Hey... I hope all is well for you! I am posting again because I have uncertainties! And a hat on because the heating ain't going on this year!!
Anyways, I recently had a few daytime tests at the hospital; Emergency Assessment Unit twice and Endoscopy. The EAU told me I have a blood clot in my left leg which is treatable with injections and I have the Haemotologist calling me in September..fine..Endoscopy went alrightish but hey no-one is going to like that procedure right! My varices are Grade 1 now which is great! So physically after decomp last year I mustn't grumble!
My thing is this...I have just looked at my doctor's records and they have a recent test result for the EAU about the dvt but none about Endoscopy and no test results since May when I was, stupidly I know,n hospital after a relapse which thankfully wasn't for long but I did have a seizure which I continue to beat myself up about....ffsakes! I have just gone through my doctor's records on System Online and the seizure was not recorded with the GP'S and I haven't had a LFT since May. Should I have routine blood tests? I am coming up for 5 months sober now but my functioning is at times is not good. I did see the GP in June and she said ' God you have lost weight!' I said 'Yeh but I am not 7 stone like last year more 11! ' She was a bit shocked tbh, either she didn't know or she thought I was jesting?! I don't joke about that experience and I never will!
I am far from woe me but sometimes I think what? Is it?...Anyways, thanks for listening! All my best....Mark
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Hi Mark! My Hubby has a running tussle with his doctors about blood tests. He has to have them at the hospital as none of the nurses at the GP can get any blood out of him but they're always phoning up moaning he hasn't had a blood test (he has to have them 3 monthly as he is on metheotrexate) He has a phone appointment with the hospital and mentions it and they say "the results are on your medical notes which all the medical staff - hospital, GP, ambulance etc - have access to!"I know they're busy - houses keep getting built but there's no infrastructure increase - but still, they should know that shouldn't they?
Hi Jacky....Thanks for getting back to me about the blood tests. And your husband has a running tussle with the GP's?! I am sorry to hear that. I too was on methotrexate but many years ago. I stopped it because of the side effects I had but it did the job!My results are somewhere but not in my notes..yet I guess!? I know the infrastructure needs to be sorted ASAP. The medical team do have everything but it is just accessing them. The housing industry has boomed in my quaint Hertfordshire town and the road network cannot cope with this development. I have to get a taxi to hospital appointments and need to book them 2 hours in advance.
I hope you and your husband have had a lovely summer.....I managed to get out in that blistering heat but only in short spells which is why I don't need methotrexate....All the best, Mark
Hi Mark your situation sounds similar to my sons . He’s 62 and was diagnosed with decompensated cirrhosis in October 2021 and he’s lost 7 stone - he stopped drinking straightaway . I insisted that he had LFT every two weeks with the district nurses calling as we needed to know if there were any changes to results . He also had bleeding varicies and he’s just had a drain fitted for ascetics. Do you have a swollen stomach with fluid?
It’s good to hear that you’re not drinking now but you should be having more regular blood tests . I get my sons results on the nhs app as soon as the doctor has seen them and I keep a record so I can refer back to them. It’s amazing what you learn about blood tests - I think I’m becoming obsessive about them but I think it’s better to know what you’re dealing with .
Keep warm keep sober keep positive and keep posting on here - best wishes hope your keep improving Carol
Hi Carol...Thank you for your reply and I hope your son is doing okay. He stopped nearly a year ago?!.that is great news!!!
I was decomp in February 2021 and had 14 litres drained from my stomach. There was loads of it but thankfully it hasn't returned. I believe that a blood test is on the way but it is when they call me to do so. You are not obsessive about getting your son tested btw you are just being a mum. So keep warm, positive and celebrate your son's year of sobriety and a good dinner is always nice!!...All my best, Mark
morning Mark....hat comment made me chuckle!. we will all be wearing 1 this winter😏! fella stop going at yourself bout the small relapse......it happens.....it doesn't do to dwell on it....onwards and upwards. I have to have an ultrasound and bloods taken every 6 months,After cirrhosis diagnosis. only trouble is,when I receive my blood card from my gastro consultant,my gp won't do blood requests from hospital,so means another trip to hospital,just for a 5 minute blood appointment!!. sometimes your medical notes take a while to filter through to gp. when I was last in the Royal Stoke hospital,After a bleed,the ward sister said they couldn't give me any discharge notes,because the It system was down,she said they would be sent electronically the following day to my gp....it took over 5 weeks. in the meantime my gp didn't know what had been going on at hospital. not sure if that helps you fella,I think I may have waffled on a bit!....take care fella. chris
Watcha Chris...I am glad I made you chuckle on the back of the hat thing!
And I am onwards and upwards and I just need to put that one behind me. At the time of relapse I mourning for 3 very close relations who passed away within 6 months of each other I have got my head around that one now and moving on. And about the Royal Stoke experience.... Everything is electronic these days and sometimes 'the computer says noooo!'😊 Your reply did help and is far from waffle because you say it how it is!...Take care fella, Mark
Oh,ok fella, loosing 3 close relatives in such a short time period is alot to handle....do understand. Lost my lovely dad earlier this year...still have some rubbish days...sorry if I'm a bit to down to earth. My best. Chris
Never apologise for being down to earth fella..it's a great quality! I am really sorry you lost your dad earlier this year. I lost mine last August and having rubbish days is normal my man! I lit a candle on Father's Day for him and whacked the Rolling Stones on for him!😊.... 'I can't get no...Satisfaction!' was his tune. It was a tough one but also a celebration of his life...Take care...Mark
I have to admit- I dont know what rolling stones is but sounds like a music band... I'm sorry if that makes you feel old 🙈 maybe I just haven't lived yet!
Someones already mentioned but I use the NHS app alot! It's the only way I can actually look into my medical records- because no one else knows. If I have bloods done I keep checking till they come on ( I know before the gp sees them) I have noticed though that hospital records dont go on ??? There may be a mention on such a date attended diabetes or hepatology but no mention of results, investigations, advice or next steps. I do, after about 6- 8 weeks get an email from hospital on my visit. Suppose its cheaper to send emails than post but not quicker.
I dont like when doctors make people feel guilty for having a relapse... we are not perfect and they dont consider how someone may be struggling. It's a shame rather than give you a stern finger- wagging they dont refer people to therapy. More effective than leaving you to get on with things.
I hope your ok now. This journey is tough as it is. When I'm feeling really down I ignore the phone, ignore appointments and just curl up in bed until I feel ready to face the world again- hence waiting yonks for another US scan... I did get told off for that but I simply told her "do you suffer from liver problems? No? Well dont judge because a day in my shoes is tough enough without a 2 hour bus ride for a scan" I cant even put shoes on... I can see myself walking in snow wearing my half- chewed ( dog fault) but comfy flip flops.
I want to thank you personally though because I was do stressed Saturday my hair was falling out. I feel much better talking things through with someone else on this nightmare of a journey- so thank you! 😊
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