Lifestyle Changer and coping

Posted by hithere @hithere, Apr 7, 2022

Hi, I live in the Sierra Cascade Mountain Range, which is roughly 4800+ elevation. I aquired the Delta Virus and was hospitalized for 4 weeks. During the double pneumonia and Covid, my lungs got trashed with scarring. I live in a very rural area with two Doctors and unfortunately, neither knows how to handle my situation. I owned a thriving business, hiked and did tons of activities throughout my weeks, and now… I’m on Oxygen 24/7, at a 2, and Eliquis, because of two bilateral blood clots found on a CT scan in my lung area. I was told I’m lucky to be alive. I now get winded walking to the kitchen from my bedroom. Without a Pulmonologist or special Lung Rehab, I want to get better and I try and exercise lightly daily, eat nutritious foods low in histimines, etc. Take vitamins and really trying to do everything I can to help get rid of these blood clots lodged in my respiratory track. My question is this, is there anything I can do like vapor baths etc with essential oils? Or anything that will aid in reducing these clots from my lungs, in hopes I can breathe again on my own? Without much knowledge in these rural mountains or services. I haven’t even gotten a smidgen of hope for this. I can’t cope! Help????

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

Hello, I am sorry to hear of what you have been through with Covid and all the complications.
I understand about living in rural, underserved areas, but what do people do when they need specialized care for cancer, heart or other issues? Do you travel to a medical center, use telemed, or have travelling specialists who visit?
Given the risks of blood clots in pneumonia damaged lungs, if there was ever a time to travel to specialized medical, it would be now. Do you have someone who can help you do this?
Sue

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Yes, I’m hoping to get into a specialist in Chico, a couple of hours away from here. But getting into a specialist hadn’t been easy as well. I’m up moving, not bed ridden in anyway. So, I’m hoping my primary can get me into one , there’s a long line to wait for these specialists I hear now, since Covid. Does the after effects, I.e. shortness of breath, fatigue, etc. can that take months to go away? I’ve been out of the hospital since last Nov. and I still can’t taste or smell, etc along with the other comments I made. It’s a life changer for me. It’s horrible, and now, totally depressed

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@hithere

Yes, I’m hoping to get into a specialist in Chico, a couple of hours away from here. But getting into a specialist hadn’t been easy as well. I’m up moving, not bed ridden in anyway. So, I’m hoping my primary can get me into one , there’s a long line to wait for these specialists I hear now, since Covid. Does the after effects, I.e. shortness of breath, fatigue, etc. can that take months to go away? I’ve been out of the hospital since last Nov. and I still can’t taste or smell, etc along with the other comments I made. It’s a life changer for me. It’s horrible, and now, totally depressed

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Hello, If you read through the other discussions in this group, you will learn that long Covid is still a puzzle. It appears that each case is different, recovery times vary from a few weeks to many months, and how many effects resolve and how many may be permanent is still not well understood.

Can you get a referral from your physician, then get busy on the phone and internet and find a doc to see you? Your doctor might take a long time, between seeing patients, to track down resources for you - but you might be able to find help sooner. It is important to be your own best advocate in seeking care. Here is a list of Post Covid Care Centers in California too - are any accessible to you?
Sue

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@sueinmn

Hello, I am sorry to hear of what you have been through with Covid and all the complications.
I understand about living in rural, underserved areas, but what do people do when they need specialized care for cancer, heart or other issues? Do you travel to a medical center, use telemed, or have travelling specialists who visit?
Given the risks of blood clots in pneumonia damaged lungs, if there was ever a time to travel to specialized medical, it would be now. Do you have someone who can help you do this?
Sue

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In reply to @sueinmn…..when living in a rural, underserved area-I find my only choice is long distance travel (typically a minimum of 4 hr one way) to find specialized care. I have used telehealth for preliminary appts. Those who are unable to pay the costs and have the necessary help to travel do not have any choices. That certainly appears to be the reality of rural living.

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Yep, you nailed it! Thank you for answering my inquiry.

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@sueinmn

Hello, If you read through the other discussions in this group, you will learn that long Covid is still a puzzle. It appears that each case is different, recovery times vary from a few weeks to many months, and how many effects resolve and how many may be permanent is still not well understood.

Can you get a referral from your physician, then get busy on the phone and internet and find a doc to see you? Your doctor might take a long time, between seeing patients, to track down resources for you - but you might be able to find help sooner. It is important to be your own best advocate in seeking care. Here is a list of Post Covid Care Centers in California too - are any accessible to you?
Sue

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Thank you so much! I’ve really never had a major illness, been pretty healthy all my life. This has been an eye opener for me, and will certainly, in the future, assist anyone in my area with finding the help they need as well. Thank you so much.

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@hithere & @migizii I completely understand the realities of being "medically underserved." My in-laws had to travel 4 hours from their home to ours for specialized treatment. And the local, overworked doctors had few resources and little support, so they were often unable to stay up-to-date on emerging issues and new treatment options. We have seen the "other side" too, as two good friends chose the life of the rural doctor, running 24/7 and nearly ruining their own health trying to serve. Now I winter in a very poor county, where care standards are at least 10-20 years behind what we are accustomed to, and the docs and their staffs are similarly stretched to the max.
So I am driven to ask, as I have been since my father-in-law was initially diagnosed with cancer in 1977, what is the solution?
The Connect community tries to help, by sharing information and encouragement and suggesting resources. But it is a hard fact that not everyone has access to those resources - limited by location, availability, transportation and finances. I wish I could wave a magic wand and fix it, don't you?
Sue

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Would highly recommend connecting with:

NOAH GREENSPAN, PT, DPT, CCS, EMT-B (New York City. Available virtually.)

Very active in COVID Rehab
http://www.pulmonarywellness.org
Pulmonary Rehab Center
https://www.longhaul.movie/

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@sueinmn

@hithere & @migizii I completely understand the realities of being "medically underserved." My in-laws had to travel 4 hours from their home to ours for specialized treatment. And the local, overworked doctors had few resources and little support, so they were often unable to stay up-to-date on emerging issues and new treatment options. We have seen the "other side" too, as two good friends chose the life of the rural doctor, running 24/7 and nearly ruining their own health trying to serve. Now I winter in a very poor county, where care standards are at least 10-20 years behind what we are accustomed to, and the docs and their staffs are similarly stretched to the max.
So I am driven to ask, as I have been since my father-in-law was initially diagnosed with cancer in 1977, what is the solution?
The Connect community tries to help, by sharing information and encouragement and suggesting resources. But it is a hard fact that not everyone has access to those resources - limited by location, availability, transportation and finances. I wish I could wave a magic wand and fix it, don't you?
Sue

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In reply to @sueinmn…I really have no concrete ideas. However, our tribal and local community offer loan forgiveness for doctors who work here for two years. I think this serves as an incentive to increase the possibility of retaining medical personnel, but it doesn’t happen. I asked a neurologist once (we presently don’t have any here) her reasons for leaving and she stated there was no community here for her (meaning cultural diversity-other than Caucasian and American Indian) and it’s so small that there isn’t local shopping for cultural foods or much to do, in general. We are geographically so very far away for most people of various cultures to find comraderie and our weather is extremely harsh. Also, although many people may disagree with me; I moved to this community a very long time ago and I am still considered an “outsider” because I wasn’t born here. The medical personnel who do stay are very committed to their work.

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