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Author Topic: My time has come?  (Read 2244 times)
Simon Dog
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« Reply #25 on: July 23, 2020, 01:50:29 PM »

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One very positive point in using a Dialysis-Centre is the fact that the nurses and doctors are always there and can be approached at all times for whatever question, blood-check-up etc., whereas being at home there are two non-medical people who could get into all sorts of medical difficulties i.e. how much weight to take off/low blood-pressure or hypertension etc. etc. 
I doubt the MDs are always there and if they are, they are probably not assigned to the clinic floor and would only be summoned in a real emergency.

If you are not up to dealing with the tech stuff of the machine, how to read, interpret and use numbers (water off, weight, bp shifts during dialysis) home hemo is not for you.  But if you are determined and not a member of the double digit club [IQ < 100] you can get pretty good at it.   

A chest cath poses significant additional risks.   First off, there is the issue of properly cleaning and packaging it up to prevent infection.

Get the clamping order wrong on a home hemo machine or bloodline and you can have a bloody mess to clean up (or die if you don't correct it in short order).   Make that error with a chest cath and you can have an embolism that goes from your heart to your brain and leaves you disabled for life.
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Mr. B 123
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« Reply #26 on: July 23, 2020, 06:25:18 PM »

kristina and Simon, that is why I am here, to hear different views and information.  I still hope to do home hemo, as long as my son is able to help me out.  Anything is better that being on the PD cycler for 13 hours a day, plus my butt is getting sore from all the sitting around.  2-3 hours of home hemo seems like a breeze.  I will have to see where this take me, maybe in center hemo will be better, but I will try anything that works.  Thanks for your support!!
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Honor God, work hard, and keep show'in up.
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kristina
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« Reply #27 on: July 24, 2020, 02:39:46 AM »

.
One very positive point in using a Dialysis-Centre is the fact that the nurses and doctors are always there and can be approached at all times for whatever question, blood-check-up etc., whereas being at home there are two non-medical people who could get into all sorts of medical difficulties i.e. how much weight to take off/low blood-pressure or hypertension etc. etc. 
I doubt the MDs are always there and if they are, they are probably not assigned to the clinic floor and would only be summoned in a real emergency.

If you are not up to dealing with the tech stuff of the machine, how to read, interpret and use numbers (water off, weight, bp shifts during dialysis) home hemo is not for you.  But if you are determined and not a member of the double digit club [IQ < 100] you can get pretty good at it.   

A chest cath poses significant additional risks.   First off, there is the issue of properly cleaning and packaging it up to prevent infection.

Get the clamping order wrong on a home hemo machine or bloodline and you can have a bloody mess to clean up (or die if you don't correct it in short order).   Make that error with a chest cath and you can have an embolism that goes from your heart to your brain and leaves you disabled for life.

Hello Simon,
First of all, I can assure you that neither my husband nor I have ever had anything to do with your “double digit club”, as you so unkindly put it. And ... since you are a new IHD-owner ... ?

Also, the information you provide seems to differ from the information we have received about different dialysis-survival-methods. For example, we were told that there might be a financial difference between the “running costs” of a patient who uses a Dialysis-Centre where medics are present & approachable at all times ... and the “running costs” of Home-Dialysis.

Using a Dialysis-Centre seems to have been my best survival option, especially since my husband and I are not medically inclined.

As I have mentioned before, I am very grateful to all the medical care I have received in “my” Dialysis-Centre. The medics there certainly helped me a lot to be kept well enough for my transplant to “come along”...  :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
iolaire
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« Reply #28 on: July 24, 2020, 06:36:26 AM »

As I have mentioned before, I am very grateful to all the medical care I have received in “my” Dialysis-Centre. The medics there certainly helped me a lot to be kept well enough for my transplant to “come along”...  :grouphug;
kristina are you in the UK?  If so, we US folks have little experience of the level of care that is available to you.  I will say that when I received dialysis internationally there was a doctor there fairly often to do a quick check-in. A visiting patient in the US might also receive a check-in but the regular folks are only promised a once monthly visit when in the clinic that is required for them to receive Medicare payments...
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
Simon Dog
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« Reply #29 on: July 24, 2020, 07:03:04 AM »

.
Also, the information you provide seems to differ from the information we have received about different dialysis-survival-methods. For example, we were told that there might be a financial difference between the “running costs” of a patient who uses a Dialysis-Centre where medics are present & approachable at all times ... and the “running costs” of Home-Dialysis.

Using a Dialysis-Centre seems to have been my best survival option, especially since my husband and I are not medically inclined.

As I have mentioned before, I am very grateful to all the medical care I have received in “my” Dialysis-Centre. The medics there certainly helped me a lot to be kept well enough for my transplant to “come along”...  :grouphug;
There is no one solution that is right for everyone - what is important is that all patients are given the chance to evaluate all options and pick the one that fits their medical needs, lifestyle and personal preferences.

As to "running costs" - I believe that Medicare or private insurance pays the same.   I used Fresenius, so I can only speak to the out of pockets when dealing with them.

Almost all supplies were provided at no charge to me.  When I was on NxStage I received a monthly order of supplies for the machine, and a separate order of supplies from Fresenius (bandages, tape, needles, syringes,etc.).   The only out of pocket expenses were the power for the machine; the water used (minimal with NxStage); and paper towels.

There were times when I felt the need to have medical assistance directly available, like when I had to start a new buttonhole.  Although I did it myself, I wanted help available.  No problem - just an email to the clinic requesting I come in center for a while.  I was compromised and unable to move quickly after an unrelated surgery, plus my crit had fallen to the barely compatible with life level, so I requested temporary transfer to in-center.   Once there I was "hostage" until I had healed well enough to handle my own treatment and my MD felt my crit was at a safer level.   

And I by no means wished to suggest you are a double digiter. Just because you could learn home treatment does not mean it is the right path for you.

Quote
since you are a new IHD-owner ... ?
Not sure what you mean here.   I arranged a donation of hosting but don't own anything related to IHD, and am not a moderator.
« Last Edit: July 24, 2020, 12:00:07 PM by Simon Dog » Logged
kristina
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« Reply #30 on: July 24, 2020, 08:21:13 AM »

Hello Iolaire and yes, I am in the UK and I feel very sorry if you don’t have similar experiences in the US. I do remember the terrible shock to find out the urgent need of dialysis-treatments.
My own situation made me feel extremely vulnerable & lost and it was such a great relieve to feel well looked after in the Dialysis-Centre. All that helped me a lot to survive my dialysis-years as well as was possible.
Hello Simon, I agree with you, there is not one treatment that is right for everyone.
For me the only real option was a Dialysis-Centre from the start. Not only because of our determination to make sure that my dialysis-treatments would not completely overtake our home and life and not enough space in our place to put dialysis-equipment etc., but also because of my extreme vulnerability, due to my rather serious health-history.
... I only mentioned you as IHD-owner, because it says so. Above your avatar and directly underneath your name it says you are: Administrator/Owner/Elite Member...
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
Simon Dog
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« Reply #31 on: July 24, 2020, 12:02:37 PM »

... I only mentioned you as IHD-owner, because it says so. Above your avatar and directly underneath your name it says you are: Administrator/Owner/Elite Member...
That is because of the privilege level I have in the software, and is not indicative of an ownership interest.

I have arranged for donated hosting and keep the forum software updated to a reasonably current version.   That requires elevated forum privileges and the software had chosen the designation for "Administrator/Owner".
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PrimeTimer
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« Reply #32 on: July 24, 2020, 10:53:52 PM »

Something else to consider when doing dialysis at home; the wife and kid.
Will the wife mind the space that the machine and supplies will take up? Will seeing you cannulate yourself and having blood run through the tubing make her nervous or cause anxiety? Will she handle BP drops? And if you are going to use a Pureflow machine to mix the dialysate, what worries or stress might this cause (leaks, floods, alarms, etc)? As for "the kid"...are they old enough to comprehend and learn what to do in an emergency when it comes to dealing with blood loss and leaks, arterial blood and alarms? Are they a teenager that might come to resent staying at home to help dad instead of being free to spend time with friends or otherwise engaging in activities teenagers enjoy (sports, extracurricular school activities, socializing, dating, studying)? Good luck with your decision.

Prayers!  :pray;

side note: So good to see you back, Kristina!

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Husband has ESRD with Type I Diabetes -Insulin Dependent.
I was his carepartner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
kristina
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« Reply #33 on: July 25, 2020, 01:53:03 AM »

Hello Simon and many thanks for your kind explanation and I stand corrected. I also thank you very much for assisting and helping the forum with your privilege level in the software. Many thanks also for all the time you give IHD with your software-knowledge to keep it going as a forum and also many thanks for your kind explanation and input. :grouphug;
P.S. How does it work out to keep IHD going financially?
Hello PrimeTimer and it is so good to “see” you again and many thanks for your welcoming thoughts !
And I also thank you for your kind explanation about the involvement of all the family, when one member needs dialysis. It changes the whole family-life from then on and can be very difficult to get it all under "one hat" so to speak. I remember when my husband wanted to donate one of his kidneys and was diagnosed with cancer during his work-up. Fortunately it was diagnosed just in time – but from then on he had to undergo - first of all - several of his operations and then came his painful and very difficult regular treatments, whilst I was having my dialysis-treatments at the same time. It was all very heavy going for the two of us and luckily we are still here... :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
kristina
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« Reply #34 on: July 25, 2020, 06:57:51 AM »

P.S. Having just had a look at the pages of my "Dialysis-Diary", I feel I must urgently add, that I was certainly in need of special medical care, because of my dreadful health-history. For example : each Dialysis-treatment could have been easily my very last one, because of huge blood-pressure-issues I suffered from on a continuous basis. Adding to that, I also had already "cheated death" on several occasions before and that made me particularly vulnerable... 
... I just thought that I must honestly add these horrifying facts, otherwise it could be misconstrued/misunderstood, that there could be a possibility of an "easy" dialysis-life... :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
Simon Dog
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« Reply #35 on: July 25, 2020, 07:50:19 AM »

P.S. How does it work out to keep IHD going financially?
I do technical consulting for a company that was kind enough to let me host the dialysis sites on one of their servers at no charge.  The load IHD places on the server is in the noise compared to their website so it doesn't really cost them and it keeps me happy so they don't mind.

Someone else pays the $10 or so annual fee to register the ihatedialysis.com domain name, but I don't have access to the DNS account (so the real "owner", if there is any, would be the owner of the domain name, not me).
« Last Edit: July 26, 2020, 07:38:43 AM by Simon Dog » Logged
Simon Dog
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« Reply #36 on: July 25, 2020, 02:47:43 PM »

I remember when my husband wanted to donate one of his kidneys and was diagnosed with cancer during his work-up.
So is life was saved by his own generosity. Profound karma.
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kristina
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« Reply #37 on: July 26, 2020, 02:36:45 AM »

Hello iolaire and I do owe you an apology because I did not know how much time and work you dedicate to IHD so regularly. Many thanks for all your time and good work dedicated to IHD and please be assured that it is very much appreciated.

It is true that my husband’s life was saved because he underwent the work-up to donate one of his kidneys and just then “his” cancer was spotted and could be treated. But the real spooky point was the fact that he had offered me this option before but I was not ready for it and then just when I finally agreed with going ahead, he was diagnosed with cancer, just in time to be sorted out amicably. Some life-experiences are just very strange and can’t be grasped or explained. :grouphug;

Hello Mr. B123, I do hope you find the most suitable dialysis-option for yourself and your family and hopefully the medics assist you as well for the best decision. I wish you good luck and send you my best wishes from Kristina. :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
kitkatz
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« Reply #38 on: August 03, 2020, 10:50:39 PM »

I am currently the one admin who is responsible for finances for Ihatedialysis.com.

Simon Dog offered us free hosting, so we moved the site to his hosting site, rather than pay for the bandwidth that the site requires on a payment site.
My older sister helps with computer things also, along with Simon Dog.  He does the heavy lifting. My sister does the pages and changes on the site pages. She spends $20 a month to back up our site; she is also backing up everything on her computers, so I do not have to pay her back.

Previously Trina, Epoman's wife was paying almost 200 dollars a year to keep the site running.  When I was thrown into the Admins spot, I redid the IHD.com pages and made sure the site was running; and took the free hosting from Simon Dog's offer. I also took down the premium members sites and the requirement to pay for that privilege.  Any donations that come in, and few have, are sent to Trina and her son Nick. 

We are pretty much self-sustaining as a site.  Eventually I would like to see us go to nonprofit status so we can go to Kidney meetings and be a part of the larger kidney communities. 
« Last Edit: August 03, 2020, 10:53:05 PM by kitkatz » Logged



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Simon Dog
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« Reply #39 on: August 04, 2020, 10:47:45 AM »

Someone still has to foot the bill for the DNS registration of the domain.   A whopping $10/year +/-.
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Mr. B 123
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« Reply #40 on: August 04, 2020, 04:09:14 PM »

Funny how fast your plans can change.  I was not feeling well on 7-23, couldn't catch my breath, swollen leg, low BP, and other things.  Called the dialysis center the next day, orders to go to ER.  After 8 hours in the ER went to my room, needless no dialysis that day.  All kinds of test, heart OK, infection in leg and some kind of intestinal bug, lots of toilet time.  Got out on 7-31 and am feeling better and breathing better, still not great.  I am taking 25 pills a day for a week-10 days, 3 doctor visits this week.  Hope this is over soon.

Vein mapping and fistula surgery delayed by 3 weeks until I am better.  I don't like but I guess things happen that way.  God pulled me thru another health issue, he must stull have plans for me.
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Honor God, work hard, and keep show'in up.
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Simon Dog
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« Reply #41 on: August 04, 2020, 09:44:56 PM »

Quote
Vein mapping and fistula surgery delayed by 3 weeks until I am better.  I don't like but I guess things happen that way
I had a nasty infection in the distal joint of a finger on my fistula arm that required Iv Vanco.  It delayed my fistula surgery by over a month.
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« Reply #42 on: October 07, 2020, 02:10:53 AM »

No one can tell for certain when our time is up. It's hard not to get anxious as we tend to be informed of almost everything nowadays. But trust God's plan. All will be well. :)
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Mr. B 123
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« Reply #43 on: October 21, 2020, 08:53:08 PM »

The story goes on, after a week in the hospital for leg infection and intestinal infection and all sorts of tests they did a CT scan and gave me contrst dye to make the test possible.  I told them that I didn't pee and more so the dye didn't make any difference.  Got home and 3 weeks later I start to pee again.  My KT/V went from 1.63 to 2.04, they want it to be 1.7 or above for PD.  So more test with heart doctor and the heart is good so cleared for raising the fistula I have so it can be used the next time my PD is inadequate, that surgery is on Oct. 30.  I need a break, been a trying year.  Life goes on. :2thumbsup;
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Honor God, work hard, and keep show'in up.
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iolaire
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« Reply #44 on: October 22, 2020, 02:15:07 AM »

Mr. B 123 may the pee flow for you.  I hope its enough to take an extra drink or more each day.
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
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« Reply #45 on: October 22, 2020, 05:32:47 PM »

Iolaire, yes I am drinking more now since I saw the heart doctor.  My BP was very low (75/43) and my heart rate was high (115), the heart doc said I was dehydrated, so we changed my PD to draw off less fluid and I am drinking more.  I don't understand why a heart doctor caught this but none on my kidney team did.  Guess it doesn't hurt to get another opinion.

BP and heart rate are now OK.
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Honor God, work hard, and keep show'in up.
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MooseMom
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« Reply #46 on: October 22, 2020, 07:44:29 PM »

Gosh, you've really been through the wars.  And yes, it's really interesting that it was the cardiologist and not the neph team who caught the dehydration problem!  Knowing that your bp and heart rate are back to being OK is a big relief.  :thumbup;
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