Out of the darkness

[Ken Shelmerdine]

A great big hello to everyone on IHD. Sorry for my long absence but I've been a little bit down for a few months. Apart from dialysis I have the prostate cancer issue which has now metastasized into my bones. I've finally pulled myself out of the doldrums by realising hey I don't and never have had any pain or discomfort from the cancer,I only found out that it had spread when a recent psa blood test showed that the psa had risen to 21.

 I started hormone therapy and it came down to zero. But then soon after it had raised to 30 so I was down in the dumps again. But now with an extra hormone tablet it has come down to 10 and hopefully the next psa will show heading down to zero. I got to thinking that the to health problems I have are like silent diseases.

Even kidney failure has been a silent problem in the sense my PKD was only discovered from a blood test for an insurance policy 22 years ago. I started dialysis about 5 years ago (2 years CAPD and 3 years to date on haemo) when my creatinine reached 500. To this day from when I was first diagnosed to now I have never felt ill, no pain in kidney's, no kidney infections and no fluid retention.
All my sessions are zero UF (I still pass 2.3 litres over 24 hours.) in fact I have to drink and drink lots of fluid on the morning of dialysis so that my fistula vein '' stands up'' enough to get optimum needle access. In fact the only time I feel lousy is after dialysis.

Of course I do realise that I do need D mainly to shift urea and control potassium. But the continuity of it all 3 days a week really started to get me down to a point I knew I couldn't stand it anymore. The outcome is that I now dialyse only twice a week Monday and Friday missing out Wednesdays. I've been doing this for about six weeks now and I has given me a new lease of life and above all I have a renal blood profile taken every other week on fridays and there is very little difference in potassium and urea pre-dialysis so in spite of missing a session my lab results are still good.

It was and still is I guess a calculated risk I'm taking which may or may not shorten my life but it is a risk I'm prepared to take for the sake of quality of life.

[Poppylicious]

 

Hi Ken, lovely to 'see' you.  Sorry the past few months have been so sucky, but I'm pleased that you've popped in to tell us how you are.  Hopefully this new lease of life will continue (was it difficult to get them to agree to just doing M and F?) 

*huggles*

[Ken Shelmerdine]

Hi Ken, lovely to 'see' you.  Sorry the past few months have been so sucky, but I'm pleased that you've popped in to tell us how you are.  Hopefully this new lease of life will continue (was it difficult to get them to agree to just doing M and F?) 

*huggles*

HI popylicious
Thanks for your post. To answer your question I think the trick is not to ask them but to TELL them. I said that I had come to an informed decision based on my own risk assessment and then explained that assessment.

I got numerous lectures from doctors and staff that I was taking a chance that could be fatal to which I politely replied that my decision was final but if my bloods were to rise to dangerous levels (which they haven't )or I started feeling unwell then I would return to 3 days. Up to now everything is going well

[kristina]

Hello, Ken,

I am sorry what you went through over the past few months
and I am very pleased that dialysis twice a week “does the job” for you.

I like the fact that you informed the medics about your decision
and it came out right ! It sounds as if you have studied everything precisely
before you came to this decision. I do hope the cancer stops spreading or can be halted.

I send you my best wishes and good luck

from Kristina.

[boswife]

It is good to see ya Ken and im glad that you found a way to get some relief and held your own with that dedission.  I feel we have so much we have to 'comply' with that if we can get away with somethings w/o harm and know when to change that up, it's ours to decide.  We too went through something similar and it was very much depressing hubby.  We changed things up a bit, and life is so much better w/ great results thus far. Sometimes ya just gotta do what ya gotta do.  Got some prayers goen for you.  hope the 'pills' take care of that other matter for you.  Was so sorry to hear that part of your 'deal' 

[okarol]

Hi Ken,
I am happy to see you post, and that you're able to take control of your treatments. It's interesting, the silent diseases. In another time in history you'd not have had the diagnosis and intervention, since you don't have symptoms. Sometimes I wonder where we draw the line when it comes to quality of life. Thanks for sharing what's going on and please know you've been missed. I haven't been able to use this  without thinking of you!
Take care dear friend, and please keep in touch. 

[MooseMom]

Oh terrific!  You're back!!  I was thinking about you just the other day and was wondering when you'd resurface.  Good for you for TELLING them what you think is best for you!  Like you've said, it's about quality of life, and there are pros and cons to every decision you make.  The important thing is that you are well informed and can make good decisions based on as much information as you can find.

Thanks for coming back!

[galvo]

G'day, Ken. Very interesting, mate! I wish you well and look forward to receiving regular reports from you, please. The quality of life issue is very real, isn't it? This year I reach my three score and ten; I've had 4 heart attacks, I've got this stinking kidney disease and other relatively minor health complaints. My bloods are pretty good as is my compliance to the dietary and fluid restriction regimes and I feel well. I sometimes wonder if existing under restrictions in order to maybe extend my life by days, weeks, months (who knows) is worth it.

[Jean]

Ken, that is just amazing. they are always saying more dialysis and you cut back and still "maintain". Good for you and please keep us posted.

[Sluff]

Sorry you have been in the black hole for awhile, seems like that time of year for a lot of folks. Cancer sucks as well as ckd, sad you have to deal with both. Glad you are back, hope it helps because we are growing quickly and constantly, so it never gets dull around here so stay in touch.

[lmunchkin]

We all missed you, Ken.  So sorry for the cancer on top of CKD. Your story reminded me of my father!  He had that kind of cancer too.  Went into remission for a couple years and reappeared in his spine.  He refused treatment, went with Hospice Care! 

Of course, we hated losing him, but understood completely his decision.  Know he is in a better place!

So glad to have you back & thinking of you in prayers.
lmunchkin
 

[Ken Shelmerdine]

Thanks so much for your posts they've cheered me up no end. It's good to know there will always be support and kind thoughts and words from my friends on IHD.

[looneytunes]

Aw Ken...sorry to hear about the cancer and I will be praying it stays low key for a long time to come.      But, I also am so glad to see you back here.  You've been missed.