Feeling frustrated

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.

Mark

12 Replies

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  • Hi

    I know what you mean about the weight, dietician said I'm doing everything right and to speak to consultant when I go on the 3rd august. I have Nash and get so much pain with it. I'm not moving next week until something is done!! So frustrating, really feel for you. Please take care

    Lynne

  • Thanks Lynne. Good luck next week. I know your pain. I get it if I have a high fat meal - normally if I eat out. Also I only eat bread once in a blue moon and this appears to help too. Lots of water and a low fat diet did wonders for my liver pain , even if it hasn't worked miracles on my waistline ;)

  • Thank you so much for your kind words. Please take care. Lots of love Lynne

  • Do you have to Take. Cremona tablets with every meal especially dairy products?

  • Sorry I meant creon. Tablets

  • Hi,

    First I am obliged to say that neither I or other members of the forum can answer medical questions so this is from personal experience and knowledge.

    Do you know when your next ultrasound is booked for? You can ask the radiolist there and then about portal vein problems. They sometimes try to say you have to wait to hear from consultant though. Try to build up a good relationship with the department staff but if they still play funny you can say that under government health directives the results are yours and you have a right to ask.

    The multiscan will give you a very good idea of the amount of fibrosis although I think this is still in trials you should have copies of your results. I think this will be a valued diagnostic tool when rolled out.

    Fibrosxan results are notoriously vague in my opinion.

    Get and monitor your blood results and compare them with the norms on the NHS website.

    It's your liver and you have every right to know what's going on.

    At appointments take a written list of questions and refuse to leave without answers.

    Rita x

  • Hi, sometimes after a clinic visit I wonder why I bothed to turn up. How ever things happen in the background that I don't know about, there has been a few times I have had phone calls changing my meds. Just don't give up or lose faith.

  • I know how you feel iam still in the dark after five years .hope you get things sorted soon.

  • I am sorted in a way, but when I go to clinic I get bloods taken then a few words then home. Otherwise I am non the wiser then before my appointment. Still if they find a problem they would tell me...

  • I know. How you feel I was treated. For cirrhosis. In 2012 then I had. Pluracy. Been going for blood. Tests and scans endoscopy. An now I am being told I have an inflamed liver due to alcohol the dreaded poison. I go back in September this time I want to get proper. Answers. And not be fobbed. Off as you say it is so frustrating. Anyway. Hope you too find the right answers good luck for the future x

  • We all know that the core is where it all starts, the intestines is build up with bacteria fecal matter im looking into having a colonoscopy which is I believe all humans will need at some point in there life it plays a big role I think. A good Clean out could possibly be the key

  • Dear Falamalana

    I am sorry to hear about the problems you are having. I hate going to all appointments. I feel I am better at dealing with my health problems than the Doctors but, of course, that's just my own opinion! LOL

    Have you specifically asked them to do a Hepatitis C test? Have you actually seen the confirmation of the lab report to confirm the result. To get a reliable test done for any type of Hepatitis I would strongly advise you go to a sexual health clinic. Tell them that you feel you are at risk of Hepatitis having had multiple treatments and tests. If you have previously had a blood transfusion you definitely need to be tested but many other NHS procedures can put a patient at risk of contracting Hepatitis. Make sure they test you for ALL TYPES where a test is available. Hep A (not really important and unlikely to do this at sexual health clinic), Hep B, Hep C, Hep Delta, Hep E, Hep G, etc. Make sure they do ALL possible tests and make sure you let them know that you are just desperate to find the answer to your problems so you can begin to help yourself!!

    The important fact to note is that Doctors do not have to tell the patient if the test is positive which is why IT IS SO IMPORTANT that you have this done at a sexual health clinic and NOT to let your own Doctors/GP/etc know you are having it done. If they feel it will not make any difference to your treatment or way of life they have been instructed to withhold the diagnosis from certain patients. This is outrageous and when I discovered this I was disgusted but this is the lovely world we live in!!

    So get going as soon as possible and have this test done as a matter of urgency. At least if it all comes back negative you can move on to looking at other things. MAKE SURE to ask to see the ORIGINAL lab report when they give you the results. Just casually say "I'd like to see the result now. Please show it to me." Also ask for a copy of the original report as well for each of the tests. Now you are not asking for a print out of the typed up report where anyone can type anything they want. You are requesting the actual laboratory form where the original result is recorded (hopefully!!).

    I never trust any of them but I feel your chances of getting an HONEST result will be the sexual health clinic. I had to go there to get my result. Do this as soon as you can and please let us know how you got on to see if there is anything else anyone can help with. If it is negative that will be good news. If the result is positive at least you will know what is wrong and can start working on helping yourself. Stay strong.

    Love & Hugs

    from Twinkling Star

    Keep Smiling and I will Keep Twinkling

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