CREON supplements

[h0b0]

Hi All,

Not posted for a while as been a little busy & confused. My last post was concerning Terry's pancreatitis following a biliary stent procedure. Luckily he's feeling OK now but still lethargic & skinny. His appetite has improved tremendously but he's not gaining any weight. Pre xplant he was a 36" waist. Have to admit it was all beer belly but 3.5 years later he is now 28"! He went for an endoscopy at our local hospital & his pancreas is not performing properly so the consultant has suggested the above. My concern is that after 2 appointments with the liver team at St James' Leeds is why haven't they picked up on this ?I am very grateful to the transplant team for saving his life ( and mine if i'm honest ) but the after care seems to be deteriorating somewhat. I am not blaming the consultants but the after care team (or a certain nurse) who is my first port of call is hard to contact & not very helpful when I do. She actually makes me feel that I'm wasting her time. Can I ask for another point of contact?

[Hidden]

Hi h0b0 it’s really sad to hear how abandoned you are feeling because of the lack of aftercare. Anyone can ask for a different point of contact. In my experience it’s worth the effort of setting out specific details of concern eg difficulty getting contact with the nurse and lack of nurse response to your specific queries etc. It will then be possible for it to be clear if this is a failure of an individual or the lack of resource in the system. Some nurses are better than others at coping with the stresses of 130% over case load. Don’t be afraid to say that you aren’t feeling safe with the level of support you are getting. If no one speaks up there is no case to be answered by the administration of the service. I hope things start to improve for you both 🙂

[h0b0 in reply to Hidden]

Thanks soo much. I have not actually met the nurse in question. She took over from his original one so I have only spoken via phone or email. She just isn't as thorough as the first one. I have actually seen her in clinic & I have to say that I feel that she swans around a lot. She does however seem to be appreciated by the patients that she knows. Should I make myself known to her? I don't wish to cause any trouble but I feel that we're being overlooked by her.

[Hidden in reply to h0b0]

You won’t be causing trouble though, you’ll be preventing it!😄xx

[Hidden]

If you can stay calm and ask that nurse very kindly if she does think you are wasting her time because that’s how you feel when she speaks to you I think it’s likely she will pull out her best performance. I had a similar situation when I asked a doctor if he was angry with me. He certainly seemed like it. He seemed to change shape under my eyes and assured me that he was not. (He definitely was angry). But he stopped aiming at me. And I felt so much better for speaking out, more confident that I can cope with this very tough journey. Best wishes

[Steak]

Hi while I was going through my liver assessment 4 transplant 1 of my scans showed a small cyst on my pancreas but they were not overly concerned at that point. In December I had another mri scan on my pancreas and over 11 weeks later still waiting 4 results.! I am a jimmys patient 2. Take care

[joeburger]

Morning h0b0 I'm sorry you feel that they have let you down, I am also a patient at St James' and I was there two weeks ago I had to see the post tp nurse before my consultant then because I have been having dreams about drinking I had to speak to someone else, so I can honestly say I have had no problems that are concerning. The only thing for me is that when I receive my letter with the outcome of my appointment I find that my words have been changed as to what they think I'm thinking if that makes any sense.

I really do hope you can get something sorted soon.