Hi folks. Its been a while since I posted but having just got back from, what feels like, another wasted hospital appointment I just needed to vent my frustration. 5 years after being ill, I am still no clearer on my diagnosis. I know that five years ago I had a portal vein thrombosis, varices and gall stones, but now I'm not sure whats happening. Generally I am in good health, fit and active, and I know I should be thankful for that. I've had biopsy, ultrasounds, MRi/liver multiscan, and Fibro scan and they are still not clear on what level of damage I have or what to do about it. Each appointment I see a different registrar, who has had about 1 minute to scan my notes to bring themselves "up to speed" and I have been told that I have Cirrhosis, then fatty liver, then cirrhosis that is getting worse, then a small amount of fibrosis, and today some indication of fibrosis as the fibroscan indicates the liver is a little stiffer than average?!?. Frankly they just don't seem to know. They've apparently discussed me at the multi-team meetings and this led to the Fibroscan. Now they are taking yet more bloods and looking for another ultrasound.
I should be, and generally am thankful that I'm getting these tests but I dont see any answers. It all feels very rushed each visit. Todays visit I had to leave work early and drive 25 miles to the hospital to meet yet another registrar and walk them through my history during the 5 minute appointment, rather than getting the results and answers I had been expecting (especially as this appointment was supposed to be two months ago but kept getting pushed back).
They focus on my weight which is not helping my humour. "do you struggle with your weight?", well frankly yes, but I am at the gym 7 days a week doing 6 hours of cardio and 3 hours of strength training per week and following a low carb, high protein, high vitamin, low alcohol diet and the weight just sits around my middle like a tyre. It should be falling off, yet no amount of exercise or dieting is making much of a difference. To go from zero to 7 days a week exercise you would expect more of a loss and frustration is not a strong enough word for what I'm feeling. The hospital dietician and a sports nutritionist have both examined my diet and are consider it well balanced so what can you do. My guess is the propranolol that I'm on for portal hypertension is a factor, but who knows. I did ask one registrar if I could come off it but they felt it too risky, although I am beginning to question whether I have portal hypertension at all now its got so confusing. It just gets depressing sitting being told to eat more healthy and exercise more when you busting your arse trying to lose some weight. You feel the doctors dont really believe what your telling them even though you're being frank and honest.
I've reached the point where I question most of what they tell me as it changes so frequently.
Thats it really. rant over. I know I'm lucky to be in the level of health that I am, and am thankful for that. I take one day at a time and live in the eternal hope that my metabolism will kick in and the weight will drop so that they can stop focusing on that and actually find out what is wrong. 5 years is a long time.....
Sorry to bleat on. Stay well everyone.