COVID-19 Mental Health Check-In

[Stephanie Mitchell]

???? I’m okay-ish

I’ve recently had to increase my oxygen from 2 to 4 LPM and I’ve started using tanks as my POC is maxed out and can’t really provide enough oxygen for me now. I’m going to get a home fill concentrator which will help. I’m sad that my disease is progressing and requiring more oxygen and losing the mobility my POC gave me. Now I’m having to pull a oxygen tank with me when I go out of the house and always have to have enough spare tanks in the car in case something happens and I’m delayed getting home and hooking back up to my concentrator.

I’m also coming to terms with the probability of when the COVID 19 outbreak dies down, I’ll be undergoing surgery to have a tracheostomy. I’m finding that I’m needing to use my ventilator more and more during the day, to the point that it makes sense to get the trach. I’m not happy with the idea of having a hole in my neck to breathe through, but I know that it’s the best overall solution to manage my MG. That way I can be on the vent as long as I want and they will fit me for a speaking valve to allow me to talk while on the vent.

[Colleen]

@stephanie it’s so hard coming to terms with the increasing need for supplemental oxygen. My heart goes out to you with both concern and understanding.

It sounds like you are torn between dreading the thought of a tracheostomy and anxious for the help and support that it will provide?

I’m so glad you joined the forums. I hope you are finding that it is a great resource and place to vent and receive emotional support. I am thinking of you.

[jen-cueva]

I am sending you positive vibes and hugs from Texas @stephanie. This is a lot on your plate at once. I am saddened to hear that you are progressing. I am hopeful that the home-fill concentrator will help some. Pulling those big tanks around is just too much when you are already struggling.

As far as needing a tracheostomy, this is not what anyone would want. But, try to remind yourself that although this may be a reality, it will help you. It sounds like you are accepting of this because you know this is needed to improve your overall health. This does not mean that this is easy to accept. Remember that you are not alone, and we are here for support. You have been a great addition to our forums. We are happy that you are here and hope that you find the support that you need.

[Stephanie Mitchell]

Colleen and Jen, thank you for your kind words of support. One of the things I’m dreading the most is if I’m needing to be on the vent and still need to get out of the house for some reason (Dr. appt, groceries, etc.) I don’t know how I’ll be able to manage taking my oxygen and the vent with me at the same time. I might have to get one of those fancy self propelled wheelchairs so that I can attach my vent and oxygen to allow me some mobility. Of course that comes with the added complications of transporting the wheelchair around, needing a dedicated van and probably someone to go with me when my husband isn’t available.

Another big stressor will be learning to speak with the trach and speaking valve. I know that a speech pathologist will work with me, but I’ve seen videos of trach patients with the valve, who are experienced in using it, saying it alters the sound of their voice.

[jen-cueva]

Hey, @stephanie, that does sound like it may take some planning and creativity. I did not even think of that. It looks like you have been thinking ahead. You sound like such a planner. What area did you work in before PH? By reading your posts and questions, you seem like you would be some type of planner.

I hope that when and if that time comes, we can offer support. I have not had a trach myself, but have taken care of them several times. Learning to talk with it is also something new. Please know that I am thinking of you and sending you hugs and positive vibes.

Has the increase in oxygen helped any?

[Stephanie Mitchell]

Thanks Jen. Before my health issues, I was a pilot in the Air Force Reserves and for a major airline. I’m fortunate the I have both the Air Force and airline disability plans. Also, my husband is an engineer for an aerospace defense contractor. A pilot is always thinking ahead and considering “what if” scenarios in case anything unplanned happens during the flight. So I guess that carries forward in my everyday life.

My sats with the increased oxygen are holdings ok for now. My doctor is saying that she expects my PH to continue to progress and to expect to be needing progressively more and more oxygen over time.

[Brittany Foster]

Hi Jen .

Something really interesting that was brought up at my therapy appointment this past week is the reaction to this unknown that I am having with the covid19 talk. It is very similar to my trauma responses. It has been triggering for my trauma because of that feeling of lack of control. This is something that my body tries to fight against and my mind. I always think of ways that I am able to control a situation, even if it seems out of reach. This time though, it really does seem not in my hands to fix or make better. This is something that I have always struggled with. Do you also struggle with feelings of not being in control during this time?

[Brittany Foster]

Hi Stephanie @stephanie you show a lot of strength by putting that you are “okay-ish” in these circumstance . It really sounds like your body is fighting through a lot right now. I know that it is so hard to come to terms with yet another medical procedure, recovery, and a shift in what is “normal” after all is said and done. It seems like you have the right attitude and you are focusing in on all of the ways that it can help you to get this, even though it is painful to know that this may be necessary. I know you are doing all you can!

[Brittany Foster]

@stephanie has your medical team ever mentioned an NIOV machine to you before? It is like a portable vent and looks more like an oxygen machine than a vent with the tubing in the nose, although it is bigger than regular oxygen tubing. I am wondering if something like this may be helpful for you when you have to be more mobile and do things like going to the store etc. Take a look at the machine and what I’m referring to. This was suggested for me almost a year ago but I think if you bring it up to your team it could be a good convo to have!

[Brittany Foster]

@stephanie I guess that’s one good thing about being accustomed to worst case scenarios, or at least thinking about preparing for them. I know that my own anxiety has kind of prepared me for declining health and worst case outcomes so that the blow doesn’t feel as bad when it comes. If that makes any sense LOL! But sometimes my anxious thoughts can definitely be helpful when I prepare myself in advance of the bad outcome.

[Stephanie Mitchell]

Hi Brittany. Thanks for the link to the NIOV machine. It looks like a great option for those patients whose disease can be helped by it. In my case though, the max inspiratory pressure it provides is just 18cm of h2o. That is not enough to meet my needs. I need a minimum of 25cm of h2o.

I’ve always planned for the worst and hoped for the best. In fact, I’m going to contact my doctor tomorrow and see if she can get me scheduled to do my tracheostomy. I know it’s inevitable that I’ll need it and I’d rather get it now before the peak COVID-19 hits sometime later. The hospital that I go to is one that should have beds available as they are still doing some elective procedures as they are a private hospital and have a higher caliber clientele.

[Brittany Foster]

Stephanie,

I’m glad that you are going to make that call to your doctor’s office. It seems like a hard decision but one that you know is going to happen. You have to way the risks and benefits and it seems like you would get more benefit from it which is something that you really need right now. I hope they are able to schedule you with everything going on with the virus and that you dont have to wait too long. Keep us updated please.

[jen-cueva]

Wow, @stephanie, thanks for your service. That is amazing! I am sure that between yourself and your engineer husband, things are all planned out. My “son-in-love” is an engineer, and he has plans A, B, C, and probably to Z. I love him for that, and he is a special guy. I can certainly understand more about you and how well you adapt and cope with things.

I am sorry to hear that your doctor thinks that your PH will continue to progress. I am guessing this means fast as your discussion about the trach. You amaze me at how well you are coping despite everything on your plate. I’m sending you big air hugs from Texas.

[Brittany Foster]

@jenc the strength of our members always amazes and encourages me to keep pushing forward. Thank you for sharing of your difficult decisions but also knowing that is will probably be the best choice for you. I know that is hard to deal with and hard to think about. Doing what’s best and necessary is always challenge if getting there requires extra work! At least that’s how it feels for me in these moments, but the end result is worth it .

[jen-cueva]

Hey Brittany, I am sure that you are having a difficult time with fear and anxiety. I just shared my recent column about my anxiety related to life’s uncertainties. With your PTSD and trauma, I would think that this would be more of a struggle. I am happy that at least you are doing phone or virtual appointments with your therapist. I am, too, thankfully.

Lack of being in control, once again, certainly is scary, but I know that we will get through this, too. I am sending you big hugs from Texas.

Thanks for the tips that you shared with Stephanie. I agree; her strength is incredible!

[Brittany Foster]

@jenc thanks so much! I am thinking of you too and all your encouragement really means the world to me. I am thankful that we are living in these times where we can easily connect with phone or face time appointments or something if we need to. A lot of my offices have been good about transitions to tele health visits !

[jen-cueva]

Hi @brittany-foster, Thanks, your ongoing support, and encouragement is appreciated. I agree I don’t know what we would do without the technology that we have today. It is making this quarantine more feasible, for sure. Most of my appointments have transitioned to tell health, too. Now, if only my labs would be over the phone. Hehe

I usually do labs every 2 weeks at a minimum, I went 2 weeks ago and now trying to wait it out. But, I may have to start back soon, per my doctors.

[Brittany Foster]

@jenc I could see how this would be challenging, especially when you want to stay as safe as possible but you have to go and get your labs done. I just went to my first in person appointment. It was the first time I have been to an office in about 3 weeks and that is somewhat of a record for me! It was only for a first patient gyno appointment though, nothing too exciting. And that’s one of those appointments that would just be awkward to do via tele health hahahaha!

[jen-cueva]

@brittany-foster, thanks for a laugh! I just spit my tea out! -Hehe

I am certainly happy that that gyne appointment was not virtual. I understand how you feel about appointments. I usually have at least 1 every week, so it is a considerable change. I am going to have to go for labs within the next 2 weeks, so I will mask up and go in early and out.

I hope that the gyne appointment went OK for you. I mean, we all know that it is never fun. I hope that the doctor is a good fit since you said it was a new appointment. Did you like him/her?

[jen-cueva]

Hey y’all, I know times are difficult, and many are having increased anxiety and depression. Social distancing is causing an increase in loneliness. Please remember that your other forum moderators and I are here.

I wanted to check-in because I’ve noticed, many of our members have been MIA. Please let us know how you’re doing. We are thinking of everyone and your safety.

@jimi, @carol-alexander, @becca, @texas2018, @margie-novak, @robin-webster, @christopher-cassata-bobby-shows,@stephanie @vanessavaile, @ksmith610, to name a few.

[Vanessa Vaile]

More later, on my way to Zoom meeting of YuCo & Friends Indivisible Group steering committee meeting. I’m keeping busy, informed and sharing (alt nom de post is Guerrilla Informationist). Today is a 3 Zoom day: above meeting, weekly Future Trends in Education Forum and an evening live poetry reading and open mic from NM (where I was an active poetry blogger before moving to NM — still maintain a poetry Facebook page). Since today is Earth Day, I intend to post about that across poetry, education, advocacy and community networks as well as getting in another mile plus walk. Recently I volunteered to text bank for National Nurses United’s COVID-19 RN support project.

In other words, not to worry. btw I do get and read email updates on posts, and will try to check in more often.

[jen-cueva]

Wow @vanessavaile! You amaze me in all that you’re involved in. I’m happy to hear that you are well and just keeping busy. That us helpful, plus you’re such an inspiring advocate in many areas.

Keep up the incredible job and take care of yourself. I’m sending you hugs and sunshine from Texas.

[Colleen]

@vanessavaile it’s always good to hear from you. I love how busy you keep yourself and the amazing job you do keeping people informed about important topics. Thank you for continuing to follow the forums and checking-in when you can. Stay well!

[Carol Volckmann]

Hi Stephanie, I read your post “I’m ok ish”. You have so much on your plate and you are dealing/coping/researching/weighing your options – moving ahead. Sounds like you and your husband are truly great partners in your struggle. Also remember, sometimes it is okay to let go and allow yourself to feel not okay that goes for your husband too. You both are fighters and you both will deal whatever is ahead. Sharing the not so good moments for myself helps to move ahead. I think you are awsome and send you all the positive energy I can along with Jen’s air hugs,
Carol