Feeling very alone in this world

[Chrissy2k]

Hi, I don’t know if anyone else feels this way, but I feel that I’m not being told everything. I don’t know how my liver is functioning, I don’t get test results and nobody seems to want to spend the time I need to resolve or better understand my problems. I have been referred to a day hospice for support, and, although they are very lovely people and I have the opportunity to chat with them I still feel that I don’t know enough about my health issues.

[alfredthegreat]

Hi Chrissy. I'm not sure what test's you are referring to. If you have had any tests done at your GP surgery then you have the right to ask for your results and to have them explained. If your tests have been done by a specialist then it is normal protocol (as far as has been in my case) for the specialist to write to your GP with the test results and you should receive a copy of the same letter. If you have had tests but not been informed of the results then you could either contact your GP or your specialist's secretary requesting the information. Don't feel alone, you will get good and caring support on this forum. Wishing you all the best. Alf

[Hidden in reply to alfredthegreat]

Yes, Alf is right. You have a right to see your results and have them explained. Please take care love and hugs Lynne cxxx

[Hidden]

Hi Chrissy. You MUST ask. The more interest you show the docs, the more info you will get from them

Best of luck

Laura

[AyrshireK]

Have you been told what your current diagnosis is? If possible read up on that and so you can ask guided and informed questions. Write down any questions you want to ask your doctors so you can make the most of your consultations.

You must ask - we've found doctors who sort of go through the motions and don't give much away but we've also got others who will take the time to go through all your questions with you and don't leave until you've got the information you need.

It definitely pays to read up a bit yourself so you can ask pertinent questions and write them down so you don't forget them. Also, have you got someone who can go with you? Often two pairs of ears are better so you can re-discuss the clinic discussions afterwards.

Hubby struggles with all the med speak so i've been the one to do all the research and we certainly get the best from clinic appointments when I pull out our wee notebook.

All the best, Katie

[Smyally]

Chrissy please don’t feel alone. You are entitled to see and have your test results explained to you. I always take my hubby or my mum in with me as I sometimes get a little confused. By all means educate yourself by looking up about your health issues. I find the British Liver Trust and NHS websites the most informative. Wish you the best of luck going forward.

Take care

Julia x

[Pizamkazdw]

Hello, I am sorry to hear this. Please, know to some extent we all feel this way. Consultants are very busy people and sometimes too they do not tell you things because it doesn't resonate with them that you might need it or their thoughts are just convey the main message and care for hundreds of patients they have aboard. Sometimes you need to push a bit. Talk to ppl. All of the medical staff, not only doctors. I got some of my worries solved by asking around. Obviously, I have no insight into your own personal situation but this is what worked for me. Plenty of hugs!!!

[Hidden]

Hi Chrissy

As others have said please don’t feel alone - although I empathise with everything you have said.

Some good answers above! I have never had any consultant letters copied to me either. I think it differs from Hospital to Hospital. Even after specifically asking for a copy I don’t get them!

However speaking to my GP practice last week they offered me - just ask - access to all my medical records online. Wow this has been interesting. For instance I found out I had another condition I hadn’t been told about - that was a bit worrying given the implications re travel insurance 👎🏻.

As everyone says keep asking 👍.

Good luck Chrissy.

Miles

[MPan]

Please request your GP for online access where you can access the results and see the diagnosis for yourself. It definitely will reduce your anxiety.

[Peeps7]

Hi Chrissy, totally endorse all of the above comments, so very important to take someone along with you to every appointment and ask, ask, ask. I have ended up interrogating my husband’s specialist and I think he has learnt to indulge me! From the off and prior to an appointment I load up my phone with questions (paper would do) as I think of them and when we are with the specialist, I type in the reply. Please do not feel alone, there are so many of us on this forum who are in the same boat and very happy to give support, it is such a rocky road, there is the irritating saying about our cup being half full rather than half empty, but it is true. Feel free to rant, hugs Anne x

[davianne]

Hi Chrissy2k, I am so sorry to hear of your anxiety and feeling your not being given the info you have a right to. You should make a double appt with your GP, and that will give you the chance to ask all the questions, and voice your concerns. Although GP's are not specialists, they can still interpret your test results and give you some peace of mind.

Take care,

David

[Hidden]

Hi Chrissy2k

Great replies from the other members here. As they have said it is very important you do keep asking questions to your doctors and get clarification about your diagnosis.

If you would like to call the helpline we could have a further chat? It is open 10am to 14.45 today.

Very best wishes

Trust1

[Red50]

Hi Chrissy2k, that is exactly how I felt my consultant told me I had cirrhosis and within five minutes wanted me out of the door. Like all the great advice from all the other lovely people, I think we have to be stubborn and insist about our questions All the best 😘

[Radnor]

Do you feel intimidated by medics and find it difficult to say muc? Its a recognised condition called White Coat Syndrome. My daughter suffers from this . It is nothing to do with intelligence or people's nature either. My daughter has no such fears if its for loved ones health, just her own. Last August she went into hospital for a big op. I had to go with her on appointments or her husband. She cannot speak. On the day of the op her surgeon saw her vitals and immediately said, Ah White Coat my dear. This may bee happening to you when you go to appointments? Peps 7 has already said she interrogates on her husbands behalf. You need a good friend or family member to ask questions and have these written down before hand. Liver disease is complex in any case, so 2 pairs of ears are better than one. You could be worrying needlessly. I went with an ex BF re his cancer. I saw him go white when the consultant was looking at his last tests, ' nothing impressive, no interest on that, nothing !' He took it he was in serious trouble, I realised the consultant was saying, no trace of any cancer. Its worth trying, you need to know where you are up to and someone to help you digest everything. Hazelx

[Katiesgran]

I find the liver specialist nurses to be very good. They seem to take time to understand your concerns and discuss them with you, explaining in non medical speak what is going on. Mine also recognised that I needed some emotional support and arranged for me to see a psychologist attached to the clinic and that helped me so much in a short time. This is an overwhelming disease when you are perhaps faced with your own mortality for the first time and 8n your mind it’s easy to overstate the outcome. Ask for help, from any informed source you can. You are not alone.

[whodunnit_author]

Hi, sorry to hear this. If you don't have family or friends who would be confident to support you, there may be a local advocacy service that can help, or take a look at patients-association.org.uk...