Worried

[Catmeow]

Hi all, I hope you are as well as can be. I just wanted to ask, if i should be worried about my hubby's recent problems. He has frequent nose bleeds and is suffering with a stabbing pain in his right side and back. As well as the usual, feeling drained, tired and his rash that's spread all over his body now because still hasn't been able to get an appointment with his GP for the creams he needs, they ran out 2weeks ago so it's flared up again. Took his case to the hospital pals team on Friday to help with GP appointments, seeing his consultant more frequently and asked about being put onto the transplant list. Have to wait 2 weeks to see what they can do. Sorry for going on

[Hidden]

I sounds like your not getting the answers you need, and that there is now an additional worry of not knowing what the future holds, or what is happening. Your local Hepatologist or Gastroenterologist is the one who has all the answers and is the one who decides if a liver transplant is a viable option. Just because someone has cirrhosis, they don't always need a transplant. It's all about long term health issues, and improved quality of life.

If you feel that your not getting the answers you deserve, or are becoming anxious yourself, then this could be having an adverse effect upon your own health. I would have a word with your local Healthwatch organisation. These guys help out when things seem to breakdown between the patient and the medical services. Have a look at this site, and type in your postcode to see if you have one in your area. These people are there to help you. I hope this helps: healthwatch.co.uk/

Good luck.

[Catmeow in reply to Hidden]

Thankyou Richard, his consultant said be ause he has decompensated liver cirrhosis that he would need a transplant. But that was back in August 2018, we have heard nothing since. I try not to worry about my own health although I have been having regular dizzy spells, I haven't told anyone because it's not about me, my hubby's health is obviously worse he's only 44 and I would never be able to cope without him. I will have a look at the site that you recommended, thankyou so much

[Popel in reply to Catmeow]

I’m sure my partner feels the same about not being able to cope without me.i hope so anyway🙄 lol.I found the wait just the worst after being referred .it took about six months after the referral was sent.i know it’s hard but try to be patient.easy for me to say your thinking.i also felt extremely bad and still do for putting all this pressure on her shoulders and I still am after a tp as I’m still off work and we are relying on her wage alone at the moment.i Do wish you both well.hope you hear something soon.paul

[Catmeow in reply to Popel]

Thankyou so much. Your partner definitely feels the same about you. The hardest thing is pretending to be strong in front of him but inside I'm heartbroken 💔 and find myself having a cry when he's sleeping. I understand what you're saying and I will try and be patient. I wish you all the best in you're recovery. Remember she loves you as you love her too and that's one of the strongest things that can get you through. Take care

[Popel in reply to Catmeow]

İ knot she does really it just brought it home to me how much my partner and yourself actually go through.cause it’s not just the people with the disease.it affects a lot of people.so thanks your post it was very sweet.so stay strong.you’ll get there both of you.paul

[Wass71 in reply to Catmeow]

Hi catmeow, just to make sure I haven't misunderstood, are you saying in August last year the Dr said your husband needs to be assessed for transplant, and since then you've had no contact from the hospital, no appointments?? Because if he has cirrhosis as a minimum he should be having 6 monthly scans and blood test screening for cancer (due to increased risk caused by cirrhosis). Is he being seen at a transplant unit, or a local hospital?

If this is the case please please contact the consultants secretary, the number should be on any letters you have been copied into. If not then call hospital mainline and ask for the consultant /secretary. Alternatively call his GP and ask for the Dr to call you/him. Then you can ask them to follow up, to find out what has happened. It sounds like he may have been missed. Always advocate for yourself (well your husband), don't worry about being pushy or bothering people. Just be polite, tell them you are desperately worried, ask for someone to look into things ASAP. Always ask them will they get back to you, or should you call them back? Get a time frame, so you don't worry for too long.

People do get missed for whatever reason, but your husband should definitely be seen sooner rather than later.

Good luck x

[Catmeow in reply to Wass71]

Hi, yes, he was diagnosed last August with decompensated liver cirrhosis and he consultant told him his only hope of survival is with a liver transplant. He has only seen his consultant once since diagnosis. He isn't due to see them again until late August this year. His last liver scan was early last November but no appointment has been sent for another one yet. He is supposed to be being seen at his local hospital. He hears nothing. He can't get in to see his GP because there are no appointments and when he asked for a telephone appointment it was denied. They detected concerns in his latest blood tests but he can't get to see anyone for the results. His consultant hasn't referred him to a liver assessment unit or anything.? Its so frustrating! That's why I got PALS involved to see if they could help.