clear result, so they said my heart was ok. in fact i kept telling them it was beating too fast and my pulse was always in the 100's....my BP has always been fine but that is not connected directly to an over compensating heart.....now on oxygen they reverse the ok to beating too quick n need to go on meds to slow it down....
So till the 8th. when my pulmo re assesses me my instructions were...keep oxygen between 90 -92....at rest n room temperature.....turn off oxygen when at that level n monitor via oximeter......if i move my sats drop like a rock so back on oxygen till i once more sit still n repeat the off oxygen scenario....any thoughts of walking is out of the question as i am way to weak to even pull the oxygen portable cylinder......
So for now it is getting used to low oxygen levels, not panicking if i feel breathless as it is my mind sending out warning messages and just do as i was told.....anyway i am still alive and shall push on but hell yeah..i admit im pretty scared ha..........
|
|
|
Post by judi on Aug 31, 2016 12:21:04 GMT -5
You have really had a time Ozboy, glad you are doing better! Yes, keep those sats between 90-92%, I retain CO2 as well and keeping sats low really helps a lot. I am not sure I understood it all correctly because its complicated but I think when your red blood cells are bonded with too many O2 molecules there is no place for the CO2 to bond and be removed. More is not always better for some of us.
|
|
|
Post by jarca on Aug 31, 2016 18:28:03 GMT -5
my goodness Peter; a pulse in the 100's!!!! gosh your heart was working hard! I hope as your body gets used to having 02 your pulse will settle down! I have heard of other people on 02 say they need to keep their 02 around 90-92% so that sounds like you're on the right track. I assume your pursed lip breathing still helps now too? Do you get a home concentrator also? with that you can run 50' of tubing & be able to get around better in your home (just be careful not to trip on the line) = i set up my 02 in my living room, which is the middle of the house & with my 50' of line i can reach every room & to my back door that everyone comes to with 2 feet to spare. so i can go sit on my front porch easily but can't go out on my back porch unless i switch to my portable. Amazing how fast we lose muscle tone isn't it? my prayers are with you. (sometimes i've had to start over with just a few steps every hour or so & add a step every couple of days; gaining muscle is so much harder than losing it ---& remember to eat your protien btw; after my last illness my pulse was in the 80's which is high for me. ... today it went back to normal 59bpm so i'm happy to see i'm getting back to normal again..... you've gone so long with a high pulse, did they say what a good pulse may be for you?
|
|
|
Post by ozboy on Sept 3, 2016 20:21:06 GMT -5
Thanks guys.....i have no idea yet how to keep my sats in the lower range...except by oximeter and then you get paranoid checking all the time....if i sit on 1 ltr oxygen it can go up to 96-97 pretty quick so then i need to turn off oxygen.....is that correct or am i getting too worried??? That is my main problem...the retension of CO2 n with such a low LF i do not think i will need do a PFT again....all i must survive with is my ability to function, not get an infection and do not let my CO2 build up like the last month when i ended up on NI Bi-pap....i mean how does anyone avoid getting sick with such a compromised immune system.....a big ask or miracle in itself......ha.
Jarca my pulse rate has always been high but no one seems to be concerned....not sure if i mentioned before my pulmonary hypertension echo, was interpreted as negative findings or in other words they could not investigate too accurately......now i am told that yes...my heart rate is well over compensating and need meds to slow it down....
I am totally lost until i see my own pulmo on the 8th. n no idea how i am even going to get there in the current condition.....what a stuff up...xxxx
|
|
|
Post by David on Sept 3, 2016 21:00:47 GMT -5
I sure wish I could help but I don't have the retension of CO2 problem. So I don't have a clue.
There is a lady I see at exercise sometimes and she is the only person I know of that retains CO2.
She comes in with her portable oxygen concentrator and does her exercise. I just know she is different than me and has to keep her oxygen lower than mine.
If I see her again I will ask. I also can talk to the nurse there and see what she says. I am curious now about this.
|
|
|
Post by lavishgail on Sept 3, 2016 22:14:54 GMT -5
Like you David I have no clue? What is co2? Anyway hope you get fully better ozboy.
|
|
|
Post by ozboy on Sept 3, 2016 23:31:33 GMT -5
Here is what retension of Carbon Dioxide is about.......you often hear the word ''retainers'' used. In fact everyone retains a little, so the proper word is ''Gas Exchange'' issue. I have been diagnosed as a ''True'' Retainer thru numerous episodes including oxygen saturation always in the high 96-98% at rest or exercise (which may drop to around 94% like exertion or 6MWT) and countless ABG's......the downside is for years we dealt with this by purse lip breathing doing the exchange >>>getting rid of the excessive build up of carbon dioxide......as the disease progresses and lung function deteriorates, the lungs can no longer do this plb so the carbon dioxide builds up to levels that can send us into respiratory arrest......like my previous stay a week before i was re admitted this time, because i caught this flu virus when in there..... www.easyoxygen.com.au/i-have-been-told-i-am-a-co2-retainer/
|
|
|
Post by David on Sept 4, 2016 12:25:01 GMT -5
Ok, I can see were I can retain CO2. I always felt like I did to some extent. I see I am not a 'true retainer'.
I have always heard it was dangerous to be a CO2 retainer.
|
|
|
Post by jarca on Sept 5, 2016 21:45:27 GMT -5
good info ozboy. I think you have us all wondering if we could be a "retainer" now. I looked at all of my past PFT's & only 1 had a note that I had "possible air trapping". However, back in 2013 I had a ABG because I wanted to see if it was causing my pain; according to that my C02 numbers were in high but, normal range. However they had me remove my 02 for the test so my 02 was low in the test; is that normal to take it without your 02 on??? Being so many years on 02 & told to keep mine Sp02 around 94-96%, I guess I would have known by now if I were a retainer? Interesting stuff & I think you have us all wondering if we are now I have more of a problem keeping my 02 high enough, because I constantly forget to turn it up when i go do something. It is such a pain that I only need 2LPM when I'm sitting but anywhere from 4-6lpm if i move. (my home concentrator only has a max of 5LPM so i have to be careful wearing that) my portable 02 has a higher range LPM output so i'm good wearing that doing housework or work out doors. I tried a battery operated regulator that was called "smart dose"; it "sensed" my inhaling more & automatically turn up my LPM accordingly. Unfortunatly, with my work out in the dirt so much I seemed to break those. Also, they only go to the 5LPM max & the pulse regulator I use can go as high as 6LPM so when i am doing hard work outdoors it seems to work better for me = as long as i remember to turn it up It is really nice if your 02 supplier has them that you could chose; www.drivemedical.com/index.php/smartdose-mini-auto-adjusting-oxygen-conserver-300.html
|
|
|
Post by ozboy on Sept 9, 2016 9:48:09 GMT -5
My latest update and i feel i am well on track again......Thanks for all the support...
Yesterday my visit to see my Pulmo went really well. As I was his last case for the day, there was no hurry and spent over an hour with him.....By the time we left the unit had closed for the night so could not book my follow up appt. in 1-2 months suggested.
My quick spirometry showed a big decline in lung function which i expected but he also put it down to the fact i was still in early recovery.......I am to continue the Oxygen but mainly on activity and not use it at rest as long as saturation remains in the 88% - 92% but he was not fussed if it crept over as long as it dropped back at this point due to CO2 retension issues....After i get thru all the new tests he will do a complete assessment re oxygen needs....When tested in his office and i was on no oxygen my sats were 94%
I am on Pred again for 2 weeks at 5mg/day, Clarithomycin Antibiotics daily for 3 months, Bone density individual testing as beginning of Osteo in Lumbar Spine n Left Hip, showed up in Dexa Scan and Need a blood screening test and management with either Bisphosphonate or Denosumab....
Echo Scan showed 0.9 Nodular Focus or possible Mucous Plugging or Carcinoid Tumour, Trachea extended but Pleural Spaces are clear and no Pneumothorax, to be reviewed in 4 months....
So good to go...Cannot wait to go driving this arvo to see my GP as i have run out of Morphine and Alpraz....Now i know what is going on, i can now get on with my program instead of worrying about things like before.....
BTW the hospital staff have a lot to answer for when i was first treated on ward by ''Selective Quoting'' both my Pulmo n GP in order to defend their use of the Optiflow and with holding my Alprazolam that shut my body down for 4 hours, only to be revived at midnight by the nurse doing the vital stat round....My sats were on 82% and the Opti was immediately removed and from then on i was allowed oxygen and my anxiety meds. But the damage had been done already...
|
|
|
Post by John on Sept 9, 2016 16:23:38 GMT -5
Thanks for the good info oz . About 2 years ago now I had a 2 week cold bronchitis exacerbation and my fev1 dropped and it took a year to regroup . Six mo.s after I went on 2 lt of liquid 02 @ night and as needed in the day time . My delco rate is still half way decent for having a 23 fev1 reading . I have found the super flu shot and the pneumonia shot make a big difference in my case . Now good for me o2 wise is around 92 to 95 . thankyou
|
|
|
Post by ozboy on Sept 9, 2016 19:14:17 GMT -5
Yes i was told it would take a long long time....I suspect my LF is around 15% minimum as before the last 2 hospitalisations which were no where near as scary as this last one, i was sitting on 18%.....But no point worrying about something you cannot fix except dust off and get on with life......
This disease sure pushes you to your limits.....ha..
|
|
|
Post by jarca on Sept 9, 2016 19:55:52 GMT -5
Ozboy, you sound so much more positive today that it must have been a good visit with your pulm. I am so glad you are back on track again. WELCOME BACK!!!!!! ((((HUGS))))
|
|
|
Post by jarca on Sept 9, 2016 20:06:41 GMT -5
ps. osboy, when they did your bloodwork did they check your vitamin D level? In 2012 I showed osteoporosis @ the "fracture level" when i had bone density scan. in my bloodwork it showed I was Vit D deficient. I 1st tried 1000iu of supplemental D3 & it went up, but not high enough.....so i went ot 2000iu of D3 & that showed good in my next bloodwork. well, last October (2015) i had a bone density scan done again & I had improved!!! I now only have "osteopenia"!!! I had no idea that bone density can improve, but it can. It is usually blamed on having low calcium, but my problem was that the calcium I was getting wasn't being absobed; hence the need of D3! So it might be worth asking your dr about. --- I don't know why plain vitamin D doesn't work & that it has to be D3, but it does. Also, I am seeing where many calcium supplements now have D3 included (here in the USA) so a person doesn't have to buy the calcium & D3 seperate (my experience, but I learned something new so thought I would pass it on. )
|
|
|
Post by lavishgail on Sept 10, 2016 4:53:05 GMT -5
I am all so new to this! As I said be4, I didn't have a very good doctor. But isn't 98 a very good reading? Like almost perfect? How can you're 02 level go to 18% ? I'm so lost here. I just know if I'm down below 90 I'm bad. Or even for me 92 is getting very bad. I have to stay in the 90"something is all I know.
You sound like a doctor Peter? I feel so lost, aboutique my own disease, but that's bc they are two. And both of my doctors Lupus and pulmonary are working together to find what is happening to me? I wrote some of it in Fridays post. Good luck Peter.
|
|
|
Post by ozboy on Sept 10, 2016 7:50:47 GMT -5
Hi guys......I was first diagnosed i think in 2011 and was already at 36% Lung Capacity.....that's when i started to teach myself about COPD n what meds to take.....at around this time i met Jarca and others who were part of a very knowledgeable group on a forum, so basically i was forced to learn and be pro-active early..... Jarca...The Osteo is being investigated thru blood test to identify any of the following that might be causing it....Cannot read the writing but it says.....Liver Function......FBE.....VELL.....Testosterone.....Vit.D.......I normally take 2000 ICU Vit.D3 daily... Gail.....Your Oxygen saturation is basically how much of it is absorbed into your blood.....100% is the maximum and 88% is considered the lowest re-safety. So anything over 88% is good.... Your FEV.1 is your Lung Capacity Number >>>It can vary for all people with or without COPD.....For us i think around 40-50% is generally Lung Disease....So anything under 20% then it is considered in the danger zone.....This is what your PFT or your Chamber Test will record.......among other figures which the DLCO is very important......Diffusing Capacity of Carbon Monoxide.... www.khanacademy.org/science/health-and-medicine/respiratory-system-diseases/emphysema/v/dlcoAll very confusing...ha.xxxxxx
|
|
|
Post by jarca on Sept 10, 2016 16:21:34 GMT -5
Gail; the 88% or better reading is the one we get from our oximeter that we watch to make sure our blood oxygen level is okay. Peter is referring to the numbers that are on our "Plumonary Function Test" (PFT). (There is also a "spirometry" test, that doesn't put you in a glass booth; you just sit in a chair and breath out into a tube. I does not give the DLCO & some of the results that what I call the "in chamber PFT" gives you) Ozboy; that is a really good video that explains DLCO in nice simple terms. My "Fev" numbers aren't as bad as many copd people have shared (you for instance) so I was always confused why I needed to wear oxygen when others didn't. Finally, my Pulm explained that I inhale 02 & I exhale (FEV) 02 fairly well, but the 02 that I get into my lungs doesn't get out of my lungs & into my bloodstream (diffuse). This "Quick Reference" on what the letters & results mean on a PFT test taught me a lot!!! (in simple terms) noairtogo.tripod.com/pft.htmI love this chart that someone translated from Pulmonary formulas to easy read english terms also. This is "self explanatory" on how to use; Attachment DeletedI'm sure this info will get lost here; what forum would be the best to post this info in the event someone wants to refer to it in the future. ps. One thing I have learned is I always get a copy of any tests I have had done. Having all of my information lets me refer back to it, but also when i changed my PCP and went to a new Pulm. I was able to hand carry all my records to the new Dr's for them to copy. ps. Ozboy, i'm glad to hear that you are on top of the bone density stuff with the D3; from my understanding prednisone can really be hard on your bones so extra calcium with the D3 sure can't hurt!
|
|
|
Post by ozboy on Sept 10, 2016 20:05:50 GMT -5
Yes Jarca...the years on Prednisone takes it's toll but i expected to be much worse as i do not have any physical symptoms of osteo yet.....Also i have a small unit that diabetics use to prick my finger and get my sugar levels checked regularly...Diabetes also can be a result of too many steroids...
|
|
|
Post by ozboy on Apr 10, 2017 18:00:54 GMT -5
Hi....This is a fast forward after all the other events that i have been thru since then to the present day.....I tend to not open up too much about my personal life as I find it very hard although I drop hints here and there...
I feel that all my life I have been supportive of everyone in my life and I am talking family...I have had to deal with a series of mind games from my 3 kids from the time they welcomed me home before i managed to get home from the Philippines, only to be denied meeting up as we had planned for so long....I had no idea nor do i have now...Not my psychologist either...it is my only one daughter with the Epilepsy n doing the current well publicised trial, for use of the Cannabis Patch and the one who is her father's daughter in every respect, that is very supportive, as long as we do not talk about her siblings and what the reason was of this sudden change in attitude...
It is almost 4 years now and my son who being a boy n first born got my total attention all thru his life, till i left the country in 08 for a break from living a life of lost identity...He not only was the most vocal about not meeting up for a coffee as we both planned but got married a few months ago, without so much as letting me know, let alone getting an invite...The photos and video of the ceremony was sent to me by my daughter....Did it hurt??? Yes very much so but I had already accepted that reconciliation, was not any time soon or in my life time...but to understand why and not getting any hints is what hurts the most.
My Wife/Carer i cannot fathom out although i have tried everything to get her involved in understanding my disease to no avail....It is a culture thing to live for today and not worry about tomorrow....I have done everything possible to the stage we rarely communicate now as i had to spell out a few home truths which she finds that i am the one who has changed..and now I need to put together plans to protect her from herself if i was to suddenly pass...
Taking of which...besides the swallowing and lack of sleep/fatigue....I am struggling to keep my resting saturation at a safe level for a few days now and am back to the old days of 97-98%, with this never ending obsession of hypoxia, hanging in my head space.....after a day/nite on sunday/monday i went into panic as the only option was blame my pulse erratic waveform for false readings on my oximeter or either get a referral from my GP n have an ABG thru a private Pathology Lab or go into Emergency....The last thing is needing to go into a hospital environment at this stage...
and Snowy..the only reason that has stood between me and doing something insane...He knows something is wrong and won't leave my side....At least a very close friend with COPD n lives close by has lost her older rescue, just recently and needs company for her new one, that was recently adopted as a companion, for the deceased doggie...She has told me Snowy would have a home with them if things came to a crunch...That took a lot of worry off my mind...
|
|
|
Post by joany on Apr 11, 2017 7:35:14 GMT -5
I wish I could wave a magic wand over you. You're an inspiration to many of us. Hope you have a renewed grasp of today - positive, a day at a time.
|
|
|
Post by lavishgail on Apr 11, 2017 16:22:17 GMT -5
This is what has been happening to me. My heart rate keeps going up but my 02 levels have been staying the same? I get my heart rate was so high last night from just walking to my room, it went to 145. But I layer down and maybe I had to much pop. It had caffeine in it so did my coffee. But it's very scarey.
|
|