I'm Ending Treatment

[RichardMEL]

GL - thank you for the compliment regarding my signature...

 

[rocker]

Well, I've read the entire thread as well, and avoided commenting, but I haven't seen anyone else say this, so I will.

His comments read like a drug reaction to me.

I've been through a lot with DH, and he's been on and off some very weird drugs.  And there have been times when he started a new drug that he would become angry and abusive out of proportion to whatever situation was occurring.  And heaven forbid I suggest at the time that he was reacting to the new med - when I tried that once or twice, he calmly explained to me how it had nothing to do with the drugs - everything he was saying was perfectly true and logical and he was only saying it because I suck so badly in ways he would carefully enumerate to me.

I'll tell ya, once or twice it nearly had an effect on his lifespan.

I've asked him about these conversations a few months later, and he's never remembered them.  And once or twice he's said things like "Wow, if I actually did say that, I'm sorry.  But I don't remember anything like that."

So, just sayin', while everyone's here psychoanalyzing him, it might not be "him" talking at all.  It could be the chemicals you were chatting with.

  - rocker

[kristina]

Very interesting thoughts about drug reaction & drug intolerance, rocker.

I do hope Tommy is getting help and support
to locate a helpful transplant centre and continue the transplant process.

I keep my fingers crossed and wish him good luck,

Kristina. 

[Whamo]

Beachbum,  I hope you haven't given up on yourself.  I know things look hopeless.  But there is hope.  In every good story there is a moment we storytellers call "Apparent Death" or the dark moment.  It looks like curtains for the hero.  But then things turn around, or what we call a reversal.  The hero figures out a clever way to kill the beast.  Sure, you might lose the battle, but if you fight, you might win, so give it a go.  If you give up you don't have a chance.  Fight your depression, and win, and at the end I'll buy you a root beer.   

[beachbum]

Just wanted to update my status real quick. I haven't been online in a little over a week. I haven't even looked at the posts here but I see that its 6 pages long so I owe you guys an update.

I did stop D for a couple of days. Nothing really happened. I actually feel better when I'm not doing exchanges. I took a long drive to Maine. It was nice not having to worry about doing an exchange every 4 hours or so but it sucked to have to worry so much about what I could and couldn't eat. I still produce urine so I didn't gain a lot of fluid. I actually think i lost some weight because the treatments have caused me to gain almost 15lbs.

A friend of mine is visting Boston and attending the Sweet 16 at the Boston Garden in March. I have his tickets and was worried about making sure he got his tickets. I explained to him what was going on. He had no idea about me being on PD. I don't tell a lot of people anymore. In a strange twist he wrote me back and told me his dad is on PD and that he had just started almost at the exact same time I did. It was one of those moments that made me think.

Bottom line is I really lost it for a few days. But like anything in life if you are really going to get through it you have to accept the circumstances. I'm still pissed at MGH. I have a great PCP that I don't want to lose but everyone else sucks. I know how much these treatments cost my insurance and I don't want to give MGH another dime! There are several hospitals in the area so i'm going to see about starting the process over with one of them. I have no idea how to go about it. Like do I walk into their PD clinic and say, "Hey I want to be a patient here." The entire thing is still overwhelming. I'm looking into some counseling to help me deal with everything. All I can do at this point is take everything one day at a time.

I can't say I won't fall into this dark hole again. But I'm going to do everything I can to take back control of my life. At least do what I can.

[Traveller1947]

You have no idea what a relief it is to hear from you, Tommy!  One day at a time, sometimes, one minute at a time...all of us here will try to give you support the best way we know how, each according to his/her temperament and experience.  So glad you're back and wishing you all the best!

[beachbum]

The very nature of catharsis is to share the burden with someone.  Beachbum was seemed to be seeking some way to unload his burden.  What has engaged me is that beachbum’s experience is not that much different than just about any other member here.  I offered words of support and help but he disappeared.  Absent the establishment of a trust, I have no emotional obligation to him – nor do I wish to share his burden.

Personally, I see the exercise of focusing on ones burden as depressing in and of itself.  Life is to live and that is exactly what I told Mr. Beachbum.  Sitting here and reading posts on this forum is uniquely depressing, and in doing that I am reading about other individuals problems, which is cathartic for them.  That is why people post here.

Listen, I am going to die someday, probably soon.  So are all of you.  In my case it is likely to be a result of something related to kidney failure.  I wish to learn more, so I seek out the educational aspects of various threads.  In that way I can ease the emotional strain I do undertake.  In Mr. Beachbum’s case; different strokes for different folks. If he were emotionally stronger, he would not have written what he did. 

Who is responsible for contributing to his character makeup?

gerald

I'm not sure how I'm supposed to take your post. To answer your question though, I am responsible for my character makeup. But do you know my character just from a few posts you have read here?

I regret posting here in the first place. But if you want to know why I did I think there are two main reasons. In my personal life I only have one "friend" that is also a kidney patient. I just recently met him and he has his own things going on right now. He just received his second kidney last month and not everything has gone as smoothly as everyone had hoped. I don't want to bombard him with my problems. I posted here because maybe someone else could relate and because I really wanted to know what would happen if I stopped D. My own doctors refuse to give me any advice on the subject.

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.

You are right, we are all going to die. That we all have in common. Some of us will have to suffer, while some of us will die fast and peaceful. I'm not going to put myself through dying from kidney failure. At least not if I can help it. I know what it's like to be sick as hell. When I was 8 years old I was nearly put on D because my kidney had shut down. Thank God they were able to restore most of its function at the time.

I appologize for scaring anyone. That wasn't my intention. I really didn't come back here because I just needed time to think. I didn't even think I mattered to anyone. The fact that total stranger care at all about me is overwhelming to me. My own family could careless if I live or die. That's just the cards I was dealt. They are horrible people. I can't relate to most people here. I'm honestly a big wimp. I haven't went through a fraction of what most of you have been through medically. For that I am very lucky. I hate needles and medical stuff. Nothing scares me more. I was born to a really screwed up family. The stuff they put in my head growing up is stuff I can never over completely. They are heartless and cold. In the end it's all relative. We are all lucky in some ways and unlucky in some ways. We all suffer in different ways. I just have to figure out how to heal emotionally. I haven't figured it out in 38 years. I avoided it most of my life. I always ran from my problems. I can't run anymore. If I could I would.

I don't know if any of that made any sense. I didn't sleep well last night. That's another thing that plagues me. I get really bad insomnia where I don't sleep for days and then I start losing it. I just breakdown. Anyone that suffered from lack of sleep understands. At this point I'm just loopy. Hopefully I will sleep tonight before I start to get overwhelmed again. And the cycle repeats... Welcome to my life.

[Pam]

I don't post in these kinds of threads. I don't have communication skills a lot of people do. But I wanted to let you know I am glad you are trying to sort things out.Enjoy the sunrise, relax at sunset and hopefully tomorrow Will be a better day.
Pa,

[Riverwhispering]

Beachbum glad you're back with us.  Of course I don't know you from Adam but I feel your pain in many ways and my heart is with you.   Yes you did scare the heck out of me but I learned a great lesson in life from this thread.

take care and post often 

[Deanne]

Welcome back Beachbum! I'm glad to see you. 

[kevinswife]

Beachbum,

Welcome back!    If I could hug you right now, I would!    

I've been thinking about you and checking back here every day to see if you posted.  I'm glad you are still with us!

Thank you for posting.

Best wishes,
Kevin's Wife 

[kristina]

Thanks for posting, Tommy, I am so glad you are still with us !

I keep my fingers crossed and hope you have good luck with a helpful transplant centre.

Best wishes from Kristina. 
 

[amanda100wilson]

I am so glad that you didn't do anything drastic.  I know what you mean by a dysfunctional family.  My mom is someone who everything is about her.  When I was three years old she attempted suicide, and the ironical part is that she needed dialysis to save her.  When I got ill I thought that it may jolt her into reality that all was not bad in her own life.  No.  Instead she harped on about how she was happy until I got ill.  Really?  I still interact with her, shes's my mom and life is too short anyway, to cut myself off from her.  She's 70 now, so not so young and I would feel bad if she died and I was estranged from her.  The point that I am trying to make is, could you try building bridges with your family?  Try not to expect much from them, no-one who isn't going through this personally doesn't truly understand.  Direct family members living with someone on dialysis probably have the most understanding but at the end od the day, even they are not in the skin of someone who is on dialysis.  Would be great if we could swap bodies with a healthy person for a while just to give them a taste of the reality of what we have to deal with, but hey, I'm not sure that I would want to give that body back at the end of the day.   

[Katonsdad]

You know,,,, just glad to see ya !!!

[Desert Dancer]

Oh, Tommy, I am SO relieved you are okay. We've all been really worried about you. I've been checking in every five minutes to see if you've posted. This just made my day.

Nothing gets your head together like a nice long road trip. I'm so glad you gave yourself some space to think.

I know what you mean about family. I don't have anyone but Andy, myself. Seems like a lot of us here are in the same boat that way; you'll definitely get understanding on that point.

I also know what you mean about sleep. Just a few months of insomnia can make you crazy. Have you tried melatonin? It worked for me, at least most of the time.

[cariad]

Welcome back!

Ah, MGH. Say no more. That is the hospital that dangled a transplant in front of me and then told me to eff off. (Not really, but it felt that way.) Then the same thing happened to me AGAIN at another center a year later, and I had the exact same reaction as you - I was ready to be done and refuse all treatment. I did not share that with IHD, but did talk to my husband who wanted to go down to the second hospital and confront the surgeon. I told him he couldn't do that since one of us needed to stay alive and out of prison for our kids. Anyhow, like you are discovering, if you can get through the initial crisis, things do have a way of sorting out.

I know nothing about switching dialysis clinics but that seems to require a nephrologist's referral. Actually, our member Paul apparently did walk into a clinic and say he wanted dialysis and the clinic said no one had ever done that before and they all had a laugh about it for years. Sounds like it worked fine for him.

As for switching hospitals, did you read cuteangrylittlemuppet's story on this thread? It sounds like she might be able to help you find a hospital with some humanity as she lives in your area. It will depend on your insurance, but for the most part, with transplant centers you do just call them up and say you want to be evaluated for a transplant. If there is something they require from you, like records, get those together and send them on. I would not worry about what your records say. Although, I requested all of my records to come to me, then withheld anything I did not think the transplant hospital needed to know. It really depends on your records how obvious it would be to them that you are keeping something from them.

Good luck and thanks for updating. It's great to hear you are in a better place.

[YLGuy]

Great to see you back!  When I switched centers that is exactly what I did.  I just walked into the center and asked if I could switch to that unit.  It just so happen that my neph also serviced that center.  If he did not they said I would of had to change my neph. 

[wj13us]

Beachbum glad you okay.  If I read you post correctly you basically worked out your problem youself.

This thread kind of reminds me of the Woody Allen movie Annie Hall.  Woody Allen (Arny) and Annie is standing in line for a movie and the guy behind his is going on on about the director (I forget his name).  He's taking about the director's work and what he meant by this movie and that movie.  Finally Woody Allen gets sick of it and tells the guy he doesn't know what he's talking about.  The guy goes on about what an expert on this director and he even teaches a class about his work.  The guy says if the director were here he set the director straight.  So Woody says I happen to have right here.  The actual director comes over had tells the guy "You don't know nothing of my work.  And how you got to teach a class in anything I'll never know.

Bill

[willowtreewren]

 

Thank you, thank you for posting! I, too, have been worried about you.

Despite my current optimistic nature, there was a very dark time in my life that I now know was related to the meds I was taking. Each day was a struggle to keep thoughts of suicide at bay. This lasted for nearly two years and I often wonder how I survived that period. Now that I know how susceptible I am to medications, I watch carefully for any mental changes when I start something new. I can say almost certainly that I would not be here today if it weren't for a loving and understanding husband.

Tommy, I hope that you can work through this....where there is life there is still hope for things to get better.

 

Aleta

[Poppylicious]

Hey beachbum, loving that you came back to us! 

*huggles*

(And for what it's worth, I don't think you're a wimp.)

[plugger]

Jesus!  You don't know how happy we are to see you again!  I can relate to the insomnia, I go through bouts too.  The last one was about a week before the last state hearing we did here in Colorado.  My mind was racing and I would either not sleep at night or wake up in middle night thinking about things - so when you mentioned loopy, yeah that describes it.

What broke the dam for me was remembering a post from years ago and the words: "My Angel got her wings".  It was from the parent of dead child.  I would like to say it was primal scream therapy after that, but no, I cried like a baby.  - but boy did I sleep the next night.

[flipperfun]

This thread has really got to me, I cried whilst reading a lot of the comments.  Like everyone here I am relieved and happy to see you are back with us Tommy. Take one day at a time and don't forget you DO have friends on IHD.

Denise

[MooseMom]

Beachbum, first and foremost, like everyone else here, I'm glad you are OK.  It was very thoughtful of you to return to IHD to let us know how you are faring.

I'd like to say a couple of things about insomnia.  Several years ago for some reason that I have yet to ascertain, I endured a week of insomnia, and it was hell.  I remember sitting on the side of the bed in the middle of the night, sobbing, with my husband standing next to me, unable to do anything more than pat my head.  I don't know what caused it nor what ended it, but I'll never forget it.

Decades ago, my husband had a cousin who was a physician.  He was diagnosed with a malignant, inoperable brain tumor.  Being a doctor, he knew exactly what was in store for him, and he had a breakdown.  He gave his partner permission to commit him to a mental facility, and the very first thing they did was to re-establish a normal sleep pattern.  I assume they did this with drugs, I don't know.  But my point is that insomnia and/or an irregular sleeping pattern really can drive you crazy.  In my very humble opinion, this is an issue you need to immediately address with your doctor, if you haven't already.  When you are exhausted, life is very, very dark.

Since you predict that you may well have another such dark period, I hope that next time, you will again come to IHD and let us give you what imperfect support we can offer.  I regret that YOU regret posting here in the first place, but I hope you will step back and recognize that there were a LOT of people who jumped to assist you, even if it was just to read what you had to say.  Apart from a few members who have remarked that they are trained in this sort of thing, we, like you, are just muddling along, trying to cope with a horrible disease.  We are here to at least TRY to support each other, and I hope that you see this.  If we do not always have the perfect words or if our magic wands are not working that day, I hope you will forgive us.  We do care, otherwise we would not bother trying to tackle such a difficult and personal dilemma.

A lot of IHD members seem to have really crappy families, and I've noticed that this puts these members at a distinct disadvantage.  My own husband's family are snivelling cowards, and he doesn't have ESRD, yet I can see the damage done to him all these years later.  I'm so sorry that your family has been so awful, but perhaps we can be a sort of cyberfamily for you from time to time, as you need us.

[Desert Dancer]

I know nothing about switching dialysis clinics but that seems to require a nephrologist's referral. Actually, our member Paul apparently did walk into a clinic and say he wanted dialysis and the clinic said no one had ever done that before and they all had a laugh about it for years. Sounds like it worked fine for him.

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.

[lmunchkin]

You have no idea how glad we are to hear from you!  Thank God and Bless you for posting that you are still amoung us! So very glad to see your post, Tommy!

God Bless,
lmunchkin