Can I expect coordinated care from Post COVID Rehabilitation Program?

Posted by Kathy @feb, Aug 12 6:31am

Started Post COVID Clinic in 2/2022, had COVID IN 2/2020. Sufferred at home with 7 round steriods, ER breathing TX, andcomplete bedbound. Took me 6 months to confines my Doctors to give order for antigion test, which was inconclusive. Started Clinic, numerous tests, MRI/LP, some indication of interracial hypertension, empty sell, and some fluid with leakage, small vessel indicators. Pulmonary Rehabilitation which causes complete exhaustion and headaches that are disabling and they continue to increase levels, deep diaphragm breathing causes severe headaches. One Dr will pass to another, or not answer at all. I have had Fibromyalgia for over 25 years, its like on steriods, sleep apnea and narcolepsy, have me exhausted by 4pm, after being at some appt, test or therapy. My AL Amyloidosis of Laryngeal area spread after 5 years remission, now severe GERD and Bacteria Overgroth Syndrome, Anxiety, Depression (been seeing Therapist and Evaluation with Psychiatrist, just increased Cymbalta), OAD, Severe RLS. Nothing is coordinated and Drs don't communicate. When I go for appt and explain symptoms and show research or how issues could be indicators or a connection they dismiss. I have not a free day without one or to appts, tests or rehab. I have shared that That I think, I my have Me/CFS with Fibromyalgia and they basically laugh. The over exertion is exhausting and headaches definitely connected, which impacts my TMJ. Just found out, I have a compression of C 4/-6. I also am left up to finding my own PT, they don't have it intergrated. What should I do. Afraid to just quit, in case something is wrong, but seem to be getting worse and anxiety depression, exhaustion, and headaches are getting worse.

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

In a Post-CoV-2 Clinic, but Rehabilitation is piece together and I am left to find my on PT specialist for different issues, only referral made was to a Pulmonary Therapy, which is good, but do not listen when concerns are brought up. They response is u have to keep increasing to get better. Different PT's contacted only do certain services and I have been going to 2 different places and getting no where and doesn't seem to be helping. Co-pays and insurance limits getting used up for nothing. Several issues, TMJ , Headaches, Fibro, Copressed cervical vertebrates, carpal tunnel syndrome, undiagnosed arthritis or muscular skeletal issues. In Post-CoV-2 Clinic, but not intergrated. Always told my PCP is to look at big picture!

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@feb

In a Post-CoV-2 Clinic, but Rehabilitation is piece together and I am left to find my on PT specialist for different issues, only referral made was to a Pulmonary Therapy, which is good, but do not listen when concerns are brought up. They response is u have to keep increasing to get better. Different PT's contacted only do certain services and I have been going to 2 different places and getting no where and doesn't seem to be helping. Co-pays and insurance limits getting used up for nothing. Several issues, TMJ , Headaches, Fibro, Copressed cervical vertebrates, carpal tunnel syndrome, undiagnosed arthritis or muscular skeletal issues. In Post-CoV-2 Clinic, but not intergrated. Always told my PCP is to look at big picture!

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I understand your frustration. There are licensed nurse who work as Case Managers. They source + coordinate care. They're usually associated with a hospital or home care. The most common coordinator of care I'm familiar with use a Primary Care physician. They're the hub of medical services for a patient. That's a main role for them. Perhaps your PCP can step into a role with your clinic care. He should be receiving updates etc anyway. As standard practice.
I agree that fragmented care and being responsible for identifying appropriate care providers on your own is not a good scenario.
My thought also is to reevaluate the Post COVID Clinic itself. They may not be capable of providing the standards +care you need.
Wishing you the best.

REPLY
@feb

In a Post-CoV-2 Clinic, but Rehabilitation is piece together and I am left to find my on PT specialist for different issues, only referral made was to a Pulmonary Therapy, which is good, but do not listen when concerns are brought up. They response is u have to keep increasing to get better. Different PT's contacted only do certain services and I have been going to 2 different places and getting no where and doesn't seem to be helping. Co-pays and insurance limits getting used up for nothing. Several issues, TMJ , Headaches, Fibro, Copressed cervical vertebrates, carpal tunnel syndrome, undiagnosed arthritis or muscular skeletal issues. In Post-CoV-2 Clinic, but not intergrated. Always told my PCP is to look at big picture!

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I am having issues with my cervical spine, carpel tunnel, muscular and arthritis. Covid is causing so many problems with my body, that it is difficult to perform many tasks.

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@feb

In a Post-CoV-2 Clinic, but Rehabilitation is piece together and I am left to find my on PT specialist for different issues, only referral made was to a Pulmonary Therapy, which is good, but do not listen when concerns are brought up. They response is u have to keep increasing to get better. Different PT's contacted only do certain services and I have been going to 2 different places and getting no where and doesn't seem to be helping. Co-pays and insurance limits getting used up for nothing. Several issues, TMJ , Headaches, Fibro, Copressed cervical vertebrates, carpal tunnel syndrome, undiagnosed arthritis or muscular skeletal issues. In Post-CoV-2 Clinic, but not intergrated. Always told my PCP is to look at big picture!

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Hi @feb, I merged your 2 discussions/posts into one discussion called:
– Can I expect coordinated care from Post COVID Rehabilitation Program? https://connect.mayoclinic.org/discussion/post-covid-clinic-service-integration-issues-with-services/

It is really tough when the patient is expected to be the glue between specialties and services, and to make sure everyone is aware of test results, treatments, symptoms etc. As @rsfcowgirl stated, sometimes this role falls to your primary care physician or a case manager, which can help. Many facilities, especially large hospitals and increasingly smaller clinics, use shared digital records like EPIC, which helps. Then there's the Mayo model of fully integrated teams of multiple disciplines. Luckly this model is being adapted more and more.

As you pointed out elsewhere it can really hard to get accepted at a post COVID care clinic (PCCC). Wait times are long and acceptance criteria restricted due to high demand. I believe you had to wait months for your first appointment too.

It must be really hard to coordinate between specialists when you are feeling so terrible. Just one of your conditions would make it challenging. You're dealing with so much.

In this blog post, Dr. Vanichkachorn, medical director of Mayo Clinic's COVID Activity Rehabilitation Program, offers some tips of talking with providers about long COVID. Perhaps there are some pointers here that might help.

– How to effectively talk to your local provider about long COVID https://connect.mayoclinic.org/blog/post-covid-recovery/newsfeed-post/how-to-effectively-talk-to-your-local-provider-about-long-covid/

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