Dannyboy Update

[Dannyboy]

Hi,
Well a lot has happened in the past couple of weeks.

I had trouble breathing and wound up in the hospital (pnuemonia).   At the same time, my kidneys finally gave up, and I got a chest cathether placed and started Dialysis in the hospital.   Sheesh.   What a week.    [My fistula surgery is scheduled in a couple of days].   

I'll be going to in-center for now, (obviously) until my fistula is ready and I can train for NxStage.

So I was "pre-D" for a long time, then WHAM!! everything changed in just a few days.      I feel weak, etc. but actually do feel a  bit better, sort of feel less "itchy" if you know what I mean, and a general sense of doing better over-all now that I'm on Dialysis.

---Dan

[billybags]

Dannyboy, Sorry to say that you never know what is around the corner. Hope you are feeling much better.

[looneytunes]

Whew...what a week you've had!  I hope you continue to feel better with treatment and are back to the land of living soon! 

[monrein]

   What a week indeed!  Sorry it had to go the way it did but hope that you'll get more symptom relief as you adjust to D.   

[texasstyle]

give yourself a little time to get through the adjustments. keep in mind you've been sick for a long time. My husband dies not get the itchies, but I know that's part of kidney disease.Make your best effort to follow the diet and fluid restriction as best you can. It will really help out a LOT with the way you feel.   TS

[jbeany]

I think I was happiest to lose the "metal mouth" so food tasted normal again!

Hang in there!  That was a heck of a week, indeed!   

[malaka]

Pneumonia, hospital, kidney failure, chest cath, and fistula.  Sort of like that "Lost Dog" poster joke which end "answers to name Lucky".Musta been one  hellluva week!

[Dannyboy]

Thanks everyone for your kind comments.   I know you have been through this stuff and lots more, it is comforting.

A bit up/down emotionally with all these changes, I expect that will get better with time too.   Always been strong, silent type, these experiences have brough out a soft, vulnerable, fearful side I didn't know was there.
---Dan

[MooseMom]

I hope that you will keep posting about your experiences and about how you feel about them.  Please don't retreat into being the 'strong, silent type" because that doesn't teach anything to people like me who are still pre-D but are desperate to know that there is life on the sharp end of the needle (ode to Bill Peckham).  I don't want to intrude, but I personally would be extremely grateful for any posts from you that illustrate how you are feeling physically and emotionally.  Thanks in advance.

[Dannyboy]

Hi MM,
Some things that come to  mind....my experiences of course:    Kind of got hit hard with the "reality" of going on "D".....thought I'd be ready mentally/emotionally etc.    Overwhelming feeling.   Your mileage may vary, but that's how it was for me.

Going to Dialysis in center (after having it done in the hospital) has taken adjustments.....I wasn't prepared for the room to smell like bleach (from disinfecting operations) for one thing.   The staff have been good, but they have seen it all many many times before....I do not fault them in the least (I have been treated professionally and courteously)but, it's just that you get the feeling you are just a little cog in the "works", yet another poor schmuck who is stuck with having to do Dialysis.    I was/am so glad I have learned a lot by hanging around IHD to sort of know what was coming.

I had been on a "renal"  type diet for a long time, but now with Dialysis, need to adjust a bit.

Feeling over-all:   it hasn't been that long yet, but it "dawned on me" recently when getting up in the morning that I am FEELING BETTER!!!   YEAH!!!!!    Not great leaps better, but better enough to mention it.    I've read elsewhere on IHD where others new to Dialysis had that experience, too.     One of the puzzles for me, Pre-D was how much of a difference Dialysis would make, and while I'd prefer NOT to be on D, I must say I absolutely am feeling better, and that is a good thing, one of the few bright spots here.

More later when i think of things.
---Dan

[MooseMom]

Oh, thanks so much for taking the time to post.  Yes, I can understand how disheartening it must be to be going through this life-changing event while the clinic staff don't think twice about it.  This is nothing new to them, and that's probably a good thing!  You don't WANT them to be feeling what you are feeling!!  But you know, these are people you are going to be seeing on a regular basis, so there is no reason why you cannot form a friendly relationship with them so that they will know that you are not just another "poor schmuck" and you will know that they are just one more outfit of detached, uncaring robots.

I've been doing the pre-D thing for as long as I can remember, and when I try to imagine what that first day on D will be like, I realize that I will most probably still feel vastly overwhelmed.  It will not be a pretty sight!  So I think I can understand how it was for you. 

The bottom line is that this is a treatment that, while terribly burdensome, IS supposed to make you feel better, so if dialysis helps you reach that particular goal, then that is an enormous bright spot!

Again, thanks so much for posting, and yes, as you continue down this particular road, if you don't mind, please tell us more if/when you feel like it.

[Jean]

So glad you are feeling better. Thanks for the insite on the quick entry into the wonderful world of (D). Hope you continue to feel better.

[Lindia]

My hubby has been on dialysis since May.  He is feeling better, can walk farther and do more.   TRIPLE CHECK about your training for NxStage.   We were told we could train when we wanted,  just recently found out there was a 3 month waiting list.  We wish we had gone to the  only center in town that trains - our center and nephrologist were clueless about getting us started.   Talk directly to the training location - don't take anyones word about how available the training is.        And  ((hugs))  for the "emotional" aspects,  even knowing a lot, its still pretty overwhelming at first.

[Dannyboy]

Well today in center, had really low BP at one point, thought I was going to pass out.  Quite unpleasant feeling.     The techs paused the machine, pushed fluid back into me and the 'feeling' went away after a bit.   Yeah, too much fluid removal with the adverse effect of BP meds to get in the way.   Next visit will be with no BP meds prior (take them after if at all, depending on BP).

Still trying to arrive at my ideal dry weight, I'm just amazed at how much fluid I have been carrying, pre-D, I mean REALLY amazed, weight wise.    Every D session now I weight less and less.   Sheeeeesh.   Who knew a person could carry so much extra fluid around?    Even with 'watching' my fluid intake and Lasix, pre-D.   So yeah, my overall 'size' has shrunk a bit from getting rid of all this extra fluid.    This fluid is like 'spread out' everywhere, just a bit prevalent in the ankles nowadays (unlike pre-D when it is was VERY easy to see the edema).    So hoping my next few sessions on D will arrive at my best 'dry weight'.

Still feeling 'better' over-all but having trouble sleeping still.....sort of a 'restless' feeling.   So here it is 4:00 AM PST and I am up posting on IHD.
---Dan

[kristina]

Hello Dannyboy, I have just read what you went through
and I am so glad you feel better with Dialysis,
I do hope your having trouble sleeping sorts itself out soon
and I send you my best wishes & good luck for the future 
from Kristina.

[Dannyboy]

Still dealing with unusual tiredness and the sleep issue.   It's only been a week since I was discharged from the hospital, wish I had more energy.   The Dialysis sessions so far have left me a bit tired, but I hear that will get better once my dry weight is figured out.
--Dan

[MooseMom]

I suspect that I'm carrying a lot of fluid, too, so I think I know what you mean.  I don't have swollen extremities, but I have a feeling that this fluid is "spread out".  I've heard that once your true dry weight is determined, you've overcome a big hurdle.  Keep hanging in there and be patient with your body.

[Dannyboy]

@MM:
The amount of fluid I was carrying has really shocked/amazed me.   I suppose this is one of those 'individual' things, but wow...     Pre-D my ankles were always swollen, and my legs too (sometimes so bad I couldn't get my regular Levi's on easily).   
---Dan