Wednesday, 25 February 2015

Squeamish?

I realised after a comment from Vivienne yesterday that I hadn't really explained what a fistula is. Rather than let you all wander off to google it and scare yourselves to death with images of all kinds of fistula I will explain a little better. I really DO NOT recommend googling even for dialysis fistula, I did and duly upset myself with what I found. I wish they could just put in another Hickman line. Oh well, back to the intended procedure.

The vascular surgeon operates under a local anesthetic. He  makes a series of small holes in an artery in the arm and cuts a small hole into a vein. The arterial blood is then pumped into the vein by the heart, enlarging the vein so that after 3 months it is large enough to use for the needle and pressure of the dialysis machine. 

The dialysis machine that we hope Mike will use if he needs to is a newish invention called "NxStage System One" . If you have ever seen the type of dialysis machines used in hospital you will see how much more compact it is and unlike the hospital machines it doesn't have to be plumbed in (washing machines in more ways than one!)

I think I am having a bad day, reading the long list of prospective DO NOTs from the amount of fluid allowed to the low phosphorous, low potassium, low salt, the lists are endless and you can bet all Mike's favourites are banned and it will be me having to be the big bad wife if the time comes. 

I need cake.

Tuesday, 24 February 2015

Branch line.

Today Mike had an appointment with a vascular surgeon to discuss having a fistula ready in case / for when he needs to start dialysis. Of course, as is usually the case with Mike, things aren't quite as simple as they might be. After a good look at Mike's veins and arteries in his forearm it turns out that the vein they usually use for the fistula has a branch, making it unsuitable and so they will need to travel up the arm to just past the elbow. No more using the left arm vampires!  I have to say that the surgeon is an extremely pleasant chap.

I think we are slowly getting used to the idea of dialysis, it is inevitably a bit scary and there is of course the worry that it will take over Mike's life, but we have been told that with the new home dialysis machines, the freedom to do it when you like makes life much nicer than regular hospital visits. The machine comes in a "small" box that is portable, which means you can take it "on the road" with you. 

Life is generally very peaceful at the moment, well it is when we haven't got the hospital and its doctors stressing us out! Long may it continue.

Friday, 13 February 2015

I've got the bug.

Well the blogging bug. After months, nay years of not saying much I find myself wanting to blog daily. 

Yesterday Mike had an appointment with his renal consultant. Nothing much to report, we're going to take matters more into our own hands, I will report back in a month. 

Today I actually want to tell you all about a lady called Vivienne who is currently going through one hell of a time looking after her husband Jimmy who is having a terrible time with his SCT. I thought Mike had had it bad (he was worse than many), but his SCT wasn't a patch on Jimmy's. 

I remember how frustrated (and upset) I got when Mike would call in the morning asking for a particular food and drink only for him to turn his nose up three hours later after I had walked a mile and a half, caught a bus, two trains and then walked from the station to bring to him. I think the tiredness probably didn't help the situation in my case. All I can say Vivienne is that it does get better, but it took months and months for Mike to get his taste buds back and he still finds certain smells abhorrent. 

If you have the time, pop over to their blog, have a read and give Vivienne and Jimmy a bit of support. 

On a purely selfish note, our page views are almost at 100,000!!!!! Please see counter in the sidebar. I only wish I could find out who our 100,000th viewer is going to be / was.

Tuesday, 10 February 2015

The Lobster Quadrille

“Will you walk a little faster?” said a whiting to a snail.
“There's a porpoise close behind us, and he's treading on my tail.
See how eagerly the lobsters and the turtles all advance!
They are waiting on the shingle – will you come and join the dance?
Will you, won't you, will you, won't you, will you join the dance?
Will you, won't you, will you, won't you, won't you join the dance?"

“You can really have no notion how delightful it will be
When they take us up and throw us, with the lobsters, out to sea!”
But the snail replied “Too far, too far!” and gave a look askance –
Said he thanked the whiting kindly, but he would not join the dance.
Would not, could not, would not, could not, would not join the dance.
Would not, could not, would not, could not, could not join the dance.

“What matters it how far we go?” his scaly friend replied.
“There is another shore, you know, upon the other side.
The further off from England the nearer is to France –
Then turn not pale, beloved snail, but come and join the dance.
Will you, won't you, will you, won't you, will you join the dance?
Will you, won't you, will you, won't you, won't you join the dance?”

The nonsense of Lewis Carroll seems fitting in this topsy turvy world in which we live. Are you sitting comfortably? Then I'll begin. 

Last Monday Mike was called by the renal nurse at our local hospital, she had been asked to do so by his renal consultant. So on Tuesday off we went to see her. Mike went I think with the idea that anything she had to say was for far off in the future, the reality was slightly different. In her opinion it seemed that dialysis was far more imminent than either of us had suspected, it had certainly not been implied by the consultant. Mike was obviously shocked as he was talked through the options. After two hours we came home and we discussed what we had been told. The jury is still out on what Mike will decide. 

The up side of the meeting though was that she explained that the toxins building up can cause sickness, shortness of breath, lethargy...... does any of this sound familiar. I'm rather annoyed that the renal consultant has been choosing to ignore my remarks for the last nine months, preferring to hear Mike's usual "I'm fine" while I interject "he's been very lethargic and short of breath" the sickness being only a recent symptom. (Moan over.) Mike is hoping that given a bit of time his kidneys might rally. 

The jury is also out on what is happening myeloma wise. There is a definite increase in the light chain ratio, which isn't good news, although the paraproteins are stable and the BMB showed around 10% myeloma cells. Dr. S.B. wants to see what is happening in a month, as he says, nothing with Mike follows the normal path. 

Mike's platelets and neutrophils have improved since December, which is a good thing, his HB however is still at a level that Mike finds it hard to cope at so this morning, against hospital policy, Mike is having a small top up. Dr. S.B. wants to see if it makes him feel any better. 

There seems to be more questions than answers at the moment.

Will he won't he, will he won't he, will he join the dance?

Monday, 9 February 2015

What a difference a day makes.

It is amazing what a difference 24 hours can make. Since blogging last Monday we have had our ups and our downs which we will share with you all soon. 

Generally Mike is so much better, not perfect, but a lot better. Like the above comment we will share our thoughts on the subject with you soon.

This morning I woke to find that my Tête á Tête dwarf daffodils have started to bloom. 


Excuse dirty pot....oops!

A tiny ray of sunshine to brighten a grey winter's day. Let's hope our later trip to see Dr. S.B. doesn't darken our mood. 

Monday, 2 February 2015

Groundhog Day.


How very appropriate that today is Groundhog Day. Like in the film of the same name, I seem to be trapped reliving the same day over and over again. Mike has not improved at all since my post on Friday. He says the antibiotics he is taking for a chest infection are making no difference whatsoever. 

Mike stays in bed until 10 a.m. then sits in front of the TV until bedtime, dozing off occasionally, only moving to go for a "comfort break." The effort of simply climbing the stairs has him struggling for breath. He is still struggling to eat. 

We have just called his CNS to see if she can offer any advice. 

Now, if only I could remember how Bill Murphy escaped.  


Addendum: 4:15 p.m. and we have just collected a different antibiotic from our dear CNS. Things can only get better. :)


Friday, 30 January 2015

Quick update.

I am happy, oh so bloomin happy to report that Mike is the tiniest bit better. Still nauseous, but not acting like a bad tempered hedgehog (he tends to curl up in a ball when poorly.)

Life is so much easier when I don't spend the day walking on eggshells.