Oof

[decaffeinated]

Just spent a good amount of time writing my introduction when my keyboard fritzed and the page refreshed before I finished. I'M AWESOME

But hello! My name's Ama, and I'm 32. I was on dialysis from mid 2010 to early 2014, and have had my transplant for four years. My kidney failure was a surprise, caused by a disease that I didn't know I had. I had a biopsy, was hospitalized, got a chest catheter, was diagnosed with systemic lupus erythematosus, and started dialysis all on the same day. I had been so used to feeling increasingly awful every day for years from my undiagnosed autoimmune disease that I hadn't even noticed my kidneys had failed. It probably had been happening in slow motion since my teens. And the award for the most clueless goes to...

I wish I could say I was one of those people who had a positive philosophical breakthrough and gained some sort of zen-like mindset that some people get from having severe illness, but no. I hated every second of dialysis. I was a hemodialysis patient. I was lucky to be young when I was on it, and that made it a lot easier physically, which was good because other forms of dialysis were not an option for me. I had very good labs and made friends with the other patients. Still, most of what I remember about those days is negative, especially when it comes to the workers at my dialysis center, whose moods were unstable, competency questionable, and compassion intermittent. I acknowledge that may seem harsh to say, but I've got two nearly immobile parents and I know a thing or two about caring for people all day. On a positive note, I think my perpetual frustration at dialysis was responsible for keeping my blood pressure from crashing.

I was a living donor kidney recipient as part of a paired exchange, thanks to my sister in law. I had some complication with a lymphocele that resulted in a second surgery a week after the transplant. Speaking of, I'm set to go to my annual transplant review tomorrow morning, which I'm dreading, because my GFR and creatinine have become garbage over the last year, I've got a lot of wonky symptoms that aren't attributable to my lupus because it's not currently active, and it's not looking good for me. I had rejection last year, and I'm terrified that it's happening again, and that I won't recover this time. I don't have a support system and I'm not as young as I was the first time, and I don't know if I can do dialysis again. My support system is nonexistent, my body is tired, I just don't know.

My non-being-paranoid-about-my-kidney hobbies include quilting, drawing, walking my dog, video games, writing novels for introduction posts, and drinking endless coffee.

[iolaire]

Welcome to the group. I'm glad to hear your lupus is not active.  I hope that it will stay that way long enough to be called in remission. 

My kidney damage from lupus active in the early 1990's (high school) and its been in remission since say 1995 but it was not formally declared as such until early 2000 once I moved beyond the temporary rheumatologists I had at college.  Lupus cased scarring leaded slow decay and increased blood pressure until the final move to dialysis in 2013.

[MooseMom]

Welcome to IHD, Awesome Ama!  I hope we can be a good support system for you.  I don't know what I would have done without IHD in my corner.  We're AWESOME, too, so you'll fit right in.

Can you tell us more about your wonky symptoms?  What kind of "garbage numbers" have you been seeing lately?  If you've had a rejection episode in the past, of course your mind is going to lead you down dark alleys.  And if you've spent time on dialysis, well, those alleys become much darker.

I don't blame you for being nervous about your review tomorrow morning.  It's a special kind of dread, isn't it.  I have a jippy tummy just thinking about it.  I'm eager to know what your docs tell you tomorrow, if you feel like telling us.

"Frustration" as a treatment for low bp has appeal!  I've never thought about it that way. 

I am suspicious of people who bear chronic illness and a treatment like dialysis with a zen-like mindset all day, every day.  It is not a moral failing to hate dialysis or to be furious with the realities of it.  Note the name of this forum!

[cassandra]

Welcome to the site Ama


   


Take care, Cas

[kickingandscreaming]

 , Ama. I hope your meeting goes well and that you'll report back.

[Charlie B53]

Hi Ama,

And Welcome to our IHD 'Family' of the afflicted.

Quite truthfully I am very fortunate not to have serious problems with Hemo Dialysis.  The thought of even a 3 liter take-off and the crampsp that causes me scares me into staying VERY careful with my fluids.  That fear extends to the fluids in foods.  Needless to say, I stay VERY careful.  My Monday take-off is usually 2.5 or less.  In the Summer I am outside in the yard, garden, or want to go fishing so there are a few Mondays I've come in as much as .7 UNDER.  Yea, that's awful scared of taking much more than a large mouthful of a drink.

So when I hear of anyone that has problems with Dialysis I immediately assume (maybe wrong) that they have yet to learn how to take serious control of their fluids.  So forgive me if I am wrong, but you can teach me things.  I've only been on Hemo about 14 months.  It was quite the change from doing PD at home my first 3 1/2 years.  That was neat, NO diet or fluid control at all.  I could eat anything and everything, as much as my weight would allow.  And drink like a fish.  I always had a jug of ice water within reach.   NO MORE!

PD was a minor miracle.  I had been steadily gaining weight the last 15 years since breaking my back and was over 300.  On PD with a coonstant 'fill' I always felt full and couldn't eat much.  So I stopped my of the processed carbs, white flour, and started losing weight, 100 in 2 years.  So it is safe to say PD has saved my life.  Hemo is continuing to keep me alive and in reasonable health.

Like I said.  I am one of the fortunate ones.  I hope you manage to adjust and do well also.  Any questions PLEASE ask.  There are many of us here that manage to do alright.

Take Care,

Charlie B53

[SooMK]

Welcome Ama!

[kristina]

Hello Ama and welcome to IHD.
This Lupus-SLE has lots to answer for, that’s for sure! Another problem is, of course, that SLE-sufferers  hardly ever look sick and that makes it even more difficult to get a diagnosis; I remember doctors telling me that I surely “can’t be sick” because I look so well...
As you can see, I also suffer from SLE, I am now on haemodialysis and hoping for a transplant, hopefully as soon as possible.
I am wondering, how doctors can actually determine, whether or not you are in a flare-up ? I wonder about this, because I surely have been in Lupus-flare-ups on many occasions, but it did not show in my blood.  That makes me believe, that I was extremely lucky on the day when doctors checked me on Lupus and I happened to be in a flare-up and it actually showed in my blood, mind you, I was hospitalized and could hardly move. but I still "looked good" ... It must have been my very lucky day because otherwise I still would be wondering and there would be yet no diagnosis ...
When you mention that your creatinine and GFR have become “garbage”, what does it mean ? Do you mean your creatinine and GFR-readings  are “all over the place” and your blood-results are not telling whether or not you are in a flare-up? Does the Lupus affect your kidney-transplant? And if, how? What do you mean by “wonky symptoms”? Is it another “SLE-fog” or is it something else?
As you can see, I am very interesting in Lupus and transplant. Since SLE is very rare, it is even rarer to come across someone who has undergone a transplant.
I do hope you were lucky at the annual transplant review and I send you my best wishes from Kristina.

[Paul]

 
Hello Ama, welcome to the site.

I don't have a support system and I'm not as young as I was the first time, and I don't know if I can do dialysis again. My support system is nonexistent, my body is tired, I just don't know.

The final decision is always yours, however I would point out that I am 54 with no support system and I cope. There are several people in their eighties, and some in their nineties at my clinic who cope. One not only has no support system, but acts as support system for his wife who has severe Alzheimer's. The general opinion is "dialysis is hell, but it beats the alternative".

Just spent a good amount of time writing my introduction when my keyboard fritzed and the page refreshed before I finished

Been there, done that. But I can tell you that it is even more annoying when you spend ages typing a post and a moderator accidentally deletes it. Then they post and ask you to type the whole thing out again!