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Did you feel like you needed supplemental oxygen?
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Jen, It is amazing what even a little bit of oxygen can do to perk you up. I wish just the oxygen would do that for me today. A little bit of background on me… I have Myasthenia Gravis, a neuromuscular disease that affects the muscles that control my breathing and also some other core functions like swallowing and elimination. Because of my MG, I use a ventilator at night and as needed during the day. I use a full face mask for the vent with the oxygen bled into the vent via a high pressure blender. Today, my MG is flaring and I’ve been on the vent since going to bed last night. It’s a real pain having to wear a full face mask as you can’t easily communicate and making in impossible to eat or drink with it on. Since I felt like I might be on the vent after waking up, I did place a nasogastric feeding tube last night so I could get some nutrition and fluids. I have these flare ups probably a couple-three times a month and they last for a couple of days or so. I do have some more severe flare ups, typically a couple of times a year, in which I have to be hospitalized and intubated for up to a week or so. My pulmonologist has been trying to talk me into having a tracheostomy as that would allow my to easily be connected to my ventilator and would allow me to eat and drink without having to use a nasogastric tube. I’m still on the fence about having a trach. I can see the many positives of one and the negatives of having to maintain it when I don’t need the ventilator. When not on the vent, I could cap it off completely and use my nasal cannula for oxygen or I could utilize the trach with an oxygen adapter and a speaking valve to that I could speak with it uncapped. Anyone have any experience with a tracheostomy, either personally or with someone you know? If so, I’d love to hear your feedback and recommendations.
Thanks,
Steph -
@stephanie you ask really good questions ! Thank you for your honesty and for sharing your story with us. It is so interesting to see all those impacted by PH but the different conditions that have caused them. I was tested for MG recently by my pulmonary team because of the similarities in what I’m going through with the breathing, use of the vent, respiratory muscle weakness, feeding trouble and the use of my feeding tube. I was told about the trach option but that is not something that we are discussing right now with my medical team. I know that for some, it really does provide a lot of relief. I am a part of a group online for central hypoventilation sydrome which is the sleeping condition that I have and need the vent for. They have always offered good advice about trach tubes and using them and getting used to them. Maybe others will have experience with this here though!
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Thanks Brittany. Do you have a link to the central hypoventilation syndrome forum? I’d like to read up and maybe reach out to them about having a trach. As much as I don’t want one, I’m thinking that having a trach might be the best choice for me overall.
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@stephanie it is a Facebook group for adults with sleep apnea. You can type in Adults with Sleep Apnea on Facebook and it should come up! The particular group that I am talking about it a congenital central hypoventilation syndrome group. So the kiddos were born with this condition and a lot of the parents are the ones that are on the group. Are there any MG groups too or support groups online? I know the online community really has helped me a lot
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Brittany, do you have central or mixed apnea?
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@stephanie I have both central and obstructive so it is mixed. What are you diagnosed with?
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Brittany, I have mixed also, but the majority is obstructive with just a small component of central. Enough that I have to have a vent/bipap with a backup rate in case the central apnea kicks in.
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@stephanie I find my vent to be way more helpful for this too with the backup rate ! When I am sick or have to take medication that may lower my respiration rate, I am especially grateful to have that equipment ! Were you snoring, is that how they first noticed your obstructive apnea? I don’t snore, I just stop breathing and breathe very shallow. I have been that way since I was a kid. My mom always checked on me while I was sleeping to make sure I was still breathing okay because my chest went up and down so slightly .
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Hi Brittany, I was first diagnosed with OSA and they later found out that I also had CSA. My Trilogy vent is set for a backup rate of 12. I too breathe shallow and often I will trigger the backup rate as I’m not breathing spontaneously fast enough. My mode is AVAPS which provides an average tidal volume of air at the minimum rate of 12 breaths per minute. The inspiratory and expiratory pressures vary in order to give the required minimum volume, but they are set at baseline high enough to deal with the OSA.
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This is good to hear all of the people describing how they feel when their oxygen is low. I know that my levels drop quite a bit. I am now getting chest pain too. So I am wondering if when on oxygen dose things like that leave? I don’t feel good enough to walk especially in the cold wind it hurts my lungs quite a bit. I have been on oxygen for about 20 years at night. I guess this is a question for my doctor. It’s is nice to hear how all of you feel when you oxygen is low and what you do about it. This a great place to get lots of information I am so thankful I found you people thank you.
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Hi @carol, yes, learning about others’ experiences is a huge help, I agree.
As far as chest pain going away, it will probably help, but I still get that chest pain and tightness often. But again, it may help you resolve that issue.
If you are on it at night, it will be easier to use it during the day. Can you ask your medical team if you can try it and see if it helps? You can call or use a patient portal for this. That way, you can test the waters, perse, and can report to them about any relief from it. Maybe try it a week or two. But, call and ask or let your team know. If something you already have will help, I think that is a win-win.
This is just an idea and what I would do if it were me. Please keep us posted.
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I am going to my cardiologist on the 26th of January but I don’t have a team or really anyone but him to talk to and you people now. I am going ask about using the oxygen through the day though and I will let you know what he is telling me. I am getting a new kind of mask for this virus for protection and it looks like one that I can breath threw so then I hope to be able to get outside once in awhile if the weather isn’t too cold and miserable. I am gaining weight because I’m not able to do anything and that is something I know I have to keep an eye on. I have got to do somethings to get everything back on line. Carol
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@Carol good luck on the 26th. I hope you and your doctor can agree to a plan for oxygen that will help. We have so many different typed of masks in our house now. We keep buying new ones and trying them out. I hope your new kind is both protective and comfortable for you.
My husband bough himself an under desk, mini pedal exerciser and his doctor, not knowing he already got one, recommended one to him yesterday. It’s basically just bike pedals that you can exercise with in a regular chair. He doesn’t have PH but other health issues that hinders his ability to exercise. If it sounds interesting to you discuss it with your doctor on the 26th before purchasing one.
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