Hubby's assessment

[treamber]

was just a chat with the doc,was told hubby would be admitted to kings for about three days for his assessment,he has been in local hospital for last four weeks anyway the doc said about 6 weeks time but last night got a call from them and they are going to transfer him to kings on sunday,cant quite believe how fast this is happening i am now praying they agree to put him on the list .

[bgraham]

Prayers for your hubby! I'm new to this my hubby was diagnosed with cirrhosis about 3 months ago they drained 7 liters of fluid just starting this roller coaster ride trying to learn all I can from this group! MY hubby is asleep right now because he stays very fatigued,confused and underweight very scary just trying to find a support group thanks for listening or reading.

Benita

[pear-shaped in reply to bgraham]

Dear Benita,

The whole process makes one very disorientated - often feeling overwhelmed by what is happening... Please take care of yourself as well - you are now having to be his eyes and ears as well as his mind... Make sure - when he is conscious and talking - you write down any concerns or confusions he has - so that you can ask the docs about it...

Lots of love,

Pear

[bgraham in reply to pear-shaped]

Thank you so much! I really appreciate all the the advice I get her hope everything is alittle better with your husband bless you

Love Benita

[angse in reply to bgraham]

Hi Benita

Hopefully you will find help and understanding here from people who suffer this disease, I have had cirrohiss for 2 years, hope your husband gets some relief from his symptoms soon. Annette !!

[bgraham in reply to angse]

Thank you so much Annette!

Benita

[bestiebabe in reply to bgraham]

Depending on where you are there is a support group for post and pre transplant patients and family at St James in Leeds. It is a closed group but I could send you the link if you think it would help, we have members from Birmingham hospitals as well.

[bgraham in reply to bestiebabe]

I live in the United States small town in Alabama! I so enjoy reading everyone's post it makes me feel like I'm not alone and I've learned so much from you guy's! Thank you so much!

Benita

[pear-shaped]

Dear Treamber,

I wish you and your hubby all the best... This is going to be one huge and strenuous journey... You must (although you wont feel like it) keep your own health up - make sure you keep a bottle of water by you and also (its becoming a bit clichéd!) keep a diary/notes on what is being said - so that you can refer back to it - hubby will not remember or have the right frame of mind to question his care - so you may need to be explaining procedures/results/decisions in a way that he understands...

Lots of love,

Pear

[bgraham in reply to pear-shaped]

I have started writing everything down, I sometimes feel that they are not giving me information I need that's why I come here and read all that I can, you all are such strong ladies I admire you all so much and the humor you bring also!

Love Benita

[jimboriley52]

My best wishes and prayers go out to you and your Hubby. You.May feel helpless at this time,but be strong as there is a light at the end of the tunnel

[bgraham in reply to jimboriley52]

Thank you! Bless you

[provogirl46]

All the best to you and your hubby. My husband had his transplant at King's and he will get excellent care there. The whole process is very scarey but you will get through, especially with this group for support

[bgraham in reply to provogirl46]

[bgraham in reply to provogirl46]

Thank you so much!

[carmik]

Good Luck with the assessment, hope he is listed.

[julieju]

Wishing you all the best. Superb but simple advice from pear-shaped about keeping notes. It will keep you focused plus, any doubts/ questions in your mind won't be forgotten. Just keep scribblin.

[bgraham in reply to julieju]

That is such good advice I really need to ask about the meds for constipation when we go back to doctor or get them to phone it in he only went one time today and he seems more off balance and confused today

Thanks Julieju

[mrsmerlin]

I prefer to record my appointments on my phone but if you do this you must get permission.

I am also going to say something else. On this journey you need to make space for you. It is essential that you have something that is just for you. Perhaps meet up with friends or family or whatever you enjoy. This is for you not your husband and trust me it is one of the best gifts you can give him.

It will help keep you sane and he will not have the burden of thinking he has taken your entire life with his liver.

I think too often the spouse forgets to nurture themselves and forgets how important they are. Plus you will have something different to talk about.

I know it's made a huge difference for me just knowing that my husband has put himself back on his priority list. I have enough to carry without that guilt as well. He is happier and I am happier because of that.

I hope the roller coaster ride your ticket is for is a short one

Oh and feel free to come here and vent Amy time x

[bgraham in reply to mrsmerlin]

Thank you!

[dizzime]

Good luck with everything I hope he gets the green light at the assessment. As put previously keep notes. Get a diary and write everything down in it daily. This includes all your appointments with the Drs to everyday things like how much fluid he is drinking to how many times he goes to the toilet, details are important. Also how he is feeling daily, confusion, tiredness etc. All this information is needed when questions are asked and is easier if everything is written down. I had my transplant in 2013 and I kept a diary religiously I found it helped me to understand what was happening and also i felt it gave me some control over what was going on with my life. Kept me sane lol. Though some people might think not. Ha ha. Any way keep positive. x

[pau7]

Best wishers.

You are both in our thoughts and our prays.

[Jmears]

I wish him good luck, i hope he gets on the list.

Regards

Jacqui Mears

[RodeoJoe]

I had a transplant 4th November 2014. Trust me, the best thing is that your partner has been admitted into Kings. The assessment week was both the best and worst "experience" for me ever. I was very ill and had just been referred from my local hospital having suffered confusion after a lack of sodium due to the diuretics. I was weak physically and mentally, and almost paranoid that the Dr's were conspiring to fail my assessment. I was very very very scared.

My partner was an angel and she just worked on keeping me positive, never letting me think I would ever not get on the list. It's the Dr's duty to tell you it might not all go to plan, but if I had only heard that and not been convinced by my partner that I would be OK I think that week may have turned out differently.

If he's anything like me, then your partner will be out of his mind with worry. I barely slept the whole week, which just exacerbated my weakness. But it's important to keep going. I was forcing myself out of bed and a lap of the local park every day, it was exhausting.

I found out the following Friday I was on the list, and 2 weeks later had my transplant. Stay positive, keep your partner positive!

[angse]

Good news treamber

Although you and your husband must be overcome with it all, he is in one of the best liver units in the world, I attend there every six months, under the care of professer O'Grady, and they really help. Good luck Annette!!

[treamber]

Thank you all very much for your advice and best wishes it means a great deal to both of us i am just sorry i know that i am in no position to be able to give advice to anyone at this stage but i am always happy to just talk.

It was doctor o grady we saw on monday and he was really nice he was easy to talk to and he put us both at ease the moment we walked through the door.

Thank you all again.