I Hate Dialysis Message Board
Welcome, Guest. Please login or register.
June 26, 2019, 06:19:00 PM

Login with username, password and session length
Search:     Advanced search
527885 Posts in 33163 Topics by 12291 Members
Latest Member: jooloofush
* Home Help Search Login Register
+  I Hate Dialysis Message Board
|-+  Dialysis Discussion
| |-+  Dialysis: Pre-Dialysis (Moderator: KarenInWA)
| | |-+  Officially am declining dialysis
0 Members and 1 Guest are viewing this topic. « previous next »
Pages: 1 2 [3] Go Down Print
Author Topic: Officially am declining dialysis  (Read 4800 times)
Charlie B53
Global Moderator
Elite Member
*****
Offline Offline

Gender: Male
Posts: 3368


« Reply #50 on: April 30, 2019, 03:32:56 PM »


Athena,

Don't give in just yet.     There are a number of members here that have put of beginning Dialysis for many years just paying strict attention to details such is responsible diet and responsible fluids, both type and volume.

You yourself have already seen a huge extension.

Kidney function is a strange thing, it can be affected not only by your fluid volume and diet, but weather changes, ANY medications, be they prescribed or OTC.

I can't say what herbs, but some herbs and spices may be beneficial to function.

That old adage,  "All things in moderation"  really does apply.

Don't lose Faith.   

Logged
Athena
Sr. Member
****
Offline Offline

Posts: 559


« Reply #51 on: May 13, 2019, 09:20:51 AM »

Thank you so much everyone for your replies. Each one has meant so much to me! I am locked into hearing it all from the doctors & nurses right now, so any words of wisdom & accounts of direct experience from fellow patient/warriors is extremely valuable to me.

Today I was educated about dialysis methods (home hemo, in centre hemo & PD (both the manual & automated PD). I don't know how I managed to calmly take it all in.

I seem to being encouraged towards accepting dialysis by everything I have heard today. My new neph is not a pro-transplant type of guy (who works at the preferred hospital). It is my old Neph who is making the case for my being listed for a transplant.

But from everything I have learned - the pancreas tx is very risky to me because if the new pancreas fails - I can't go back to my native pancreas (which functions normally except for the deficient insulin cells). I wonder what your thoughts are on this UkrainianTracksuit?

If I'm going to avoid a pancreas tx, then the only way that I can have a preemptive kidney tx (and avoid dialysis) is to find a living kidney donor! How on earth does one find one? This is a massive problem. The enormity of this dilemma is truly mind boggling. I refuse to even think about asking my sibling to consider donating to me - it's just not going to happen.

The dialysis coordinator seemed to suggest that Peritoneal Dialysis (PD) seems to be the best option. I was shown a photo of a man who travels with PD & who leads a very active life. He seemed to look quite healthy. But that catheter tube that will stick out of one's abdomen is not ideal - it looks risky where infections are concerned. And the thought of having all that extra fluid in the abdominal cavity seems debilitating (for one thing, the missionary sexual position would be unviable because of abdominal pressure).

I am a bit overwhelmed at the moment & I'm just laying it all out on the table, so to speak. It has only just started for ne - I've avoiding looking at this subject for years now.

I will be back to a dialysis education seminar & then to a transplant education seminar over the coming few months.

In the meantime, should I get the flu vaccine? I've never bothered with this thing before as I've not been prone to getting serious colds or flu. I've had a pretty good immune system. I am worried about any serious reactions to the flu vax - I seem to be becoming paranoid & anxious about the concept of being injected with chemicals lately.

Athena.

Logged

Find Cure for CKD now! Please like my facebook page of the same name. Thank you.
iolaire
Elite Member
*****
Offline Offline

Gender: Male
Posts: 1638


« Reply #52 on: May 13, 2019, 12:14:49 PM »

The dialysis coordinator seemed to suggest that Peritoneal Dialysis (PD) seems to be the best option. I was shown a photo of a man who travels with PD & who leads a very active life. He seemed to look quite healthy. But that catheter tube that will stick out of one's abdomen is not ideal - it looks risky where infections are concerned. And the thought of having all that extra fluid in the abdominal cavity seems debilitating (for one thing, the missionary sexual position would be unviable because of abdominal pressure).
Ö
In the meantime, should I get the flu vaccine? I've never bothered with this thing before as I've not been prone to getting serious colds or flu. I've had a pretty good immune system. I am worried about any serious reactions to the flu vax - I seem to be becoming paranoid & anxious about the concept of being injected with chemicals lately.
Athena I'm glad you are able to attend the dialysis education and get continue to be learn about the options beyond declining dialysis.

Don't let the image of an active healthy PD patient cloud your view of the other dialysis treatments. The same image could be shown for HD patients as well (or transplant recipients). But the message that you can be healthy on dialysis is a good one, but that depends on the overall health of each individual person.

The flu vaccine is a good question.  I've not been hit hard by the flu in the past but did start taking it when it was offered at work and later at the dialysis clinic, and now back to work flu shots post transplant. (I could get it at my nephrologist as well.) I guess to me it seems more risky to risk the flu which is common, versus reactions to the vaccine, which I feel is much less common than the flu.
Logged

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.
Cupcake
Full Member
***
Offline Offline

Posts: 172

« Reply #53 on: May 13, 2019, 02:47:48 PM »

Flu vaccine-heck yes! and check to be sure you are up to date on everything else: pertussis, pneumonia, shingles, etc.

Sex while on PD-maybe just takes a little more planning/scheduling,"hook up before you hook up" So things are not always spontaneous, so what? PD is gentler on your remaining kidney function. I did it for 2 years prior to transplant.

You are doing great-keep asking questions!

Logged
UkrainianTracksuit
Full Member
***
Offline Offline

Gender: Female
Posts: 459

« Reply #54 on: May 13, 2019, 03:42:37 PM »


But from everything I have learned - the pancreas tx is very risky to me because if the new pancreas fails - I can't go back to my native pancreas (which functions normally except for the deficient insulin cells). I wonder what your thoughts are on this UkrainianTracksuit?

Hi Athena, good to see you again!

As for the pancreas tx, you keep your native pancreas too. It keeps on doing its digestive and enzyme functions. So, there are two inside you. If the new pancreas fails, it is like life before: back on insulin. The native one keeps on doing its thing either way. Itís a pretty impressive CT scan of the torso to say the least!

Sending good vibes for the dialysis education and you make a decision thatís best for you!
Logged
Charlie B53
Global Moderator
Elite Member
*****
Offline Offline

Gender: Male
Posts: 3368


« Reply #55 on: May 13, 2019, 06:59:41 PM »

http://kidneyschool.org/

I learned a LOT at this place back when I was just starting this adventure.  The more you know the better equipped you will be before starting.

I did PD for 3 1/2 years before I slipped and gave myself an infection from Hell which caused me to have my PD Cath removed.

PD can be a life-saver, not just the dialysis part but for me being medically retired I was still eating as if I were working.  And I was gaining stupid amouonts of weight.

Having 2 liters of 'fill' caused me to seriously change my eating habits.  I began to eat not only less, but I made a conscious effort to eat healthier.  My first 2 years on PD I lost 100 excess pounds.

PD I had the freedom to eat whatever I wanted and I could drink as much as I wanted.

On Hemo we do not have that luxury.  We have to stay veery careful.

My PD Cath was 'tunneled'.  The exit site was mid-way between the center of my breastbone and my left nipple.  I thought it quite handy as it made it easy to see, to clean, make my dressing changes.  I had a couple of the PD Belt holders, but didn't like them at all.  I can relate to how a woman wants to get that bra OFF.    I usually taped it to hold it solidly.  A couple of my pocket T-shirts I cut a small hole in the backside of the pocket, stuck the cath through and it would lay in a curl in the pocket.

A solid week of training, they wanted to make SURE I knew what to do.

My first year I did 4 manuals daily.  Being and outside kinda guy it was a PITA.  I had alarms set on my phone to remind me when it was time.  I had to stop whatever project I was doing,  scrub my hands and arms spotless, go in the house and get done.  4 times a day.

I thought it really neat when I finally got my Cycler.   NO MORE MANUALS>   No more interruptions in my days.

Set up the Cycler with all my bags, prime it, plug into it, sit and read a while then go to bed.  Get up in the morning and disconnect.

The downside to the Cycler was my program was so long I was in the bedroom by 7 every evening.

Since my PD infection caused me to switch to Hemo and I have an early seat time, I am an early riser anyway.  The total time weekly is far far less for me doing in-center hemo.  I am fine with that.  I take my laptop, sit and read, the time just flies as I am lost in my own world.  This works for me.

There will be Pro's and Con's to all Dialysis,  The trick is learning more about everything so you can better tailor your treatment to suit YOU!

Ask away, we will be glad to spell out anything we can so you can make better informed decisions.

Logged
Pages: 1 2 [3] Go Up Print 
« previous next »
 

Powered by MySQL Powered by PHP SMF 2.0.15 | SMF © 2017, Simple Machines | Mobile View Valid XHTML 1.0! Valid CSS!