[PatGParticipant]

I had a consult at LRI yesterday and was knocked sideways when the consultant started talking about SCT! After VCD finished last June I was deemed ‘stable’ but over the last 3 months my eGFR has declined a little, but the main reason the consultant wants to go to SCT is the amount of protein I am still losing in my urine. It was such a bombshell I didn’t ask the questions I should have asked – like what happens if I don’t have SCT, what is the prognosis if I don’t have it – but no doubt I will be able to ask those questions after I have seen the transplant team.
I have followed so many SCT journeys on here that I feel that I really know what CAN happen which is scary but I know is doable, but what worries me most is the aftercare. My partner is wonderful in keeping my spirits up but can’t cook to save his life. He’s OK at cleaning but can’t work out what to do with an iron. When we first got together 12 years ago he didn’t possess one! He has to go to work so I would be on my own all day and I am terrified that if this is the decision which makes most sense I will not be able to cope. I sound like a wimp but I’m not really, just trying to be practical and cover all the bases. Whatever happens we will have our lovely cruise holiday in Aug/Sept. Memories are important too.
Thanks for listening and stay well
Pat

[johnandjunediamondParticipant]

dont worry pat, all will work itself out you concentrate on yourself and stay well!
you could also write down the basics in plain english…..like washing machine settings,
oven setting’s/ basic cooking instructions like potato’s and veg instructions and time’s.
we men all claim to know nothing ( but that’s idolitas )it’s amazing what we pick up but dont say!!
best wishes,john.

[rebeccaRParticipant]

Hi Patricia, You have time to teach him the basics – and perhaps its time he learnt anyway! I know how you feel I was very rough after SCT and had to be looked after for a while after but it all worked out. I actually went to hospital with so many jimjams etc so I didn’t have to rely on washing for the whole of my stay. Stocked up on school uniforms so knew that would be Ok also. (In fact SCT was quite pricey!) A lot of people are on their own during the day when you come home – hubby would give me breakfast then go to work – it was fine. I did a deep clean of house before I went in and bought some new bedding etc so I’d have plenty changes without anyone having to wash during the week etc. I wasn’t mollycoddling hubby just being practical in making sure things ran smoothly without adding anymore undue pressure on him – he did have work as well. Just work round it – you can always get a cleaner in if you’re worried. Make soups and stock the freezer before you go in.It’s all doable, don’t worry.

Rebecca

[PatGParticipant]

Thank you John and Rebecca . I think I was panicking about the whole thing when I posted but have come to terms with it more now, especially after ‘talking’to a fellow sufferer who had SCT at about the same age and with the same Amy involvement and at the same hospital. I see the consultant next week and will have more news then. Like you Rebecca I have planned on stocking the freezer and buying jammies and pants for while I am in hospital.
Keep well everyone
Pat xx

[froghallParticipant]

Hi Pat,

Glad that you have now been able to accept the likelihood of a SCT. We are both in the same boat as it were. I too have increased protein leakage with my Light Chain Deposition Disease. The NAC calculated 3.5g. My potential treatment of HDT & SCT is fast approaching, w/c 11Aug. I managed to negotiate a postponement for the whole of July, as its my 50th and we are going away plus I cried through the whole consultation because I was struggling with the whole process. I am now more accepting and function much better by doing practical things.

So I’ve have been stockpiling PJ’s, knickers, new slippers & flip flops, because I’m not prepared to risk infection from the floor in the bathroom when showering. I’ve hinted at how useful an Ipad might be for my hospital stay- possibly a birthday gift? However  preparing my OH & 18yr old teenage son is the hardest. OH can now cook 3 dishes, which will get them through. I’ve requested his mum to help by making wholesome fish pies, and good old fashioned chicken soup. Son has been taught to use the washer, how to separate the load, and dry. Our chickens have been rehomed/fostered as after much discussion we can’t afford any chicken poo been carried in the house- INFECTION.

I too will be on my own, OH works 12hr shifts days/nights. Our dog is going to spend his days either in doggie day care or at mum in laws. Can’t cope with a very lively puppy now never mind after SCT. As for cleaning, well that’s something that’s slipped as I find  it more difficult to bottom the house anymore. So both OH & son help with the hoovering, dusting and cleaning windows.  The drier has taken care of reducing the need to iron, got it tumbling away even on these hot summer days.

However, I have been able to plan a new bedroom for life after SCT, as by changing rooms with my son, I will get a garden view. My OH has let me choose the colour scheme, theme etc, and I’m having uplifting, feminine colours with all that flutters, hovers and flies in the accessories/wallpaper/fabrics. Plus we have changed to single beds in case I have to sleep downstairs, (where the bathroom is)…..This project has really been enjoyable and I have even managed to do most of the painting albeit it a max of 2hrs per day, over a fortnight. Brother in law doing the papering Friday, carpet fitted mon, and then we can move in……

So hopefully all this will resonate with you, and remember we women as so practical & resilient. We are natural carers, and organisers. Our loved ones will step up to the plate, in which we need to place our trust,  and we can get on with recovering….

I hope you have a lovely cruise, and create even more lovely memories, which is what life is all about.

Sharron

[PatGParticipant]

Oh Sharron, it’s like a window on my life! You are a bit ahead of me as I have an initial consult with the transplant team on 23rd September after our return from holiday. Until then I am putting the whole thing to the back of my mind and concentrating on the holiday. I feel OK except like you I am unable to do all the things I used to do before and Kev helps a lot with the cleaning etc. I have started teaching him about washing and tumble drying but I despair of the cooking. I will have to make sure the freezer is stocked well.
Your bedroom sounds lovely and such a great idea. Pleasant surroundings make all the difference don’t they?
Enjoy your birthday and holiday and I really hope all goes well with you in August. Take your i-pad(which I am sure you will get for your birthday) and keep us up to date when you are able. That’s one of the positives of this forum that we know what to expect from the coal face as it were and not just what the docs tell us in their sanitized way.
Look forward to hearing how well you ride this part of the roller coaster and all my thoughts will be with you (well maybe not ALL, I will be on holiday with so many new sights to see).
Take care Sharron, keep smiling and keep positive.
Love
Pat xx

• This reply was modified 10 years, 4 months ago by  PatG.

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