Please help me

[MooseMom]

I have had fsgs for 18 years; six years ago, through circumstances I won't bother going into here, it became apparent that my condition was serious and would eventually lead to ESRF.  I fought it all the way...pills, diet, doctor's appts, labs...it has been a horror because I knew that time was the enemy. 

The day I have dreaded for so long is here.  I got my referral today in the post for a consult/treatment re my fistula to be created.  I have seen this piece of paper in my mind for so long.  I could close my eyes and still see it so clearly. Today, it is sitting here on the table.  This is the worst moment of my life.

Having a fistula created represents the crossing of the Rubicon in my mind.  Up to now, I have not seen the physical effects of my disease.  Having a fistula changes that.  I don't care what it looks like to other people.  I am long past the stage of caring what other people see or think.  It is not about vanity.  I am not going to try to hide it.  I don't care.  But it is a physical manifestation of my disease and of my frightening future.  It is a symbol of my worst nightmare coming true.  I know I need to make that phone call to make an appointment, but I just can't.  I just can't, I just can't.  I can't even think clearly.  All I can see is my arm being butchered without any guarantee whatsoever that it will serve a useful purpose.

[MooseMom]

I am no mood to faff about with whatever problem this site is having with posts that last more than 2 paragraphs, so I will just continue here.

Please talk me down.  I am unconsolable.  I can hardly see to post this.  I feel like I am being led to my execution.  I just can't willingly allow someone to do this to me.  I just cannot.  This is just a bridge too far for me. 

I had to have an abdominal ultrasound for my pre-transplant hoopjumping.  I got the results yesterday, and it confirmed that my kidneys are dying.  They are small and dead.  I knew it all along, but to read it in black and white was such a shock, and I haven't recovered from that before getting this referral in the mail.  I am devastated and feel trapped.  They also sent me my referral for a "2D Echo with adenosine stress test", and from what I have learned, it involves needles and chemicals that stress your heart...I have to do this test for the transplant people.  Do I do that test before having the fistula done?  It's just too much at one time.  I can't get past that feeling that this is the beginning of the end..I already know what it will feel like to wake up from surgery and see bandages on my arm and know what lies beneath. Please help me...I am panicking and have no one to talk to about this.  Please someone tell me what their fistula means to you and how you felt when you woke up and first saw it.  Please someone talk to me, please.

[okarol]

Awww MooseMom.
I am not a dialysis patient, but I freaked out at the thought of my beautiful 18 year old daughter getting a fistula. It seemed as if we were doomed, her life forever changed. She actually had a chest catheter first, and somehow that was easier to cope with, as it was temporary. Looking back I see that it was just a step in her life, to extend her life, and the fistula was her lifeline. So I came full circle and came to appreciate that buzzing arm and what it gave her.
I am sorry you have to go through this. Best wishes and hugs for you. 

[pamster42000]

You have to slow down....take a couple deep breathes.....it has been my experince going to have a procedure done is much more scarier just thinking about the unkown. After it is done you say, what the heck..it wasn't that bad. You have to take this one step at a time.....don't think of all the future procedures...get through the fistula procedure first.

I was the caregiver in our situation, so never had a fistula.I did however donate a kidney and I know how scary it can be going into surgery. You have to have a positive outlook to help you get through this time in life. The fistula will allow you to start dialysis which apparently it is time to start.

This is not the beginning of the end.....it is just a new road you have to travel, you just have to ask for directions once in awhile until it comes familar to you.

Kidney disease can be overwhelming at times......post here when these times occur and you will get support.

[Sunny]

I haven't gotten that fistula referral yet, but I know my time is close too.
I'm sure I will fell exactly the same as you. Maybe break down the steps and take one at a time. Get the fistula done, then the heart check-up, or something like that. It seems like a lot to throw at you all at once. Talk to your doctor about it because maybe an anti-anxiety medicine can help you through this difficulet period in your life.You can cross that bridge. Visualize yourself on it and slowly crossing it.

[MooseMom]

I had a colonoscopy 3 years ago, just routine, and they had to keep me in recovery for a long time because my blood pressure went so low.  In Nov 2008, I had a hysterectomy; the surgery went perfectly but I had to spend 2 nights in ICU because I just wouldn't/couldn't wake up.  The anesthesiologist nearly panicked.  It seems that each time I have some sort of anesthesia, I am more adversely affected than the time before.  So I worry about even waking up.  I can't take things slowly because everyone is telling me I have to do everything quickly.  My referral for my fistula even says ASAP, and I want to get the pre transplants stuff done quickly because I need to start accruing time.  I don't have a living donor.  I don't even know why I have this disease.  I don't fit any sort of profile.  None of this makes sense to me.  I think they are going to make me have my gall bladder removed, too.  It's just one thing after another with no time inbetween to breathe.  I am overwhelmed, so completely overwhelmed.

[monrein]

MooseMom, this stage of ESRD is the toughest there is in my opinion because it feels as if you're leaping into the unknown and in a sense you are....it is the unknown for you at this point.  I've had kidney disease since 8 months old, dialysis at 26, first transplant at 31, lasted 23 years, D again for 10 months, second transplant for a year now.

I had an emergency subclavian catheter the first time, then a forearm fistula that lasted all 5 years, a permacath the second time as my upper arm fistula wasn't ready yet...they take a couple months or so to develop, depending on the person, and now that fistula is still buzzing away happily.  I did home hemo the first time and was at a self-care clinic second time, where I set up my own machine, did my own needles, took full control.  So this is where I'm coming from.

Kidney disease is awful and we are all different but how bad it is really is, can absolutely be a function of how we perceive it and accept the fact that it keeps us alive.  I'm not saying that we must always be positive and love D...impossible, but by taking control we can regain a bit of a sense of being in charge of our life. 

I strongly advise you to have the fistula surgery so as to be ready for dialysis (I felt way better btw once I started cleaning away the toxins and extra fluid) and hopefully not need a permacath...but that is a perfectly fine option if your function goes so low that D becomes necessary on an emergency basis.  Not dialyzing when we need to can cause further, longer term damage to the body and that just makes the situation more complicated.  I think I'd do the fistula before the other transplant test because that is likely to come up first.  I'm assuming that you know about PD, but that you've decided on hemo?

I researched fistulas before mine was done and asked to watch.  They said I was nuts but said yes and I fell asleep both times although I watched as long as I could stay awake with the sedation.  I wouldn't recommend this part, but I would have loved to be a surgeon (my brother is a very skilled veterinary surgeon).

Your fistula is your lifeline.  An execution is your death.  They are polar opposites. A fistula helps us to stay alive with the least risk of infection, it's really the gold standard of accesses for hemodialysis.  They can be ugly but so can many things and something that keeps us around to enjoy whatever and whoever we can is a beautiful thing.   I love mine.  I really do.  Not how it looks although mine have never been particularly awful, but I love what it's done for me.  I would have been dead at 26 without D.  I'm 56 now and my life has been and still is something I want, enjoy and am thankful for.  I like touching my fistula and feeling the thrill (the buzzing feel).  I like listening to the bruit (the sound) it makes and sometimes at night it is comforting up against the pillow...it sounds like the ocean.

I've felt so sick and tired of being sick that I wouldn't have minded disappearing BUT the moment I knew that something could be done I went with it and tried to educate myself on every aspect and take back any control available to me.  This has been my experience and I hope you find it helpful.

This isn't easy but so many of us have walked through the fire and although it can be quite warm, we come out the other end and try to live lives of meaning and even joy.  We also flirt with depression and sometimes it moves in with us for a period of time...another battle we can and must face.

Please try to take it one step at a time because it is all overwhelming.  Keep posting about your feelings and I hope you can get some reassurance here.   

[pamster42000]

I remember the first time we got the call that the Dr.'s thought my daughter was rejecting her transplanted kidney. I drove her so fast to her transplant center two hours away I think I broke some kind of record. When we got there the Dr. didn't even see her until the next day. Getting on the list is important, but it takes time. Concentrate on getting the fistula and then work on getting on the waiting list.

In the hospital world they want you to hurry up....... but then you wait.

[MooseMom]

For five years, I have been educating myself.  I have kept all lab results.  I make lists of any questions and document all answers.  I am my own best advocate; I am willing and able to be so.  I am ultimately responsible for my own clinical outcome.  I am and have been compliant.  I take 25 pills a day.  I know them all by heart and keep files on all patient information.  I know why I take each pill.

I have been to many dialysis clinics because my mom is on D (different reason from myself).  She travels a lot, so I have seen many clinics with her in different parts of the country.  I know as much about dialysis as it is possible to know without actually being on it.  I have researched all of my options and know the pros and cons to each.  I already have info from NxStage.  I have tried to go and talk to the people at the clinic I will start out in and have a look around, but apparently they cannot talk to me until they have approval from my insurance company.

I have done absolutely everything possible to plan and prepare.  I find some modicum of comfort in planning because I suspected all along that once the time came, I would not be thinking clearly.  And I'm glad I did because now I am not thinking clearly.

[MooseMom]

I remember the first time we got the call that the Dr.'s thought my daughter was rejecting her transplanted kidney. I drove her so fast to her transplant center two hours away I think I broke some kind of record. When we got there the Dr. didn't even see her until the next day. Getting on the list is important, but it takes time. Concentrate on getting the fistula and then work on getting on the waiting list.

You and your daughter have been through the wars.  Add anger into the mix of what I am feeling, and when I read about you and your daughter's experiences, it makes me mad that you and she ever had to suffer.  I read your post about what it feels like to not have the role of caregiver in your life anymore.  You are wrong...you are still a caregiver, just to a different set of people.  That you would even bother to read and then reply to my posts shows you will never stop being a caregiver.

I emailed the transplant coordinator for advice on how to schedule things.  They give so many lectures about how we're a team and how I have to keep them informed of everyt...this forum has problems...

[MooseMom]

to continue...yes, the tranplant coordinator kept telling me that I have to inform them of when I have appts, am hospitalized, etc., so I will let them decide what I should do re scheduling this stuff.  The stress test involves an injection of the chemical to stress your heart (I'm fit...why can't I just walk on a treadmill or something?), and they won't be able to inject me in the arm that has the fistula...

[okarol]

I am no mood to faff about with whatever problem this site is having with posts that last more than 2 paragraphs, so I will just continue here.

..this forum has problems...

I sense maybe you're having typing beyond the bottom of the text box. I have heard this from a couple other members and the solution appears to be switching from Internet Exporer to Firefox or Safari. I am sorry, we just have to yet found out why this glitch happens on some computers.

okarol/admin

[MooseMom]

sense maybe you're having typing beyond the bottom of the text box. I have heard this from a couple other members and the solution appears to be switching from Internet Exporer to Firefox or Safari. I am sorry, we just have tot yet found out why this glitch happens on some computers.

okarol/admin

That's the least of my problems.  I don't know Firefox from Safari from a hole in the wall, and at the moment, I don't care to find out (project for another day, perhaps), so I'll just continue spread out my posts.  Please don't apologize; y'all do such great work with this forum.  I'm just grateful it exists.

[pamster42000]

Yes the transplant cor. needs to know the outcome of each Dr. visit etc. All you have to do is tell the physician you have seen to send a copy of your visit to transplant center. As a added precaution I would call the transplant center to inform them of the visit also. Sometimes faxes don't get sent.

I remember Sarah getting the stress test done but it was years ago. Maybe ask why you can't walk on the thead mill instead...I'm sure they will have an answer for you. I'm guessing they want an in depth view beings your getting on a waiting list. They have to be very careful because they don't want any unkown surprises that they can forsee now by doing this  test.

[MooseMom]

I've completed five tests (three of them even before my evaluation, and I had copies of the results at the ready...they were most impressed) and have informed the coordinator of same.  I have instructed the various doctors to send me a copy of all results for my records.  I have three more tests scheduled and have informed the coordinator of those.  This stress test is the only test outstanding that needed scheduling, and it is for this test that I have requested advice from the coordinator re timing.  I suspect that she will want me to have the fistula done first, but I am not going to act on mere suspicion because you're right, my life is at stake.

[pamster42000]

I can tell you are in control of the situation....just had a moment where you were unsure of yourself. Continue what you are doing. Keeping records for yourself is a wonderful idea..I did that with Sarah. This way you can read over them and be informed. Keep up the good work!

[MooseMom]

I don't feel I have control.  My kidneys are dying and there's nothing I can do about it.  I cannot control my emotions.  I suspect that I'll just have to burn myself out.

[okarol]

Many people have tried to explain what grief is; some have even identified certain stages of grief.

Probably the most well-known of these might be from Elizabeth Kubler-Ross' book, "On Death and Dying." In it, she identified five stages that a dying patient experiences when informed of their terminal prognosis.

The stages Kubler-Ross identified are:

    * Denial (this isn't happening to me!)
    * Anger (why is this happening to me?)
    * Bargaining (I promise I'll be a better person if...)
    * Depression (I don't care anymore)
    * Acceptance (I'm ready for whatever comes)

Many people agree that these stages of grief are also experienced by patients when they have lost their kidneys. If this sounds like what you've experienced, I hope you'll feel encouraged that there is hope as you go through the process.
Sending you lots of love and hugs 

[MooseMom]

I experienced many of those stages (though, never denial) when my son was diagnosed with autism.  I don't think I have the strength to do it all again.

[pamster42000]

You are stronger than you realize.....you have alot to deal with right now. Just know you have support here and we will help you through this difficult time. You have taken all the steps that you can up to this point and all you can do is wait to see what procedure is first..fistula or stress test. It will all work out. Patiences is a virtue that grows in kidney disease.

[MooseMom]

Thank you everyone for your support.  I am exhausted and have to try to step away from all of this for just a while.  Tomorrow is Sunday, and there is nothing that I can do on a Sunday...no appointments can be made nor surgeries can be performed.  I will hopefully have a few more answers on Monday from the transplant coordinator.  If, in the meantime, anyone would care post here and share with me their feelings upon getting a fistula, I would be so very grateful.  And again, thanks to all who took the time to post.  Have a good evening.

[Stoday]

I had to spend 2 nights in ICU because I just wouldn't/couldn't wake up.  The anesthesiologist nearly panicked.  It seems that each time I have some sort of anesthesia, I am more adversely affected than the time before.  So I worry about even waking up. 

You don't have to have general anesthesia that puts you to sleep. My fistula operation was made with an "arm block" whereby the nerves in my arm were blocked. I was fully conscious throughout the operation which took over two hours. The worst part was being probed in my armpit with a needle. They needed to give me six injections in exactly the right place, so they stuck a needle in and gave me an electric shock through it. That made different parts of my hand and fingers twitch. They could tell by what twitched if the needle was in the right position. Took half an hour to complete, but when they'd done so my arm was completely without sensation.

[sullidog]

I've had those frustrating times in my life. This week I've been fighting that I need a blood transfusion instead of epo, well turns out it was an infection not hg that were causing my symptems. I'm going back soon for my second access. I started out with a permacath, then got a graft, the graft clotted 6 months later, got it running again, clotted a month later, tried to restart it it worked until I was in recovery, then quit again, put permacath back on Wednesday I go back to see about a new access. Yes I've had it rough but some how I keep going.
Best of luck to you.
Troy

[Jean]

My heart absolutely bleeds for you and your situation. I am about 2 0r 3 steps behind you and when I stop to think about it, I am terrified. But, the choice is, this or death. I am not afraid to die, I just dont want it to hurt. Maybe you feel the same. I hope as time goes on that you feel a little more acceptance for this situation. Just take a deep breath, and think of all the people who have responded to your note. Every one here knows what you are going thru and they have been there, done that. I figure if they can do it, so can I. God Bless you.

[RichardMEL]

Gee MM I understand how you feel in some ways. I had the FSGS diagnoses 13 years before I had to start.. so like you I knew it was coming; every lab drawing and doc's appt was a crucial time and I hated going in to find the results and the decision if we were "go" this month or would hold off. Every time he'd say "we'll leave things as is for now" I'd have a major "phew!" and relax a bit.

You mention that the fistula might not be anything useful for you. Yes it will. It will be your lifeline. OK You are getting a transplant work up and if you have a live donor in mind maybe you can avoid dialysis but if you're just getting worked up for the list thn chances are, sadly, you will need dialysis and have to use that lifeline. The fistula is the best form of access you can have and will most likely last you the longest.

You have the best attitude! You know your stuff, you WANT to understand why you take stuff, what your labs mean, and control your treatment and outcome as best you can. This is one of my current beefs with my dialysis team in that I am losing a bit of control over my treatments, when we have so little control over anything to do with our condition (but that's a whole other issue). I think you are in the best poisition to make the most of what is coming.

Hang in there. This is something you will need to do. I realise this means you will know you're suffering..yes.. but I'm sure you have also felt the tiredness aspect of the disease, and sometimes lack of energy and the like. It may have come on so slowly that you may not have noticed it so much. I understand not wanting to take that step.. but the longer you delay it the worse it will be for you.

This discussion reminds me in a way of Goofy. I wonder how she's doing.