Encouragement

[TRB]

Re: Encouragement

Feelinlost, I feel the same way. Suck it up deal with it is what I keep saying. I also think hey my numbers are better so you never know. But ever since the doctor put a date on my disease. I just feel the doom and gloom. I don't want to hi-jack the thread with my worries. I just need more support like reading Glo's post where you can have a successful life be it on dialysis or transplant.

[Feelinlost]

Re: Encouragement

Personally I don't think you're hijacking a thread in the least. This IS a support forum & people like Glo & Angie have helped me in my perspective somewhat but I really fear when the actual time comes (& I've been given a 2 year period)....well I am frightened. I have been told to investigate both dialysis methods & make myself as knowledgeable as possible which leads me to believe maybe the 2 year window is wishful thinking.
If you wish to PM me please feel free, maybe we can help one another.
Take care.

[rsh520]

Re: Encouragement

I am new to this forum as well. I'm a single mom with a teenage CKD. We are doing Home PD and it's been such a struggle. Having a teenager is one thing but, one on PD is a double whammy. He's pretty well know as a non-compliant for the most part. It's been quite a journey for over a year now. Is there anyone that has had a difficult child to deal with on this. It's heartbreaking. There are really no support groups for these kids on dialysis in our area.

[12Bravo]

Re: Encouragement

TRB,

Try and relax. I am in the same boat you are. My numbers are also on the low end, but I still fear the future. It's kinda like a dark cloud has been cast overhead and no matter how much you try and act normal or forget about it, it is always there....looming.

For me it was about a year ago when all this started. My creatinine was 1.6, after a diet change (less protein, not NO protein, just less and more veggies) loosing some weight and controlling my blood pressure, I was able to bring it down to 1.06. Only time will tell on how much further I might bring it down and how long I can keep it stable.

I, like yourself freaked when I was first told. I think everyone kinda goes through the same emotions, disbelief, panic and denial. For me, getting informed helped....somewhat. Some of the stuff you read out there is depressing and not very optimistic. Getting informed helps me help myself. It also helps me help my Doctor. Coming here and a few other message boards helps even more so. There are a ton of really great and articulate people here who have traveled down the road that we might one day have to tread ourselves....who better as a guide, no?

Lastly, the thing that helps most, is having someone close to share your fears with. For me it is my girlfriend ( soon to be wife :-) ). Life is so unpredictable and anything can happen. Now, I am not saying that because of this you are supposed say "Oh, well, what was I so worried about" Worrying is o.k., but there comes a point where you learn to deal with it. Maybe not accept, certainly not be happy with, but....just deal, you know?

Keep on reading. Reach out. There are a lot of great people here.

Best,
Noel

[TRB]

Re: Encouragement

Thanks for the comments. I have family locally but have failed to find the right woman at this time. I'm trying to gain the strength to look beyond today but it is tough. I did see my PCP today and he stated this to me. You can control your BP, weight and diabetes so worry about those things. If my kidneys decide to stop than you did all you could to prevent it.

[jeffmoore]

Re: Encouragement

Thanks for the comments. I have family locally but have failed to find the right woman at this time. I'm trying to gain the strength to look beyond today but it is tough. I did see my PCP today and he stated this to me. You can control your BP, weight and diabetes so worry about those things. If my kidneys decide to stop than you did all you could to prevent it.

Reading all you guys post, I truly understand why you have so much uncertainity, where this thing called dialysis is concerned, but like I have said in previous post, you guys are truly fortunate to have this thing created called early stages of chronic kidney disease. I, Angie, and many others on this post, who started dialysis some decades ago, didn't have the luxury of a monitoring stage and GFR, a lingo that wasn't even in our (dialysis pts.) vocabulary, but I have learned a great deal from my siblings, one started dialysis two years ago, and she stayed steady at stage 4, for several years, and one day it just progressed to stage 5, (full blown end stage renal disease), and now I have another sister that has been at stage 4, for a couple of year, but this past December, she had our access placed for a possible start for dialysis in several months. Back in the day, well anyway during my time (1990), you were just told that you had end stage renal disease, and prior to that time, I was having ungoing kidney infections, which resulted to the decision of starting dialysis ASAP. Now, LIke I said, I know you guys have these concerns, but it is not the end of the world, if it results to dialysis, it could only be for a short period of time, and you receive the blessing of a kidney in a matter of months. But, in my opinion, having the experience of dialysis, even for a short time, could truly be beneficial, because a transplant isn't a guarantee that it will last you to the end of your life. Many of us, have had transplants, like myself, in the past, and it failed after so many years, or even months, and we had to return to dialysis, or even start an actual dialysis, because we might have gotten one before we had to start a treatment, and never knew what to expect with dialysls. I have always lived by my moms words, Even if you have pain that you think you can't bare, just remember you will never suffer as much as jesus did. Don't Let This Disease Control You, You Control The Disease. That is the main reason why I decided to write this book, to share my experience and knowledge, that could be very beneficial to fellow dialysis pts, as well as pending dialysis pts.

Glo

[TRB]

Re: Encouragement

Thanks Glo, the thoughts of those that have already dealt with a lot of the emotions we are going through does help clam my nerves. For me I need to stop reading the statistics as those can be a real downer if you look at things through statistical eyes.

[ddarling]

Re: Encouragement

[QUOTE=12Bravo;30368]TRB,

It's kinda like a dark cloud has been cast overhead and no matter how much you try and act normal or forget about it, it is always there....looming.


TRB, you are not hijacking the thread, and Bravo, your above statement pretty much says it all.

I am also 45 yrs. old and feel like I am much too young for this to have happened. I was counting on a long, happy and healthy life. Just knowing you have a life-long illness or disease really seems to do something to you mentally. You tell yourself your going to beat this, you tell yourself you're not going to let it get to you, etc. But if we are all honest, it DOES get to us. It's just like Bravo said...it's always there in your mind...looming! I want it all to go away. I want my old life and my old self back. I do not like this new person I have become because of my CKD and PAD.

I too am trying to control my blood pressure through my meds and consuming less salt. I do sometimes worry about what all the stress from being unemployed (company was sold, lost my job) does to my blood pressure as well as my fears of losing my home, possible dialysis, and sometimes just the 'tears' of all of it.

Just want you guys to know that you are NOT alone in how you are feeling or what you are thinking.

[rocrthom]

Re: Encouragement

I first went on dialysis when I was 21. I was on it for 2.5 years.I got a transplant. It lasted almost nine years. I have been back on dialysis now for one month. I am so depressed. I never expected to be doing this again. I was never this down in the dumps the first time I was on dialysis. I tell myself that I'm only 32, I'm not going to let this get me down, but truthfully it's there, lingering. Do you guys think going to counseling would help?

[jeffmoore]

Re: Encouragement

I first went on dialysis when I was 21. I was on it for 2.5 years.I got a transplant. It lasted almost nine years. I have been back on dialysis now for one month. I am so depressed. I never expected to be doing this again. I was never this down in the dumps the first time I was on dialysis. I tell myself that I'm only 32, I'm not going to let this get me down, but truthfully it's there, lingering. Do you guys think going to counseling would help?

Rocrthom,
Although every one is different as to how they emotionally and mentally deal with dialysis, the hardest task of living on dialysis, is being able to cope with it, and most importantly accept this part of your life. Even though you have been on dialysis before, what exactly is depressing you? You still have to manage your end stage renal disease, with the assistance of medication, treatment and of course that very complex renal diet. Is it the renal diet, that you had to go back to, causing you to become depress, or is it just the dialysis treatment itself. I know with the economy the way it is, that seeing someone professionally would not be economical for most of us, so if nothing else is getting you out of your depression, then maybe you should see someone professionally. Having someone really close and supportive can help to, but as I am aware a lot of the patients may not be fortunate to have someone like that, is that in your case? I hope you can find some peace with this real soon.

Love in God
Glo

[angieskidney]

Re: Encouragement

I first went on dialysis when I was 21. I was on it for 2.5 years.I got a transplant. It lasted almost nine years. I have been back on dialysis now for one month. I am so depressed. I never expected to be doing this again. I was never this down in the dumps the first time I was on dialysis. I tell myself that I'm only 32, I'm not going to let this get me down, but truthfully it's there, lingering. Do you guys think going to counseling would help?

Sounds like you should give the HopeLine a call. They are toll-free within the USA and are there exactly for such a time as this.

If you would like to learn more they are through the Renal Support Network based in California and their toll-free number is:

HOPEline (800) 579-1970

Here is their site on this so that you can read more about it and decide.

http://www.rsnhope.org/programs/HopeLine.php

I personally know one of the girls who work the HopeLine and finally got to call (my fiance got me MagicJack so now I got an American number finally) and it really was helpful! And you sound in more need of it than I am. I am a transplant recipient and even I felt I needed them.

But I can relate to what you are going through. I was first on dialysis when I was 16 and it lasted 11 years and then at 27 I had to go back on dialysis. It can be a depressing time and one that you can't go through a line. But don't worry there is Hope and you are NOT alone.

[4mymom]

Re: Encouragement

Hi I am brand new to this forum and my mom was diagnosed with stage 5 renal failure in october of 2009. we new it was coming. well something was wrong she let her health and diabeties and high blood pressure go due to my father's death of lung cancer 8 years ago. she is now on dialysis and we just started the process for a kidney transplant. she is scared and myself and my sister are planning to see if we are matches. she doesn't have anyone to truley talk to w/out them getting upset. what can you tell me?

thanks for any and all info from all. god bless

4mymom

[annie]

Re: Encouragement

Hi I am brand new to this forum and my mom was diagnosed with stage 5 renal failure in october of 2009. we new it was coming. well something was wrong she let her health and diabeties and high blood pressure go due to my father's death of lung cancer 8 years ago. she is now on dialysis and we just started the process for a kidney transplant. she is scared and myself and my sister are planning to see if we are matches. she doesn't have anyone to truley talk to w/out them getting upset. what can you tell me?

thanks for any and all info from all. god bless

4mymom

Hi there.

Welcome to the forum!

Find a therapist for your mom. Preferably one with experience with chronic health issues. Her nephrologist/dialysis nurse may have some references for you.

If she needs someone to talk to, a counselor/therapist could be a wonderful addition to her health care team.

As far as what to tell you, I am unsure what you would like to know.

If you have specific questions, post them to the boards here and the wonderful community will certainly help you.

Again, welcome.

[patty0805]

Re: Encouragement

Hi TRB, FYI, my GFR went from 13 (dialysis started then) to 26 now :-) so, don't be discouraged with the numbers, they can change. (but not if you're on Hemo) PD gives your kidneys a chance to improve. I was at 4 exchanges a day, now I do only 2. I truly think diet is key. I have become diabetic but keep it under control with just 1 pill a day and diet. another plus, my BP is doing so well, I don't take anything for it anymore.

[angieskidney]

Re: Encouragement

Hi I am brand new to this forum and my mom was diagnosed with stage 5 renal failure in october of 2009. we new it was coming. well something was wrong she let her health and diabeties and high blood pressure go due to my father's death of lung cancer 8 years ago. she is now on dialysis and we just started the process for a kidney transplant. she is scared and myself and my sister are planning to see if we are matches. she doesn't have anyone to truley talk to w/out them getting upset. what can you tell me?

thanks for any and all info from all. god bless

4mymom

I was going to suggest www.kidneyschool.org but are you asking for information on what to expect with transplant?