I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: General Discussion => Topic started by: Mr. B 123 on September 02, 2019, 10:44:18 AM

Title: My time has come?
Post by: Mr. B 123 on September 02, 2019, 10:44:18 AM
I have not posted much lately, just reading and learning from others on this kidney journey.  But my time has come, 2 months ago went to doctor for check-up to go to Boy Scout summer camp with my troop and kidneys were at 17%.  Went to nephrologist 1 week later and at 13%.  Then things started to move fast, PD catheter operation on August 13 and now attending classed at dialysis center to do home PD.  Lots to learn along with my Son  who is my "wingman" in all of this and my wife is also attending as a backup.  Thank God for their support!  Some problems with the PD plumbing, blocked, so flow was slow, but working thru that hope to be going full speed by end of the week.  All of this is scary and life altering but with support of family and knowing my God is helping me thru this I will "Do my best".  That is my rant for know, continuing to learn about kidneys from all the information and experiences on this forum.  Thanks for being there!
Title: Re: My time has come?
Post by: Kathymac2 on September 02, 2019, 12:43:34 PM
Mr B,

Best of luck to you as you start on PD. It's a journey many of us have taken successfully.  Allow yourself plenty of time to get used to the process. What seems overwhelming now will be routine when you look back at this time in a couple of months.

My best advice is believe your nurse when she tells you "constipation is the devil".  Eat well and use laxatives prescribed by your doctor as needed. My doctor prescribed lactulose and it's a lifesaver. I take it with a small glass of water every other morning and I have never had a slow draining problem. 

I made up medium-sized plastic food storage containers without lids to keep my supplies together for hooking up to my cycler, for adding heparin to my solution bags and for my daily dressing changes. It makes it easy to grab the needed supplies and go. You can also see when you are getting low on supplies. 

Kathy
Title: Re: My time has come?
Post by: MooseMom on September 02, 2019, 03:22:04 PM
Gosh, it HAS been a long time since we've seen you around these parts.  I don't really want to say, "Welcome back", but I think you know what I mean.

Have you thought at all about transplant?

Take good care of yourself, hugs to your wife and son, and keep us posted on how PD is going for you!
Title: Re: My time has come?
Post by: Mr. B 123 on September 06, 2019, 12:09:30 AM
Kathy, Thanks for the tips, I will get a plastic storage container for all my "stuff".  I spend 15 minutes finding everything just to get started.  Yes I have found out about laxatives and have been taking them 2 times a day.  The nurse thought at first it might help with slow drain,  but still had issues so a trip to hospital for x-ray showed the catheter moved and was too high and was not draining completely.. So now back for surgery to fix that issue next Wednesday.  Not looking forward to more surgery but I need to get things going.  Thanks for the tips. 

MooseMom,  It has been a while since I have posted anything but I have been reading the posts.  My eGfr was stable for 5 years but crashed this summer, so here I am.  Yes we have discussed transplant but I realize that can take time to happen.  So PD for now and see where we are in a few months.  I was set to do hemo, in fact first fistula quit so I had a 2nd operation to have it ready but it is embedded in my arm so that will be another operation to bring it to the surface to have as a back up if PD has issues.   Good to hear from you, my family still talks about the Chicago lunch we had a few years ago, we should do that again.  Take care!

 
Title: Re: My time has come?
Post by: MooseMom on September 06, 2019, 09:27:57 AM
You know, every time I pass that place where we had the IHD lunch, I think of you.  The restaurant has changed ownership several times since then.  It is now a "modern" Mexican food place, having moved from a great location elsewhere in St. Charles.  I'm not sure why they moved, but we still go there from time to time as they have really good tacos and great salads.  My husband and I would be pleased if you and your family could meet us there again some time when things are a bit more settled with you.

It must have been a shock to see your gfr suddenly decline.  Mine was stable for many years, too, and then suddenly tanked to below 20, at which point I got on the tx list.  I wonder why our gfrs just suddenly would decline like that!  I guess it's like a clogged filter; it can take the increased pressure for only so long before it finally clogs up to the point where it is basically useless.

Anyway, I hope PD works for you long enough to serve as merely a "bridge" to transplant, if that is what you wish.  In the meantime, I am hoping that the really smart boffins out there can devise better dialysis systems.  We've talked about that for years on IHD, and we have yet to see anything really mind-blowingly new.

I'd be most interested in following your progress should you care to post about it!
Title: Re: My time has come?
Post by: Mr. B 123 on September 06, 2019, 10:56:23 AM
MooseMom,  It would be good to see you again, maybe lunch after I get settled into place.  My wife has family in the Elgin area so we still head in that way to visit but it would be fun to get to see you for lunch, no problem taking a short trip.  I will let you know how things progress with this new journey.  Good to hear from you again, take care.
Title: Re: My time has come?
Post by: MooseMom on September 06, 2019, 02:59:02 PM
That sounds great!   :thumbup;

How is your wife handling all of this?  It must be a real challenge for both of you. 

Thank you for reminding me about your fistula; on reading your post, I'd wondered why you had decided on PD because I remember you telling other "newbies" that the surgery wasn't so bad.  Now I know.  When I had my fistula created, the surgeon made it so that it was brought to the surface like you've said that your surgeon will do should you decide to do hemo in the future.  Hopefully, PD will be very successful for you (despite the clutter).

Have you been on dialysis long enough for you to be able to feel physically better?  I know you've had trouble with getting a good access (which is the real bug bear of dialysis; the body is not built to have a permanent outside access to the cardiovascular system).  I hope any surgery you undergo to fix that problem goes well and that you'll soon begin to feel the benefits of PD.
Title: Re: My time has come?
Post by: Mr. B 123 on September 10, 2019, 09:48:18 PM
Actually I haven't started dialysis yet, like I said the catheter was too high to drain so I am sitting hers now ready for surgery tomorrow at noon.  I hope all goes well so I can get started on dialysis.  My skin is itching like crazy and my skin is extremely dry.  Had a foggy brain and blurred vision back month ago but that has improved.  With this delay and the second operation tomorrow they canceled 3-5 training sessions so it will probably be October before I get going and will feel better.

During the training we have been working on exit site daily cleaning and hooking up to the machine.  They will bring the machine when they feel I am ready to start.  Today they delivered 130 boxes of supplies to get things going, had to make room on the sun porch for everything.  3000 pounds of stuff the delivery guy said

Better head to bed, long day tomorrow!  Take care and I will kep you posted how things go.
Title: Re: My time has come?
Post by: MooseMom on September 11, 2019, 08:07:11 AM
Oh, OK, thanks for clearing things up for me.  I apologize for having misunderstood.  I knew the catheter was too high, but for whatever reason, I thought they had fixed that.

I hope your operation today goes/has gone well and that that particular problem is now solved.

I've often heard PD patients talk about the sheer quantity of STUFF involved! 

Best of luck to you, Mr. B!

Title: Re: My time has come?
Post by: Mr. B 123 on October 18, 2019, 11:01:23 AM
Well it has been 3 weeks on PD, I am getting the hang of the entire process.  Lots of stuff to get ready to start and to disconnect from the machine.  Takes about 9 hours connected to the PD machine but then you have to load the solution wait for it to warm up and then do all the things to disconnect and put everything away so right now it takes a total of 11 hours from the time I get on the machine until I can walk out of the house to go to work, a doctor appointment or church.  Had a 7:30 a.m. doctor appointment last week and I had to be on the machine at 8:00 p.m. to give me time to shower and everything and then drive to the doctor's office.  I am learning to plan my time ahead so I can be ready to go, I am not complaining just have to make adjustments to get out of the house on time.  Over all the dialysis center says everything looks good, weight, BP and all of the other tests.  Have to do the P.E.T. test next week, that will be an all day event as I need to be at the dialysis center every 2 hours, it will be a full day.  I thank God and my family for being there with me thru this process.  That is my latest update on my PD saga, thanks for listening to my rant.  Take care!
Title: Re: My time has come?
Post by: Riki on October 19, 2019, 11:26:37 PM
You can set up the machine ahead of time, so that when it's time for bed, you just connect and you're done.  My mom used to do it for me when I worked nights.  She'd come into my apartment in the evening and set up my machine and go back home again (though sometimes she'd stick around for a while and play on my pogo account, cuz mine was paid and her wasn't).  When I got home around 4am, it was all ready for me.  When I moved home, we would take turns every night, setting it up.  We even timed each other, to see who could do it faster.  Mom could get it done in 4 minutes.  I couldn't get it below 7 minutes.
Title: Re: My time has come?
Post by: Mr. B 123 on March 26, 2020, 07:14:58 PM
On my 7th month of PD, like everything in life you get used to it.  I am happy my kidney doc said to go with PD even though I have a fistula for HD, I still want to remain active and many folks I have talked to HD really slows you down.  I sit in my room right now looking at 60 boxes of supplies hoping this will keep me going with the supply company, they seem to be on top of things with all the virus stuff going on.

Was in the hospital for 6 days at the end of February for a leg infection, glad I got out before things got busy with other health issues.  I was interesting doing PD in the hospital, the nurses and the dialysis nurses saw that I was good on my own to set things up and just let me do it on my own.  One nurse said she learned a lot about dialysis just talking to me, glad I could help out!  Even brought some supplies from home that they didn't have, like a 22 foot patient instead of the 10 foot one I got the first night.

Went to the dialysis center for my twice a month appointment and now they are going to do visits on my smart phone so everyone stays healthy and to reduce exposure time for staff and patients, good idea.  Just 1 visit per month for blood work.

Just an update for now, hopefully all will be well and the world can get back to normal, if there is such a thing?  Be healthy, be safe & Be Prepared!
Title: Re: My time has come?
Post by: Simon Dog on March 26, 2020, 09:59:34 PM
I've often heard PD patients talk about the sheer quantity of STUFF involved! 
The way I described it to people was having my prescription order delivered by fork lift.
Title: Re: My time has come?
Post by: MooseMom on March 27, 2020, 08:01:24 AM
Thanks for the update, Mr. B 123!  Gosh, it seems like you're quite the pro, now!  Look at you, teaching those nurses a thing or two about dialysis!  Well done you!
Title: Re: My time has come?
Post by: Mr. B 123 on April 01, 2020, 09:47:41 AM
Simon Dog, you explained it exactly!  And it comes in a truck!

Moose Mom, yes it just takes getting used to things.  Once everything get settled down we will have to do a lunch with the gang!  That was fun.
Title: Re: My time has come?
Post by: Mr. B 123 on May 12, 2020, 05:57:24 PM
Well my friends, my journey on dialysis continues on.  Seems my membrane is slow and my kidneys have stopped working, they say it might be from antibiotics I was on while in the hospital 2 months ago to fight off an infection in my leg.  So now PD has to do all the work and they are trying different solutions to get enough treatment to do the job.  I have changed my cycler 4 times in the last month, more time, more exchanges, more bags, different solutions, etc.   Starting a new solution tonight, etraneal to see if that helps.  They are even talking about going to hemo, which I really don't want to do if I can avoid it.  Oh well as they say, "I don't like it but I guess things happen that way".  got to go with what works, hope this new program helps.  Everyone be safe, be healthy, Be Prepared!
Title: Re: My time has come?
Post by: Simon Dog on May 12, 2020, 09:04:06 PM
Back when I was on PD I did a daily exchange at work, and would occasionally take a half dozen or so cases of solution for my office.  Got really strange looks at the loading dock when they wanted to know what I was self -delivering .... I just told them prescription medication.

If you do have to go to hemo, you don't have to lose the benefit of home treatment.   The technical demands are greater, but you don't live in constant fear of peritonitis.  If you take an attitude of "I will prevail", you can learn to follow the protocol and avoid the entire clinic experience.  You also will be drawing you own labs and shipping them off.  I had two shipments to make - one to the Fresenius lab and one to the regional tissue typing lab for the final test for when I became a candidate to make a withdrawal from the organ bank.
Title: Re: My time has come?
Post by: Mr. B 123 on May 21, 2020, 07:43:34 PM
Simon, thanks for the advice. Hopefully I won't have to do HD.  Still working to increase the treatment to avoid HD.  Did more testing today to see where PD is at so I hope I get a good report.  Take care!
Title: Re: My time has come?
Post by: Mr. B 123 on July 21, 2020, 03:35:54 PM
Got bad news yesterday, PD is out, have to go for operation to raise fistula so I can start hemo dialysis.  Two more surgery's next month, one to raise the fistula and another to remove the PD catheter.  Not looking forward to these, four operations in 11 months.  I am hoping to do home hemo if I can get my son to be my wing man, otherwise in center, no choice.

I guess life goes on.  It is a great to be alive.
Title: Re: My time has come?
Post by: Simon Dog on July 21, 2020, 03:57:02 PM
I am hoping to do home hemo if I can get my son to be my wing man, otherwise in center, no choice.
The NxStage system is now FDA approved for solo (no partner) dialysis, except for the nocturnal protocol.
Title: Re: My time has come?
Post by: cassandra on July 21, 2020, 07:54:36 PM
Seriously Mr. B 123, Nxstage is the way to go. I did in-centre hemo for 16 years, 5 years PD before getting the chance to get Nxstage (UK) and am doing that now for 8 years solo. Like simon says: not only same independence without the Peritonitis drama/trauma. You’ll feel better for it too ( I have no kidneys/function either) Never give up hope, life is the only way to be, I find  ;D


Good luck, Cas
Title: Re: My time has come?
Post by: MooseMom on July 21, 2020, 08:15:00 PM
I didn't know that the FDA had approved solo NxStage!  That might be a real game changer, Mr. B.  I'm sorry you've had this drama, especially in these viral times, and wish you the best.  I don't like it that you have to have these ops, but I want you to stay alive! 

Would you mind updating your news as time goes by?  I'd like to know more about your thoughts regarding NxStage/home hemo, although I realize said thoughts might change from day to day.  I'm sorry to hear that PD didn't work for you.  I know you really wanted to avoid hemo, so I'm really hoping that ultimately you can give home hemo a try.

Best wishes, Mr. B.  Keep us posted!
Title: Re: My time has come?
Post by: Simon Dog on July 22, 2020, 01:14:10 PM
I know that as of 2 years ago before my xplant that Fresenius had something like 80 solo patients on NxStage (info from my MD).
Title: Re: My time has come?
Post by: Mr. B 123 on July 22, 2020, 05:08:40 PM
Thanks for the support Cas, Moose Mom & Simon, I am doing my best to stay on top of things and I hope this goes well for me.  Talked to the home hemo nurse and went over a quick rundown of the machine and I have checked a few videos of how to set up the machine and start dialysis, lots to learn.

I am doing vein mapping this Friday then I see the surgeon next Wednesday to get things rolling for the 2 surgery's.  I can only place all of thin in God's hands and ask for his guidange and blessing.  Thank you all for listening.
Title: Re: My time has come?
Post by: kristina on July 23, 2020, 08:22:01 AM
... I had a chest-catheter for a few years and I feel very fortunate, that I never had any problems with it. There was no pain and no bother. But I must point out, that I was dedicated to always adhere to all the rules involved : no bath and no water ever near my chest-catheter.

I also used a Dialysis Centre three times every week, each time for four hours and the reasons for that were as follows : our home  would be too small for all the medical equipment necessary for home-dialysis and furthermore, if I would have been having dialysis at home I would – directly or indirectly – have caused stress to my caring but non-medical husband and I don’t think that would have been fair. Also, our home is our home and it would not be right to change it into a semi-hospital, because then we would allow my dialysis-treatments not only to take over our home, but also our life.
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 am very grateful that I had the opportunity to go to a Dialysis-Centre, where the nurses and doctors were not only very professional, but also very kind and approachable and I am very grateful for their kind medical care and  - to be honest – I am not sure if I would have done so well up to my transplant without them ? 

I wish you good luck with whatever suits you best and I send you my best wishes from Kristina. :grouphug;
Title: Re: My time has come?
Post by: Simon Dog on July 23, 2020, 01:50:29 PM
.
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.
Title: Re: My time has come?
Post by: Mr. B 123 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!!
Title: Re: My time has come?
Post by: kristina 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;
Title: Re: My time has come?
Post by: iolaire 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...
Title: Re: My time has come?
Post by: Simon Dog 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.
Title: Re: My time has come?
Post by: kristina 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...
Title: Re: My time has come?
Post by: Simon Dog 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".
Title: Re: My time has come?
Post by: PrimeTimer 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!

Title: Re: My time has come?
Post by: kristina 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;
Title: Re: My time has come?
Post by: kristina 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;
Title: Re: My time has come?
Post by: Simon Dog 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).
Title: Re: My time has come?
Post by: Simon Dog 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.
Title: Re: My time has come?
Post by: kristina 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;
Title: Re: My time has come?
Post by: kitkatz 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. 
Title: Re: My time has come?
Post by: Simon Dog 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 +/-.
Title: Re: My time has come?
Post by: Mr. B 123 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.
Title: Re: My time has come?
Post by: Simon Dog 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.
Title: Re: My time has come?
Post by: Hereware 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. :)
Title: Re: My time has come?
Post by: Mr. B 123 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;
Title: Re: My time has come?
Post by: iolaire 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.
Title: Re: My time has come?
Post by: Mr. B 123 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.