Can't believe I'm saying this.

[monrein]

I'm truly surprised to be saying this but I can hardly wait to start dialysis.  I've been sliding downhill fast and am struggling to keep my head above water in terms of how wretched I feel.  You know the story, I'm just one more person caught in a plot I don't like.  I feel like puking all the time, don't want to eat anything, metal ammonia breath is burning my mouth and throat,  headaches starting to appear too regularly,  feel like crying I'm so useless and lethargic all the time.  When I'm out I could win the top Academy Award Honour for faking that I'm hanging in because I don't want my friends to feel worse than they already do (stupid maybe but I always think they might not want to hang out with me if I'm too moany).  I don't pretend with the medical people however.
I visited the self-care unit today and the head nurse was really great.  She seemed knowledgeable, not at all condescending and very accommodating.  We can eat on the machine,  they come around with tea and coffee and they have a spot so I can start anytime.  She also thinks I should see my neph sooner than my scheduled appointment which is 5 weeks away.  She thinks I might be holding fluid in my tissues even though my fingers and ankles aren't swelling yet.  I wish my fistula were ready right now but I'm even ready for a cath so I can begin feeling semi-human again.  Too bad we don't have a whiny, tantrummy, it's so bloody unfair icon.
Thanks for listening to me unload.

[twirl]

you have a good out look on things
they had to drug and drag me to dialysis
  I was like that all the time and now only half the time
you have a cheerful personality
a person sitting next to you will be lucky
how long and how many days was in your sentence
I have a hand held "Family Feud" game , do not get one, it is not fun
at first, people gave me hand held games, boring after awhile
I think you will do great at everything you do

[thegrammalady]

you have an extremely positive point of view. you seemed to have passed the whine stage (don't worry you can do that later) i'm certainly not happy with my "lot in life" at this point, but usually think it's useless to complain about things i can't change (there's that 300 pound gorilla again) you will do fine. you have all of us to whine to and we won't think any less of you. call your doctor and let him know how bad you feel.

[KR Cincy]

You know you can unload here anytime you want.
Wanting to start dialysis is a new concept around these parts, but at least you know the benefits of getting that fluid off you so you'll feel better. It's great to hear the center has room for you immediately and that the nurse is a reasonable, caring person. Getting started again with a cath will simplify things a bit...you'll have time to work back to self cannulating.

Take care of yourself and thanks for not pretending around us...we love ya', icky-feeling or not!!

[petey]

monrein,
You sound like my husband, Marvin.  He went for his three-year, post-transplant check-up, and we got the bad news that his "new" kidney was failing (same disease that destroyed his original kidneys).  His neph told him then (summer of 2003) that the transplant might hang on another six months to a year.  But, just three months later (Oct.), Marvin knew the time had come to go back on dialysis.  He called his neph and asked for a fill-in appointment.  Yep, the neph said, the blood work showed that it was time.

I had a hard time accepting the fact that he was going back on dialysis, but he handled it fine.  He got a perm-cath and an appointment for a new fistula, and he was "off to the races" again.  He actually was excited about starting back!  The first week after starting back, Marvin felt so much better than he had in the previous couple of months.  One of his friends asked him, "How can you be so positive about going back on dialysis when you already know what that was like?"  (Marvin had been on dialysis for over 5 years the first round).  Marvin's answer -- "I'm not positive about the dialysis -- I'm positive because I get to live a little longer, and if that means more dialysis, then so be it."  That was over 4 years ago now, and Marvin's still as positive and happy as he was on October 21, 2003. 

[Sluff]

  I wished you felt better, so sad when you have to look forward to something like dialysis. Glad your spirits are up though and you know what your getting in to. Hope things get better soon. 

[BigSteve]

Mondieu, monrein: If you're feeling that poorly you should get to the nephologist immediately. Your labs are
probably way out of line.  Catheters are not fun, but for a short length of time until your fistula cures, you may
need one.

[oleboy]

My Neph told that I would tell him we I needed to start he said the counts and numbers were just that, and each person would feel different at the same numbers and he was right my numbers were not bad but I felt like death warmed over when I finally started, Vent all you want we all have been were you are at now, just check in with your Neph ASAP, an good luck and keep us updated

[monrein]

Thanks everyone.  I've been having regular blood done (this morning in fact).  My last creatinine  two weeks ago was 2.7 but whatever the numbers I'm ready.  I've had a cath before and if I must of course I will but we all thought that we were on track with the timing.  Oh well.

[spacezombie]

I hope you're able to convince them to let you start dialysis soon! When my transplanted kidney rejected I was stuck in limbo for almost six months waiting for the damn thing to completely fail, while I felt crappier each day. I finally got fed up with the waiting and wrote the UCSD dialysis unit an incredibly jerky letter. That got me a meeting with the dialysis unit ASAP but when I got to the meeting I found that they were under the impression that I had gone to a lawyer! I was thoroughly scolded for my letter but they did let me start dialysis within a couple of weeks.

The moral of the story is: raise a huge fuss and they'll let you do what you want. You know your body best.

Good luck and feel better soon! 

[paris]

Monrein, you are such a lovely addition to this family.  I am sorry you keep feeling worse.  You know better than any doctor how you feel.  I think many of us spend too much time trying to make those around us feel better about our health.  We get really good at putting on a good front for others.   Let us know how everything goes.  We'll keep thinking good thoughts.

[Jay72]

I sure can related to what you are saying.  I have noticed the last couple of weeks that I have been feeing much worse, but then I have a few good days.  I never know if I should call or just hold out until I feel better for a couple of days again.  As I have said before I am trying to wait until the end of June when my job is finished but I am not sure if I will be able to wait that long.  I too have to "pretend" that I am alright to my friends and co-workers because I look fairly well and I feel like I am complaining to people that don't totally undeerstand.  Well hope things work out for you.

[Bajanne]

Wow, Monrein, I feel your discomfort.  Contrary to what Stauffenberg said in another thread, you do get to feel better on dialysis after a while.  I am living testimony to that!  Please take care of yourself.  As Paris said, you have become an important family member.  Please do whatever you have to do. 

[willieandwinnie]

monrein your creatinine at 2.7 is very good actually, but those aren't the only numbers to watch out for. If the toxins are building in your system you will know and my Len says that you will feel better getting your blood cleansed. He said it won't happen overnight but it will happen. Hang in there and we are also here to listen. 

[The Wife]

Before my partner started dialysis, he could barely walk a foot.  After the first session, I was amazed at the difference.  So, yeah, you can be excited about starting dialysis.  Hope all goes well for you.

[flip]

I live in a small town and dialysis is sort of a social event. I get to hang out with my buds three times a week and have fun. I like your attitude, Monrein. I hate dialysis too but I have made the best of it and I'll be damned if I let it take over my life. Give 'em hell, girl.

[paddbear0000]

Monrein--this idea of doctors making one wait until they hit a certain number in their labs for dialysis is ridiculous! If you feel like shit, demand dialysis! 

[monrein]

Paddbear, I think you misunderstood my post.  Nobody has said I need to hit a certain number in my labs for dialysis to begin.  I've been feeling OK but things have started to go downhill faster than I or my team would have hoped.  They have been very responsive to me telling them how I feel now and we are now thinking that I may need to have a catheter and start earlier.  We were all hoping and that includes me, that we could wait for my fistula to mature but that may not be possible so we'll start earlier.  I must be very very clear in telling you how lucky I feel to have the medical team I do and to live where I live.  Now don't get me wrong.  There are problems, there are jerks in the system etc but on balance I feel that I've had excellent care and my neph is my biggest advocate. Your system in the US scares the hell out of me and although have an American passport  I have always been too afraid to live there. 

Sorry to have somehow given the impression that my docs are torturing me.  They're not, ESRD is.

[migaguiar]

If you feel your at the point of  then your probably going to have to get a cath until your fistula is ready.
I remember i was dying to start dialysis and felt so crappy that i demanded a treatment even though my Peritoneal cath was only 7 days old. "1" treatment and a small one at that got rid of my ammonia metal taste. Getting rid of that made me feel so much better.

As far as the healthcare system...........its not the best but its not the worst either
I was actually able to get my gf paid by the county for taking care of me. So you see there is some good and bad. But i dont know if it will ever be improved because theres alot of BIG money involved in the system.

[Sunny]

I hope you get some resolution soon. There is no point in feeling absolutely lousy.
I want to say, though, that I was feeling very lousy too for quite a while. After switching some meds
around, and changing diet, I've managed to remain stable with a creatinine of 2.8 for about three years now.
I'm not saying I feel great, because I don't. I doubt I'll ever feel the way I used to pre-kidney disease.
But I am saying that altering medications made a huge difference for me in how I felt. If my creatinine
level holds out, I could probably go along with this stage of ESRD for a while.It is sort of like 1/2 living at times.
Wishing you well.

[kevno]

I feel for you, I had to wait one year longer than I should to get on CAPD I refused to go on hemo. That bloody needle phobia  At the end, even if someone touched me a bruise would appear. Then I had a 24hour nose bleed which finished the transplanted kidney off. Never felt well with that kidney. But once on CAPD i felt 100% better, even better than with the transplated kidney.

[migaguiar]

Wow, Kevno, i would hate to lose a kidney.....in any way fashion or form. Especially if it was out of your control.
I hope things turn out before for your next kidney.

[st789]

Thanks for sharing everyone.  I love you all bc only here I truly feel 100% connect with happily living with chronic illness.
I feel truly bless waking up each day with a working kidney transplant.

[monrein]

Well I've been on dialysis for almost three weeks now and I feel like a whole new person.   So far at any rate.  No nausea, coming off a whole mess of BP meds, urea at 1.5, potassium and phos good etc.  Starting on some iron infusions and generally getting things sorted out.

We stick my new fistula for the first time next week sometime and we'll start buttonhole establishment.

I gardened this morning and even did a few pretty physical chores out there with no problem.  Went to the gym yesterday and did 20 minutes on the treadmill, 10 minutes on the bike and some weights as well.  Starting back slowly but felt really good and not like a walking corpse for the first time in at least 6 months.  Appetite is back and I'm overwhelmed by the difference in everything since my first post on this thread.

I want to thank everybody for all their tips and good wishes and encouragement.  They meant a lot to me and I want you all to know just how much they're appreciated.   

Gail (aka The Baroness Monrein from the realm of IHD)

[Sunny]

Yay!
I'm so glad to hear dialysis is making you feel better and providing you with more energy.
That is good news.