BS: Dialysis, a step into the unknown.

Subject: BS: Dialysis, a step into the unknown.
From: Eric the Viking
Date: 26 Oct 15 - 09:39 PM

Hi anyone. I am about to tart dialysis. I have polycystic kidney disease, my stomach has reached the proportions of a doubly pregnant elephant, My Gfr is about 6% =, creatinine in the high 700's and life is becoming increasingly difficult, unable to breathe at night, can only go to sleep sitting up and so fatigued that I can fall asleep several times a day when I am doing nothing else. This isn't a sympathy cry, if anyone need sympathy it's Mrs Viking who has seen me collapse several times with internal cyst bleeding and watched me deteriorate whilst being steadfastly loving and supportive.

Does anyone here have advice, knowledge, information that may be of some use? Is there a glimmer of hope that improvement will be the outcome?

I know that fairly soon after starting I am likely to have one or both kidneys removed. Transplant...... well, that's another matter and probably (if) a long way down the line.

Speak words of wisdom to me as there is always someone here that knows an answer or tw.

Thankyou.

Subject: RE: BS: Dialysis, a step into the unknown.
From: gnu
Date: 26 Oct 15 - 09:45 PM

I know nothing. All I can offer is for you to join the Rainbow thread. It ain't a sympathy thread... it's a support thread for when you need it. thread.cfm?threadid=142631&messages=4770&page=1&desc=yes#3746006

Subject: RE: BS: Dialysis, a step into the unknown.
From: Rapparee
Date: 26 Oct 15 - 10:02 PM

That's a hard row to hoe. But take it one step at a time. See how the dialysis goes; it could solve the problem (yes, I know the odds are against it). Then one kidney removed might do it. And so on.

I assume you're seeing a nephrologist; if you're not you should be.

And keep thanking and thinking of Mrs. Viking!

Subject: RE: BS: Dialysis, a step into the unknown.
From: Janie
Date: 26 Oct 15 - 10:50 PM

Completely ignorant regarding your condition in particular and dialysis in general so not much instrumental help. My fervent hope is that among this large membership there will be those who still come and read and have instrumental thoughts to offer.

My post will refresh this thread, and hoping some one with knowledge or experience may respond. In the meantime, at least know you and Mrs. Viking are held in the thoughts, meditations, prayers, positive regard of others. Might not help, but surely can not hurt.

Subject: RE: BS: Dialysis, a step into the unknown.
From: Ebbie
Date: 27 Oct 15 - 03:12 AM

One's reaction to it may depend a great deal on how one approaches it.

My son in law went on dialysis at age 27. He found it extremely stressful.

On the other hand, I know a man now in his 50s who undergoes dialysis three times a week and has for years. He is a laid back kind of guy and he enjoys his life.

Subject: RE: BS: Dialysis, a step into the unknown.
From: Dave the Gnome
Date: 27 Oct 15 - 03:50 AM

My step dad suffered from an auto-immune disease which shut his organs down, starting with the kidneys. Sadly it took his life eventually but for a year, when only his kidneys were affected, he was very positive about his dialysis. He treated it as a time of reading and relaxing and the only time of the week he could enjoy a couple of beers! Hope it becomes as positive for you, Eric, and good luck whatever happens.

Cheers

Dave

Subject: RE: BS: Dialysis, a step into the unknown.
From: Kampervan
Date: 27 Oct 15 - 03:55 AM

There was a report the other day saying that trials on a home-based dialysis machine were being carried out.

Not a solution but at least there's the prospect of not having to go to hospital two ro three times a week.

Good luck with the treatment and I hope that you get an early chance for a transplant, if that's what it comes to.

Subject: RE: BS: Dialysis, a step into the unknown.
From: GUEST
Date: 27 Oct 15 - 04:58 AM

What in all that is diabolical Got YOU into the situation?

Write - that it might prove a warning to the rest of use.

Was is too much booze, cola, weight, KFC, sugar, banjo playing?

Or not enough exercise, medical care, green leafy vegitables, singing?

Is there still time for use to repent?

Subject: RE: BS: Dialysis, a step into the unknown.
From: wysiwyg
Date: 27 Oct 15 - 05:05 AM

Cheers Eric, good man to ask for help when it is needed!

Several parishioners and colleagues know dialysis well as a regular part of their lives; in dialysis they are pretty much the sAME people they aRe everywhere-- curmudgeonly or sunny. You will find that this new, structured time in your life offers at least as many blessings as inconveniences; like patients on chemo, you are likely to find staff as well as fellow patients with whom to exchange support. At first you'll be the newbie in need of it yourself, and then you'll find folks in need of yours, be it quiet or vocal. Outside of that group you're also likely to find folks who feel a need to vent about their own experiences with a chronic medical condition of their own or their family's... remember that you are notNOTnot obligated to spend your strength absorbing these and that changing to subject is a kind option, too.

You may find that music, for you, belongs at dialysis. Audio books via CD or mp3 player can be wonderful. Some folks get very cold, some hot; some want light and some want darkness, during dialysis-- Mrs. Viking will be well advised to be prepared. After first rounds of it, you'll know what needs to be modified and can carry a little kit bag of things to make it more comfortable. (A hat with a brim can be a huge help!)

Now as to Mrs. Viking. You are not a burden. You are her treasure. Be sure though to encourage her to share worries with friends and to take more time for herself. And if she can, naps are in order.

Finally, lots of folks these days discover a TON of medical expertise online via forum-type communities devoted to particular conditions. It's likely that your medical team can suggest a starting place for you and/or Mrs. V to surf into knowledgeable resources, where others who've trod this path can shine a light on yours while it's so unfamiliar. Many find that this makes them a much more effective member of their own health-care team. Honor your power to make choices at all levels, and trust your instincts when things don't make sense. Be a pesky patient as needed, and remember-- you're a Viking! ;-)

Take what you need and discard any advice here that doesn't fit, too, here or anywhere.

~Susan

Subject: RE: BS: Dialysis, a step into the unknown.
From: Mr Red
Date: 27 Oct 15 - 05:27 AM

from the sound of it peritoneal dialysis is unlikely. But it you have that option it can have a sell by date. My cousin had to revert to hospital dialysis after MRSA. He asked my advice before going for peritoneal dialysis, and it did lift his life for a while. He even managed an Australian holiday, after buying the fluid and having it stored in his destination.

Subject: RE: BS: Dialysis, a step into the unknown.
From: Mr Red
Date: 27 Oct 15 - 05:29 AM

Oh, he did report nausea during/after hospital dialysis, and saw plenty of it from others. It is a fact of life in these circumstances. Compared to the alternative?

Subject: RE: BS: Dialysis, a step into the unknown.
From: Noreen
Date: 27 Oct 15 - 06:31 AM

Sorry to hear this, my friend. I have no direct knowledge to give, but I'm sending positive thoughts up North for you.
Keep posting here for support and just to let off steam 😊

Hope you're still playing as much as you can.
Love Nxx

Subject: RE: BS: Dialysis, a step into the unknown.
From: Eric the Viking
Date: 27 Oct 15 - 05:59 PM

Thankyou all. It's nice to hear from old friends and from those I have never met.

Guest.....It is Adult onset polycystic kidney disease. Genetic, born with it without any knowledge of it until twenty two years ago. I wish I could blame a hedonistic lifestyle, but I can't. I can't blame the booze or drugs as neither have ever really rocked my boat, though the odd pint or seven when I was younger and playing rugby didn't come amiss. Not even the roaring fun of mudcat meets' saw me take great alcohol quantities as I often drove that layabout Skipjack around when in his cups.

I have got a three week, if I am lucky, window, to go and visit number one Viking son and then number one Viking daughter the Freja. After that it is the mechanical life for me.

At the consultant visit today, where I obtained such window, with conditions attached, I was told that I was now carrying around kidneys the size of two rugby balls. I would have willingly lent one to Scotland the other week in the last 30 seconds of the game.(It would save me looking like a Weeble)

Hi Noreen, Yes I am still playing. I sing and play in a pub folk band on a Wednesday and local folk meet alternate Thursdays. I have been told my dialysis will be Monday, Wednesday and Friday, so that scuppers that.

Susan, so many years since we last met, I knew there would be wise words coming my way. I make sure that Mrs Viking gets her change of scenery. She has taken up hill and Munro walking. We had planned a retirement of the outdoor life, so she goes instead every week with a walking group, walks with a neighbour other times.

So I guess that puts me up to date.

Thankyou all. Time will pass and I hope to last out the three weeks.

Subject: RE: BS: Dialysis, a step into the unknown.
From: fat B****rd
Date: 27 Oct 15 - 06:11 PM

I can only wish you well, ETV.
Charlie

Subject: RE: BS: Dialysis, a step into the unknown.
From: wysiwyg
Date: 27 Oct 15 - 06:43 PM

I have been told my dialysis will be Monday, Wednesday and Friday, so that scuppers that.

;-) Did you question that schedule, and can they accommodate you?

~Susan

Subject: RE: BS: Dialysis, a step into the unknown.
From: Steve Shaw
Date: 27 Oct 15 - 07:18 PM

I have three friends currently or formerly on dialysis. One's had a successful transplant and the others are waiting. All three are cheerful and positive. They've accommodated their lot and they're moving on and enjoying life. I've got a bloody bad back and I've had surgery, but what I've got is nothing. They're an inspiration. Just reporting!

Subject: RE: BS: Dialysis, a step into the unknown.
From: McGrath of Harlow
Date: 27 Oct 15 - 08:39 PM

You've still got the folk every other Thursday!

All best thoughts to you and Mrs Viking. Thank God for the NHS.

Subject: RE: BS: Dialysis, a step into the unknown.
From: ChanteyLass
Date: 27 Oct 15 - 09:17 PM

I had a friend who did home dialysis almost 10 years ago. Supplies were shipped to her door regularly. Every night she hooked herself up, and every morning she detached herself. She chose that instead of hospital dialysis. I don't know if you are a candidate for that, and I don't know if I would have chosen it. When she started dialysis, her name was put on the kidney transplant list. Two months later she got the call that there was a kidney for her. It was a "perfect match," so her body was less likely to reject than any of the people higher on the list. A rejected kidney saves no one. The transplant was successful and she lived another 8 years. So keep your hopes up!

Subject: RE: BS: Dialysis, a step into the unknown.
From: ragdall
Date: 28 Oct 15 - 01:09 AM

Hi Eric,
Best wishes that the dialysis will work well for you. Even though travel and activities on dialysis days may be limited, I hope that it will improve your quality of life and your health in general.

I'd appreciate if you would post updates for those here who may also be considering dialysis. My husband is currently in that position. His gfr has been dropping as creatinine and anemia rises. He is on a waiting list to have the fistula created in his arm to prepare for dialysis. He is unsure about continuing. His doctor has said he will support him whichever decision he makes.

rags

Subject: RE: BS: Dialysis, a step into the unknown.
From: EBarnacle
Date: 28 Oct 15 - 12:06 PM

Whatever else, DON'T GIVE UP. I was senior biomed engineer at Downstate Medical Center in Brooklyn, NY for 18 years.

Walk in with a positive attitude. It is often uncomfortable. If possible, choose a center which does not reuse dialyzers. Insist on the longest treatment you can get each time. The longer the treatment, the slower the changes you will have to go through and the less discomfort. You are the for your needs, not to make a few extra dollars for the clinic.

If you can, get a clinic which has a Home Hemodialysis program, using the same machines they use in the clinic. If you go for this option, your wife or a very reliable friend has to go through training to serve as your home patient care tech.

CAPD works and allows you more freedom but you have to be finicky about cleanliness. It also allows you to live as much of your old life as possible.

Live long and prosper! People who are careful about the program are living decades longer than when I joined the field.

Subject: RE: BS: Dialysis, a step into the unknown.
From: Donuel
Date: 28 Oct 15 - 05:39 PM

True enough its iky but every week of dialysis buys you time for rest, healing and something really good to happen, as it does the majority of the time with kidney problems.

Subject: RE: BS: Dialysis, a step into the unknown.
From: Eric the Viking
Date: 31 Oct 15 - 03:10 PM

Thankyou all for you words and thoughts. Ragdoll...A fistula is an easy thing to have. Not too painful, and though the surgeon needs to be every careful as the nerve to the thumb can get a bit of damage. The fistula heals quickly and as long as you remember it's there and don't abuse it, it is fine. Here are my latest results so you have a comparison: GFr 5% Createnine 889. Potassium 5.1. Phosphorous 1.7. I got down to 7 for my anemia, but now I have weekly self injected EPo and I am slowly improving. I have a suitcase of medicine including vitamin B and Vitamin D, Calcium tablets and a pile of others. You can always pm me

I haven't finished with life....I still fancy a longer go at it.

Subject: RE: BS: Dialysis, a step into the unknown.
From: GUEST,.gargoyle
Date: 31 Oct 15 - 08:09 PM

When you decide to "pass on this mortal coil,"...

A ICU doctor...consulting on an end-of-life situation, said, "Kidney failure is not a harsh way to go."

Sincerely,
Gargoyle

Be thankful you are not in Canada or the UK.

Subject: RE: BS: Dialysis, a step into the unknown.
From: EBarnacle
Date: 31 Oct 15 - 11:32 PM

Go for it. Follow the protocol, especially the diet.

Subject: RE: BS: Dialysis, a step into the unknown.
From: Noreen
Date: 01 Nov 15 - 05:45 AM

Gargoyle, your ignorance is showing there- Eric is indeed in the UK and is receiving excellent care from our wonderful NHS.

EBarnacle's warning about "making a few extra dollars for the clinic" also does not apply.

However that is not the point of this thread- which is to give our old mate Eric, mudcatter of long standing, habitué of many international mudcat gatherings and all-round good guy, some support at a difficult time.

Love to all the family too, Eric. Nx

Subject: RE: BS: Dialysis, a step into the unknown.
From: bubblyrat
Date: 01 Nov 15 - 06:48 AM

I had to have regular sessions whilst being treated for a severe leg (cellulitis) infection and kidney failure a year or so ago. I had "line" inserted in my neck , in order to connect me to the dialysis machine next to my bed; it was initially rather frightening,but I soon got used to the noises and flashing lights ,and was told that , in the event of a power cut, my blood could be returned to me with the aid of a built-in hand pump ! It is possible that Reading Hospital now has more modern apparatus.The big downside , of course,is that the process will remove substances like pain-killers,such that you can ,sometimes, end a session by feeling nauseous ; not pleasant, but better than ....well, you know !Anyway, I survived a month of it (obviously ) and I wish you well.

Subject: RE: BS: Dialysis, a step into the unknown.
From: GUEST,.gargoyle
Date: 01 Nov 15 - 07:55 AM

Noreen - the thousands and thousands of reports indicate the the NHS crisis over the years. If it were a less serious situation I would suggest Eric become a "medical tourist" to France.
All we know about UK NHS is what we read in your publications.

www.blog.independent.org/2015/09/15/british-national-health-service-stops-paying-for-lifesaving-drugs/

www.independent.org/newsroom/article.asp?id=5257





www.npr.org/2015/01/11/376384632/overcrowded-hospitals-overwhelm-uks-national-health-service

The horror stories just keep coming in:



www.marketoracle.co.uk/Article41416.html

NHS Catastrophe, A National Health Service that Kills it's Patients



< www.independent.co.uk/life-style/health-and-families/health-news/nhs-qa-what-caused-the-current-crisis-and-what-are-the-solutions-9963643.html

Chilling stories in the commentary section



.Sincerely,
Gargoyle

Yanks are fiercly independent and most prefer to select their own insurance, own doctor and own course of treatment. The "nanny state" mentality is repugnant. I am sorry about your unfortunate situation.

Subject: RE: BS: Dialysis, a step into the unknown.
From: MikeL2
Date: 01 Nov 15 - 08:02 AM

Hi Eric

I am sorry to hear of your problems.

The man that owns our local newsagents shop had similar problems and after a great deal of different treatments he was put on dialysis.

At first he spent some weeks in hospital receiving treatment and then went for out-patient sessions twice a week.

He is very much improved and looks and feels far more healthy.

So there is hope and life at the end of the tunnel.

I hope that you find health and fitness soon.

Regards

Mike

Subject: RE: BS: Dialysis, a step into the unknown.
From: EBarnacle
Date: 01 Nov 15 - 09:36 AM

Noreen, here in the US many clinics reuse their dialyzers and or have their patients on a three hour protocol. This protocol allows them to have an additional shift of patients with the same staffing.
The excuse for dialyzer reuse is that it eliminates "first use" syndrome, which actually seems to be a non-issue. Both cases put more money into the pockets of the clinic operators.

Subject: RE: BS: Dialysis, a step into the unknown.
From: Dave the Gnome
Date: 01 Nov 15 - 01:15 PM

Don't believe everything you read in the press, Gargoyle. I can assure you that while the NHS may be not what it was it still saves the lives of countless people without them having to bankrupt themselves. My friends from the US who visit regularly are amazed at the difference between what they are told and what is true!

Subject: RE: BS: Dialysis, a step into the unknown.
From: Noreen
Date: 01 Nov 15 - 07:42 PM

Thanks, EBarnacle and DtG.

Gargoyle, can you not see that Fox News and the like have a vested interest in showing the NHS in a negative light?
And do you honestly believe that the US medical system serves the nation well?

Subject: RE: BS: Dialysis, a step into the unknown.
From: Eric the Viking
Date: 02 Nov 15 - 06:00 AM

So......................After another night of breathless, no sleep. (Were it passion and lust it would at least be worth writing about) I was forced to ring the hospital for advice. (Here is the UK, the help, like the treatment, is free at point of need)

My step into the unknown has come earlier than expected and dialysis starts tomorrow. How it goes and what happens I wait to find out.

I am saddened that what started out as a call for information has slightly turned into a discussion of perceived failure of the NHS. I state here, that in all the years leading up to this point, I have had nothing, but good monitoring and treatment from the NHS. It is a system without parallel in the world, full of dedicated, hard working underpaid, staff of all descriptions and has resulted in the increased longevity and general health of the UK population and those that come here for a "free go" at a cost borne by every taxpaying contributor. There are horror stories, of course but nobody tells the millions of successes. It doesn't make good press, and with respect, the USA system that is based on the ability to pay, leaving millions below the poverty line without treatment can hardly criticise.

Yanks are fiercly independent and most prefer to select their own insurance, own doctor and own course of treatment. The "nanny state" mentality is repugnant. I am sorry about your unfortunate situation.

Provided they have enough money to pay !!!!

So I wait to see how my first steps into a new way of life go.. Thanks everybody.

Subject: RE: BS: Dialysis, a step into the unknown.
From: maeve
Date: 02 Nov 15 - 06:58 AM

Eric- Accept the glimmering gold and leave the bits of coaldust. Go into this journey toward improved health with open heart and mind. I'm glad you have excellent, appropriate care.

Subject: RE: BS: Dialysis, a step into the unknown.
From: Dave the Gnome
Date: 02 Nov 15 - 07:22 AM

Good luck, Eric. People will always use any excuse to mount their hobby horses. Ignore them. Let us know how you go on.

Subject: RE: BS: Dialysis, a step into the unknown.
From: Noreen
Date: 02 Nov 15 - 07:33 AM

Sending positive and happy thoughts your way today, Eric.
You are in good hands.

Let us know how today goes, when you can.

Hugs xxx

Subject: RE: BS: Dialysis, a step into the unknown.
From: ChanteyLass
Date: 02 Nov 15 - 08:43 PM

It's almost 9 PM on the east coast of the US, so your first treatment should have ended hours ago. I hope it and the ones ahead go well.

Subject: RE: BS: Dialysis, a step into the unknown.
From: GUEST,orybum
Date: 02 Nov 15 - 09:45 PM

Eric the Viking, out here in the sticks were I live some folks probably haven't seen a doctor since they were born (maybe a little bit of a stretch, but not really) Good Luck

Subject: RE: BS: Dialysis, a step into the unknown.
From: gnu
Date: 03 Nov 15 - 02:40 PM

I hope your first step into the unknown went well today. All the best. Thoughts and prayers.

Subject: RE: BS: Dialysis, a step into the unknown.
From: GUEST
Date: 03 Nov 15 - 05:46 PM

Hi all. Apart from a sore vein where the needles went in, I can't complain. Really nice staff, kindness and good humoured, friendly and helpful. Not the greatest fun but no negative effects. I hope for a good night's sleep with more breathe ability . Odds to think that it will be repeated three times a week for as long..........

more to follow after next time.

Subject: RE: BS: Dialysis, a step into the unknown.
From: maeve
Date: 03 Nov 15 - 05:55 PM

Good, Eric. Rest now, and sweet sleep.

Subject: RE: BS: Dialysis, a step into the unknown.
From: ChanteyLass
Date: 03 Nov 15 - 08:12 PM

Thank you, Eric, for getting back to us. Catch some ZZZs, now.

Subject: RE: BS: Dialysis, a step into the unknown.
From: ragdall
Date: 05 Nov 15 - 07:39 PM

Eric,
I'm glad that your first treatment went well. I hope that you're already experiencing improved sleep.   

Please keep posting updates and continue on in much better health.

rags

Subject: RE: BS: Dialysis, a step into the unknown.
From: wysiwyg
Date: 06 Nov 15 - 11:53 AM

We're with you, Eric!

~S~

Subject: RE: BS: Dialysis, a step into the unknown.
From: Eric the Viking
Date: 09 Nov 15 - 05:30 PM

What an eventful week....The first session went relatively well other than my vein blew up like a golf ball. Thursday was a different matter. When the first needle went in, my vein collapsed and suddenly blew up, remove needle. Put needle back into a different bit if vein, second needle collapse vein, has to be removed and inserted in the wrong direction. Dialysis goes well until needle removal. Once the needle was out of my vein, up it blows to the size of a golf ball again. "Oh dear, shouldn't be like that" says nurse. So after a lot of painful pressure it finally stops getting big. My arm is so bruised that they could not dialyse me on Saturday. "Come back for Tuesday" was the statement. Still greatly bruised (Really !!) and sore, but back tomorrow morning for more needles.

I didn't think it was meant to be like that.

Any ideas?

At least, we made the best advantage of it and drove at high speed down to Yorkshire and managed to get to see number one sons' house and pay a visit, so every cloud has a sliver lining.

So I wait with trepidation for tomorrows events.

Subject: RE: BS: Dialysis, a step into the unknown.
From: maeve
Date: 09 Nov 15 - 06:53 PM

Eric, this article may be helpful: Correct and prevent bruising...

Blowouts: https://bigdandme.wordpress.com/2009/12/27/blow-outs-in-dilaysis-the-what-how-why-and-what-to-do/

Subject: RE: BS: Dialysis, a step into the unknown.
From: GUEST,Noreen still at work
Date: 10 Nov 15 - 04:20 PM

Hi Eric, so sorry to hear you're having a less-than-pleasant time with the treatment.
Maeve's link suggests things are likely to improve... here's hoping.

Positive thoughts winging your way.

Nxx

Subject: RE: BS: Dialysis, a step into the unknown.
From: GUEST,.farfelue
Date: 10 Nov 15 - 09:42 PM

Just curious...

My dear theatrical friend has watched her kindney function numbers drop over three years ... from 50 (liveable) to 21 (kidney transplant search begins).

What FIRST tipped you off to a serious problem?

Sincerely,
Gargoyle

< font color=lime.

Subject: RE: BS: Dialysis, a step into the unknown.
From: EBarnacle
Date: 10 Nov 15 - 10:22 PM

Not to throw cold water but sometimes a fistula will simply enlarge and stay that way. It certainly looks scary, though. I hope yours is this situation rather than a blowout.

Subject: RE: BS: Dialysis, a step into the unknown.
From: ChanteyLass
Date: 10 Nov 15 - 10:31 PM

Oh, Eric, that sounds unpleasant (understatement)! I hope things go much better on Tuesday. Please let us know.

Subject: RE: BS: Dialysis, a step into the unknown.
From: Dave the Gnome
Date: 11 Nov 15 - 08:17 AM

Good luck for the next lot, Eric. I'll keep my fingers crossed that it does get better.

Subject: RE: BS: Dialysis, a step into the unknown.
From: Eric the Viking
Date: 13 Nov 15 - 04:32 PM

Hi all. Tuesday and Thursday went fine except the last few minutes when I bent down to put on my shoe and had a huge blow out across the room, over the dialysis chair in a five foot arch. All was well as I grabbed it quickly and was seen to. It looked spectacular !!! (And made a right mess) We will see what tomorrow brings.

To answer Gargoyle...Just after number 1 daughter Freja was conceived, I was rear ended by a 60mph car. It gave me a whiplash, which got better but I was left with a miniscule ache in my side. So I went to the doctor, who arranged a scan. It is a genetic disease. "1% and looking for a transplant ? I am at 5%.

Subject: RE: BS: Dialysis, a step into the unknown.
From: ChanteyLass
Date: 13 Nov 15 - 09:08 PM

It sounds like the excitement (?) continues. I hope the rest of your treatments are non-events and a matching kidney is found soon.

Subject: RE: BS: Dialysis, a step into the unknown.
From: Janie
Date: 14 Nov 15 - 02:14 PM

Thinking of you.

Subject: RE: BS: Dialysis, a step into the unknown.
From: ragdall
Date: 20 Nov 15 - 05:21 AM

http://mudcat.org/thread.cfm?threadid=158428#3749608

Eric,
I'm sorry to hear that you've had these difficulties, but I very much appreciate you writing about them here as it's not things that we've been told about. If/when my husband goes on dialysis we'll be better prepared to try to act quickly in similar circumstances or to keep calm, knowing that things can and will improve.   

I hope that your future treatments will be much less eventful and very effective.

Hugs,
   rags

Subject: RE: BS: Dialysis, a step into the unknown.
From: Eric the Viking
Date: 20 Nov 15 - 05:52 PM

All well here. Being very positive and begining to get used to the early start (06;30) Hooked up by about 08;15 (Using size 10 knitting needles now.haha) Four and a half hours, aprox, sitting listening to the radio, watching TV or one handed using the ipad or iPhone. We have a good atmosphere as we are all in the same boat.

Rag doll, If there is anything I can tell you, that I may know the answer to, please ask. I lived with little information, other than that which I found out myself. If there is a shortfall in the NHS, it is that there is little consideration given to the effect of a debilitating condition on both partners. The lovely Mrs Viking has been steadfast, looking into a pit that opened up before her. She has seen me collapse in the road in agony, spend evening after evening falling asleep, loosing physical strength and muscle. Visited me in hospital several times and fought my corner when I couldn't. People ask her how I am, they never ask how she is. So how are you, how are you holding up? Good people are around you.

This is for the rest of my life, and we will live with it, adjust and work round it. Mrs Viking will go off and complete some of the dreams we had. She hasn't got it and must still be alive to flourish and live.

Thankyou all for your support. Tomorrow awaits. The size 10's are waiting.

Subject: RE: BS: Dialysis, a step into the unknown.
From: ChanteyLass
Date: 20 Nov 15 - 07:50 PM

Hugs for you and for Mrs. Viking.

Subject: RE: BS: Dialysis, a step into the unknown.
From: MikeL2
Date: 21 Nov 15 - 05:21 AM

Hi Eric

Pleased that things are settling down for you. I agree about your comment about wives and their support.

I have had recent problems with all the attendant worries about anything concerning the 2 Big C". This meant that my wife had to take over the running of the home amid having to take me to hospital and/or doctors at least 3 times a week. She also had to undertake doing dressings etc on the days I didn't have to attend hospital etc.

She is a complete trooper and coped magnificently with all that was thrown at her.

It was great to have people interested and concerned about me and my health but few ever thought to ask how Mrs Mike was coping.

Kind thoughts and best wishes

Regards

Mike

Subject: RE: BS: Dialysis, a step into the unknown.
From: ragdall
Date: 22 Nov 15 - 05:33 AM

Eric,
I'm glad that you are able to remain positive. Maybe there a possibility that a kidney transplant will be an option for you?   

Thank you for thinking of me, when you are going through so much. I'm finding that the worrying is making me very easily distracted, which causes too many mistakes. I'm having difficulty remembering very basic things and doing simple household tasks. My main focus is trying to find effective ways to extend my husband's time before needing dialysis.

If I think of any questions to ask you, I will. I'm still at the stage of trying to find the right questions to ask. We're going to attend a Canadian Kidney Foundation group meeting at the hospital in about 12 hours, if I can convince him to go. I'm hoping that will yield useful information, or maybe meeting some local contacts who have experience on this journey.

rags

Subject: RE: BS: Dialysis, a step into the unknown.
From: Eric the Viking
Date: 22 Nov 15 - 04:50 PM

Hi Rags.

I hope all went well at the meeting and your husband managed to go. Some advice (Well offered, not being nosey) Stop smoking, keep an eye of weight, avoid high potassium foods and be very careful of foods containing phosphorous. but I am sure you both know this. Depending on the type of kidney damage there will be other advice offered by the medical staff. I have a genetic condition, nothing can stop it. However there is now a medicine that can stop the cysts growing, which is fantastic news for the younger generation, too late for me. I don't know if it is available in Canada.

I go for a CT scan next Monday to find out which, or both of my kidneys will be removed.

More news to follow.

Thanks everybody, it is nice to be able to put a few words out of my head rather than them floating around the empty space.

Subject: RE: BS: Dialysis, a step into the unknown.
From: gnu
Date: 22 Nov 15 - 05:31 PM

Been following... lurking. Few words to offer.

Good luck and bless. You're one of the good guys and I appreciate it.

Subject: RE: BS: Dialysis, a step into the unknown.
From: ragdall
Date: 24 Nov 15 - 07:35 PM

Hi Eric,
You're very brave. It's good that the dialysis is working out for you and can act as a functioning kidney for you for as long as you need it.

Good luck with the CT scan. I hope that the results will be better than you can hope for. Please let us know what decisions have been made and the timeline?

We didn't go to the meeting this past Sunday, but we were at a peer group meeting the previous Sunday where I found it very encouraging to meet people who were bright, alert, and in good humour, in spite of (or because of?) being reliant on having dialysis several days a week.

Several were happy to show and tell about their physical modifications that enable connection to the machinery. Several in the room have dialysis at a clinic where, because the usual dialysis needles are not being used, they can manage the entire procedure themselves and seemed to thrive on that feeling of having more control in their lives.

We talked with my husband's primary care physician on Monday. The good news was that we've been making great strides in controlling the diabetes, cholesterol and blood pressure, however creatinine is climbing higher and higher, liver numbers are not good, his kidney function went from 17% to 15%. We keep hoping it won't go any lower, but...

The doctor advised that it's time to make a decision about proceeding to dialysis, or doing nothing and .... He said he will support my husband in either decision.

We can't believe this is really happening and are looking for rainbows, unicorns and a higher kidney function next month.
   rags

Subject: RE: BS: Dialysis, a step into the unknown.
From: EBarnacle
Date: 25 Nov 15 - 10:43 AM

Remember, opting out means exactly that. With dialysis, you have the potential to enjoy each other's company for a "normal" life span. That said, the choice is his.
Improvements in treatment come along on a regular basis. There are several implantable artificial kidneys being tested as we speak.

Subject: RE: BS: Dialysis, a step into the unknown.
From: Noreen
Date: 26 Nov 15 - 06:45 AM

Hugs, rainbows and sparkly unicorns for all, today- limited offer! 😃

(Positive thoughts on tap at all times.)

Subject: RE: BS: Dialysis, a step into the unknown.
From: Eric the Viking
Date: 11 Dec 15 - 06:56 AM

Hi all.
Somehow I didn't put in a write up a couple of weeks ago.I wrote it but somehow I didn't hit the right button.

six weeks down the line and settled into the routine of early mornings and being hooked up. It isn't too bad, boredom sets in so the TV, Radio ipad and general conversation help to pass the time. I have had several blowouts and some other adventures such as going to the loo, trousers and kecks down when my arm burst, trying to stem the flow with toilet roll whilst attempting to dignify myself before I call for help ! Having pulled the emergency chord, no one came so struggled half dressed back into the ward holding my jeans up and a wrap of toilet roll dripping blood on the floor in a long trail. Quite funny when you sit back and laugh about it. But and this is particularly for you Ragdoll. The results of dialysis are really amazing. My iron has gone up to normal, my creatinine goes up to a terrible 700+ but after dialysis it's down to 300. My Calccium is up, my potassium down to 3.7, my phosphorous down to 1.5. My crapms have all but disappeared. Life for the other days is so much improved. I have so much more energy. Please assure your husband that it is worth it.

Subject: RE: BS: Dialysis, a step into the unknown.
From: Dave the Gnome
Date: 11 Dec 15 - 06:59 AM

Thanks for the update, Eric, and glad things are improving. Long may they continue to do so!

Subject: RE: BS: Dialysis, a step into the unknown.
From: maeve
Date: 11 Dec 15 - 07:01 AM

Eric- Well done, you, Thanks for the encouraging update. I'll write a note to ragdall to stop by for your message here.

Maeve

Subject: RE: BS: Dialysis, a step into the unknown.
From: EBarnacle
Date: 11 Dec 15 - 01:03 PM

Why do you continue to get blowouts? Are they inserting the needles wrong? Why are they not using the single fistula needles [dual lumen] currently available. What does the doctor say?

Subject: RE: BS: Dialysis, a step into the unknown.
From: MikeL2
Date: 11 Dec 15 - 03:02 PM

Hi Eric
Compliments of the Season to you.

Regards

Mike
Well done. Despite set backs you are hanging in there. I am delighted for you and yours.

More of the same please.

Compliments of the Season.

Regards
Mike

Subject: RE: BS: Dialysis, a step into the unknown.
From: MikeL2
Date: 11 Dec 15 - 03:03 PM

Hi Sorry....!!! Must have pressed the wrong button.

Mike

Subject: RE: BS: Dialysis, a step into the unknown.
From: gnu
Date: 11 Dec 15 - 04:22 PM

I have been lurking all along.

"I have so much more energy." That made my day. I hope for your continued well being.

Subject: RE: BS: Dialysis, a step into the unknown.
From: GUEST,wysiwyg minus cookie
Date: 11 Dec 15 - 08:58 PM

Go Eric! How's the wife doing with these changes in routine?

~Susan

Subject: RE: BS: Dialysis, a step into the unknown.
From: GUEST,orybum
Date: 11 Dec 15 - 11:04 PM

Eric the Viking stay edgy

Subject: RE: BS: Dialysis, a step into the unknown.
From: Eric the Viking
Date: 12 Dec 15 - 05:36 PM

Hi Susan. She is doing really well. We take things head on and always together. We are working round the early mornings and Mrs Viking is taking advantage to be able to do things she wants to do. We have completely fitted a full new kitchen over the past six weeks, slow progress but just some tiling to do to complete. It will be done by Christmas. I have Christmas and Boxing day off !!

Seasons greetings to all and best wishes for the coming year.

Subject: RE: BS: Dialysis, a step into the unknown.
From: olddude
Date: 12 Dec 15 - 09:29 PM

In my prayers and thoughts, keep up the good work and keep good news coming

Subject: RE: BS: Dialysis, a step into the unknown.
From: ChanteyLass
Date: 12 Dec 15 - 10:30 PM

I'm glad the treatments are working even if they don't always go smoothly.

Subject: RE: BS: Dialysis, a step into the unknown.
From: Noreen
Date: 13 Dec 15 - 03:43 PM

I'm so glad the treatment is having the desired effect, Eric.

A very happy Christmas and a healthy New Year to you and all the family xxx

Subject: RE: BS: Dialysis, a step into the unknown.
From: GUEST,wysiwyg minus cookie
Date: 13 Dec 15 - 07:39 PM

Great, Eric!

~S~

Subject: RE: BS: Dialysis, a step into the unknown.
From: GUEST
Date: 14 Dec 15 - 10:41 PM

Eric,
I'm very happy and encouraged to read your positive update. I'll pass on the information to my husband. His lab tests will be next week. We're hoping his GFR % will have improved from last month.

You deserve a great deal of credit for your positive attitude and ability to find humour in what must have been both frightening and embarrassing event in the loo.

rags

Subject: RE: BS: Dialysis, a step into the unknown.
From: ragdall
Date: 27 Jan 16 - 08:31 PM

Has anyone heard from Eric? He hasn't posted on Mudcat for a month and a half.

I hope that he is doing very well.

rags

Subject: RE: BS: Dialysis, a step into the unknown.
From: ChanteyLass
Date: 27 Jan 16 - 09:31 PM

I hope so, too, rags. Thank you for reviving this thread. I hadn't realized how long this thread has been dormant.

Subject: RE: BS: Dialysis, a step into the unknown.
From: ragdall
Date: 29 Jan 16 - 08:21 AM

Is anyone, in touch with Eric?
rags

Subject: RE: BS: Dialysis, a step into the unknown.
From: maeve
Date: 29 Jan 16 - 08:44 AM

I've sent him a PM.

Subject: RE: BS: Dialysis, a step into the unknown.
From: Noreen
Date: 29 Jan 16 - 06:06 PM

Positive, healthy thoughts aimed in your direction, Eric. x

Subject: RE: BS: Dialysis, a step into the unknown.
From: gnu
Date: 29 Jan 16 - 06:30 PM

I hope the absence is for "positive" reasons.

Subject: RE: BS: Dialysis, a step into the unknown.
From: Eric the Viking
Date: 19 Feb 16 - 05:36 PM

Hello everyone. I am really sorry for the very long space between posts. Somehow my update around Christmas got lost (I don't understand how) and I also have just reset my cookie. Lastly I have been browsing using my ipad and I never allow cookies on that.

I have settled into the three times a week needles. Have got used to the regular failure of needle inserts, resulting in blow outs. Got used to the sudden drop in blood pressure and the effects of that !Generally though life is better on dialysis than it had become before.

I apologise to Maeve for not replying to her message, as I have only just picked it up.

I am waiting to see what the next steps are. I have had almost every check going, X-ray, Scan and Bronchoscopy of my chest and throat. All is fine so quite possibly kidney removal might take place soon. That will be an interesting moment to say the least.

Mrs Viking and I are keeping busy and cheerful. We had a great Christmas and the winter has been pretty good so far. The routine of three early mornings is easy to adjust to as I would get up early to go to earn the crust in the days I used to. I sit hooked up, chatting or listening to the radio, or watching TV. It gives me chance to get back to listening to music.

I still manage my playing and singing (for what it's worth) on a Wednesday afternoon.

Lastly the Mrs Viking is able to do her hill walking and little Miss Viking and I have given her a week break in Paris for mother's day. She is chuffed to say the least. Her and little ( Not so little now 23 yrs)Viking are off next Monday while I, Aragon the dog and Loki the cat look after the fish in the pond.

Subject: RE: BS: Dialysis, a step into the unknown.
From: Sandra in Sydney
Date: 19 Feb 16 - 08:23 PM

what part does Loki have in looking after the fish?

sandra

ps. good health report!

Subject: RE: BS: Dialysis, a step into the unknown.
From: ChanteyLass
Date: 19 Feb 16 - 08:32 PM

It's good to hear from you again! It sounds like you are adjusting to your new lifestyle. Emphasis on life. Please keep us informed when you can, especially regarding surgery.

Subject: RE: BS: Dialysis, a step into the unknown.
From: olddude
Date: 19 Feb 16 - 10:20 PM

What istthepprospect fora ttransplantmy  friend

Subject: RE: BS: Dialysis, a step into the unknown.
From: gnu
Date: 20 Feb 16 - 06:05 AM

Thanks for the update and keep up the good "work".

Subject: RE: BS: Dialysis, a step into the unknown.
From: maeve
Date: 20 Feb 16 - 08:18 AM

We appreciate you checking in, Eric. Thank you. Any time you'd like to let us know how you are but don't wish to post, please just send a PM to one of us to post on your behalf.
Maeve