I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: yajokha75 on December 30, 2011, 01:35:41 AM
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Hello all my name is Moneck (pronounced Monique) and I have been on dialysis for 2 yrs as of 12/11/11. I was a newlywed when first diagnosed with renal failure. It all came on all of a sudden, no warnings what so ever. I cried, screamed, tried to push my husband and kids away because I felt like I was a burden to them. I started out on hemo but my body couldn't take it once they started using my av graft in March 2010. Passing out and very very low blood pressures were things that I had to contend with, and the fact that no matter what preparations I did to reduce the pain from being stuck! I used lidocaine topical and even Gebauer's Ethyl Chloride to freeze my access to no avail. Cramping every treatment had me skipping treatments because I felt like I was handicapped, and I KNEW in my heart that I was screaming at the top of my lungs for help but they couldn't hear me because I had no voice. Lol its funny now because I was a PD patient but by the grace of God I no longer do anything. No I haven't given up either, the Fresenius cycled was the BUSINESS! I started with 8 hr tx, then 4 hr tx for a couple of months, next 1 tx for an hour and a half (manually) a day, and finally nothing at all. I needed this site when I 1st started because of the depression I felt. I read a lot of the posts and I readily identified with most. I want to say thank you for acceptance into this forum.
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My kidneys failed because of glomeurnephritis and a mass on my left kidney that was biopsied. I have been off of pd since 11/24/11 but believe me it was a chore. Maybe its me but I feel that something may happen to me if I stopped doing dialysis. Now my numbers are great albumin, phosporus (i do drink hella Dr. Pepper), potassium is sometimes shaky, pth, and creatinine. I try to follow a strict renal diet and I feel that my kids could benefit from this as well. Has anyone else felt that uneasiness about their dx or tx? (diagnosis and treatments)
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Hi M and welcome to IHD. You are one of the lucky ones. I"m so glad you found us. Best of luck with your freedom. Go live it up.
Rerun, Moderator :yahoo;
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:welcomesign; m
hope fully this new found freedom is a permanent thing :thumbup;
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So I'm not quite sure what you mean with your question about feeling "uneasiness" with dx or tx?
I suppose my answer to that is that medicine is not a precise science in many areas and there are some areas that they know very little about it and it can often be guesswork as much as anything - so one could feel uneasy about that I guess. I would think though that if you trust your renal team and know they have your best interests at heart... well I suppose a word like faith is as good as any. I mean it can be uneasy in terms of what is known and what isn't.. so I get that.
As for transplant - I've been so very gifted to have had mine for just over a year now. I feel uneasy when I think about the chances for rejection or problems that can and may happen. I don't want to dwell on that though - I understand that is always something in the background - but so are complications when on D. I try to concentrate on living life and looking after my gift as best I can (drink more water!!! :) ).
It's great you are in some kind of remission and have recovery of kidney function. That's a wonderful thing. I could def understand being uneasy in that situation, and worryiong about when it may or may not get worse again. I think though, if I were you, I'd want to live as much as I could and make the most of this time without D - you never know what can happen tomorrow..... so, seize the day and live life, and keep on that renal diet and track of your labs... and all the best!! I hope you're off D for a long time!!!
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Hi, yajokha75! Your journey is quite a bit different from what most of us have experienced--not the screaming and crying part, but the blessed remission! I hope you're spending your time enjoying your family and the other things you love most in life. All the best to you.
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Welcome!!
You can look forward to a lot of question about our healing/remission.
K.
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:welcomesign;
Hmmm...no uneasiness about my D treatments - but some of the docs I had prior to starting certainly put me on some questionable treatment plans thinking they would help. I had one throw a fit because I refused to take a bp med that covered all the signs of low blood glucose. She insisted I needed a lower blood pressure. I agreed with that, but figured when I had a low blood sugar crash that I'd had no warning of at all, my blood pressure would be more than low enough when I was dead.
It's hard to find a doc that listens to you - but well worth the effort when you manage to get one!
When you say you think your kids would benefit from a renal diet - does that mean they have PKD as well? Because I don't think that all-white flour, limited fruit and veggie and protein diet is a great idea for anyone with working kidneys!
jbeany, Moderator
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Jbeany, she may have meant the low salt part of the diet. I know my family benefited from it while I was on dialysis as a child. My mother refused to cook or bake with salt. So, unless they added it or it was some kind of prepackaged food that they were eating, there was no salt in it
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Hello Moneck and welcome! :welcomesign;
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:welcomesign;
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:welcomesign; there this is better
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Welcome and so glad you found your way here.. So many different levals of experience, and so much to share. Im one that had a hard time (still do) with diagnosis and the true need for dialysis (in hubbys case that is).. Think i drove some of our members here nuts with my lack of confidence of hubbys 'perscription' of Dialysis. Well, here we are 2 years later, one of them on NxStage, and the other in center, and well, i *guess* i've accepted it is needed. BUT........ i still think that he, like you, may have 'bounced" back but wasnt given the chance to give it a go w/o the big D. Im so happy for you and hope that it will give you the blessed opportunity to educate yourself even more on how to STAY away from more failure of our beloved kidneys. So, welcome to a bit of sanity here, hope you keep sharing with us and get what ya can, and give what ya can :flower;
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Has anyone else felt that uneasiness about their dx or tx? (diagnosis and treatments)
"Uneasiness" doesn't begin to describe how I've felt.
I'm still pre-D, and I don't feel unease about my treatment. But I feel great trepidation about starting dialysis. My mother was on D for five years, and I've seen how ugly it can be.
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Welcome Y75 and greetings for 2012! It is wonderful to hear that things are a little better for you. Just keep doing what your doing to stay off D as long as possible. It is hard on all who have this disease and the caregivers who try to provide support and assistance! Good to hear that you are not doing D now.
Again Welcome & God Bless,
lmunchkin
:kickstart;
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:welcomesign;
Some of my history is below... If you have any questions about anything, please message me on here. :)
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Were you having a bad day?? I looked at your profie, and then at your posts, and your introduction posts, and you had quite a few people respond. Give people a chance.
I will sadly admit that I generally dont respond to introductions, and I know I should. I guess Im too selfish.
That is beside the point. I think you were welcomed. I do envy you for getting off of dialysis. Id do anything to get off of dialysis.
Lisa