I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: paul.karen on October 29, 2008, 12:15:59 PM
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I have a doctors appt. today.
I have been putting it off for a LONG time. I kept rescheduling. Didnt want to hear what he had to say anymore. I mean i look and feel fine.
Last time i saw him he told me on our next visit he would set me up for a fistula operation.
I didnt know what a fistula was. Let alone know i had OPTIONS. I feel i am much more ready to see my Doctor now that i am armed with SO MUCH more info then ever before thx to the people here at IHD> :waving; :clap; :clap;
I am almost hoping he will say i need to start soon. I am no longer in denial. I dont want to start ever. But i know it is gonna happen. And i know i want to go CCPD. Wait till i tell him that LOL.
I am armed with so many question for him my normal 10-15 minute appt. may well turn into an easy hour.
And depending on what he tells me today i may have a million question regarding CCPD tomorrow for people here on CCPD.
In short this little website IHD. Has prepared me much more then any DOCTOR or BOOK or video tape could in a million years.
so a big THANK YOU TO ALL IHD MEMBERS.
This truly is my new home away from home.
P&K
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I wish I had found IHD before Jenna started dialysis - well, it didn't exist yet or maybe I would have! I am glad you feel more prepared and knowledgeable - KNOWLEDGE IS POWER - and the future might be a little bit easier to face knowing there are other patients here who have been in your shoes!
Good luck at your appointment! :cheer:
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I just wish Epoman could hear this. Good Luck at your appointment. :thumbup;
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P&K you are a welcome addition to this website. I know Epoman would have loved you!
:cuddle;
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:flower; P&K. :cuddle;
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Pre-dialysis information is a great tool, but for people who have been on dialysis, this is a great place to come and blow off steam when the Doctors just cant seem to get it right. Many symptoms and solutions found out by people who have been there done that.
P&K, good luck with your dialysis journey :thumbup;
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I hear what you are saying... I owe my smooth initiation to dialysis to IHD, and there weren't even that many members then, but Epoman, LifeOnHold and Rerun's posting particularly helped me to feel prepared. My caring thoughts and prayers are with you all the way. :cuddle;
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Well, what happened at your appointment Paul? ...Boxman
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Well i went in thinking i was all ready to have an operation of some kind to get ready and start my dialysis. I told him about IHD and he was impressed with what i had learned. And glad i ddint cancel again, lol.
he was ready to send me for a fistula appt. When i mentioned i would much prefer to go CCPD. he said that would be fine. But i would first for a week or two learn how to do CAPD. Which i dont mind.
So after having me think the time was here for the last few months he said since i will be going the CCPD route that i shouldnt stress and that i have a few more months before i will need to get the Cath. Since the healing time for that is as he put it one to two weeks compared to several months for the fistual.
But he was mainly happy that i have come to terms with what i will have to face for the longterm.
he gave me numbers for two transplant lists he said i should put my name on now.
I think in reality he tried to scare me into thinking it was going to be sooner then later. To get me in the right mindset. Since he knew i was in denail for he last year or so. So between him and the people here i am ready. But he isnt..
So it is good news. And when he says it is time i am prepared.
P&K
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That's great Paul, I'm glad it went so well. I bet he was impressed with your take charge attitude.
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:beer1;
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This just goes to show how incredibly important education is to the pre-dialysis population. If you hadn't known any better, it seems as though your doctor would have just automatically set you up for in-center hemodialysis without even bothering to mention other possibilites such as CAPD and CCPD.
You are one of the fortunate ones. Imagine all those people out there who haven't received any information on their own. They might never know there are other options until it is too late.
There is definitely something lacking in this country in terms of educating patients prior to starting dialysis.
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Glad your appointment went well, and also that your preparing your self to do what you have to do in the future. Keep as healthy as you can prior - good diet, exercise, prayer and chiropractic keep me going....
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:clap; Glad you're feeling better about the situation.
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Glad to hear your appointment went well. Three Cheers for knowledge.
Sandyb
:bunny:
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What is it with docs sending so many patients to hemo without even telling them they have another option? I've got a coworker whose husband is at the same stage you are, paul, and his doc didn't even mention PD either.
I'm glad this site has helped you, too! I know the information on here has made things so much better for me. This is where I learned about NxStage and home hemo, and where I've gotten much of the information I need about lab tests and diet and so many other things.
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P&K just so you know you just don't call two transplant centers and "sign-up". Go to the transplant section and read all about the Transplant Evaluations etc....
Just trying to help. :waving;
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I thought that seemed kinda easy :o
Will check out that section Thx for the heads up
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I thought that seemed kinda easy :o
Will check out that section Thx for the heads up
First tip..... do not tell the Transplant Coordinator about your pot smoking habbit! :rofl;
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you make me happy :cheer:
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P&K, so glad the appointment went well! Knowledge is power -- that is the battle cry of IHD. When I was diagnosed 3 years ago, the doctor said I would be on dialysis in 6 months. I didn't like that answer, so I went searching and found this great haven. Epoman would have been so thrilled to read this thread. This really was his dream - to help those know the truth and beable to take control. So, keep reading and asking questions. Start contacting the transplant center. The process takes awhile--lots of tests and evaluations, but nothing too bad. When you are listed at one center, it is much easier then to get double listed. The centers will share lots of the tests and you won't have to repeat them. It took me about 8 or 9 months to be activated on the "list". The time varies with centers and when they are able to schedule things. Good luck, you've got us all behind you. :2thumbsup;
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I was supposed to go for a blood test at the transplant center today (the dialysis center won't take blood for them). It was supposed to be fasting..... I got up and had swallowed a bite of Pop Tart and downed a coffee with cream when I remembered. I had to call and tell them I needed to reschedule because I forgot and ate something.
I'm now officially on the SHIT list!! :waving;
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P&K, fear of the unknown is our worst enemy. As several people have posted, "Knowledge is power!" I am so glad you were able to resolve your denial problem. I bet your doc was pleasantly surprised. I hope you are able to put off dialysis for awhile, no matter how you end up getting it. :bestwishes;
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I think that is Sluff's Christmas card photo :waving;
this is in the wrong section----- should be where Sluff is the doctor giving free exams :waving;
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Sounds good to me P&K. Congratulations and good luck.
Mimi
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HI Paul. Good to hear you are now ready. I had my fistula in two years ago and I have been told ever since...next month, next month. Still fending off the inevitable but like you are I am ready to start when I need to. I also had a bad time with accepting it but with the help of the guys from here I am now in the right frame of mind. You wouldn't think I would have been such a pussy when my whole family is riddled with renal disease but still different when it is you in the box seat. Anyhow, I hope you can hold off a bit longer but if not, you thankfully have you head in the right place. xx
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This just goes to show how incredibly important education is to the pre-dialysis population. If you hadn't known any better, it seems as though your doctor would have just automatically set you up for in-center hemodialysis without even bothering to mention other possibilites such as CAPD and CCPD.
You are one of the fortunate ones. Imagine all those people out there who haven't received any information on their own. They might never know there are other options until it is too late.
There is definitely something lacking in this country in terms of educating patients prior to starting dialysis.
You are sooo right, David13! I was not informed of any options by my nephrologist and at that point, I was too sick to do my own research. She never bothered discussing anything about dialysis before I got too sick! So, I got stuck with in-center HD at HER dialysis center (she owned it in part -- wonder if that had any bias on not discussing choices?) Then I was told I MUST get a catheter AND a fistula, which I now feel was such a waste of my arm since I was so close to a transplant. I feel I could have just stuck with the catheter and not ruined my left arm as an access. So now, I'm stuck with a fistula that is not drumming away like it used to and when I have to go on dialysis again, I'm sure I will need a new access site.
Paul, I'm so glad you are able to make informed decisions because of IHD. I too wish I had found this site a lot sooner so I could have made better decisions regarding my care and future care. Best of luck when it is your time to start and I hope everything goes as smoothly as possible.
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I just wish Epoman could hear this. Good Luck at your appointment. :thumbup;
He knows. ;) I firmly believe that.