I'm Ending Treatment

[Tracy]

Hi, I am so glad you are back.  I feel like I have been holding my breath this whole time. 

I have to take a Tylenol PM each D night.  I have to take an anti depressant to combat the down times.  It is ok.  It is a normal thing I think for a lot of us.  I have an extremely small family and not a lot of support.  I do work full time and that seems to be where I get most of it.

I am so happy to hear that you are trying.  Please don't give up.  You may not think you are worth anything to your family, but here you are worth A LOT!

Tracy

[Gerald Lively]

Beachbum;

The post you are puzzled about was written for someone who was posting on this thread.  Were I to write those thoughts directly to you, the words would be vastly different.  Don’t let it bother you.

Everyone here had the same goal, to save a human being – that being you.  We are most certainly pleased that you came back and began communicating.  The relief everyone has demonstrated shows how much this group shared your emotional burden (catharsis). 

When faced with your original comments, there existed but one means of communication for us readers; talk to you here.  We were limited and were impotent.  Somewhere in the morass of words, I suggested several avenues of action that meant you needed to be in the company of another.   Live life, get out and see what others are doing to live life.  Your bullshit detector probably wouldn’t have accepted anything but obvious honest solutions.

That is step two, assuming you were serious in doing yourself in.  Without step two, we were dead in the water.  You left us to find your own solution and that is, actually, the best course of action for you.  This time.

I am perfectly aware that I am not emotional in such situations and I expected and got criticism for that.  I will say this: when the bad is happening, I am the person you want to be with.  Typically, my emotional reaction comes up days later.  That is why I didn’t mind being shot at during my term in the military, and that is why those several shooters are dead.  My Therapist, yes I have one, says this is a survival mechanism learned from a nasty childhood.  That is merely an explanation.

I wish you well, and you can stop scaring the crap out of us at any time.

gerald

[The Noob]

BeachBum

i am relieved you came back. and i doubt there is anyone here who can NOT relate to all of what you said at one time or another.
i am the care partner and i have those times myself. the crappy family mostly on his side) is as MooseMom told me once, excise them, don't need toxic peeps in our lives, not with what we cope with. surround yourself with those who truly care.

as for clinics, i just called them up and said we want to switch. dh was too ill at that time to do anything but go along and i am glad we did because what we got with the 3rd clinic docs was way better and saved his life.

in the 2+ years i have been told by some that i can be a bi7ch..
well, if i weren't able to do so when needed, dh would probably be gone by now. and in his case, i would not lay him there and wallow. get yer butt up was my motto.
today he feels good doing home hemo. his labs are perfect and he is on a transplant list.
did i fight for him? yep. did i do things for him he could probably do for himself? yep.
today he is doing more and more on his own. but at one point when he was wallowing in the "why me" thing,
i said to him, "why not you?"..and.."we are all here having to deal with this and if i can't lay there and wallow then you can't either".

peeps never having gone through this have no clue. but there is plenty of us who DO..

[billybags]

So you had a good 2 days break from every thing and it sounds like you got your head together, thank goodness for that, you had us all very worried. Beachbum there are going to be times when you get pis** off and depressed. If you can change things, like your clinic , do it. Please keep talking to us, see a canceller, at least now you know you need help. Be good to your self.

[jeannea]

Please make an appt with your good PCP. He can give you advice on the sleep problem and maybe give you antidepressants. Almost all of us are on them. Then if the other clinic needs a referral he can help you. I'm glad you're ok. Dialysis can mess with you.

[amanda100wilson]

I agree with others about switching units.  Just phone them up and find out if they are in network and also,if your nephrologist has admitting rights there.  The latter should not be an issue if your nephrolgist is agreeable to getting admitting rights/privilages there.  Mine wasn't and he did.  All I had to do was sign some paperwork and it was all transferred for me.  With respect to a transplant unit,  You can get on a list anywhere in the country, it does not have to be local, although of course it is logistically and cost wise more complicated.  The sooner you can get on a list, the sooner you can start accruing time.

[cariad]

Referral, schmeferral. I didn't ask anyone's permission to switch clinics. I just phoned up the clinic I wanted to train in, waited till they had an opening and then told my then-current clinic not to expect me on Tuesday. Easy peasy.

That's what I like to hear. (We are so alike it's quite spooky at times.)

You can get on a list anywhere in the country, it does not have to be local, although of course it is logistically and cost wise more complicated.

This is actually not true for everyone. If you only have Medicare/Medicaid or if you are in an HMO, you will probably struggle and may not be able to list outside of your state or outside of your immediate area. When i switched from PPO to HMO - same insurance, same employer, just a different plan - I suddenly needed to get a referral before they would pay for my eval, never mind that they had already paid for one eval and I was only trying to do a time transfer. I had to pay $20 to my GP to 'refer' me to a place that I had already referred myself. They also were not going to let me multiple-list or go out-of-area. They did approve it, but only on a technicality that is not worth getting into.

If your insurance won't cover it or you cannot prove to the transplant hospital that you have the means to get yourself to them on short notice and then stay for several months post-transplant, then they will not list you there. Many insurances will cover any transplant hospital in the country, but not all of them do.

[big777bill]

Glad to have you back BeachBum! You had all of us in a tizzy there for a couple of days.  God Bless you and keep you safe, Bill

[glitter]

I'm glad you're okay. relieved. Thank you for letting us know. 

[CebuShan]

Thank you for letting us know you're getting better! I, too, am on an antidepressant and a non-narcotic sleeping pill. I had never suffered from either until D. Please keep us updated on how you are doing. We may not always have the right words BUT we do care about each other. And that does include YOU!       

[Rerun]

Beachbum.  You SHIT!  I'm so glad you came back to report in.  So glad you took some time to figure stuff out. 

            Here is a kiss.  We all tried to help you in our own way. Some with kind words and some with tough love.

You are always welcome to come here and vent that is what this site is for. 

               

[gothiclovemonkey]

I too am glad ur ok!

Insomnia can cause some serious emotional problems! I hope u can figure that out, i know when i go without sleep I get deeper emotional.

And, one thing said that makes me want to comment, something about not having half the issues, or whatever. One thing ive learned, one persons pain may be someone elses pleasure. What I mean by that, what bothers u may not be that big of a deal to someone else, but its huge to you. No one can understand fully the extent of your pain, because they arent you. When someone asks me if my guages in my ears hurt, i say, they probably would for a normal person, but i dont feel pain like most.... you see what im saying?

[Desert Dancer]

Referral, schmeferral. I didn't ask anyone's permission to switch clinics. I just phoned up the clinic I wanted to train in, waited till they had an opening and then told my then-current clinic not to expect me on Tuesday. Easy peasy.

That's what I like to hear. (We are so alike it's quite spooky at times.)

Heh. Gets you where you need to be in adulthood but doesn't make for a very smooth childhood. If our mothers only knew there were TWO of us in this world, I bet they'd be grateful they each only had ONE of us!

[fearless]

beachbum,

So very very very glad to hear from you.  You generated an outpouring of love that I hope you can feel now.  I'm still pretty new to this site and I'm thinking this is an incredible bunch of people.  So glad to have found all of them and you too, because I can tell from the passion of your anger that you've got a lot to give.

I don't want to do the "who's had it the worst thing" - but I've noticed that a lot of people have spoken about their families, and that is a big source of pain for you too, and i just want you to know that I understand.  There are lots of people in this world who have had brutal childhoods - some physically,, others emotionally, some both.  i think the only thing I can offer is understanding.

I agree with those who talk about insomnia causing thinking problems.  I  was sick for a long time before i started D, and I was hardly sleeping (although exhausted) and I was insane.  I wasn't thinking about killing myself - i thought i could just walk into an alternate plane of existence, and I used to think that was happening as I walked across the parking lot into work each day.  I thought people would see that i was becoming transparent.  I was in the ER a few days later.  You definitely need to find a way to get some sleep!  Even if it requires help from a doc.  Some doc out there somewhere will be the good one for you.  I pray you cross paths soon.  I wish a bright future for you.  Stay here with us!

[JustDee]

Well that was certainly scary.....Beachbum, I'm so glad to hear you are still in this NOT A GAME life.  We may have gotten the sticky end of things but the support and caring that has been spread around during this week makes me think maybe THAT is what life is all about.  I have a 40 year old son with AIDS and Liver Cancer....I have to talk him away from the edge every day....it's when he tells me "Mom, even with the pain I know there is more good then bad in this world" that I feel like giving in to my tears.  We need to be there for each other, give each other a hug or a laugh each day, and show others that we are there for them just as we hope they are there for us.  If there are answers to all our problems and for all situations I did NOT get the memo.  We do that best we can, and what works for one may not work for others....but I sure do believe in LOVE!!!!  Beachbum, you must know that you are truly cared for!!!!

[okarol]

  Good to "see" you again!!

[natnnnat]

Someone posted a link in this thread that scared the daylights out of me. There was another man that may have ended his life by stopping D. Not only did that scare me but in that thread someone else posted about what they experienced after they stopped D for 2 months. I read on the internet that dying from kidney failure was peaceful but what this guy wrote really scared me. He talked of having to sleep sitting up because he gained 40lbs of extra fluid. How his feet started to bleed and fluid leaked out of his legs. He ended up in the ER. It didn't sound peaceful at all.

Oh sh*! That was me.  That was Noahvale's post.  It's a hard read isn't it.  I really really hope I didn't upset you, at the time I just wanted to answer your question.  Oops.

I've been checking in ever since, hoping you were chilling out somewhere.  And you were!  Hooray!!!!!!!!!!!!!
 
Go you good thing, Mr Bum.

[beachbum]

A few of you have given me advice about the sleep problem. I'm at my wits end with my doctors. They won't take it seriously. I can't get anxiety meds through my drs but I did get some through the ER and 30 pills lasted me over 6 months. Clearly I don't have issues with addiction. I only take them on the really bad nights. Lately I've had to resort to borrowing them from friends. I really don't understand how drugs addicts can get pills from drs like they are giving out candy but patients that are legit get the shaft.

Lately my internal clock is all messed up. I get tired during the day but at night my brain won't shut off and I'm wired all night. I stay away from caffeine. I try not to eat late. I do all the right things. Also, my wife has noticed that I stop breathing in my sleep throughout the night when I do sleep. This concerns me because I had an aunt that died in her sleep and they believe it was related to sleep apnea. Even I get scared because I wake up often gasping for air. It happened to me the other night, I jumped out of bed and my heart was racing. it took me a few minutes to catch my breath. My father and my uncle both have severe sleep apnea and are on the machine. I asked my dr to refer me to a sleep specialist and he just blew me off telling me that it's not dangerous. This is why I want out of MGH. The sleep apnea could be contributing to my high blood pressure. I know it's not good for the heart or any other organs.

I can't do a normal exchange at night. Anthing over 1000cc and I feel like I can't breath when I lay down so I stay at 1000 and 2000 the rest of the day.

I'm trying different things to change my clock. I finally slept throughout the night last night and got a good 6 hours of sleep. This is good for me! But again this morning I got real tired and took a nap and slept for another 2 hours. It doesn't help I'm not working right now. For now I will continue to push forward and try to sleep at night. My pattern lately has been little or no sleep for 3 days and then 1 or 2 days where I sleep and then back to the same broken record.

[MooseMom]

By what I've understood, sleep apnea + renal disease = higher risk of heart problems.  I can't believe your doc would blow it off like this.  In my very humble opinion, a referral to a sleep clinic might be the very best thing you could do for yourself.  I really am shocked that any physician would ignore a patient's sleep problems.

Yes, your internal clock does need to be rest, but I don't know how to do that.  I could use some advice in that regard myself.  I've had a rotten cold for a week, and in that time, I have hardly slept at all.  I think I might be hallucinating here....I see lots of little icons leaping about as I type this!  OOOOOh, there's one playing a guitar!  Ooooooh!

[Traveller1947]

With your family history of sleep apnea, you really do need a sleep specialist to sort things out, Tommy.  What doctor wouldn't realize that?  I know you've said you like your PCP,  but you need one who will give you a referral to the doctor who can help you.  As always, wishing you all the best...

[amanda100wilson]

First off, you need a new PCP.  Do you have to get a referral through him or are you in A position to circumvent him and get a self referral to a sleep specialist.  Ypu most definately need a sleep study and your doctor should take it seriously.  My cardiologist insisted on me having a sleep study because of the risks that sleep apnoea places on the heart and also the stroke risk.  Even without your family history, kidney patients are more at risk of sleep apnoea.  This could really be contributing to your insomnia, and your depression.

[boswife]

I just got on the board here and see your here and broke into tears..  You cant emagine the feeling of reliefe and joy in seeing this.  I havent read anyone elses responces yet to your comming back, as i cant read through these tears.  God bless you, keep you safe, and give you peace.., and i will read the rest of the posts real soon,,, Gotta clean up my eyes... Thank you for being brave and comming back to tell.

[sullidog]

I too just came out of a dark hole although I didn't stop treatment, I just ate whatever the hell I want and didn't care, I hate feeling like crap as this did to me so I got some help and now back on the right track. This dark hole also put me on bp meds which I have never had to take for my 2 years of being on dialysis. I regret screwing with my diet, but what's done is done and I can't change it.
Beach bum, I'm glad you didn't end everything, I discovered it's really not worth it.

[fearless]

beachbum, have you made any progress on finding a new doc? 

[RichardMEL]

beachbum I'm a bit late to this party but I am SO glad you are OK and getting back on the treatment bandwagon - with all the ups and downs.

I feel like, or rather I wish I could, edit the subject lineo to make it say "I'm **NOT** Ending Treatment" because I was so pleased to read your post.

It's funny though when I started reading the post about your "clear the head" trip to Maine, and when I got to the part about worrying what you were eating and gaining fluid, I thought to myself "Well this is  clearly a guy who does NOT want to pack it all in!" and I was just so glad!

I know it's not easy and it's a tough road, but I am very happy you are through this dark stage for now.

best wishes!