So it has been another roller coaster of a week. And you all know how I feel about roller coasters.
After Monday's half productive half syncopal session of PT, I was given a lot of fluids and more medication.
Tuesday morning I was told that we were not at the point of discharge/transfer because my level of abilities and baseline health were too low. This was very upsetting because I felt ready. And I knew that if they would give me the chance to work with PT and OT, I could show them that I was ready. However, I was only ever given 30-45 minutes a day with them so I could never really prove my potential. To make it all worse, they never even saw me on Saturday, Sunday or Tuesday. This series of events made me very frustrated and angry. There were many tears of frustration.
Yesterday we were told that between the OT and PT recommendations and the insurance companies utter tomfoolery, I would probably only be approved for sub-acute rehab. Sub-acute rehab is basically like a nursing home with a gym. Once again, I felt frustrated, neglected, and, to be honest, really pissed off. I told my med team my frustrations with OT and PT.
By last night we had made up our minds (my family and I) that if we could not be approved for acute rehab, we would be discharged and look for out patient PT that focuses more closely on POTS and Dysautonomia. We discussed this decision with my med team and then I played rummy with my dad and sister.
This morning, my med team came in and said that OT (occupational therapy) and PT (physical therapy) and PMR (Physical medicine and rehab) and Med (my general medicine team consisting of an attending, three residents, two interns which are 3rd year residents and two medical students) had all approved of my transfer to Acute Rehab. The paperwork was in and we were waiting for the stamp of approval from UnitedHealthcare.
THEN, PRM stopped by to watch me walk. I walked down the hall and they talked to me as I did it. Then they started discussing out patient rehab. So with consultation with the rest of my 14+ person team, it was decided that I will be discharged with referral to out patient rehab.
But here is the thing. POTS is fairly rare. POTS to my extent is extremely rare. POTS literate doctors and therapists are practically non-existent. If we pick an in-patient rehab center, we are stuck with whatever PTs were at that facility, whether or not they had any familiarity with POTS. If we leave and try for out patient rehab, we are stuck with the co-pays and the process of finding and retraining a PT about POTS. Not to mention the difficulties of transportation to the facilities.
So we are now on a new journey to search for the right care. We are applying to several clinics and research hospitals to find POTS appropriate treatment and care. There are only about 3 or 4 POTS focused clinics/departments in the country, the best being in Nashville.
I don't know what the weeks to come will hold. I was disappointed about not traveling this summer, maybe I will end up traveling more than I thought.
After Monday's half productive half syncopal session of PT, I was given a lot of fluids and more medication.
Tuesday morning I was told that we were not at the point of discharge/transfer because my level of abilities and baseline health were too low. This was very upsetting because I felt ready. And I knew that if they would give me the chance to work with PT and OT, I could show them that I was ready. However, I was only ever given 30-45 minutes a day with them so I could never really prove my potential. To make it all worse, they never even saw me on Saturday, Sunday or Tuesday. This series of events made me very frustrated and angry. There were many tears of frustration.
Yesterday we were told that between the OT and PT recommendations and the insurance companies utter tomfoolery, I would probably only be approved for sub-acute rehab. Sub-acute rehab is basically like a nursing home with a gym. Once again, I felt frustrated, neglected, and, to be honest, really pissed off. I told my med team my frustrations with OT and PT.
By last night we had made up our minds (my family and I) that if we could not be approved for acute rehab, we would be discharged and look for out patient PT that focuses more closely on POTS and Dysautonomia. We discussed this decision with my med team and then I played rummy with my dad and sister.
This morning, my med team came in and said that OT (occupational therapy) and PT (physical therapy) and PMR (Physical medicine and rehab) and Med (my general medicine team consisting of an attending, three residents, two interns which are 3rd year residents and two medical students) had all approved of my transfer to Acute Rehab. The paperwork was in and we were waiting for the stamp of approval from UnitedHealthcare.
THEN, PRM stopped by to watch me walk. I walked down the hall and they talked to me as I did it. Then they started discussing out patient rehab. So with consultation with the rest of my 14+ person team, it was decided that I will be discharged with referral to out patient rehab.
But here is the thing. POTS is fairly rare. POTS to my extent is extremely rare. POTS literate doctors and therapists are practically non-existent. If we pick an in-patient rehab center, we are stuck with whatever PTs were at that facility, whether or not they had any familiarity with POTS. If we leave and try for out patient rehab, we are stuck with the co-pays and the process of finding and retraining a PT about POTS. Not to mention the difficulties of transportation to the facilities.
So we are now on a new journey to search for the right care. We are applying to several clinics and research hospitals to find POTS appropriate treatment and care. There are only about 3 or 4 POTS focused clinics/departments in the country, the best being in Nashville.
I don't know what the weeks to come will hold. I was disappointed about not traveling this summer, maybe I will end up traveling more than I thought.
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