Please help me

[MooseMom]

Richard, I don't mind the tests they make me go through in order to get on the list.  Well, they're not what I'd rather be doing, mind you, but I do understand and appreciate that they want to address any hidden problems I may have before they subject me to major surgery.  I was prepared for most of the tests, but the adenosine stress test was something I had not anticipated.  But luckily, upon further reflection, they decided that was overkill.  Most of the patients the transplant team see are not in very good shape; I was fortunate enough to have good pre-dialysis care and am probably healthier than most of the people that go through their program.  There are a fair number of tests on their list that they have deemed unnecessary for me, so I got off fairly easily.

I suspect that once I get the fistula, I'll be able to come to terms with it.  It's a matter of perspective; the fistula is that demarcation between life before dialysis and life afterwards.  A free live versus a tethered one.  While I understand the purpose and the necessity of the fistula and will come to appreciate it, it will still symbolize to some small degree what I have lost to this disease.  I am hoping that sooner rather than later, the sense of loss will be overtaken by a recognition of what I've gained.  But I have not reached that emotional accomodation just yet...

[paris]

MooseMom, I can relate to the feeling of grief.  This isn't the life any of us planned,is it?  My stages change frequently---mad at the world, accepting, grateful for everyday, jealous when someone else gets a transplant, joyous when someone gets a transplant----I am my own rollercoaster ride!!    I do think I am more appreciative of everyday life and don't take the ability to do things for granted.   But, tomorrow, I will probably be a mess again and upset that I have turned our famliy's life upside down!    We are all here for you and want to help any way we can.  This is a safe place to vent, cry and yell.  You are amoung friends     

[MooseMom]

I lack courage.  I finally made an appointment to have my arm mapped for my fistula, and that little phone call took every ounce of courage I had.  Just a stupid phone call...

[monrein]

I lack courage.  I finally made an appointment to have my arm mapped for my fistula, and that little phone call took every ounce of courage I had.  Just a stupid phone call...

You THINK you lack courage MM, but the way I look at it is that you only needed enough courage on that day at that time to make that particular phone call and you dredged it up from wherever it was buried or hiding.  None of us really know how much courage we actually have until we are required to muster it up.  Not easy, not fun, not even pleasant but sufficient wherewithal was found.  I'm so glad you made this appointment and I'll be sitting on your shoulder, heck we'll all be there with you in spirit if you want company, for the vein mapping itself.   

[Lisa]

None of us really know how much courage we actually have until we are required to muster it up.

I could not have said that better!! 
You do what you have to do or die...I have decided that I am thankful that the organ that I lost can be reproduced artificially and keep me alive.

 My grandmother died of PKD in 1964. No one knew our family had the disease until then...that diagnosis at her autopsy has saved my life as well as many others in my family, she had no choice...now we do!!!

[RichardMEL]

MM this could have been exactly what you needed to do. Now you have the ball rolling things will fall into place I think. It is scary yes, but it is not the end of the world... just a new phase that's all. You will be fine. Well done on making the call!!! 

[MooseMom]

My appt is for tomorrow (Monday) at 3PM.  I hope I don't disgrace myself by being too weepy, although I'm sure they've seen it all before.  There's nothing unique about either my or my situation.

[kitkatz]

Good luck on Monday. Bring your courage and your whimpy self.  It will not be as bad as you think it will be. 

[Pam]

MooseMom....good luck tomorrow with the vein mapping! It is pretty much just an ultra sound. The only bad thing I experienced was the mess the girl made with all of that jell stuff. Every once in a while she would turn the volum up and you won't believe some of the strange sounds that come from inside

[MooseMom]

I think what I fear is becoming an invalid.  I have always been active and healthy, or at least I thought I was.  Going on dialysis forces me to perceive myself in a different way.  I am 52, not young but not old, either.  I am in the same holding pattern I've been in for the past five years, but now the downward spiral is quickening.  I'm just waiting for my kidneys to eventually fail; I know that I will physically feel a lot worse before I feel better, and that is scary to me.  While watching the Academy Awards tonight, I couldn't help but notice how vital and vibrant everyone looked.  Sure, they all had on make up and beautiful clothes, but they were so...shiny!  Is it possible to shine after kidney failure?  Do any of you ever see yourselves as "vital" any more?  When I last saw my neph, he described me as "vital", but I didn't feel it and I suspected that he was just trying to talk me into doing something I didn't want to do (dialysis).

Has being on dialysis changed how you perceive yourselves?  How has it altered your self-image?  By "self-image", I don't mean only what you see in the mirror, but I mean also what you understand yourself to be.  Do you feel proud that you've been able to cope?  Do you thrive?   

[MooseMom]

I am scheduled for surgery Monday 15 March at 10 AM.  I actually got through the mapping session without shedding a single tear.  I think I've merely exhausted myself.

After I told the surgeon my history, he gave me the oddest look; I don't know, but it looked like pity.  I hope I misread his facial expression.  I have felt a lot of emotions during this time, but feeling pity for myself hasn't been one of them.  Bad things happen every day to all kinds of people, and there's no reason I should be spared.  But it did occur to me that if I heard this story from someone else, I would think it was just all very sad.  I just feel sad for everyone who is having to go through this, and it makes me even more grateful that you have taken the time to try to make me feel better.

If there is anyone out there who is also about to undergo surgery to get ready for dialysis for the first time, please feel free to send me a message if you think it would be helpful to you.  I don't know if I am in the best place to offer a lot of encouragement, but I can offer understanding.

[okarol]

Jenna is scheduled to see the vascular doc on Wed. His nurse said he no longer does fistulas (huh? he did hers 6 yrs ago) but he does vein stuff for all the celebrities so maybe that's all he can do now, I dunno. Anyway, he is going to see her, and give her a referral. I hope he can also give us some guidance about her failed fistula arm, somehow to improve circulation where it clotted, so she can use it for IV's when needed. So we will be thinking of you MooseMom, and I will also try not to shed a tear.

[MooseMom]

It is so very hard to watch our children struggle, isn't it Okarol?  My son has struggled with his autism all of his life.  He is in college now, and it is not easy for him, but he perserveres.  He's your Jenna's age.  It just seems to be against nature to have children who can't take full advantage of their young lives.  It makes me so angry to think of Jenna having to fight like this, to have her life intruded upon.  Will you please keep us posted?  How is she coping?  How are YOU coping?

[RichardMEL]

Moose - I don't want to speak for your potential experience because you haven't had it yet - but you don't have to be an invalid on dialysis. Indeed dialysis should HELP you to stay active. OK you won't be able to run marathons or perhaps do everything you want but I keep as active as I can during the week and when I'm not at dialysis. I work full time, I walk when I can including a long walk on a Sunday. I do everything I can and I certainly don't feel like an invalid. The whole idea of D is to keep you living (and I don't just mean "existing") - I think you might find you will be better off than you imagine after you get stable with D.

[kitkatz]

I am pretty much thriving in spite of dialysis.  Been at it a long time now.  I may bit** and moan but life is pretty good right now.

[MooseMom]

Kitkatz, I loved Babylon 5.  It's one of the few series DVDs that I own. 

Richard, I have no doubt you are right. I'm sure that once I start D and develop a routine that I will wonder what all the fuss was about.  I have to remind myself that right now, I am tired and scared, and that therefore everything feels so much more menacing.  Also, surgery just scares me.  I've had two procedures done in the past couple of years, and both times I've had trouble with the anesthesia to the point that the thought of another procedure just creeps me out.  It is a matter of adjusting to a new reality.  It's just taking time.  I am really hoping that Monday night, when the surgery is all over and I am at home with my fab new fistula, that my nerves will be calmed by the fact that I have now taken that first step which is so often the very hardest.  But for the time being, I am in full panic mode.  I just want to get it over with.

On top of it all, I have an appointment in 2 days with the social worker at the transplant center as part of the eval process.  I'm going to have to steady my nerves so that I don't look like a right nut job.

[RichardMEL]

MM hun it's normal to be anxious and worried about this stuff (and the SW will have seen all that before and take it into account - just be honest and open with them about how you feel). You're now locked in for the fistula surgery on Monday and I think that's a Good Thing(tm) for you - sort of like now it's locked in so you need to get it done and once it's over with - hopefully with no issues for you - you'll have it and just get used to it.

Your feelings seem pretty normal to me!! I am confident you will be fine though!! 

[Lisa]

I am scheduled for surgery Monday 15 March at 10 AM.  I actually got through the mapping session without shedding a single tear

    Good going...that is a start and I am very proud of you for the effort...only downhill from there!!!








EDITED:Fixed quote tag error-kitkatz,Moderator

[ODAT]

My mom just had surgery this morning. I was at her house last night and she was teary eyed and worried. I just talked to her (3:30pm - surgery was at 10:00am) and she sounded so chipper!

She had a graft and was able to use it for about nine months. Today they were able to put a fistula in her upper left arm. My mom is very sensitive and she has been getting through this pretty good. She doesn't like it, but understands it has to happen. It helps to have a lot of support and this is a great place for that.

Prayers for you

[MooseMom]

Oh ODAT, I'm sure your mom is so relieved that the surgery is over.  It's the pre-surgery jitters that are so awful.  I just hate that.

Lisa, I'm to the point where I've exhausted myself and all I want is to get it over with.  Get the damn thing done and then get on with life.  I'm sick of worrying about it.  I guess that's my process...obsess over something until I get bored.  I am looking forward to Monday night when it's all over with and I can loll about in bed and recover.

Richard, thanks; you've been so kind.  I know the SW has seen it all before.  Well, she's gonna see more of it.