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Author Topic: Good day and bad day all at once.  (Read 3418 times)
Adam_W
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Me with Baron von Fresenius

« on: April 17, 2007, 03:43:46 PM »

My tech was AWESOME today. I was telling her about my emotional breakdown last Thursday (she wasn't there that day), and what caused it. She just looked at me and told me that she is going to do whatever she can to get me the authorization to do self-care at this centre. She talked to the unit manager and was told that she (the UM) could allow me to do almost everything except administering my own meds (including heparin). I actually took myself off the machine for the first time today. My tech said that if there is any resistance from the company regarding my self-care, she will go straight to the company president if she has to. She (and the rest of my centre staff) realize very clearly that this is MY health, and MY treatment, and it should be done MY way. The level of support and understanding by my staff, particularly my tech for today, is unequaled by most. The bad thing that happened today was the worst "crash" that I've ever had on the machine. I had just stood after taking myself off to take my final standing blood pressure, and I suddenly felt VERY dizzy. I started to collapse back in my chair, and the next thing I knew, my tech was reattaching one of my bloodlines to my permacath to pump me full of saline from the machine's saline bag. For the first time ever, I had actually lost consciousness. I was only out for less than a minute, but I had to have about half a kilo of saline pumped into me, and I had to sit/lay there for almost another hour before I was able to walk without fainting again. Despite what happened after I came off the machine, I had probably my best day. I wish I could say I won't have anymore emotional trauma, but I can't. I just take the good days when I can get them. Take care.

Adam
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-Diagnosed with ESRD (born with one kidney, hypertension killed it) Jan 21st, 2007
-Started dialysis four days later in hospital (Baxter 1550-I think, then Gambro Phoenix)
-Started in-centre dialysis Feb 6th 2007 (Fres. 2008H)
-Started home hemo June 5th 2007 (NxStage/Pureflow)
-PD catheter placed June 6th 2008 (Bye bye NxStage, at least for now)
-Started CAPD July 4th, 2008
-PD catheter removed Dec 2, 2008-PD just wouldn't work, so I'm back on NxStage
-Kidney function improved enough to go off dialysis, Feb. 2011!!!!!
-Back on dialysis (still NxStage) July 2011 :(
-In-centre self-care dialysis March 2012 (Fresenius 2008K)
-Not on transplant list yet.


"Don't live for dialysis, use dialysis to LIVE"
goofynina
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He is the love of my life......

« Reply #1 on: April 17, 2007, 04:46:35 PM »

Adam, are you prepared in case something like that happens to you when you are doing home hemo?   You just make sure it is time buddy, i'd hate for something bad to happen.  I know YOU are so ready to get the hell out of there and be on your own, but please make sure they are ready to give you the proper training and not rushing anything just to get you "out of the way"  this is YOUR life and you want to keep it as long as you can i am sure, just be a little patient, but a friendly reminder now and then wouldn't hurt,  just my  :twocents;  Take care buddy, i know it must've been a scary experience for you today cuz i got scared when i read it,  just letting you know we worry about you amigo  :cuddle;
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....and i think to myself, what a wonderful world....

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Duane
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« Reply #2 on: April 20, 2007, 07:38:20 PM »

Adam
I've been on dialysis since Nov 06, I have a fistula installed at my wrist. You took it upon yourself to read the book and learn all about the machine early on and that's a good thing.

Guess I'll get a manual for me to read.

Centers are suppose to train each patient on the basics like how to disconnect the machine in an emergency or power failure.

Still early in the game for you to take charge like that, so be careful.

Getting dizzy and fainting spells are partly due to taking to much out at one time or (being on to long) and your blood pressure goes down not giving enough oxygen/blood to the brain

Adam you have a lot going on with you like i do and many others and right now is not a good time for you to take charge on your dialysis treatment the way you want to.

Your Social Worker is trained to assist you on personal issues that would interfere with your dialysis treatment being a success and your emotional state of being with you and your family.

It's good to know all of what you're learning and i compliment you on that, let them do there job and at least for the first year don't make any major decisions about home dialysis, the truth of the matter is Adam, you're not ready for home dialysis. You'll have the emergency squad there every week.

So slow down my friend and enjoy the ride and seek other professional help from your Social Worker, because the SW can refer you to a specialist on the emotional side (depression).

Sometimes the answer to my prayers comes from advise of others and it's up to me to recieve it.
I've learned the Love of God for me right where I am inspite of all the pain that's around me. I no longer say "Why Me God". Now I say "Send Me Lord". But that's what works for me.

I used to be angry at God about my family and life, then i started getting answer to pray and learning more about him and his love for me and everyone else so if knowone told you they love you today, then I'll say it. I Love you Adam like God our Father Loves you.
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1 Corinthians 9:24  In a race, everyone runs but only one person gets first prize. So run your race to win.
jbeany
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Cattitude

« Reply #3 on: April 25, 2007, 01:10:21 PM »

Duane,

I'm sorry, but I don't agree.  To me, Adam seems like a perfect candidate for home dialysis.  He's feeling depressed because of the lack of control he's got over his life.  Taking charge and doing home dialysis would be a wonderful way to help that.  Waiting for a year will not help him regain a sense of control.  Duane, you stated in another post that you feel "chicken" about the needles and don't feel capable of doing home dialysis.  That's fine for you - it's not what Adam needs.

Adam,
I've been blessed with a center that helps me do as much as I can, and are more than happy to answer my questions and teach me about the machine I'm on.  It's been important to me to learn what I can so that dialysis is something I'm choosing to do, and not just something that is being done to me.  Don't let anyone stop you from getting what you want to make the most of your life on dialysis!
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"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.

Rerun
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Going through life tied to a chair!

« Reply #4 on: April 25, 2007, 08:18:23 PM »

The way I read it.... he is seeking self care in center.  Not home dialysis.  Maybe I'm wrong. 

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Sluff
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« Reply #5 on: April 25, 2007, 08:52:29 PM »

All I can say is hang in there Adam...It is good that even after that experience you came out of it with something  positive.
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Adam_W
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Me with Baron von Fresenius

« Reply #6 on: April 26, 2007, 06:00:21 AM »

The way I read it.... he is seeking self care in center.  Not home dialysis.  Maybe I'm wrong. 



My ultimate goal is home hemo, but I'm trying to get in-centre self-care while I wait to start training for home dialysis.

Adam
Logged

-Diagnosed with ESRD (born with one kidney, hypertension killed it) Jan 21st, 2007
-Started dialysis four days later in hospital (Baxter 1550-I think, then Gambro Phoenix)
-Started in-centre dialysis Feb 6th 2007 (Fres. 2008H)
-Started home hemo June 5th 2007 (NxStage/Pureflow)
-PD catheter placed June 6th 2008 (Bye bye NxStage, at least for now)
-Started CAPD July 4th, 2008
-PD catheter removed Dec 2, 2008-PD just wouldn't work, so I'm back on NxStage
-Kidney function improved enough to go off dialysis, Feb. 2011!!!!!
-Back on dialysis (still NxStage) July 2011 :(
-In-centre self-care dialysis March 2012 (Fresenius 2008K)
-Not on transplant list yet.


"Don't live for dialysis, use dialysis to LIVE"
Duane
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« Reply #7 on: April 26, 2007, 06:55:44 AM »

Duane,

I'm sorry, but I don't agree.  To me, Adam seems like a perfect candidate for home dialysis.  He's feeling depressed because of the lack of control he's got over his life.  Taking charge and doing home dialysis would be a wonderful way to help that.  Waiting for a year will not help him regain a sense of control.  Duane, you stated in another post that you feel "chicken" about the needles and don't feel capable of doing home dialysis.  That's fine for you - it's not what Adam

You're right i agree after giving my post much thought. Adam i admire your drive and you are on the right path. I've learned from your posts and concerns all ready, you are an inspiration to me. Chicken little Duane will eventually get there. Thanks to you Adam, i'm requesting a manual on my machine so i can get to know it like you have.
I'm not a fan of home dialysis yet, i need the company for now 3 times a wk. :popcorn; Being around all these nice women for four hours three times a week caring for me, smiling at me, watching there hair change on a daily basis and make-up, boy i'm getting excited again :clap;
Can't wait for the next treatment to see those pretty faces just waiting to help me. :cuddle;




EDITED: Removed picture - Sluff/ Admin
« Last Edit: April 27, 2007, 05:10:28 AM by Sluff » Logged

1 Corinthians 9:24  In a race, everyone runs but only one person gets first prize. So run your race to win.
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