Results of the CT scan.

[Yvonne]

An update: I had a letter back from the one I wrote to John's surgeon but unfortunately John open my mail !!!!!! I was a bit upset but as he read it there is nothing they can do for him as it would be life threating to carry out a reconstruction. But did not say they could not repair the hernia. As I said before John has an appointment on the 25th Sept. and now he wants to cancel it and just take his chances. What do we do?  It's his body so I suppose it's his decision. But I would think he should go to the appointment just to keep his notes on the list.

Changing the subject, last weekend I said to John do you fancy a trip up to see the kids for a couple of days, he said no, I said well I've made up my mind to go on my own then, right up till the morning of leaving I felt very hesitant but off I went.  I had a lovely time with my children and grand children they all went out of the way to spoil me, and we party for 2 nights. It was like a bird being let out of a cage and I have come back with a different look on every thing.  How long it will last I do not know but I feel great, must do it more often.

[Jean]

Yes, Yvonne, do it more often. You sound even better, and how wonderful to be with your kids. Keep it up girl, you are doing great!!!

[The Wife]

I'm so glad you took time out for you.  It's important.  I have dinner with my daughter and grandson once a week, attend yoga classes, and get out pretty much every day, even if it's just to go for a walk around the neighbourhood.   I have discovered that us caregivers are often lost in the mix.  Because of this, we need to be vigilant in knowing and in taking care of our needs.  Do what brings you joy, give up feeling guilty, and enjoy life.  It is possible, even with the challenges that sick husbands bring.

[paris]

Good for you Yvvonne!       I am the one with kidney disease, but we have been married a long, long, time and since being diagnosed I feel a great need to remember who I am----just me.  My mini visits with my sister make me feel like a teenager again and the visits with the grandkids feel so very loved.   Sometimes wives are taken for granted, no matter who is ill.  They are so use to having us there and taking care of everything.    I am so happy you didn't back out and that you "partied" with your kids and grands and that they spoiled you.  You deserve many good things.         Start planning the next visit.   

[billybags]

Yvonne, I really hope they sort him out, I feel for both of you. Keep positive and take a rest yourself.

[willowtreewren]

I'm so glad you were able to get away, Yvonne. Especially to see children and grandchildren!

Keep taking care of yourself. It will be better for both of you that way.

Good wishes for you and for John, too.

 

Aleta

[Yvonne]

Thanks for replies, but what do you think about John wanting to cancel his appointment on Friday? Do you think it's up to him or should I say he must go?   I really feel like washing my hands off him if he refuses to go please help.

[billybags]

Yvonne, I dont know what to say to you. He must be so scared, and fed up with the whole thing. You also must be scared and frustrated. Just tell him he needs to keep this appointment, things change so quickly. To-day they can not do it, to-morrow they may be able to. Please tell him not to give up, tell him to think about how you feel. Lots of hugs to both of you.

[The Wife]

Oh boy, this is tough.  Has John told you why he doesn't want to go the appointment, other than he wants to take a chance?  It does sound like he's afraid and frustrated.   Have you told him how you feel, how much extra stress he's adding to your plate by avoiding dealing with this?  Is he aware that you're ready to wash your hands of him?  What about your children?  Can they tell them how they feel? 

My heart goes out to you. 

[greco02]

Don't hate me.....but maybe he is just finished with all of it and want to be 'done'.  He sounds like my husband who isn't even ready for dialysis but has already told me he doesn't want it and he doesn't want a transplant.  I offered one of my kidneys and if I were a match he could go straight to the transplant and skip the dialysis and again, he said no.  He feels the quality of his life sucks and why prolong the quantity if there is no quality. 

[Yvonne]

John has agreed to go on Friday, but he said only for my sake! I think we both know it will be a waste of time, but at least it will keep him in the system. I will write again after Friday. I have taken a photo of his 2 hernia's without the stoma bag on to show the doctor, because nine times out of ten the surgeon does not have time to examine him.

[billybags]

So glad he has agreed to go Yvonne.I will watch for your post on Friday.Love.

[Hanify]

Good on you for having some time with your family.  Yes, it is his decision - but it sounds to me like he is making it from an uninformed position.  It is a perfectly OK decision to make and would be very hard for you to accept, but I really hope he looks at all the options first.  I'm likely to be on dialysis the rest of my life and I'm only 46.  So I have to come to terms with that don't I?  I know I always have the option to stop if I want, but I would make sure I knew what that meant for me before I did it.  Thinking of you as always.

[Yvonne]

Off we went to the hospital on Friday, only sat there for 1/2 hour before we were called in to see John's surgeons registrar.  I was a bit upset by this as thought we might see his surgeon, But after the lady registrar read John's note and the examined him (left John in another room and came and spoke to me) she decided to call in his surgeon for another oppinion. He examined John and said how well he looked and asked him how he was feeling.  John as usuale boasted how well he was, I then had to point out how he has to go to bed every time he has this pain in the tummy and the fact that he will not go out anywhere because he is always so tied, and the trouble we have with the bag as John's skin is so sore around the stoma.
He sat us both down turned on his computer and then showed us the results of John's CT scan, John did not want to look but I was very interested. He showed me all the intestine sticking out through the Hernia he said he must have a word with the other surgeon that helped with John's hernia 9 months ago and see if they can re site the stoma just above the old one, put a mesh on the hernias (he now has 3). The hernia is the reason the bags will not stay on John and doing this operation will give him back a better quality of life.
John and I have not spoken about this since coming home and don't suppose we will until he receives a letter telling him when he has to go in, so it's just another waiting game.
I must add the registrar and the surgeon were excellent with us yesterday, came away feeling very satisfied with how they sat us down and had time to explain everything.

[okarol]

  That sounds good Yvonne. I hope the surgery gets scheduled soon.

[Jean]

I hope so too Yvonne. John has been thru enough, and so have you. A better quality of life would be great for both of you. 

[lola]

 

[Yvonne]

Can anyone advise.  John has had blood in his bag and thick mucus stuff for the past week. He says he is feeling fine, but got the cramp and itching back.  On the last check up at the renal clinic his creatinine was 435.
John as normale just wants to leave it until next check up in December !!!!!

[Hanify]

Doesn't sound good to me.  What does the specialist say?

[Yvonne]

It's John's 74th birthday today.  He is always thinking something bad is going to happen and he won't reach the next birthday but here we are, but not fit and well, think he has a urine infection but won't go to the doctors.  He knows best.

[billybags]

Yvonne, Its a man thing again, you could cheerfully strangle them. Some times I think sod him let him get on with it, they make you so angry.