Sats always dropping when moving
Hi there,
I’m writting for my grandma.
She’s had copd for a few years now and seems to be worsening, she’s been on home oxygen for just over 7 months now started on 5 litres and now on 12.
She has two home tanks to make up the 12 litres, the problem is that when sitting her oxygen levels and heart rate are fine, but if she moves or even goes the loo etc her oxygen levels can drop to 40/50/60 and her heart rate goes up to like 140:150, whenever she’s seen doctors/nurses/paramedics are always confused to how she can drop so low and look and act so normal?
There always shocked she’s on such high home oxygen when she looks okay,
It’s so frustrating because we have not really been given many answers other than she needs oxygen,
Haven’t been told what stage it is was told by gp there isn’t a stage ?
I just really want to know if there’s anyone out there that’s got the same issue or know someone with the same issue,
Because it’s clear she struggles to breath when active but when she has her check ups and tests nothing changed but she seems like she’s more breathless than usual
Answers would be grateful
Thank you x
Hi
, and welcome! I see you are a new member here, having joined today, just about 2 hours ago. We are glad to see you already engaging with the community through this, your first post.
To address your concern about the staging of COPD. Some physicians prefer to treat patients based on clinical appearance and symptoms, the patient's own narrative, and a basic physical assessment. Still other physicians prefer to assign a 'stage' for each person's individual level of disease and treat based on that evaluation. There is no right or wrong - it is a physician/patient decision.
I will say that an oxygen liter flow of 12 lpm is rather high, by any objective standard. I would be curious as to why your grandmother requires this high a flow rate. For some folks, oxygen saturation levels can vary throughout the day especially when the patient is mobile (even going to the bathroom counts).
My concern is similar to yours - grandma's level of breathlessness seems to be increasing (based on what you've shared here). This concern of yours really should be addressed by the medical team providing grandma's care.
All the issues you've shared with us here may warrant an earnest conversation with the doctors providing care. The physicians should be liberal with the information you are looking for. It may be time to be more assertive on behalf of your grandmother. What do you think?
Your grandmother is indeed fortunate to have such a loving and compassionate granddaughter such as you most clearly are!
Warm regards,
Leon (site moderator COPD.net)hi Leon,
Have been and spoke with consultants and drs to find out the underlying cause of this as I was most certain it wasn’t just the COPD, they did a heart scan which shown pulmonary hypertension.
Have done a lot of research and see this is very common with copd patients.
When speaking with consultants they explain there’s not much they can do as she is already on oxygen and because of where the copd is at.
They spoke with grandmother and explained it all and explained the dnr etc,
Now I’m just kind of wondering what’s next?
Is there a life span on this?
Does this get worse from now on I can’t seem to find much on this.
Very distressing to hear that nothing else can be done now I’m left in limbo, they did explain this is why her saturations drop rapidly when active because of the pulmonary hypertension so atleast that’s answered the question iv been waiting months for.
If you have any relevant information on this I would be great full
Thank you xHi again, johanna, and thanks for following up with the community and sharing this update about grandma. With a COPD diagnosis, often times there are other conditions/diseases that may accompany the chronic obstructive pulmonary disease (COPD) - these are most commonly referred to as comorbidities. It is uncommon for an elderly patient with COPD to have solely COPD so, it is not surprising that grandma has also been diagnosed with pulmonary hypertension. What is surprising (from my perspective), is the physicians providing her care do not seem to be very open about discussing all the aspects of grandma's case with you.
Since you are doing all the research here about her condition and health, I thought these two articles might provide you with some insight in regards to pulmonary hypertension.
First this one, which explains what pulmonary hypertension is: https://copd.net/living/pulmonary-hypertension-facts.
And next, this one, which speaks to the causes of pulmonary hypertension: https://copd.net/living/pulmonary-hypertension.
I do hope you find the information is helpful in a practical way.
Keep at it, Johanna - your devotion to your grandmother is heartwarming!
Leon (site moderator COPD.net)
I have a similar situation and the response from my drs was the same until this latest hospitalization(I got out 5 days ago). I will skip all the earlier history and say that I went in this time for swelling in my legs and leg cramps that would not stop. Many tests and a dr looking with a new pair of eyes found that my heart is not beat out all the way. This causes fluid retention which builds over time, not just in my legs, but everywhere. This affects my O2. That stay in the hospital, they drained 20lbs of fluid off my body and put me on daily Lasik's. Now that they know the problem they will keep an eye on my heart. I'm currently at 8L at home, at rest. If I go out I have to be at 10L to move around. Perhaps the biggest help has been they changed me from a high volume canula to what they call a pendant canula. It makes a big difference. By chance does your Grandma have significant swelling? Hope this helps some. Good luck and thank you for being a great family member and caregiver. she’s used to get the water retention yes, they found out few years back she had thickening of the heart which is what caused this.
Luckily this hasn’t happened this time around, but deffo keeping an eye on it,Hi frostie, and thanks for lending your own support and encouragement here. I am sure (and have noted, as well), that our fellow community member, , appreciates and has already acknowledged your remarks.
I did want to chime in here to advise those in our community (who may not know), the 'pendant' cannula is an oxygen conserving device. Depending upon the type being used, it typically facilitates a potentially higher oxygen concentration (for the patient), which may be able to be accomplished using less source gas, thereby conserving it. This goal can be dependent on a patient's oxygen requirement, and breathing pattern (rate and depth of breathing).
I am glad this works so well in your particular case.
If there is anything we can do to assist you, please let me or any other moderator / team member know. You are always welcome here!
All the best,
Leon (site moderator COPD.net)
Last year when she was in she had the dipping of her oxygen levels etc and I question hypoxia which they replied with yeah most copd patients will get this,
So nothing was explained since about that.
Will be questing more on that to consultant.
Is hypoxia a long term condition with copd ?
Have done quite abit of research on this,
It does explain that anything under 85% oxygen level is hypoxia level and should be dealt with as soon as possible is this correct ?
She’s had sats that have read like 48% after walking to another room before then when sitting will take like ten minutes to come back to normal levels,
Quite scary really, when drs/paramedics have seen her and her sats , sometimes there confused why she looks so we’ll considering in there words ( she should be blue) with the levels they drop.
Just a worrying time when we ain’t really sure if this is the last stage and her just deteriorating,
She’s currently been put on 10L in hosp with 12L when moving, ie toilet etc ..
When I mentioned the ear lobe I completely got it wrong I was ment to say she has her blood gases done from her ear and they never really say much back from that,
To be honest it’s all numbers and code talk so I wouldn’t understand what the results from that would be.
What does blood gases actually detect ?
What can they check for with this ?
Thank you
, I think these are definitely some great things to bring up at the next consult but in the meantime here is an article on blood gas that you might find helpful: https://copd.net/clinical/what-is-an-abg. All the best, Sam S. (COPD.net, team member).
