Need to talk

[Scarlet]

I am sitting in my bedroom and can't stop my brain from running around in my head screaming.  In the past year I have gone from a GFR of 30 down to 14 and I am starting to panic.  On sept 9th they are going to try and put in a pd cath....due to cancer surgery 12 years ago I have a lot of scar tissue and they are not sure if it will work.

I suddenly feel so scared and alone.  I have a great husband, But he has never really been sick so there is only so much that he can understand.  I lost my mom to PKD 4 years ago this July, and it is all hitting home that I am really going to get sick like she was. 

You guys are the only ones that Really know what I am feeling and I could use some friends right now.

[galvo]

Scarlet, you should feel scared. It's a bloody scary time. I was absolutely petrified when I was going on D 2 years ago. You're right. The gang here are the ones who really know, and they will prove to be the best friends you've ever had. I'm on in-center haemo, so I can't talk PD issues with you. My suggestion is that you post regularly on what's happening, and you'll find the support here amazing!

I feels for ya and wish you well. Remember, keep in touch.

[monrein]

Keep talking Scarlet.  You're definitely not alone and this whole thing we live with can be scary, painful, unfair and that's just for starters.  I've only ever done hemo myself but our PD members will chime in here at some point I'm sure.  Keep talking to your husband too so that you don't make yourself feel more alone than you have to.  Sometimes, even if people can't really understand what we go through, the fact that they're willing to try and to listen is a huge help.   

[rsudock]

We are here, we are listening, and we understand! You are not alone....you can do this!

xo,
R

[jbeany]

 

We're here, Scarlet and we're listening.  You are headed into the unknown, and that's always the scariest part. Whether you end up doing PD or hemo, we can help.  We've got the knowledge you need to go in to this informed, and ready to make the best choices for what works for you.  We've also got over 6000 shoulders here that you can cry on whenever you need to.  Hang in there and we'll help you through this the best we can!
 

[MooseMom]

If you need someone to understand what you are going through, come to IHD; we do understand the fear.  If you need someone to love you, you have your husband.  He doesn't need to understand what you are going through to show you love and support.  It is unfair and unwise to ask one person to supply you with everything you need to combat this, so that's why it's good to cobble together a support system comprised of many elements, ie, IHD and your husband.  Between us, I hope that we can help you find the courage to do what you need to do to survive.

My mother was on dialysis for 5 years; she lost her renal function due to some screw up during abdominal surgery.  She died around this time last year, and she has really been on my mind recently.  It's like PTSD...it's just now hitting me.  I often wonder if I will become like her, a wizened husk toddering from one dialysis session to another, but then I have to remind myself that I am not my mother.  I am younger, healthier, more determined and better educated, and I suspect that you are not your mother, either.

With good dialysis, you don't have to be sick.  Don't let anyone tell you that being on dialysis means you HAVE to be sick.  Don't have low expectations.  If PD doesn't work for you, look into home hemo so that you can get as much dialysis as possible.  And keep looking to us for support whenever you need.  We have members all over the world, so no matter what time of the day or night it is, there is someone somewhere that you can turn to.

I'm scared, too.

[Scarlet]

Thanks guys.  It is nice to know that you are out there.

Bruce, my husband, is concerned that I have isolating my self so much....thought that I might try and get a membership at our local Re-fit centre.  Tried our clinics kidney machine exercise group but I am only 43 and that makes me 25years younger then everyone else in the class.  I am not what you would ever call a fitness buff...but I have heard that even mild exercise can help with stress.

  I am not about to start training for the Ironman...thought I would start with the treadmill.....

[galvo]

A good idea.

[MooseMom]

I like being around people, but I find that it exhausts me, so I'm happier being on my own.  I, too, sometimes worry about becoming the hermit lady at the end of the cul-de-sac, so I have done some volunteering that forced me out of my hermitude.  But it wasn't easy.  Don't start putting extra burdens on yourself.  If forcing yourself to be around other people makes you uncomfortable, then you are working against yourself.  Experiment a bit and find out how much contact with others makes you happy.

I personally find that exercise lifts my mood.  It is the one thing that actually does make me feel better.  Fear can lead to inertia, and inertia can lead to even greater fatigue, so just going outside and moving around can really make a difference.  I walk and cycle in the spring and autumn, swim in the summer and snowshoe in the winter.  Doing some moderate strength training can be done at home.  Your idea of joining the Re-Fit center sounds like  great starting point!

[jbeany]

Exercise sounds like a good idea.  A lot of studies show that 20 minutes of exercise is as effective as most mild anti-depressants, plus, of course, all the other added benefits that come with doing it.  Even if you don't believe the study, hey, it can't hurt!

[Jean]

This is a good place to come to, you have found the best. I am only in stage 4, and have been for nearly 3 years now, so I know my time is coming. When I first joined IHD I spent hours on the site, chatting, and reading. It upset my husband that I was ignoring my " real" friends. So, now, I try to let every one in on my misery,, haha Just kidding. Come here and talk about any and all problems you have. There is always some one here to help. We are all in the same boat and we all need each other.

[Ang]

baby steps is a good start, then educate yourself about what dialysis modalitys are best for you,
and all associated with this illness.

keep yourself fit as you can, that helps


good luck

[sparklelady]

Scarlet, it's good that you have a great husband. I, too , have a wonderful husband who was never sick. He came to PD classes, learned how to hook me up ( I did the cycler at night) organized all of my supplies, went to the gym with me and even ate the same kidney friendly diet as I did.
So, that helped so much that he was by my side through everything.He didn't need to understand, he just needed to be there. Maybe your husband can do some of these things with you. It helps to ease the fears if you have someone to hold your hand while you are going through this.
My husband actually went to be tested for living donor, he was a match. My brother was a match, also and he and I had surgery on Jan. 3rd.
I wish you well and hope to see on the boards often. It does help to talk to people who know what you are going through!!

[mcclane]

scarlet :

i had to deal with pre dialysis twice.  First time when my original kidneys died and then when the transplanted kidney died.  I can understand the feelings you're going thu, it is scary, and many thoughts run thru your mind.

You mentioned that you had a supportive husband.  My wife has been extremely supportive thru all of this, use the support of your loved one, it will help. 

I know it isn't the best alternative, but getting onto D will help.

[RichardMEL]

Scarlett,

I would say trhat say that being on IHD and talking to us is proof you're not totally isolating yourself, though I can understand why your hubby worries. Maybe you need to try to get him involved more in what you're facing. He may never have been seriously siuck before, but he needs to know what is coming up and the sorts of things you may have to deal with. Maybe even show him IHD and the sorts of stuff on here.

re the D center fitness group and you being 25 years younger than the rest - so what?? you're not a fitness buff, so the pace might really suit you - at least initially - and it might actually work on a social level in as much that you might get talking to some folks there (yes older, but D patients) about some of their experiences maybe?

Just some thoughts.

[jagermiester]

Scarlet,
Sorry to hear you are feeling this way.  I have spent a lot of years fighting depression and through those years I have come to find that journaling is an awesome way to get those thoughts in your mind onto paper.  It does help. You may write on 3 words one day and another you write several pages.  Writing also helped me work through my thoughts and be able to put things in perspective. 

And, as everyone else has said, you have this place to come to to let out your feelings and people will understand. 

[mcclane]

I personally find that exercise lifts my mood.  It is the one thing that actually does make me feel better.  Fear can lead to inertia, and inertia can lead to even greater fatigue, so just going outside and moving around can really make a difference.  I walk and cycle in the spring and autumn, swim in the summer and snowshoe in the winter.  Doing some moderate strength training can be done at home.  Your idea of joining the Re-Fit center sounds like  great starting point!

i can attest to that.  I have an intense work out schedule (even when my creatine was over 1000 i still never quit).  I've had to tone it down abit (due to a hectic work schedule), but I go at least 5 days/ week, I try to do 45 min - 1 hour a day.  over 30 plus min. intense cardio, then weight training.  I'm nowhere near Arnold or Sylvester, but I do feel exercise can help with your mood immensely.  Despite a run of bad news, I've had a day here and there where I felt pretty low.  But with the exercise, it does help me get out of that rut.

I can understand how a gym maybe intimidating.  You see muscle bound people and they're bench pressing 2 45 pound plates aside, but when it comes down to it, as long as you're not making loud grunting noises or leaving benches/cardio machines with huge sweat puddles, people there just keep to themselves.

If it will help any, try to go when it is less crowded, that way you can start getting used to the machines/weights.  Trust me, if I can persuade my parents (who are both over 60) to join a gym to workout, I have every confidence you can to.






EDITED: Fixed quote tag error - jbeany, Moderator