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.