Hey, Y'all!

[Genlando]

Hi,

I started dialysis about 3 months ago, and I just stumbled on this site!  In March of this year, I was hospitalized for severe high blood pressure.  They tested my creatinine, and it was about 9.0.  3 weeks later, I had a brand-new permacath implanted, and was receiving hemodialysis.

Suddenly, my life has changed.  I'm still getting used to not having to go to work everyday; dialysis kicks my butt just about every time; and I always seem be tired--even on my non-dialysis days.  Everybody tells me that life will get better once they can get a fistula operational, but so far, they haven't been able to make one work (I'm going to see a hematologist next month.  The surgeon thinks my blood is sludgy).

To be totally honest, I ignored my high blood pressure for years.  I always felt that I didn't have time to fool with "trivial things" like hypertension.  Well, I can't ignore it anymore. Looking back on the last several years, I've gotten little hints that things weren't right, but I ignored them.  First, it's like God softly knocked on the door and whispered a warning; I didn't listen.  Then, He knocked a little harder; again, I didn't listen.  So, finally in March, God knocked down the door with a battering ram, tossed in a couple of flash-bangs, and came in screaming, "Take care of your health, boy!"  I finally got the point. 

I'll probably have lots of questions as I get used to my new lifestyle.  I look forward to getting familiar with all of you!

[RichardMEL]

Welcome to you Genlando! That's a great introduction. I certainly hope as things stabalise for you you will find more energy and the ability to cope better with dialysis - fingers crossed! Hopefully we can help with your journey also. Look forward to seeing your contributions!

RichardMEL, Moderator

[Jean]

Great intro and welcome to IHD. Glad God finally got your attention. Sometimes it does take a brick wall to fall on us, doesnt it?

[MooseMom]

Same thing happened to my cousin...ignored high BP and it finally got his kidneys.  His creatinine reached 13 and the nurses asked him why he wasn't dead yet.  He did dialysis for almost 3 years and then got a living donor transplant; he's doing well now, but it's his wife that makes sure he takes his meds.  He'd be dead without that woman!  So, moral of the story...take care of yourself!  You'll now have a whole bunch of people making sure you are doing well.  Glad you've joined us and be sure to post often!

[Bajanne]

Welcome to our community!  You have found us at a good time.  I discovered this marvellous site just before I started dialysis and it is impossible to quantify what a tremendous help it has been to me.  The information and the support here are amazing.   This is more than a website - it is a caring and sharing family    What you have to do is continue to read as much as you can and post as much as you can, so we know how it is with you. 
My first months of dialysis were very lethargic for me.  I didn't drive myself, and would just come home, lie on the couch and not move until morning.  But after a while I was even leaving dialysis (driving myself) and going to tutor high school students!  Give yourself some time.
Looking forward to hearing from you.





Bajanne, Moderator

[monrein]

  to IHD.

[cloud393]

  Glad to have ya join the site.

[kellyt]

So glad you found us and decided to join!  You will love it here.  I sure hope you can get a working fistula soon.  I had two fistulas placed, as my 1st didn't work.

Welcome!   

[haemogoblin]

Knock knock,
Who's there?

Haemogoblin.
Haemogoblin who?

Haemogoblin, the very cool renal goblin who is kicking down your virtual door to offer you a nice cup of tea and a welcome to the neighbourhood.

If you want to borrow some sugar, come see me.

[Genlando]

I appreciate all the folks who have dropped by to say hi so far. I'm especially thankful for the good news that I'll eventually start feeling better as my body gets used to dialysis. 

I'm sitting in the dialysis chair right now, in downtown Columbia, SC.  Since my HD center doesn't offer wireless, I've got my jailbroken iPhone attached to my "dialysis laptop"--a machine that I use exclusively for that purpose.  (I worked in with computer since the '80s, so I've obtained a constellation of workstations and laptops at home).

The next part is off topic, so I apologize in advance.  This is also going to probably degrade to rant-mode in places:  For the last several dialysis sessions, my permcath has acted up, causing my dialysis machine to constantly stop with a low arterial pressure error.  I mean, it errors every 60 seconds.  Of course, the staff at the HD center simply hit the reset button, as if that's going to fix the problem.  I started complaining about this to the center's management, and they've now tried the following:

1) Swapped out the permcath--they put in a supposedly "high-flow" catheter that they claimed would make all things better.  That's BS (bogus speech).  If anything, the new catheter is worse, plus it hurts every time anybody touches it.

2) The Access Nurse told me to start coming in 1/2 hour later, so they can put cath-flow into my line prior to dialysis.  That worked twice.  After that, it still acts up the whole session.

3) Somebody "power-flushes" the catheter after about 2 dozen resets.  This works for a few minutes, then it's back to every 30 seconds.

     My blood isn't getting cleaned during 4 hours of dialysis, and the staff seems to be upset because I'm always the last person to leave at the end of the session.  Anytime somebody says something like that, I think to myself, "Tough sh&*," because they're getting paid to do their job.

I understand that things will get better once they can get a fistula to work, but that's still months in the future.   Right now, the permcath is my lifeline, and they need to get the thing working, not press the reset button.

Any ideas?

[peleroja]

Welcome to the group.  I, too, ignored my high BP for years and wound up on dialysis.  Have you considered PD?  It doesn't seem to kick your butt the way hemo does.  I've done both and much prefer PD.

[aharris2]

Welcome Genlando.

We were up in your neck of the woods a little over a month ago for a wedding (near Clemson). It sure was pretty there with all the spring flowers in bloom. They had a "grits bar" at the reception. I was skeptical, being a Yankee, but it turns out that cheese grits with bacon and roasted garlic is a wonderful thing! "We" (actually it was just my brother) dialyzed both coming and going from Tampa, FL just outside of Atlanta.

I hope things get better with your access. Have they tried reversing your lines? i'm sure they have, but I have learned in our 7 1/2 years not to take anything for granted.

Again, welcome to the neighborhood!

[looneytunes]

Hi Genlando and welcome to our zany group.  I have family that live in your area, it's a beautiful city. 

Sorry you are having troubles right now.  Hopefully your perma cath issue will get straightened out soon.   

[cloud393]

I had problems like that with my permacath.  Have they tried changing your position in the chair?  Sometimes I would have to lay on my side to make it work or keep my head turned a certain way.  They would even lay my chair back further than the normal recline position.  I hope things get better for you soon.

[Quickfeet]