A New Year and Decisions to Make

[drgirlfriend]

Hey Y'all!

I hope everyone is having a lovely holiday season! Mine has been busy but I can't really say happy. Word to the wise - never try to fly standby the weekend before Christmas. Just sayin'.

As some of you know my boyfriend was diagnosed with ESRD almost 2 years ago. We have been thru catheter surgery, manual pd, moving 3 times, and Liberty cycler. He is young (28) and very high strung. I kindly describe him as OCD, especially when it comes to his exchanges. We have also been thru worries about dialysate bags which led to marathon hook up sessions every night for over a month.

Our relationship certainly had its problems from the beginning (age difference, I moved away from my support system, problems finding work, depression) and I was aware of that. I thought I knew how to deal. However, dialysis has made so many things that much worse. I recently realized that every night when he goes to hook up, my stress level goes through the roof. I'm just waiting for something to go wrong (something wrong with the supplies, him even suspecting something is wrong with the supplies, him messing something up and having to start over, etc) and him to have a hissy fit (stomp around, throw things, slam doors, swear). Every night I sit praying that things will go smoothly cause I don't know how much more I can stand. I just want to go to bed at a reasonable time and without drama. Thank God I don't have a job because I never know how much sleep I'm going to get each night.

He has been doing cycler for a year now. I thought it would be old hat by now. Does anyone else have these kinds of problems? Do things get better? Is his lack of emotional maturity the real problem? Do I just need to leave? I'm really burnt out. He acts like any possible happiness or ability to be thankful for anything is on hold until he gets a transplant. I'm sick of it. And don't say we both need therapy because I know that. He refuses to make time or pay for it and I have no income.

Thanks for listening to my whining.

[Chris]

If he is this bad now, a transplant does not sound like it will help your situation. I wouldn't say it's due to age since everyone is different. How he handles himself can define how he may react even when healthy and have more energy, which could be more stress to you. This one is a thinker though and will take some deep thinking on your part. I can say how I feel, but do not know the whole story and would be wrong of me to "judge a book by it's cover" sort of speak.

[willowtreewren]

As much as I hate to say it, the drama you are describing does not sound like it is really related to the dialysis.

This especially worries me :

He acts like any possible happiness or ability to be thankful for anything is on hold until he gets a transplant.

Why do you think his behavior would be any different after transplant? There are all the meds to take (and being ON TIME in taking them). For some there is constant worry that the transplant will fail. There are the side effects from the meds (some psychological).

If your BF is having a hard time handling the dialysis because of OCD, I can only imagine his reaction to any thing that might signal a rejection episode.

I think you need to take a hard look at what your expectations are, and what you are willing to live with. Your personality is well-established by 28. I would NOT count on his changing in any significant way as he gets older.

Having said this, I realize that looking at his situation and feeling like he might NEED you makes your decision tougher. In thinking about your relationship, try to take ESRD out of the picture.

 

Aleta

[Poppylicious]

I have no idea if you're a worrier by nature, but I am and so I can relate to this.  The worry doesn't stop with transplant. Oh, it subsides ... but it doesn't bugger off.  Today Blokey was two hours late taking his meds.  Why?  Because I was sleeping on the settee downstairs (he has a sniffle-y cold and was snoring ... grrr) and so there was no one to nudge him awake (I managed to sleep till midday and he woke me up with a cup of tea) and keep nudging him till he got the message!

Is the PD actually working?  I HATED Blokey being on PD (I'm still not going to apologise and I will keep telling people!) and HE became a lot happier (physically and mentally) when he went back to haemoD 3x a week.  It stopped being in our face, boxes everywhere, rubbish piling up, a constant reminder that he was ill and would always be ill.  It cluttered up our lives and haemoD took that clutter away. He was so desperate for it to work, and it didn't.  That was such a horridly stressful time for both of us.

I don't think you need therapy ... I think (as Aleta says) that you need to remove the kidney-krap from the equation and consider how your relationship would be if you didn't have the worries that go hand-in-hand with it.  This is difficult though, bearing in mind this will always be a shadow following you around, transplant or no transplant.  You won't ever be able to escape it (unless you make that personal choice) and if you're going to hang around then you need to learn to deal with it as a couple, not as two seperate entities.

I actually think that if I were ever to have to go through what our men go through I would be just like yours.  My character veers towards the OCD and slamming of doors anyway, so I can imagine that dealing with dialysis of any description would completely throw me too.  I'm not sure Blokey would be able to cope with that ...

 

Sending you *huggles* for a peaceful start to 2013. 

[CebuShan]

Speaking as the Dialysis patient, I know I tend to be OCD about some things. My diet especially BUT that is me. I try not to inflict that on anyone else. When I was first diagnosed, it was very tough on both of us. Me because of all the confusion and questions; my husband because he felt helpless to do anything to make it better. In September of this year, we started doing home hemo. (Long story there, let's just say that we did get through it!) I do most of it myself. I don't know about PD but, shouldn't he be able to do it mostly by himself?
I don't know the whole situation but it sounds to me like he isn't very mature if these temper tantrums are an ongoing thing. By 28, he should be able to handle things a bit better.
He refuses therapy? There are some antidepressants that can be prescribed by his nephrologist.
Basically, though, it all comes down to this: Is this what YOU want to deal with for the rest of YOUR life?
You won't be any help to him if you end up ill because of stress.
Is there no counseling services in your area that are based on your income? It might be helpful in making some difficult decisions.

   Best of luck to you. I will keep you in my prayers!

[drgirlfriend]

Thanks everyone for your huggles and prayers! Some answers to questions:

PD seems to be working for him - as far as very good labs. Do you think his mental state would be improved on hemo? We wanted PD so he wouldn't have to cut into his work and drawing time too much. He still works full time and has been the sole breadwinner for the last 1.5 years. He does 95% of it by himself and yes, I feel helpless when things don't go well. I try to help but it makes things worse, so I am learning to walk away unless summoned. I would love for all the boxes and crap to disappear, but that's the price we pay for now.

Suggesting anything that will cause more money to go out is forbidden. No therapy, no more prescriptions. We are close to broke. I was really hoping there would be a support group here but there isn't one within 30 miles. If I stay here, I'm going to try to start one. Friends and family don't really get what goes on and how it feels.

No, he isn't very emotionally mature (lousy parenting at work, but I knew that when we got together) but he got thrown into the position of having to support me & having a bunch of medical insurance co-pays without warning. The jobs for me in NC were few, far between and low paying. I am a drain on his funds and this stinks for both of us. I hate being dependent on anyone and he wasn't thru indulging his toy collection.

I don't know if he will be any better with a new kidney. Probably not. However, the biggest reason for me staying this long is him needing a caregiver. I don't know how it would effect his status on the transplant list. I'll have to find out.

Separating dialysis from the rest of it, and having had a tearful conversation about everything yesterday, it looks like our biggest problems are me not working and how differently we approach life. Maybe it's just because I've been around longer, but I know that life is a series of events, some good, some painful. The best thing you can do is deal with them as best you can and keep moving. Everything out of the ordinary that happens to him is the end of the world. So I have decided that if I can't get some work by the end of January, I'm going back to California to try my luck there. There are 2 places I can live rent-free until I find a job. I'll just have to leave most of my stuff here.

[jbeany]

girlfriend, if you read through the posts from people post-transplant, (I'd suggest "Starting again after transplant" http://ihatedialysis.com/forum/index.php?topic=22545.0, if you have the time to go through it) the one thing that holds true for all of us is that the only problem a transplant solves is needing dialysis.  Emotional problems may actually get worse with the meds.  Money problems certainly don't go away.  Relationships may change, but that doesn't mean they get easier.  And stress only changes shape - it doesn't leave.

My advice is don't look ahead to a possible transplant.  Unless there's a living donor in sight, it could be many, many years before that happens.  Think about right now.  And while I know there's a lot of guilt associated with leaving someone when they are sick, ask yourself if you think the relationship would have lasted even if he was healthy?  You aren't married, so you haven't made a vow to stay.   Sounds to me like you've already set a deadline to leave, and that may be the best choice for both of you. 

[The Noob]

check yer PM's punkin, i just sent you one.