It just got real!

[ZenaBG]

So I am new here and I thought I would say a bit about who I am and why I am here.  I'm a Diabetic using a Pump and CGM to help control it.  I do fantastically with keeping the numbers in check and everything related to the
Diabetes.  I found out that it is now time to jump into Dialysis 3X a week and to be honest I am not thrilled.  There is so much for me to learn and that's why I decided to look for a Forum.  I need answers and I have a lot of questions about
the upcoming studies and procedures.  I pray I will get some of my questions answered.  Have a brilliant day.  Much Love & Respect    

[Simon Dog]

You're already used to tracking one medical device and numbers, so you might be a good candidate for home treatment.   It's not for everyone, but for some of us, it is vast improvement in lifestyle.   Check it out.

[kickingandscreaming]

Welcome, ZenaBG.  Yes.  It is getting realer by the day.  I agree with Simon Dog to be sure to check out the home dialysis options before settling in to one form of dialysis.  I have been doing Peritoneal Dialysis since last Spring and much prefer it to in-center Hemo.  You might have to recalibrate your diabetes management a bit to accommodate the added dextrose (in the PD fluid), but that can usually work. I like it because it is least intrusive to my life style and gives me the widest berth in food and fluid intake.  And there are NO NEEDLES.  Good luck in making the decisions and adjustments ahead.

[ZenaBG]

Welcome, ZenaBG.  Yes.  It is getting realer by the day.  I agree with Simon Dog to be sure to check out the home dialysis options before settling in to one form of dialysis.  I have been doing Peritoneal Dialysis since last Spring and much prefer it to in-center Hemo.  You might have to recalibrate your diabetes management a bit to accommodate the added dextrose (in the PD fluid), but that can usually work. I like it because it is least intrusive to my life style and gives me the widest berth in food and fluid intake.  And there are NO NEEDLES.  Good luck in making the decisions and adjustments ahead.

I am familiar with home dialysis as my Dad did it for 11 years.  I think that he main reason the Dr would like me to do it at Center is that right now I live myself & nobody would be there in case something would happen.  He said that if the situation changes I can go to home dialysis.  I'm not a fan of the Center  so we will have to see.  I have questions about the dialysis fistulas .. I go for the vein mapping next week UHG

[kickingandscreaming]

I think that he main reason the Dr would like me to do it at Center is that right now I live myself & nobody would be there in case something would happen.

With PD, that is generally not an issue.  I also live alone (exc. for my dog) and I'm 75 and have no trouble doing PD alone.  If something goes funny in the night, and my machine alarms, if I can't solve it myself I call Baxter tech support and they walk me through the solution.  I all hell breaks loose I can always call my PD nurse. 

If we're talking Hemo, then to do home hemo requires a care partner (in most states).  So that isn't available to you as a lone dweller. Going in center eats up a lot more time and intrudes a lot more on lifestyle than PD.

[Shaks24]

Welcome and I hope you transition as well as possible into dialysis. I do PD at home and it has been pretty good for me. I do have a wife at home but she does nothing with my dialysis. I also have a fistula in case of problems with PD as some folks sometimes have. So far after 3 years I have not had to use the fistula. Some of the dialysis providers offer a presentation where they go over all the advantages and disadvantages of the different modalities. I attended one with Fresenius before starting and it helped met confirm my desire to go with PD.

[cassandra]

Welcome to the site ZenaBG


     


Take care, Cas

[Charlie B53]

Hi ZenaBG.

Welcome to IHD.    Ask away, we are all more than willing to help explain anything you need.   There are uncounted posts that cover many things.  The trick to using the Search is using the right words.  That can be a problem if you don't know what word to use.

I just switched from PD at home to in-center hemo because of an particularly nasty bug that just would NOT die.  Three rounds of antibiotics and ended up taking out my PD cath and having a Parma Cath poked into me.  Two or three months and hopefully I will get another PD cath and return to what I have been doing at home every night for the last three and a half yers.

I am severely limiting my fluids and cutting out all the things that I used to be able to eat.  It is  a big change, but I will get by alright.

Glad to have you join our "family".

Take Care,

Charlie B53

[Michael Murphy]

Look at small independent clinics some have the equipment to do remote monitoring of at home patients thru the internet.  There is one in Saratoga  30 miles from my house in the Adirondacks.

[SooMK]

Welcome ZBG!

[Simon Dog]

Look at small independent clinics some have the equipment to do remote monitoring of at home patients thru the internet.  There is one in Saratoga  30 miles from my house in the Adirondacks.

The "remote monitoring" is available in NY because that state has regulations that require it of home hemo patients.  The advantage is that the result is a "no care partner" requirement.

The Northwest Kidney Center in the  Seattle area apparently budged on that requirement for some patients.

I doubt you will find real time remote monitoring in the US where not mandated by law.   The only hope for solo home hemo is finding a neph at an independent clinic who can make a judgement based on your skills and medical condition rather than lawyer driven corporate policy.

NxStage has "nx2me" remote logging of treatment data which is more widely available, however, that is not "real time monitoring".

[Charlie B53]

As needle-phobic as I am, I still have no doubt that IF the Vascular Surgeon and my Neph together conspire to tell me I can no longer go back on PD I will be forced to face my fears and learn to needle myself well enough to eventually get a nXstage at home.

Wife won't be any help whatsoever.  I know it will all be on me to do it all, so I will HAVE TO LEARN very well.

I sure do like having choices far better.

[kickingandscreaming]

And for me, when the time comes that I can no longer do PD, that will be my cue to exit stage left and move on to certain death. I certainly do want to delay that "choice" as long as possible.  But assuming my dog is gone at that point, there will be no further reason for prolonging my life and becoming a human pin cushion.

[Simon Dog]

A family friend in his 50's recently opted to discontinue D and die, with a big part of his motivation being to "go be with his dog".   

Dogs rule.

[kickingandscreaming]

A family friend in his 50's recently opted to discontinue D and die, with a big part of his motivation being to "go be with his dog".   

I don't want to hijack this thread, but am very curious about your friend's experience.  If you have any details to share, and would like to PM me that would be great.

[Charlie B53]

It isn't only the Grandsons keeping me here.  I have TOYS that I like to play with.   People yet to meet.   Words that need to be spoken.  Don't know what or to who, but I feel I have a mission yet to perform on this rock, that my life is meant to accomplish something specific, and that I have not done that yet.   So I may be here a while yet.   I only know that it isn't up to me.

[Blake nighsonger]

Atta boy Charlie B53

[Simon Dog]

I have TOYS that I like to play with. 

Lemme guess - Pickup trucks, guns and power tools.

[Charlie B53]

all of the above, plus my garden, fishing gear, Super Charger Harley Shovelhead (1979), Boat.

I should list the Wife in here somewhere.

[iolaire]

I'm not a fan of the Center  so we will have to see.  I have questions about the dialysis fistulas .. I go for the vein mapping next week UHG

Welcome, I think you will find that there are quite a few people who have settled into center dialysis and learned to bear it.  Pre dialysis I assumed I would be on PD or doing in home HD but then it felt like I would get a transplant soon so I stayed in center.  Now three years later (plus 7 days) I'm still in center without a transplant and have been to centers around the world. 

Centers are convenient because the techs do everything for you, but I find they still asking me how to do things because I have opinions and voice my desires (and am compliant).  At this point the techs are fairly new so even more so they ask where I want to be stuck and how.  Honestly I probably should self cannulate just to maintain more control by so far I'm lazy. 

So my point is if you choose to influence your care you can still do it in center.

If I were to be removed from the transplant list for some reason I'd move to in-home dialysis immediately, seeking a nextstage system so I could bring it well I travel.