Assesment

[Yuiop]

Day1. 13 lots of blood taken, 1hr chat with coordinater. Though examination by doctor. Then the dietitian came in, hubby is so under nourished he will get night tube feeds, supplement drinks and protein carbs diet. I can’t understand how he was in our local hospital last week to get drained and this wasn’t picked up! Been a long day, but worth the time.

[chugalong]

So great to hear you get the best treatment and wish you both the very best

[Yuiop in reply to chugalong]

Thank you x

[alfredthegreat]

Hi Yuiop. Glad that your hubby is getting the help that he needs now. That will help you to feel calmer knowing he is going to feel better in himself for getting the supplements and feeds etc. Wishing you both all the very best. Alf

[Yuiop in reply to alfredthegreat]

Thank you, at last I feel like a door has opened

[kyia in reply to Yuiop]

I know exactly how you feel - my partner was struggling to eat due to ascites when first diagnosed with cirrhosis and no one addressed this in the clinics. I kept saying to myself "I can't let him starve to death on my watch!" And finally, with me asking the right questions, they prescribed some fortisips and set up a regular drain routine and he gradually began to eat again.

[Hidden]

Hy up yuiop

I concur with all the others! Isn’t it nice to feel people care! Good luck for day two and hope you get the answer you want!

Miles

🇧🇧

[Yuiop in reply to Hidden]

Sure is, something positive

[GrandmaDylan]

Good luck with the rest of the assessment. He must be in a really bad way to need the tube feeding. Hopefully he will soon be well enough for the transplant. Take care. Deb

[Yuiop in reply to GrandmaDylan]

Thanks grandma ..

[LAJ123]

Hi,

Glad you have survived day one - well done and not long to go before you will hopefully start the next stage of your incredible journey. I remember my assessment like it was yesterday, so I know what your going through.

A very good start with the dietician taking immediate action to prepare him for gaining the strength required to deal with the transplant surgery for which I hope you will be listed. In defence of the other hospital where he had the drain, they have a different agenda and where not preparing him for being listed.

Hopefully you will not read this until the morning as you both need your rest and sleep. So keep cheerful, well as much as is possible and keep up the good work.

Goodnight.

Jim

[Yuiop in reply to LAJ123]

Sorry Jim , I think I read this at 3 in the morning! He defo needs to be where he is now!

Agnes

[Bobbypops1]

Thankfully you are at assessment at least, my husband too was desperately under nourished and we only wish now that we had more understanding of the importance of protein to prepare for being strong enough for transplant. It was suggested too that he should have night tube feeding, (this is when the body takes every bit of stored energy you have worked so hard to put in throughout the day, in the early hours when it has taken all there is stored it then takes from the muscle tissue which is why you are so thin and weak). Anyway - he really didnt want the tube, so we worked really hard to get as much in him as possible. Difficult when you just don’t feel like eating, let alone double what you would normally eat. The Fortisip 18mg were taken as often as I could get him to have them, I used to cajole him like a small child “just one more mouthful”.... he used to complain constantly that I had put more chicken on his plate than what he had agreed to eat. Our fridge was full but he had no appetite which made it a constant battle. I used to keep a cooked chicken in the fridge and pick bits off throughout the day between his meagre meals and get him to eat a mouthful almost like a kid would have a treat . It was awful. But I can’t tell you how important it is, just try and load him with energy giving foods, every half hour if need be. It is an uphill battle but fingers crossed you will pass assessment and be on the list, and he will be so grateful for every ounce of weight he has accumulated prior to transplant.

Good luck, there is light at the end of the tunnel after assessment and now 10 months post transplant my husband has gained all weight he lost, exercises well and is totally unrecognisable to the man he was this time last year! Your husband will return - trust me, the nightmare will one day be over and right now you can’t probably believe it, but it does happen. Good luck with feeding him up!

[Yuiop in reply to Bobbypops1]

Thank you so much for these encouraging words, it’s been a downward journey the last 6 months , so hopefully it’s upwards and onwards from here x

Agnes

[Kate50 in reply to Yuiop]

Hi yuiop, I just wanted to say your partner is lucky to have you, good luck with the assessment I hope it goes your way and also make sure you look after yourself as well 🙂 also Edinburgh are fantastic, the coordinators are lovely , take care 🌸🌸

[Yuiop in reply to Kate50]

Must say, impressed is an understatement .. they are very well organised here. Thank you

Agnes

[Hidden in reply to Yuiop]

Yuilop, my voyage started locally but fortunately for me, both consultants came from the Royal Free before relocating. They told me that I would not be going to the assessment on a stretcher. 8 months and three admissions later, I went for the assessment. Three tiring days, both emotionally and physically later back home. A week later I got the call that I was listed, albeit type B blood, only 4 transplants nationally in 2017.

Follow all the advice and touch wood, the voyage will have a positive conclusion, compliance is everything.

Good luck, sleep well (as you can) and let us know how it goes. If you get to the assessment you are well on the way to being listed.

[Yuiop in reply to Hidden]

Thank you .. yet more encouraging words . He has 5 full days, then on Friday afternoon all the table gets together with results .. we will be told what’s happening then.. all real now !

[Kate50 in reply to Yuiop]

Hello again Agnes, just another wee snippet of information, it was quite late afternoon on the Friday before I found out the results of the team meeting, I think it was after 5, just so you know if you are arranging transport home and stuff and also if like me you get impatient waiting about, I think by that time you are just desperate to find out if you are to be listed, they also like family and your support network to be present good luck 🍀🍀

[Yuiop in reply to Kate50]

Thank you, that’s prob why they told us Friday evening x

Agnes

[mrsmerlin]

Glad you are at assessment for him. That must be such a load off your mind as they will examine every part of him.

As for the eating, I survive on one of those protein yoghurt - large tub - a day for several days at a time. As long as I take the recommended supplements my dietician is ok with it for it as ling as it's only for a short time. I am not assessed I have to point out.

Hope he flies through the rest of the assessment and that for this long at least YOU GET TO TAKE CARE OF YOU!

I deliberately put that in capitals because the easiest thing for carers/spouses to remember is that you are equally important.

Rita xx

[Yuiop in reply to mrsmerlin]

Thanks Rita, I was a paid carer for 12 years, giving respite to full time unpaid carers, and I now know how tough it is now the ball is on the other foot. ME time goes right out the window, but I like to think I am a strong 62 year old, and lucky to have my health. I’ve seen all too often sick caring for sick. Thank you for your kind message x

Agnes

[mrsmerlin in reply to Yuiop]

Well at least while he's in for tests you can grab a couple of hours here and there and try to remember who you are. Recharging your batteries is essential.

It's too easy to lose sight of that at times.

Rita xx

[Yuiop in reply to mrsmerlin]

Be great if I could sleep better at night .. my brain needs an on off switch. X

[Jans1953]

I have to say that up until assessment I have all tests except bloods done locally with no real deterioration noted. After assessment when all tests done at the transplant hospital (QE Birmingham) problems were noted and I had my transplant within 2 weeks at 2nd calling. I guess they're just better at looking for specific problems to do with liver there. Never want my scans etc. done anywhere else in future.

[Yuiop in reply to Jans1953]

Even the amount of bloods they take is approx 4 times more different tests than local hospital... 13 syringes on first day’. Hubby is in Edinburgh royal, and I’m booked a room to stay here for the week, as it’s a fair travel from our home x