I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: Dannyboy on May 22, 2011, 05:58:25 PM
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Hello to everyone. I want to say first of all that I am very pleasantly surprised to find this place. While I appreciate the efforts of my family, friends, and medical professionals to help me cope, I am looking forward to benefiting from hanging around here with all of you who have been through the decisions, the emotions, the hopes, the unknowns, the changes, and all of the rest.
I am a newbie in the truest sense of the word....my nephrologist says dialysis is about 4 months away. Been trying to educate myself on 'D' to make an informed choice on method, as I'm told I can choose any available modality at this point. I also have type II Diabetes. I recognize that I have much to learn about kidney disease and treatment. My doctor has also started the paperwork for trying to get me on a transplant list.
Nobody else in my family has/had kidney disease, nor Diabetes. I was very sick beginning as a teenager and for years afterward with Still's Disease (JVRA), with a number of hospitalizations.....the accepted therapy (actually the only thing that "worked" anyway) was massive amounts of Prednisone. I'm told that this likely has had an impact on my kidneys, and the development of diabetes. Emotionally I feel like I need to "blame" something for my renal problems, so that's what I "blame".....
I am married to a wonderful woman who is very supportive.
I doubt it will surprise anyone here that I've had a bit of 'rocky road' facing up to the implications of kidney disease, and all of the coming impacts on my life. I also see that I haven't personally experienced much besides worry and anticipation, unlike most of you who have been dealing with D for years.
When I saw the name of this place on the search engine results, I laughed out loud and knew I should check it out, and I'm glad I did. I look forward to interacting and learning from all of you.
---Dan
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Welcome, Dan.
:waving;
Come back often and enjoy the fellowship and information.
Aleta
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Hi Dannyboy and :welcomesign; to the neighborhood. The people in the neighborhood represent all aspects and phases of ESRD. There are those actively on dialysis for years or for months or weeks, those who have had transplants or are listed, family, friends, caregivers, an occasional healthcare worker, and those like yourself who are predialysis. There is a section devoted to predialysis issues.
There's a lot of great information here and fun stuff too and a nice bunch of people. looking forward to your posts!
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oh my lord I thought this post was from my kidney when I saw the subject!! :rofl; (my transplanted kidney is named Danny).
Anyway welcome to you DannyBoy!
It's great you laughed when you saw the site name and thought you have to check it out - I think that's one of the great things about the name - it's certainly catchy and makes you think "yeah this doesn't look like some boring corporate thing"! I'm glad you liked what you saw and decided to stick around.
Dialysis and ESRD can be very scary, specially when you have little notice, so I'm glad that you have some time to adjust before starting, and we can help too. There's a section for pre-dialysis questions and answers, so that will be great as a resource for you at this point I'm sure.
Hopefully being part of our community will help you as you start down this road, and make it less of a scary unknown and more of a "I can deal with this" situation.
again, welcome to IHD!
RichardMEL, Moderator
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G'day, Dannyboy, and :welcomesign. :ausflag;
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:welcomesign; Dan!
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Hi Dan and welcome to IHD. I'm so glad you found us. The name of this site got me hooked too. I searched "People who hate dialysis" because I knew I could NOT be the only one. AND I wasn't! 8)
Hang in there. I know you are worried and scared about how dialysis will affect your life. That is normal. But, look at all of us who have lived with it for years. You will do fine. But, it is scary and don't disregard what you are feeling.
Keep coming here and reading. It helps.
Rerun, Moderator :welcomesign;
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Welcome Danny....
Hope to see you here often....
Darth...
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Welcome to the group, Dan. Lots of good information and friends here. Glad you found us!
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Thank you all very much for the warm welcome.
@Richard: smiling at your kidney's name...
---Dan
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Welcome Danny boy. Look forward to your input.
lmunchkin :flower;
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Hello DannyBoy and welcome to the gang! :welcomesign;
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Well Danny Boy this is hello from newbie BIG DAN! I also have a 17 year old grandson who is called Danny Boy.
We Danny Boy's have to stick together and encourage one another, We know the situation stinks but what are we going to do about it? So when I saw you're Danny Boy I was hoping we Danny Boy's could be helpful plus up building to one another. What do you think?So So Let me know. God willing I I will see ya again very soon -- BIG DAN = AKA Danny Boy
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:waving; Anyone ever tell you ya look like Charlie Sheen? ;) ;D WINNING!
Welcome! So glad you found the site. You'll love it here!
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Hello, Dan, welcome to the forum . :waving;
From what you say, I am taking it
that Diabetes is one the main components
in connection with your renal failure,
plus Still's Disease and the taking of medication for it.
Whilst these underlying conditons are completely different from my own,
(I suffer from MCTD/Lupus and my kidneys first failed in 1971,
which resulted in a biopsy-diagnosis of chron. proliferative glomerulonephritis
from which I made a recovery to 40% kidney function, and now decades later
I am in ESRF with pre-Dialysis 10-12% GFR, which I have maintained for over two years)
I felt I wanted to write something just in case it may be of help.
Twice nephrologists gave me 6 months before I would go on Dialysis.
But, because of all my underlying conditions I would not probably survive long on Dialysis,
and transplant would be out of the question, I decided to get as good a diet as possible
and give myself every chance to stay away from Dialysis for as long as I can manage.
My weight is the lowest healthy level and though I have a very boring diet,
through this diet I have managed to naturally regulate my salt- and potassium-levels
and I seem to be keeping the wolf from the door
since being diagnosed with ESRF in August 2006.
Of course, my case is completely different form yours,
but I wonder what made your nephrologist sure
you had only four months left until Dialysis?
Have they talked to you about diet
and whether it would make a difference?
Best wishes from Kristina.
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@BigDan: Ok sounds good. Can never have enough "Dans", right? Thanks for the welcome.
@kellyt: Hmmm. Since I am older than Charlie Sheen, I lay claim to being here [on the planet] first.....so I prefer to say that HE looks like ME. LOL. Thank you for the welcome.
@kristina: You make excellent points. Regarding the "4 month" thing, I was told by my Neph that she based that guesstimate on the rate I have been going down hill, so to speak. I was told to choose a modality so I can get scheduled soon for either a PD catheter placement or the hookup for HD.
I even objected to all this "preparation work" reasoning that maybe it would be better for me to keep doing all that I can (diet, excercise, positive thinking, etc), before getting any "pre" work done.....plus, it just seemed a bit like "accepting" the situation instead of fighting it, if that makes any sense..........anyway, the med folks argued that they're concerned I could take a much more rapid turn downward and then be faced with having to be hospitalized and have a temporary access point (in my neck area??) (at least until a fistual or catheter was placed and allowed to heal up).
Your experience of kind of 'hovering' at low level for a long time is interesting to me, because I brought that up, too (I had read of others like you who had "low" numbers).....I asked why not just wait until I get down into the low teens? The answer was, they say outcomes are better if dialysis starts earlier......
I have been in denial about my CKD. (I'm at the wrong end of Stage 4). As far as diet goes, yes nowadays I'm following all the recommendations, salt, phosphorus, potassium etc. I get another round of tests next week, can't wait to see the results.
Plus I've done some intense studying and research, including hanging around here on IHD, so next visit with my Neph will be interesting, too. LOL.
Your experience is a welcome reminder that Nephs or other docs for that matter, don't always know what the future holds, either way.
Thank you, Kristina for your welcome and encouragement.
----Dan
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Glad you joined our community!
:beer1;