I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: MooseMom on February 27, 2010, 03:59:08 PM
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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.
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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.
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Awww MooseMom. :cuddle;
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. :grouphug;
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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.
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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.
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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.
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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. :cuddle;
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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.
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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.
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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...
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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...
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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
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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.
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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.
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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.
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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!
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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.
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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 :grouphug; :grouphug; :grouphug;
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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.
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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.
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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.
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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.
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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
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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.
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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.
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I understand your situation, I am just about one step behind you and I do feel for you.
Whenever I stop to think about it I realize Dialysis is the only way to continue to live right now
& hopefully a better treatment for ESRF is discovered soon.
My thoughts are with you.
Good luck from Kristina.
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MooseMom,I am so sorry to hear about your problems, we all go through it. My husband went about 5 years before he had to go on dialysis. It comes as quite a shock. The heart stress test was done to my husband 3 weeks ago, it is called a Nuclear test, sounds way out doesn't it. He had to do it over 2 mornings. One was a rest test and one a speed test. They inject you with a dye, leave you for 30 minutes and then do the test, attach pads to your chest. The next day you go through the same thing. Please just take one day at a time, remember being on dialysis will keep you a live, you will have good and bad days, there is no getting away with it. It is a new road to travel down, we will be walking it with you. Keep posting.
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MooseMom, keep your positive attitude, you will do much better with what lies ahead for you. Please go ahead and get the fistula, it is THE BEST route to go IMO, so far as the cleaning of your blood is concerned, and little chance of an infection. No matter where they decide to put your fistula, exercising it will help to develop it, for an easier time for the tech, inserting the needles. I don't think there is much worse then someone having to "go fish" for your access. That leads to bruising, and infiltration, and can cause your fistula to clot, or even fail. So far as the operation for the fistula is concerned, id rather be sleeping myself, when you wake up, its in. You will ( or should) go through a "mapping" first of all ,(done with ultra sound), for the surgeon to see what artery is best, and where, for the placement of the fistula. Its a simple procedure, no pain involved. Before I had my fistula done, I got in touch with a couple dialysis centers, and asked if there was one surgeon preferred more then others - a good surgeon leads to a good working fistula. I hope this helps, if you have any more questions, feel free to ask, lots of knowledgable persons here at I.H.D.
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Please talk with your nephrologist, before the stress test with contrast, they need to use a certain kind for kidney patients, as the contrast exits the body through the kidneys. So if you are not on dialysis yet, and your kidneys are barely functioning, they need to be careful what is used, as to not send you into kidney failure.
My husband is currently on dialysis, and has been fighting it for years, he just cannot accept it, he ends up in the hospital, when he does not have dialysis, and they end up having to inject him with all sorts of stuff. When not on dialysis, he becomes run down, and anemic, and sleeps allot. Wehn he is on dialysis, he feels better, and is able to get out of bed. I think he is finally realizing, the he cannot live without it.
Get the fistula done, as it takes time to heal, my husband had to have a catheater at first,, and got a nasty infection from it, which nearly killed him. Talk with the social worker at the transplant center, sometimes they can be helpful, if not then try talking with the social worker at the dialysis center.
Good luck
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When I call to make the appt for the stress test, I will of course tell them it is for a pre transplant workup and that I cannot tolerate contrast dyes. I've had this same conversation before. I should wear a placard that states that "I am a kidney patient" and be done with it. I've actually had cards printed up that give my condition, allergies and neph's phone. I've also registered with the Illinois State Emergency registry (or some such thing) in case I'm in an accident and can't tell people I have crap kidneys.
This may be a silly request, but it is possible for anyone to post a photo of their AV fistula? My mother has one on her left upper arm, and it is enormous. Then again, she is 82 and doesn't even weigh 90 pounds, so of course her fistula will look enormous. She had to have a catheter for 18 MONTHS!! because it took that long for various surgeons to create a working access. Her neph referred her to a vascular surgeon in a clinic that he, the neph, had some sort of financial interest in, so he benefited from her surgery which ended up butchering her, essentially. She finally ended up going to a vascular specialist in the Texas Medical Center (she lives in Houston) and thankfully ended up, at long last, with such a brilliant access that the surgeon took a photo and was going to have it written up. Anyway, this has made me distrustful which has added another element to my anxiety. I don't really care what my access looks like, but I just want to be prepared. So if anyone would mind posting a photo of their fistula, I'd be grateful. Maybe there will be a prize for the prettiest and most congenial fistula...
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Dear MM, I totally understand how you feel. I did not have much time of preparation. I had been rushed to the hospital with congestive heart failure and fluid on my lungs. Then they told me that my GFR was very low - my kidneys were on the way out. Then a few days later it had gotten even worse. I had no fistula, so I had a catheter put in, and then later I got a graft. I heard that diabetic patients usually had to have grafts because of their veins. I don't know much about fistulas, but I am always told that is the best kind of access to have.
Though it is difficult for all of us at first, somehow we come around and learn to appreciate silver linings.
One huge silver lining for me was this IHD family. I can express enough how it helped me through my first horrendous and frenetic days.
You'll make it through - you have an entire international family with you. :grouphug;
My caring thoughts are with you all the way. :cuddle;
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We have a nicely kitted out finished basement, but one large part of it is not finished; it has become my laundry area. It is dirty and dark and depressing, but it is big and will be perfect for storing NxStage supplies. I have already contacted our handyman guy and asked him to come out and finish it and make it nice. I've been wanting to do this for several years but was too frugal to do it; it served me well enough as it was. Now I have a plausible and justified reason for finally spending the money to tart it up. That's the only silver lining I've been able to come up with so far, but it will do. I'm also going to treat myself to a fab leather recliner for when I start HHD. Silver lining number two.
And of course IHD...
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Monday...I just got a call from the SW at the clinic I will go to. She expressed admiration that I sounded so in control and organized. She is so wrong.
It took every ounce of courage I had to call the vascular surgeon and make an appointment to get my arm mapped. I was told that my referral was incomplete as it only provided approval for a consult and not a doppler ultrasound, so the result would be that I would have to return with another referral and have the ultrasound at a separate appointment. So, I called my PCP to ask for a new referral, but no one answered because I guess they are all out at lunch having high potassium and phosphorus foods that I can only dream of. Now I have to deal with incompetence along with my own grief and terror.
Why does ESRF have to be such a logistical nightmare? How many trees are being sacrificed in the name of dialysis related paperwork? This is so stupid! And people really want to keep this healthcare system? Really?
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I've had that same stress test a few times myself. The whole point of them having you sit there and see how high your heart rate can go is to see if your heart can take a major surgery like a kidney transplant. .
Lisa
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...
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Well, I just had a major operation like a hysterectomy, and somehow I survived that.
I do understand the reasoning behind all of the tests, I really do, and I am glad they are being careful. I just hate the idea of having some chemical in me that will make my heart beat faster than it is beating right now. I don't need drugs when I have an endless supply of anxiety....
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The only stress tests I've ever had for transplant (I've had two trxs) was a walking on the treadmill test. I would have thought that the only reason to do a "chemical" based test was if you were physically unable, for whatever reason, to get the heart rate up "naturally".
I'm curious about other members here and what their experience of this is. I'm in Canada so things are sometimes quite different in different places.
I agree with you MM, it seems very odd.
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I was prescribed the injection stress test for my most recent eval, but after reading about it decided I wanted to do the treadmill one, so I phoned my coordinator and asked him if I could just do that one. He checked with the doctor and they changed the prescription. I think they tend to automatically prescribe the injection to accommodate people who are too unwell for the exercise one. Even though I consider myself to be in terrible condition since I stopped exercising about 18 months ago, I blew their average patient away on the treadmill. (I think they said the average patient lasts about 7 minutes, and I went over 12.) Since most of that was walking, I can imagine that the population that normally gets stress tests is typically quite a bit older than I and also quite unwell.
If you want to do the exercise stress test, just ask.
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Well, the transplant coordinator called and told me there would be no problem taking the stress test at around the same time I was getting my access, so I called the vascular people to make the appointment. The receptionist pulled out my referral, told me about the things I couldn't do before the test, and then asked me if I could walk on a treadmill. I said, "Yes" (I walk up to three miles a day!), and she said, "Are you sure you want this adenosine test?"
"No, but that's what they want me to have."
"Well, there's a big difference between a treadmill test which takes only one hour and the other test which means injecting you with something and it taking 4 hours."
So, I didn't know what to do; I've put in a call to my transplant coordinator (she must be tired of hearing from me by now) to inform her that I am very capable of walking on a treadmill and do I really need the adenosine test.
This is just my first day of making appointments per referrals, and I haven't been able to make a single appointment. This is just not helpful.
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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.
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?
MooseMom,
I'm sorry you feel so bad.
I still haven't had the adenosine stress test. It's part of my transplant evaluation, not preparatory for dialysis. Mine is scheduled for next month, long after I started dialysis.
But remember: One reason you feel so down and depressed is because you're physically weakened by your kidney failure. You're not yourself, mentally or physically. Your mind is clouded by all those toxins in your brain.
So the only thing to do is go forward and suspend judgment about everything for now, until the dialysis and meds kick in and you're back to feeling and acting the way you did years ago before you got sick.
Let me repeat that: Make no judgments about anything important right now. Not whom to vote for or whether to remodel your house or whether to buy a new car. If your doctors have the data that shows your kidneys have failed, then it's time for dialysis. Try it for six months and then see how you feel about it.
You're luckier than me. You're getting a fistula started a lot sooner than I did. I was on the catheter for 14 months before I got a working fistula.
So hang in there. Suspend judgment.
Don't even try to decide if you agree with what I wrote here! ;D
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I was prescribed the injection stress test for my most recent eval, but after reading about it decided I wanted to do the treadmill one, so I phoned my coordinator and asked him if I could just do that one.
At my hospital the test is a reclining bicycle, not a treadmill.
My problem is the residual bone pains in my legs from the high PTH I used to have. They start to hurt if I walk a long distance. I'll have to load up on Extra-Strength Tylenol before pedaling away.
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RightSide, you know, you're right (hence your name?). It's entirely logical to assume that your brain function is distorted because of poor kidney function. All that dirty blood is probably making me crazy, and I'm not kidding. I have a book called "Dialysis without Fear" that I bought several years ago in anticipation of this day, and a dialysis patient was quoted as saying that he wanted to apologize to anyone he may have yelled at before he started dialysis; he said he wished his doctor had told him that the biochemical imbalances that are a result of ESRF affects your moods and your thinking. I shouldn't make major decisions right now, but I sorta have to. I have to make big decisions like do I really want a transplant and how best should I approach dialysis? Not only that, but I have to keep on top of all of the paperwork! My goodness me, the paperwork! But your advice is sound, and I'll keep reminding myself of it. My brain is clear enough to agree with you, so thank you.
To update, the transplant coordinator checked with the surgeon, and it has been decided that a treadmill stress test would be fine. I am awaiting a new referral and will make an appointment accordingly.
It took my mom 18 months to get a working fistula; she was on a catheter for all of that time, so RightSide, I have some knowledge how hard all of that must have been for you.
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I thought I had achieved some modicum of peace, but I'm spiralling downward again. I spend time and effort educating myself so that I can be my own best advocate. I feel it is important to understand my condition and to fully comprehend why I must take this drug and not eat that vegetable. I do my research, but the more I learn, the scarier this all gets. I'm sure I am not the only one here who, upon stumbling across some tidbit of information (like the gobsmackingly high incidence of LVH in CKD patients...even before they are on dialysis...even before their eGFR starts to decline!!!!!!!!!!!!!!!!!!) slips into a state of depression (and even a transplant doesn't cure it!). At what point do you all quit worrying and just get on with life? I can't seem to get to that point. I really try, but when even my neph tells me that I won't die of kidney failure but will instead die of complications from it, well, it's rather soul-destroying.
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MooseMom,
I'm so understanding of your last post. The more research I do, the more lousy information I find about how renal disease will affect our bodies, even with a tranpslant or dialysis. It's enough to make a person crazy if you let it worry you to much. Hang in there.
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It just starts to get so complicated? I can't wrap my head around it all. You need a degree in biochem to understand it all. I've had fsgs for almost 20 years, and I've always wondered what bodily damage has accumulated over that time. Well, LVH is probably one consequence!
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MooseMom This is my 3rd time thru the wheels of the dialysis/transplant machine so I know from where I speak!
Time one was most definitely scary...I was acutely ill and things start happening quick. So you are already 1 step ahead!
I personally did not research all the things that come from kidney disease, even though I was diagnosed at birth, so I was only able to worry one day at a time!
I am now more aware of all going on and what can happen and what needs to happen. I have only been back on dialysis 3 weeks after losing a 15 yr old transplant and all I can do think healthy and hope my new wait on the list isn't long...(I only waited 1 1/2 yrs for the last one).
I am investigating how to get back to work ASAP and I have a physical job as a vet tech where I know some of my duties will not be allowed but I will be glad to get out everyday ...glad to be able to anything since dialysis is keeping be alive!!!
I hope I'm not out of place but I am also on Paxil due to the emotional ride that kidney disease can be ...I think medication and therapy or social networks are the best way to go in getting on the best track.
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hi moose mom. i didn't read any1 else's replies to yo i just read your posts and decided to write. when i was in the hospital i was on my death bed and the doctors had me sign the paper to put a perm access in my arm(fistula) i regret signing the paper because i still am using my catheter and the doctors keep pestering me to use my arm but i cant do it and i wont do it i would have rather done the method of pd for dialysis at home where they have a catheter in your stomach. i am proud of you that you don't care about how it looks but for me i have many insecurities i am a hair stylist and to have this thing in my arm upsets me and makes me feel un comfortable. you have a choice and make sure you seek out all other options before making a decision that will be with you for the rest of your life. if you need to talk i am here for you.
xoxo
sophierose
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Lisa, no, you are definitely not out of place; anti-anxiety meds, therapy and social networking are all very good coping mechanisms, and I will probably try them all. IHD has been very helpful...IHD=social networking. As for therapy, I will have access to the social worker at the dialysis clinic and at the transplant center, and I intend to ask them if there is someone I can see. My renal nutritionist actually suggested two therapists who work with people who have chronic diseases, but unfortunately, they are not in my insurance network. But maybe the social workers will have some suggestions. As for meds, I am thinking seriously about that, just to get me through the initial stages of dialysis. But for the time being, I think I will stop "researching" for a while.
Thank you for your reply; you are an old hand at this, and I am so grateful that you have shown me that it is possible to lead a good life despite kidney problems. I guess we get this image of ourselves growing old and watching the grandkids grow up. My only son is autistic and probably won't be having kids of his own, and I don't think I will get to grow old, so I guess it is time to discard those particular dreams and imagine some that are more realistic. What I feel is grief for what I feel I've lost. I know that such grief is a normal part of the process, but that doesn't make it easier. It is simply my turn to experience what the rest of you have experienced yourselves, so I know that you will all understand.
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sophierose, if you've changed your mind about your dialysis modality and want to change to PD, won't your docs let you do that? It seems unfair of them to make you do something you don't want to do. I can understand why you don't want a fistula. It's not insecurity...it's just a preference. What may seem petty to others may be really important to you. I don't want to do PD because with PD, you can't go swimming, and I swim every day in the summer. Not only that, but my husband and I holiday in Michigan each summer for the express purpose of swimming in Lake Michigan. Now, that may seem petty to others, but I don't really care. How you look is important to you, and how I can keep swimming is important to me. That's just the way it is, and let's not apologize for it.
The idea of a fistula does bother me; don't think that it doesn't. It just represents in my mind a constant visual reminder that I'm sick. I need to find another way of thinking of it. I need to start seeing that fistula as something positive, as my lifeline, as my gift to myself and to everyone who loves me and wants me to be around. But then I think, "Oh, that's a load of bollocks."
Thank you for writing, sophierose. You're very kind.
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Let me also tell you I have a supportive mom who has not only dealt with me but my brother who is 16 months younger was born with cerebral palsy that affects his fine motor skills and he has to be in a workshop...at various times in the last 44 years both of us have been home (including right now) and my mom at 67 is taking care of us (my pets) my stepdad and herself as well as still working 4 12 hr days...
She also has PKD and is healthy now only follows with a nephrologist!!
....AND SHE TAKE NO PSYCHE MEDS!!!!!! :angel;
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sophierose - the reason they want you to stop using the catheter and to use your fistula is two fold - one the fistula is a much better form of access and you can get much better performance ("clearance") out of it, and the risk of infection is MUCH lower than via catheter. The more you use that permacath the more likely it is something bad will happen. I understand you want to do pd - was that not discussed with you as an option prior to dialysis? At any rate having a fistula is a *GOOD* thing, because even if you do pd you could get an infection or something and not be able to use it, and then you'd be bloody glad to have the fistula so you could keep doing dialysis.
MM - I'm surprised at all these tests they put you through. I have done bugger all tests for an "evaluation" - I've had a few EKG's and ultrasounds and that's that. They say my heart is fine, my liver etc I'm healthy and ready to go and don't see a need for any extra stress tests or anything (I've asked the transplant co-ordinator a number of times about this). I'm sorry you have to go through that extra stuff - but remember they are doing it to ensure that you are in the best physical situation you can be to accept that transplant when it comes along. Try and grin and bear it because the ends definitely justify the means.
About the fistula being a visual reminder that you're sick.. well yes there's that, but I knew I was sick anyway - the fistula is almost something I ignore really. Yeah sometimes it gets funny looks from people but meh. Actually a few weeks ago I was with my sister at the animal emergency hospital(her cat was not well) and a lady there also with a sick cat asked me if I was on dialysis. Turns out she worked next door to a dialysis unit so she saw fistulas all the time. She was so cool! Then we got chatting about our cats and it just wasn't an issue. Being tired and all that other stuff was just as much an indication to me that I was sick, as the fistula (and of course the lab results backed it up with hard numbers). Try and treat it as part of your body(it is, afterall). Some people hate their knobbly knees, or how big their nose is.. a fistula? what's that in comparision?!
:cuddle; :cuddle; :cuddle;
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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...
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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 :grouphug;
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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...
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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. :cuddle;
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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!!!
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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!!! :bow; :bow; :bow; :bow; :bow;
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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.
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Good luck on Monday. Bring your courage and your whimpy self. It will not be as bad as you think it will be. :grouphug;
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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
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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?
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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.
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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.
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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?
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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.
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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.
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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.
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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!! :cuddle; :cuddle; :cuddle; :cuddle;
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I am scheduled for surgery Monday 15 March at 10 AM. I actually got through the mapping session without shedding a single tear
:clap; :bandance; 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
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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
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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.