So what would you do

[cassandra]

Well hi sweet people all your thoughts and good vibes are arriving I think, yesterday I received a letter from hosp that I'm having surgery the 4' May by ......... The Chief Surgeon

   


Now just hoping and staying positive that all goes well. Thanx all for all your sweet support

   

Love y'all, Cas

[Charlie B53]

Hi Cass,  You'll be getting done just a few days after I get my first access.  I will be thinking Positive thought your way.  I have Faith all will go well.

Take Care,

Charlie B53

[Michael Murphy]

It's good to have the best, I along with many others are sending positive thoughts to your new fistula.  Plus I ll mention you in my prayers between now and the fourth.

[kristina]

I keep my fingers crossed for you and send you more good-luck-wishes
from Kristina.

[PrimeTimer]

This is good news, Cas, glad you won that battle! I wish you AND the surgeon many many well wishes for the 4th! After that, hope you get a good rest from all the stress and pain. Might be a good time to look at ideas for the reno on your house. All kinds of good ideas and pictures online. When we still had a house, I kept our ideas in a little box that I called our "house box"...from paint samples to floor tile samples and color schemes and the like. We don't have the house anymore but we still have our house box. Now it's a memory box. Glad I kept it. Good luck to ya!   

[cassandra]

Thank you all so much, y'all will never know how much you all mean to me, for always being there.
Charlie Good luck to you too.
Thanx again, lots of love, luck and strength to all of you, Cas

   

[cassandra]

So suddenly last Saturday I had a bit of a twitch in my stomach . Thought I was too dry
So stopped UF. Pain got worse and started feeling clammy. Thought low bp, made it to 2 hrs
And don't remember how I managed to take myself off. My weight and bp were
Perfect. Went downstairs to have my coffee. Couldn't drink it, had to throw up
Violently. Woke up in the night to throw up again. I think food poisoning ?
I wake up feeling weakly. Throw up again and it's black. Suddenly  Diarrhea and it's black.
Bugger something is bleeding. I didn't start feeling better and decided to ring the
Hosp the next day as it was bank holiday. I couldn't walk anymore by than
so rang 111 and Ambu brought me into local hosp.
I explained I have this one vein in my arm where you can take blood from so take what you need.
She actually listens, takes some bloods and sticks a infusion thing in.
I do question why I need 1 liter of saline, but the Omeprazole works great. An awful less pain
No other Dr's visit cos it's bank holiday Monday.
So this morning a dr comes to tell me he scheduled me for a gastroscopie /endoscopie an than we
can dialyse tomorrow . I ask if he's for real and that I need D now, not after you've made my
Stomach bleed again. He was not happy.
I rang HHD nurse to help me get to a hospital with D.
20 mins later another dr came to inform me I would be transferred They
Let me wait till an hour ago. So I'm in the D-aware hosp now, but no D. Cos staff gone home.
My hb is low, but K+ is fine.
Only a bit worried about my fistula op this Thursday/
Friday.

[PrimeTimer]

OMG, Cas! Was just thinking about you and your upcoming surgery when I read this. Hope they get you fixed up fast! Don't know if it would be food poisoning but sounds a little like a bleeding stomach infection/ucler from H. Pylori bacteria. Please let us know how you do. I'm sending you a tidal wave of well wishes across the pond this time! 

[Blake nighsonger]

hi Cas

[Simon Dog]

Good luck.     What kind of hospital was it that did not have dialysis in house?

[Charlie B53]

Prayers constantly until I learn of your improvement.

[MooseMom]

Oh my God, cass!  What in the world is going on?  How are you today?  I'm really shocked to read your post.  I'm so concerned about you.  When you can, please let us know how things are going.  I'm so sorry this is happening to you.

[cassandra]

Hello hello sweet friends I'm home! I had 'no Tinzaparin' D this morning in hosp. Straight to gastroscopy which was awful as always, and ulcers and scars bleeding, and a lot of hernias also in the (forgot name) small intestines and esophagus, and stomach. So it's okay. Painfull but it'll heal with double dose Omeprazole.
Dr went straight to cancel op for Friday and came to tell me that "they had to make sure it would be by The Chief again when rescheduled. ( I explained [ridiculously emotional] the hassle it was to get that sorted in the first place)

And so now I'm sort of 'happy'. In pain but I'll live. Back for another gastroscopy in 8 weeks to see if it's healed.
I'm sure I'll keep oldy fistula going, and develop 'better' veins in my other arm with at least 8 weeks more squeeze ball exercises.

BTW I asked him if it was possible for him (head Nephrology ánd he called me his old time friend     ) to inform his colleagues to not tell people with a swollen fistula arm to "not use it and keep it raised" but to give them a squeeze ball and exercises.

He said he would, and I believe him

Thank you all again for all your wishes, thoughts and prayers

Love y'all, Cas

[cassandra]

What kind of hospital was it that did not have dialysis in house?

Lots of hospitals don't have D facilities. This hospital has a clinic (where I used to go) but it is not under the care of the hosp. It's from Fresenius which doesn't take people from hospital. Not in their contract from the NHS (I checked that)

[MooseMom]

Ooooooooooooooh, I've been waiting all day for news from you!!  How funny that you are having to give fistula advice!  They are lucky to have you as such an educated patient.

I'm glad to hear that you are home and done with all of this mess for now.  I wish I could say the magic words to have all of this go away, but I'm happy that you are home.

What is Omeprazole?  I guess I could look it up, but I think I'd learn more from you than from the internet.

I am sad to hear, though, that your op with The Chief is having to be rescheduled.  I can certainly understand why you'd be so disappointed.  But at least it will be done by The Chief, right!?

Thanks so much for the update!

[PrimeTimer]

  Whew! I don't know if they make 'em any tuffer than you, Cas. Glad you are back home and healing. And no more puking!    Good thing they don't have an emoticon for diarrhea....

[cassandra]

Your toooo funny PT, and thanx. Yeah the puking emoticon will have to do   
MM thank YOU

Here comes the Omeprazol
It's one of the heavier proton pump inhibitors like Ranitidine is. So it reduces the acid production from your stomach lining, sothat the wounds in your gut don't get attacked by the acid and get a chance to heal. Longterm use is not a good idea cos the acid needs to break down food so somewhere else in the body the nutrients can be absorbed. Longterm use causes shortaches like Magnesium and vitamines.

So to increase the speed of healing I will have to change my diet a bit too.
So the 14 rolls a week of chewy mints will be out (mint 'weakens' that closing valve from your stomach that stops acid coming up into your esophagus (where it causes damage) Also my near litre a day of coffee will be reduced to just one delicious cup. Also alcohol will be a no go for a bit (she says)

Love y'all, keep strong all, and lots of luck all, Cas

     


Hubby bought all sorts of tea already. So sweet. And he had to deal with the architect, the builder and the Nxstage delivery all by him self, I feel nearly guilty.

[kickingandscreaming]

OMG, Cass,  you hang in there.   I'd write more except that I'm recovering from a little hospital adventture myslef,  And it's true, a lot of hospitals don't have D.

[MooseMom]

Hello hello sweet friends I'm home! I had 'no Tinzaparin' D this morning in hosp. Straight to gastroscopy which was awful as always, and ulcers and scars bleeding, and a lot of hernias also in the (forgot name) small intestines and esophagus, and stomach. So it's okay. Painfull but it'll heal with double dose Omeprazole.

Wait a minute.  What have I missed?  Do you have some sort of chronic GI tract inflammation/disease that requires you to have frequent gastroscopies?  I'm really sorry if you've discussed this in earlier posts and I've missed it.

Thank you for the lesson on Omeprazole.  It was really interesting.  For how long have you been using it?  What constitutes "long term use"?  Sorry...so many questions, as usual.

[iolaire]

Also my near litre a day of coffee will be reduced to just one delicious cup.

Better break out the expresso machine (or find a used one) and turn that into four delicious thimble full shots... Good luck cassandra .

[Charlie B53]

Wife sometimes has problems keeping food down, and/or in.  Too often just 20 minutes after eating she would be in the bathroom.  Amazing how quickly food can pass completely through the digestive system.  That's a long ways if you stretched out the intestines it's near 40 feet!

We LOVE pepper, on most everything.  One day I had the bright idea to NOT use any pepper.  She didn't have any problem.  So we did it again the next day.  NO Problem.   Bingo!  Found one of her
'triggers'  Now I won't even add any pepper to anything we cook and she won't touch the pepper mill.  Now we have to find the other 'triggers'.  It's much like an allergy.  They can be difficult to figure out.

I really miss my expresso machine.  It was an old Braun side-by-side with a drip coffee pot.  The pot side melted down and caught fire.  I used the sink hose after I unplugged it.  Qwap.  I have TWO Bean grinders yet.  I figure I'll run into the right machine when the time is right.

When I still had teeth I used to buy those chocolate covered expresso beans.  I should find the button to make these letters much bigger so I can emphasis 'GOOD'

[MooseMom]

How are you doing today, cass?  Is the UK having a nice spring?

[cassandra]

Hello hello sweet friends I'm home! I had 'no Tinzaparin' D this morning in hosp. Straight to gastroscopy which was awful as always, and ulcers and scars bleeding, and a lot of hernias also in the (forgot name) small intestines and esophagus, and stomach. So it's okay. Painfull but it'll heal with double dose Omeprazole.

Wait a minute.  What have I missed?  Do you have some sort of chronic GI tract inflammation/disease that requires you to have frequent gastroscopies?  I'm really sorry if you've discussed this in earlier posts and I've missed it.

Hi MM don't worry you haven't missed anything I don't think. Yes when I was a qualified college kid, but completely an uneducated patient at 18, I was admitted

in a (34 years ago) hosp with huge protein loss. But I'd just run 3' place on the 400meters National Championship 

Just started PGCE (teacher training). The educated people of that place found 'white masses or some kind of thing' on Xrays, did loads of tests and within a week I was on chemo therapy, and a high (200 gr a day!) protein diet. The little bit of oedema I had turned in an awful lot of oedema so by the time they decided to do a biopsy which went wrong quite a few times (without result) They decided they give me 120 mg Prednison, Indocit and all the other things I forgot, cos it must be some kind of immune disease. In the Netherlands at that time there is a difference when you are in or out of full time education concerning your health insurance (I did only find this out after I received dad's kidney of course) The learned people never gave me diuretics cos they could damage my kidneys. After 3 Months I couldn't walk anymore as one of the bodged biopsies had caused bleadings in my back etc, chronic tummy ache, and they added Ranitidine. I could go home cos nothing they could do." Two year or something left" so my mum was told.
Two days home, and I was brought into a bigger hosp by ambu with 2 legs with thrombosis. In that hospital the learned people put me on a heparin pump but forgot to check a few things (I'm sure they only did their best) and I ended up with a brain hemorrhage and a stomach bleed.
That's when I got the hydro cephalic (as the ventricular drains in my head were blocked) and the ventricular drain placed in my head.
And my first ever gastroscopy. I was in a coma for not too long (5 or 10 days) Hell for family but I only vaguely remember the time after that.

Before receiving dad's kidney they did another gastroscopy to check if all was still dandy in there. All other ones the learned ones wanted me to do were politely declined by me.
By that time I had seen too many people being wheeled into rooms for invasive tests to proof the obvious. And although the internet wasn't about (for me) at the time ('85) I had started my 'research program' cos I had decided I wanted to live, and it might not be a good idea to just leave it to the learned people alone.

So I was on Ranitidine for most of my transplant years in the Netherlands. In the UK that was changed into Omeprazole. I stopped that every time I was long enough 'healthy' to replace it with a jug of warm milk at night. Stopped the milk when I found out the 5 or 7% of allowable meat content of milk is puss from mastitis in cows.
Longterm use is longer than a year according to patient leaflet.

And thanx for asking me MM. It took me more than 34 years to be able to write this beginning piece of my life change 'on paper' without becoming upset or emotional (no no no Diazepam either      )

Love, Cas

[cassandra]

Also my near litre a day of coffee will be reduced to just one delicious cup.

Better break out the expresso machine (or find a used one) and turn that into four delicious thimble full shots... Good luck cassandra .

Yup Iolaire, the 5 or so double espressos are to become 1 espresso a day.

Love, Cas

[cassandra]

Yup Moosemum today really is spring. It's lovely. Was great seeing MIL sitting in the garden.
Thanx for asking. I hope you had a spring day too?



   


Love, Cas