Tweet
Hello everyone, I am having a pretty awful time since diagnosis and I wanted to see if anyone else had a similar experience, forgive my ramblings...
I was diagnosed in the middle of lockdown, around July 2020. I was looking after my 9 month old and noticed I was falling asleep frequently and very easily. I was given the usual equipment, went back the next day and received a letter... "Severe degree of obstructive sleep apnea" with results showing 80 apnea moments per hour on average.
Surrendered my driving license immediately as the letter said, and waited for my referral to happen. Knowing I was completely incapable of functioning day to day, I rented a CPAP machine online (without practitioner care I had to get an APAP as I knew nothing) whilst I waited to hear next. I called the department just before my rental ended before decided to pay another £350 a quarter, and they got pretty mad at me daring to waste their time chasing it up "you'll be contacted".
Several visits to the doctor to report more and more ways my life was being damaged by not being seen, not having energy to play with my child, falling asleep at work, and many "chase up" letters from the doctors and I received a letter from the department saying "Most of our patients are seen at around 72 weeks" and so I purchased a Philips Dreamstation APAP because what choice did I have at this point other than to commit and buy.
A year later I got a phone call from the department, "we hear you already have a machine", asked for the model type and said she'd call back in 10 weeks (unsure what was achieved by this point or what the wait was for) but the call ended and here we are today. Three whole years from diagnosis and I have received absolutely zero care, advice, or contact with a professional in OSA.
I am tearing my hair out wondering what else I am supposed to do in order to be seen. I haven't been able to drive for three years whilst I wait for something to happen. I'm not allowed to chase them or they get upset, my doctors have already sent increasingly more irritated letters to the department, and I'm nowhere.
I've been dealing with that all this time in the background, reasonably successful having cheated and bought an APAP to do the professional bit for me. Unfortunately in the last three weeks I have randomly been suffering with mask fit figures around 20-30% for no conceivable reason, becoming more tired by the day, poorly functioning and falling asleep at work again. Putting pressure on my wife who has to pick up some of the slack in "getting up and go" when it comes to getting our child ready for school and overall just feeling like a garbage husband/parent. I haven't changed anything about my mask, tubes, headgear or anything but I cannot seem to achieve decent mask fit figures. Air leaks lasting 2 hours a night, apnea ratings of 60-80+ and just a big backward step. Without professional input I don't know what else I can try and because I'm not yet "with" the clinic I don't have anyone to call.
Feel really stuck in a rut and getting to feel quite depressed about it all. I'm also juggling Type 1 Diabetes alongside it as well and it's tough to put on a happy face.
Any advice, feedback etc would be really appreciated. Thanks for reading
Comment