RobertParticipantFebruary 10, 2020 at 6:36 pmPost count: 1
Regular “control” visit today with my PH specialist. He changed my classification from NYHA III to NYHA III – IV. NYHA IV is the last phase of PAH.
At hospital they took my blood and did EKG, then that “visit” with doctor lasted 3-5 minutes. He asked like two questions, copy – paste report, printed it, gave it to me and left. Fantastic communication with patient, right? Now I feel like I was handed death penalty.
At hospital I have two masks, rather, flu season is strong. I slept through whole time in ambulance in a way from Ostrava to Olomouc, while sitting. New computer should arrive this friday and my friend will come to install it and do everything needed with it on saturday. I don´t understand computers at all.
Regarding that death penalty from my doctor – I wanted yet to order subscription of the magazine Centurion about history (no sense now, right?), go to mountains Beskydy for few days to relax in swimming pool and to change scenery, when I am 24/7 at home), dye my hair, get to 25th Fantasy festival, watch new TV show of Robert Carlyle, live long enough to see 4th season of The Handmaid´s tale, new TV show of Rufus Sewell, Star Trek: Picard, new season of Altered Carbon, Atypical, The good doctor, 2nd season of After life, The Boys, War of the worlds, Umbreally academy, new season of Criminal minds, Grace and Frankie, Young Sheldon, Victoria, Dicte, watch TV show Medici and Tudors…
Get to theatre to see my favourite actors in some good play. (Jan Fišar, Tomáš Jirman, Petr Houska, František Strnad, František Večeřa, Anna Cónová, Mrs.Logojdová…) At least for the last time see play Habadůra with my favourite Mrs. Forejtová…
Catch on my knowledge of history of Korea, Japan, China, India, Russia, Mongolia, Egypt, Persia, Peru, Great Britain, Ecuador, Peru, Bolivia, Chile, Columbia, Mexiko…
Listen to everything from André Rieu, german discography of Karel Gott and Judita Čeřovská, listen to Tchaikovsky, Shostakovich, Johann Strauss father and son, Oskar Nedbal, Rudolf Piskáček, Antonín Dvořák, Bedřich Smetana etc.
To watch grow up my lovely kitten Shlomo…
Go with my mom to running sushi, be able to prepare asian food at home.
What I will be able to manage in time I have left? I feel physically and psychologically so horrible.
BrendaParticipantMarch 26, 2020 at 11:17 pmPost count: 2
I am sorry to hear that your diagnosis/prognosis has changed. I was diagnosed in June of 2019 and also with mixed connective tissue disease. Initially I felt the same as you. Having 2 children and a wonderful husband I could only think of them and how I was letting them down with my doubtful thinking. Although I tried to remain positive I felt as though there was a death sentence over my head.
Keep the focus on the things you want to accomplish. Keep your faith and continue to do all you can for yourself.
As for your doctor, these days technology has replaced some of the human compassion and empathy. If I were you I would express how you feel with your doctor, let them know how you find this impersonal and frustrating for you.
I will pray for you. STAY POSITIVE!!!
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