I have recently been diagnosed with Cirrhosis of the liver, I have not been given the results of my Fribroscan, blood test, Colonoscopy etc. I have contacted the hospital and the consultant who carried out the above procedures. Heard nothing back as yet. My question is are we supposed to have a liver nurse as a point of call? I am at a loss here to be able to have a contact to ask for support.
Regards
Mick 141414
My husband has had a diagnosis of cirrhosis since April 2012 and he doesn't have access to a liver nurse. He sees two consultants - one locally and one in Edinburgh and we have contact details for both though he hasn't had a consultation now (due to the covid situation since January 2020).
Maybe try contacting the specialist again and see if a telephone consultation would be available sometime soon if not a face to face.
I guess as you have already had the cirrhosis diagnosis that is all that the fibroscan would have shown (my hubby has never had one as it wouldn't add anything to his diagnosis since we already know he has cirrhosis). We never get told blood test results unless something has shown up that needs some treatment. Obviously in your case they were looking to check something with the colonoscopy so yes you want to know what that was and results.
Maybe when you do get to speak to consultant you need to see what routes you have of contacting someone if you have a query in between appointments. I have phone numbers and even email addresses for hubbies consultants secretaries and it's good to get a good relationship with them.
Katie
Alright Mick... When I was being diagnosed in hospital, I had already been told that I had cirrhosis but no official diagnosis on how far the disease had spread... Two ladies came to visit me in my hospital bed with a fibroscan machine. They said that they were my liver nurses assigned to me. They couldn't get an accurate reading/diagnosis because of the amount of ascites fluid around my abdomen. Now from that day I have had a direct number straight to the liver nurse.All I'm saying is that maybe you need to be admitted and meet someone first before actually getting a liver nurse.
All the best Danny x
I think it's a post code thing Danny, some areas (like ours) have zero liver professionals - just one gastro consultant in our areas two hospitals. We have to go out of area for actual liver support and hubby was an inpatient at diagnosis. Sole fibroscan machine in our healthboard area is in Blood Borne illnesses department and hubbies gastro says he can't access it for his liver patients which is all a bit mad.
Gotcha Katie. I'll keep you updated after I go to Leeds on Thursday. After the hernia operation last Thursday, they did more blood tests and my liver salt levels are high. So what was supposed to be a week off (holidays) has turned into a hole hospital day affair. I'm the only one in our post transplant group going.
Don't get me wrong I know it will still have other patients there. Everything was going swimmingly and I'm back the following Tuesday for normal post transplant appointment anyway.
Better to be safe... sorry for going on.
Danny x
PS sorry for going a little off subject, I had 2 conversations in mind.I have to travel.. it's around an hour direct drive (no traffic) I was going on the train (cheaper) for 3 months that is 2 hours travel time. I understand the area code thing. I also know that there is not enough money in the pot for all big/popular hospitals let alone the small town ones. 🥺
I hope your husband gets the help needed, I think it's been long enough. I now understand why you are such a cleverer in this subject and area because of the bloody distance you have to travel. (Joke) 😆
Just another day in a life Danny x
Aye our trips to Edinburgh are 100 miles each way and we end up taking our caravan over and stop in the area, during hubbies transplant listing we sited our tourer over there in case he got the call. It's worth every mile for the quality of care hubby gets at the RI of Edinburgh. Local guy is nice but way, way overworked and is a medical negligence suit waiting to happen - I know just the shear amount of chasing I have to do for scans that haven't been ordered, results not shared etc. etc. If hubby was on his own he wouldn't have had any of the necessary tests needed but he has a Katie fighting his corner.Hope all goes well with your next follow ups etc.
Katie
Hahahaha 🤣 brilliant....Yes, lucky hubby hahahaha x.
On that note I'm going to bed smiling 😊. Thanks for the support 💝
Hi Mick, I think Katie is right about it being a postcode lottery. I live in Glasgow and have two Consultants. In addition, I have a number that goes through to a specialist nursing team. I call them, they speak to the Consultant and call you back with an update,normally within 24 hours. If this type of service isn't available in your area, you should push to get the phone number for the Consultant's Secretary.
Hi All, many thanks for your precious feedback on my question. I do have the phone number of the Consultant's secretary so I will see if she can get some answers for me. Once again, many thanks.
H Mick
I think every area works slightly differently. I am in the South West and have amazing care from the SWLU based at Derriford Hospital in Plymouth. I was an emergency admission in Dec 2018 and since then the hospital has always provided my care and access to Liver Nurses.
I have email addresses, telephone numbers and medical secretary contact details and always get a response from them.
So worth pursuing and getting a system in place👍🙏
Hi Lam1e, many thanks for your reply, I live in the South West in Bristol. I am still waiting to hear back from the consultant I am under as I have been in touch with his secretary. I will keep you and others posted if and when I hear back from the consultant or a liver nurxe.
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