General questions due to copd and sleep apnea
Hey,
I haven’t posted in a while, I wrote on behalf of my grandmother before.
She had a few hospital admissions due to breathing difficulties,
She had her lung scans and there was no significant changes in the past 5/6 years, her breathing tests were pretty much the same,
She was placed on 15L and then over a week reduced to 10L, she for much better after steroids etc and was allowed to go home, as a family we did fight this as we did not think she should have gone home.
They said it was not end of life and she was mild/moderate.
Unfortunately she passed away 4 days later during the night,
She had a great few days and she wasn’t struggling as much and she felt better in herself, she went to bed and two hours later she was found on the floor slouched unresponsive.
Now I know I may not need to air this on here but I feel so alone, her post mortem revealed her lungs stopped first.
I’m so confused to why this would happen if she wasn’t at the end.
The fact she must have got up due to the breathing and then just stopped I can’t seem to wrap my head around this.
Can sleep apnea cause this combined with copd ?
As she was diagnosed with sleep apnea and never given anything to help with this so I’m thinking could it potentially have been sleep apnea that occurred and that’s what caused her to get up and possibly panic.
I just ideally want to know if anyone has experienced this with a loved one, as being left with no answers is very upsetting as what the hospital said did not match with why she passed.
Or if there any other reasons as to why her breathing stopped before anything else, she was able to get up out of bed and reach her phone.
I’m going out my mind with questions ,
I am so sorry for your loss. My deepest condolences to you and your family. I have no answers, but my thoughts and prayers are with you. Susan 
Hey, Johanna. I remember you from when you were here with us before -- so sorry to hear about your grandmother's passing. It's never easy, ever.
Of course, we won't be able to give you an answer about what exactly happened to her that night. We can only speculate, and I am reluctant to do that because I am sure you have done plenty of that on your own.
Steroids can make people seem very well for the time they are on them. But if they are not fully healed, symptoms can return when the medication is stopped.
But truthfully, as hard as it is, sometimes people just pass, even when it seems as though things are improving, and we don't know why. Has your family talked with her doctor and hospital team about possible causes?
I wish that we could provide some comfort to you. But I truly know what you are going through. I lost my own grandfather very suddenly in my teens while he was in the hospital with a broken leg. He was surrounded by medical staff, but he still died and there are still many unanswered questions. That was a big struggle for me as I grieved his loss. In the end, I had to make peace with knowing there was no answer to the "why" ... I couldn't change the outcome, but I could do my best to make him proud as I moved forward each day.
Take your time. It's okay to be mad, frustrated, confused ... it's all normal. But also, try to remember that focusing on the "what if" of everything will only cause more pain and confusion. Be kind to yourself ... try to rest with the knowledge that you gave your grandmother all the love and support you could. Hold on to those good memories, lean on the people who care about you, and continue to share her life (even with us, if you want!),
We are here for you whenever you want to talk. I'm sending you a hug tonight and holding your family in my thoughts. <3 -Melissa, copd.net team
Hi Melissa,
Thanks for taking the time to read this.
It’s so frustrating isn’t it when there’s so many u answered questions,
I really do understand her conditions and that things can go from good to bad very quickly,
It’s just the whole process of what the hospital said about her to what actually happened don’t add up I think that’s where the anger comes from.
Haven’t spoken with anyone yet,
I am in the process of writing emails to her consultants and professor that was dealing with her.
Pathologist advices me to go through PALS via hospital for more accurate responses and answers if possible so will go ahead with that.
I think each day is different, sometimes I feel fine like she’s still around then others are harder when you just want to pick up the phone and call them.
I know sometimes the answers we want ain’t gonna be the ones we get.
Xx
Hi again, johanna - I am sorry to be getting to this conversation late. I know we have had several conversations here within the community when you first started posting (about your grandmother), back in June.
I am so sorry to now learn of her passing. Please accept my condolences for your loss - I understand just how much she meant to you and how much you loved her.
I see my good colleague,, has provided a great deal of supportive information and suggestions for you (above).
After all you have been through, I was curious if there was an autopsy conducted for your grandmother? Not everyone believes in this type of procedure and it's not indicated for all deaths either. But, in some cases, it can answer some difficult questions.
Was this something you considered?
The loss of a close loved one can leave a true emptiness in one's life. I felt that way (and still do today!), over the loss of my parents so many years ago. The hole in my heart is still there to this day. As you said, so many times I just want to call them, or see them, or seek out their sage advice. It isn't there any longer for me. I have always lived in a way that I hope has made them proud of me and, my wife and I have imparted that to our (grown) children and also our granddaughter as she grows.
I am hopeful you will find peace and some resolution for yourself going forward.
We are always here for you!
Warmly,
Leon (site moderator COPD.net)
Hi
,
Yes I did,
Originally they just put her down for heart attack we wasn’t satisfied with this.
She had an independent autopsy, and the pathologist said COPD, he agrees lungs stopped before anything else.
If you remember me saying before how she went to hospital due to movement and says dropping increasingly low and heart rate increasingly high.
They were unable to identify why this was happening, steroids, nebulisers, mucolytics later she because abit more stable and again they still didn’t really know so they sent her on her way and booked in lots of out patient appointments.
They went over lung scans and more breathing tests and told us and her nothing has really change for 5 years so they were still keeping her at mild/moderate COPD,
There was no indication to them that this was the end or this was anything to do with her COPD.
Which is highly confusing for us all.
Pathologist says severe damage to lungs serve copd, so there for her lung surley must have been worser than what they were saying.
Just a quick question though,
All her discharge notes say something about sleep apnea which she always said she suffered from.
But she was never given any equipment for this,
So my conclusion is that could she potentially have had an episode of sleep apnea during her sleep with has restricted her airway to then help be the cause of death? Because her sats while sleeping etc where always at there best and that night two hours before they were good.
I know many people can’t give answers or even find answers to certain questions but there must be possible causes?
I am going to write to her consultants etc so try and get to the bottom of a few things.
Thanks
Johanna x
Hi Johanna, I also want to add my deepest condolences on the loss of your grandmother. The whys surrounding an unexpected death are the hardest. I hear how much the pain of the loss is compounded with the hospital sending her home when your family did not agree that was best. You have asked about untreated sleep apnea. The most common complications of untreated sleep apnea are with the heart. We have a sister site dedicated to sleep apnea and I found this resource about sleep apnea complications that you might like to read: https://sleepapnea.sleep-disorders.net/clinical/complications-and-comorbidities
Sleep apnea can also be an overlap syndrome with COPD. This article from our site gives some information about COPD and sleep apnea: https://copd.net/living/obstructive-sleep-apnea-cpapDid your grandmother ever go through a sleep study to diagnose her apnea or was she self-diagnosing? I diagnosed my husband with sleep apnea because I sleep next to him and could hear him stop breathing. But for him to be treated, he needed an official sleep study and diagnosis from a sleep specialist. My perspective was valuable for getting him started on the process, but it did not count as a clinical diagnosis! After his sleep study was done and he had an official diagnosis, he was set up with all the appropriate equipment. If your grandmother knew she had apnea but never pursued an official diagnosis with a sleep specialist, that would explain the lack of CPAP/treatment. But I cannot speculate as to whether or not untreated sleep apnea contributed to her lungs stopping and her unexpected death. Those would be good questions to direct to her doctors.
Please keep us posted on how you are doing and what you learn. Death of a loved one is so hard. It is okay to look for answers, but also remember to take the time you need to grieve. It is a significant loss and life will forever look different. We are here to listen and offer support as you navigate this new road of grief. Wishing you a gentle day. ~Allyson (COPD.net team)
