update

[jennyc]

Hi guys,

Well i'm finally home (after a false start on tuesday, made it home for a few hours ended up in ER with fever). Well obviously things didn't go too smoothly. The Kidney really is pushing me to my limits. I was prepared for the change to HHD but not for this.

Things started out ok on the first day, but my urine output dropped and they did a scan and the kidney wasn't getting enough blood so on the following tuesday they decided to go back in. They opened me up and the kidney jumped out cause it was too squished. Due to this they have herniated the kidney and will replace it once the kidney (and my body) have settled down.

Whilst in there they did a biopsy and discovered that i had both types of rejection(??) plus inflamation. So they sorted out the blood flow but then had to sort out the rejection. My creatinine stopped falling at about 500 ish (1100 on PD) and now after 7 or so atg treatments it's slowly falling again. The Kidney is still sleepy at the moment and hasn't kicked in so good news i'm not on D but it's not functioning at full capacity.

So Tuesday gone they sent me home but at 5am i awoke with fever of 38.5 C BP up and 130 heart rate and went back for two days as the op site had an infection. I'm currenlty 10kgs overloaded with most of the fluid sitting in my peritoneal cavity (due to pd, the fluid just naturally transfers there) and the op site is under so much pressure that it is weeping fluids (like a river at times).

So for the last two days they've had me on gent, vanc and anther antibiotic through IV, feel good but washed out. But, I'm home so hopefully i can start to recover now, trying to get used to the heat now after almost 3 weeks of super cooled hospital air. (even with ducted i feel hot).

So it's been a rough start but looking up, hopefully things will go better from here.

Thankyou all for your care and support. Whilst i havent been responding at times i picked up the phone and read through the site to keep my spirits up! So thankyou all.

[RichardMEL]

Thank you for the update Jenny!! So pleased that you are home even though it's been a rocky road. I can't imagine how that feels being 10kg full of fluids.. very bloated. How are you dealing with the meds and so on?

Fingers crossed that you're over the worst of it and things will settle for you and your little bean will get on with the job and get you peeing all that excess stuff out!!!

You've been in my thoughts!!!!

I bet you're happy to be home!!!

Hang in there! 

[kristina]

Thanks for the update, Jenny, I was wondering and I am so glad to hear from you.

I do hope things are getting better and you will be alright.

Wishing you all the best & I keep my fingers crossed & good luck from Kristina.

[billybags]

Jenny I hope things are getting better for you, you have had a rough time of it. I will be thinking of you.

[paris]

Jenny, you certainly have had a rough time. Hopefully now things will start to go well and you can enjoy the fact that you got a transplant. Don't push yourself. Take care and let us know how things are going.   

[Sunny]

Sounds like you've had a tough time lately. I hope the medicine starts kicking in so you will feel better soon and your kidney starts working well.

[Chris]

Sorry to hear you have had a rough time Jenny, I hope it get's better for you.

[monrein]

Thinking of you and hoping for better days ahead Jenny.

[okarol]

I am sorry about the challenges you have faced. I hope you are feeling better soon and all the issues get resolved. Take care and know that we are pulling for you! 

[willowtreewren]

Jenny, it sounds like you have been through the washer!

Now let's just keep getting better and better kidney functioning! 

Thinking of you.

Aleta

[cariad]

What an ordeal! Sorry you had to go through all of that. I did picture quite the scene with your kidney jumping out at the surgeons when they reopened the site.

I'm hoping the kidney is now awake and ready to get down to business, Jenny. Best of luck with your continued recovery. I'm wishing you many happy, illness-free years with the transplant.

 

[jennyc]

Thanks guys.... 
It's starting to settle down now a bit. my creatinine is steady at 200 (WOW!) but my Tac levels are really high so could be stopping it comming down.

Richard.. the meds aren't too bad, a few side affects but i think we've almost kicked them by spacing the meds out a bit more (hopefully). I was talking to a guy in clinic today who was saying that a rough start can mean long life for the kidney. He's had his for 7 years and still going strong (in there for unrelated infection) but it took 3 months for his to get going properly. So fingers crossed this one does the same.

I already feel better, i don't wake up sick anymore and the fluid is slowly reducing (i was 68.8kgs this morning, but i think i've lost wieght so my dry level is less). I actually fell asleep on the lounge last night so good not to be hooked up.

It's looking up for now, hopefully it will stay that way. Will be having a biposy soon so will know more then.

Cheers guys and bye for now. Thanks for the kind words and thoughts!

[RichardMEL]

Jenny so happy for you hun.

Interesting about the "tough start = long life" idea. I have a friend who had a pretty rough time with her transplant initially... and that was 13 years ago - still going.

man if I got 13 years out of a transplant I'd be doing cartwells.. of course you'd always want more, but if someone said to me "We'll get you a transplant and it will go for 10 years" I'd be pretty bloody happy with that I reckon.

Fingers crossed you get 7, 10, 13 and longer out of this one - so you can have a LIFE with your family!

So glad your creat is coming down and the fluids are going. This is awesome! 

Have a drink for me!

[Jean]

Good to hear Jenny. Hope it continues to get better and better for you. I too had strange visions at the thought of your kidney jumping out at the Dr. Talk about a non routine day.
Good luck Girl.

[sico]

Took me forever to find this thread.

But you know how happy i am for you Jen. 

I think after everything you've been through you deserve a good run with this kidney.

Keep us updated on your progress.