I'm struggling a bit

[malaka]

Just got the word.  Friday afternoon is appointment number one.  Would have been tomorrow, but I'm getting my PD evaluation tomorrow. 

I have to look at it this way.  When diagnosed with membraneous nephritis, I knew there were three outcomes:  get better. stay the same, or go on dialysis.  No way to tell then which I'd be.  So I drew the short straw.  Nobody could do anything about it, including my nephrologists.   

So I have to look at it this way.  I'm on a transplant list.  I've treatment options without dialysis.  I can either start dialysis or die.  Duh....  So, I am evaluating the dialysis options.  If PD isn't appropriate, then I'll investigate home dialysis.  I'm trying to avoid in center hemodialysis so I can maintain some semblance of a normal life.  What else can I do?
 
Sure, I know that as of Friday, my current life is over.  I don't see dialysis as some adventure or anything desirable, but realize that my choices are limited.  So I am accepting of this turn of events. 

[Joe]

Malaka, that's about the best we can do. Realize this is the page of our lives we are on and live it. Good luck!

[MooseMom]

I don't see dialysis as some adventure or anything desirable, but realize that my choices are limited.   

As long as you don't call it a "journey"...

I know your choices are limited, and I know you just have to suck it up and get on with it, but still...

Well, don't let dialysis disable you.  I think that is what frightens me the most, that I'll just be plopped down into a chair, hooked up to a machine and gradually become more and more of a shrunken husk, unable to do anything other than return in 2 days and do it all over again.  There is just not enough emphasis on physical rehabilitation of dialysis patients in this country, and if you are going to dialyze to live instead of live to dialyze, then you just have to do it yourself, and that doesn't seem right.  So, once you are able to take your dialysis home, either PD or home hemo, then I guess that will make it easier to accept this turn of events.  It's one thing to just placidly accept your doom, but it is quite another to take things into your own hands as much as possible, give yourself the best chance to live a good life on dialysis, and THEN accept it.

I'd be interested to know what you are thinking and feeling as Friday draws near.  You could be very instructive to the rest of us who are right behind you.  I have no idea how I am going to cope, so if you could be generous enough to describe how life seems to you between now and Friday, I'd really be grateful.  That said, I don't want to intrude..

I'll be thinking a lot about you over the rest of the week, and I am eager to know what you decide about PD.  I hope Friday goes well.

[malaka]

Tube and liquids or needles and a machine.  Or maybe I'll graduate to tube and a machine.  What I'm looking for now is the least intrusive dialysis method.  And having spent a lot of time on line, here and elsewhere, it seems to me that PD (whether manual or automated) is the least intrusive dialysis method.  So I'm hoping I qualify.  With two old abdominal surgeries and diabetes, I'm not so sure.  But I'm not ruling it out. 

Like you, I have little desire to be strapped to a chair with needles stuck into me to live.  I don't want to live for dialysis.  One nagging thought, however, is that as of Friday I'll be joining the 20% mortality per year group.  That isn't exactly comforting, you know. 

At least I'm starting slowly as my GFR is still 13.  Its the darn nephrotic syndrome and difficulty with fluid that makes my nephrologist want to start me on dialysis.  Hemodialysis in the center to start so I can get my meds rebalanced under (hopefully) watchful eyes.  He expects only 2 hours per session to start as I retain some kidney function.  So I'm expecting the main purpose of this dialysis is to draw off fluid.  I've gained 10 pounds in about 3 weeks without any change in diet or activity level.  Maybe dialysis will draw that down in about the same length of time.  Talk about your crash diets!  Fortunately, my fistula was put in last summer and is fuly "mature". 

[MooseMom]

Oh geez, yeah...that 20% mortality per year stat.  Stuff of nightmares.  Now, goodness knows I'm not Little Miss Sunshine, but even I know that such statistics don't come anywhere near telling the whole story.  There is also that "five years survival rate" on D stat that is misleading.  Now, my mother survived 5 years, but then she was 77 when she started D, and whenever I would accompany her to dialysis, it didn't escape my notice that most of the patients were elderly and had a whole host of other problems.  And most of them weren't healthy enough to qualify for a transplant.  So, there are lies, damn lies and statistics.

If you can do dialysis at home, you can avoid a lot of the things that cause illness and hospitalization in the first place.  A hospital is a dangerous place for a dialysis patient...all of those sick people!   

[amanda100wilson]

I should have died about  18 years ago, given that I have had CKD for getting on for 23!  Stats don't tell everything, and although I know a goo number of people personally both on dialysis and with a transplant, I know of only one or two who have died (none from the latter).  Ignore stats. Or you will make your life miserable worrying about it.

[malaka]

I flunked this test.  The nephrologist I saw was very honest.  PD = 700 to 1000 calories of dextrose (sugar) per day which isn't good for a diabetic patient, puts pressure on old surgical scars with an elevated risk of herniation, and most concerning to him (pay attention MM) was my nephrotic syndrome. 

Those with nephrotic syndrome have low blood albumin (protein) which causes the liver to kick out more cholesterol and triglycerides.  I'm one of them.  I failed Lipitor therapy (some enzyme called CPK rose too high) and the doc told me that PD causes additional loss of albumin which increases further cholesterol and triglycerides levels.  Those, as most of us know, are bad for hearts and brain circulation (i.e. stroke risk).  So, for those reasons, he told me that I wasn't a good candidate for PD as first line therapy. 

Therefore, he recommended hemodialysis with training for home hemodialysis on the NxStep machine.  While he said I could still try PD, the cardiovascular risk in my case made it less desireable than hemodialysis.

Oh well, at least I know.   

[MooseMom]

Malaka, I'm afraid I wasn't clear on another post of mine.  I've reread it, and I had posted that "nephrotic syndrome is an umbrella term for any renal disease."  That's incorrect, of course.  However, to be clearer, "nephrotic syndrome" IS an umbrella term for a certain kind of renal disese, mainly those where the glomeruli are damaged, the result being loss of protein, hyperlipidemia, generalized swelling and low albumin levels.  I have fsgs, which is evidenced by nephrotic syndrome (just to make things more confusing).  I have all of the above symptoms save edema, although I am beginning to suspect that I DO have generalized swelling but it is just not obvious to anyone but me.  So, apologies for not being clearer!

I had incredibly high levels of blood lipids before starting treatment 7 years ago, but fortunately, the aggressive treatment (I take three different meds for high chol/triglycerides) prescribed has worked and has not caused me any problems.  What do you take for this problem if you "failed" the lipitor therapy?  I was started on Crestor but had an allergic reaction, so I'm taking pravachol which is older but generally safer.  Did lipitor adversely affect your liver?  Is your cholesterol pretty much under control now?

Funnily enough, my neph intially suggested PD to me (despite the nephrotic syndrome, which seems contradictory to what your neph told you), but for my own reasons, I've decided on home hemo.  But I understand why PD is appealing, and I'm disappointed on your behalf.  Still, I'd hate to see any therapy just cause you more problems.  I'm glad that he is amenable to home hemo, though!  I am hoping you will post more about how Friday goes and how you will begin your NxStage training.

Are you terribly disappointed, or are you OK with this?

[malaka]

I take Welchol (which also reduces blood sugar levels for reasons unknown to science) and Tricor which is an anti-triglyceride med.  Damn horse pills, but.......


Tomorrow, Friday, at 2:30 the "big adventure" begins.  I won't call it a journey, don't worry.

[MooseMom]

OK, 2:30...I'm going to note that in my calendar.  I really hope everything goes well.  I'm sure everyone will take good care of you, but I know that it will be a landmark day, nonetheless.  I will be most anxious to hear how it all went, so please post when you feel like it.   

[KraigG]

I've known for about 3-4 years I was going to go on dialysis. My transplanted kidney took that long to take its final breath.

The last 2 years sleep has been elusive. Even if I go to bed at a normal time, I wake up around 3 am, stay awake for 3-4 hours, then back to bed. Now, I can't get to bed until 5 or 6 am. It's 5 am now, and I'm still wide awake. Tired during the day, obviously, but not enough to fall asleep at a traffic light.

I think there's caffeine in the stuff they put in the machine

[malaka]

Boring, but I survived. I'll post more when I have a tolerable keyboard.

[rsudock]

Moosey I am so sorry I missed this post my dear friend...I am sorry you are feeling fatigued...I hate that feeling. I still feel like that post transplant...it is so annoying...I am honestly thinking maybe UPPERS are the answer???

Hang tough the best you can....

xo,
R

[MooseMom]

malaka, I'm glad you survived!   I have been wondering how you were doing, but I didn't want to nag you and figured you'd check in with us when you were ready.  If "boring" is the worst of it, then I'm glad for you!

rsudock, it was just me whining again.   But I'm not happy that you are not feeling better.  Having a new kidney is supposed to make you feel better!  Didn't they teach you that in transplant school?   Is there a particular reason you're not feeling good?  Is there a specific problem?  I hope something can be done for you.  You've been through so much, and you deserve to feel good again!

[malaka]

Session #1 was 11 pound weight loss in three hours!  Session #2 was a failure -- too much clotting.  So I went to surgery yesterday for a lroto-rooter job on the fistula.  Returning for session today.  We'll see.  While boring, dialysis isn't as bad as I thought it would be.

[rsudock]

I just think the last month dealing with CMV and then some sorta of flu has taken me awhile to get back to my normal level of tiredness ya know? I am just now this week starting to feel decent again...thank heavens!  I just got to use to being 10 years out with transplant, feeling like a normal person that I forgot how it feels during the first year of transplant...oh their I go now whining!!!

   Moosey and Rsudock!

xo,
R

[MooseMom]

Actually, R, your "whining" is instructive because it serves to remind us that while transplantation is a miracle for those lucky enough to benefit from it, that doesn't mean it is easy.  People need to know that.  So, thank you for the reminder!

[malaka]

Session 2 (a successful one unlike the first session 2) was easier.  I'm settling into the routine.

The most troubling part, and it may be center-specific, is looking around at all the other patients.  It reminds me of a scene of a combat hospital with missing limbs, masks on some,
some moaning and groaning.  Lots of people in wheelchairs, using walkers, etc.  One can only wonder whether the aging process is accelerated by CKD and/or dialysis.  It certainly makes transplantation lok more desireable than before.   The thought of permanent anti-rejection meds and dietary restrictions seems only to be a minor inconvenience compared to what these patients struggle with every minute of every day.

The staff is upbeat and attentive. 

I've applied for Medicare and SSD.   Maybe I'll be able to work some day, but now my life is centering around dialysis appointments.  I chose MWF afternoons to minimize inconvenience, but that's still a good part of the work week.  Working for myself, I can take all the unpaid time off I want, but the payroll, rent, etc., doesn't change.  Not practical to keep the shop open only part time, and I don't want to be paying for my own job. 

The strangest part is that the dialysis machines sound like high end dishwashers ... a quiet liquid swooshing noise which doesn't prevent me from nodding off.  Taking a nap, however, is a little troubling to the staff who appear to be concerned whether I'm dead or alive!

[MooseMom]

Several years ago, I had to go to my clinic for an appointment with the renal dietician.  I saw a lot of what you say...patients wheeled in and out on guerneys because they were incoherent, lost of patients in wheelchairs who were either elderly or amputees or both.  It was all I could do to keep from freaking out as I was talking to the dietician.  I couldn't wait to get out of there.

I've seen the same things in the various clinics my mother attended, both in her home city and in other places as she travelled to visit family.

I had an aunt who had kidney failure and dialzyed for 7 years until she died just short of her 90th birthday.  I suspect that as we live a longer time, things like kidney failure are just more common.

[Mr. B 123]

Malaka,

Thanks for sharing your experiences.  Hope all goes well from now on.  Sounds like we have a lot in commom, 59 years old, got a fistula last summer, run your own business and just trying to survive.  I will watch for future posts from you as I think I am not far behind you in my kidney condition.  I see the kidney doc on Monday and hope the report is positive and I will be good for another 3 months until the next blood tests.  I also see you got a Kindle, how do you like it? I got a Nook, pretty neat machine.  Take care!

[malaka]

It seems to get easier each time.  The dialysis machine doens't sound alarms as often.  Maybe my fistula is growing?  THe kindle is good, except I have not figured out how to open email attachments yet.  So I'm missing all the jokes!

[malaka]

If its not one thing, its another!  Dialysis is going easier (no alarms in the past few sessions) BUT..... nephrologist stopped by and said "we are going to increase your time on the machine from 2.5 hours to 3 hours.  Depending on your urea levels, you may need even more time."  Why this matters, (other than dialysis is B O R I N G) is that I'll be moved to earlier treatment start times, which makes my attempt to continue working even harder. 

I'm not thrilled with needing more time, either, as it makes me question how well dialysis is working.  You don't get quite the information about blood chemistry in a clinic that you can get in a doc's examining room.

[MooseMom]

If its not one thing, its another!  Dialysis is going easier (no alarms in the past few sessions) BUT..... nephrologist stopped by and said "we are going to increase your time on the machine from 2.5 hours to 3 hours.  Depending on your urea levels, you may need even more time."  Why this matters, (other than dialysis is B O R I N G) is that I'll be moved to earlier treatment start times, which makes my attempt to continue working even harder. 

I'm not thrilled with needing more time, either, as it makes me question how well dialysis is working.  You don't get quite the information about blood chemistry in a clinic that you can get in a doc's examining room.

This is a really big problem, this problem of how much time you need to dialyze.  On the one hand, having to sit in that damn chair for longer than absolutely necessary can't be fun at all, and it absolutely does interfere with getting to work.  If it is true that you don't live to dialyze but, rather, you dialyze to live, then much more effort should be made in making dialysis fit into the world of employment.  The whole original idea behind dialysis was to "rehabilitate" renal patients and return them to happy and productive lives.  That's why in the beginning, people would dialyze at home on their own time.  But now that dialysis has become big business, there is not so much effort put into fitting treatment into your life.

On the other hand, the longer you are able to dialyze, the better your health will be.  I am not sure it's true to say that dialysis isn't working, rather, your dosage needs to be changed in the same way that a pill might not work as well at a lower dosage than at a higher dosage.  More time SHOULD meet better outcomes, but it does come at a price, ie, time on the machine.

I would think that you could get the same info about blood chemistry if you ask for it.  I've read lots of posts from IHD members who insist on getting full lab results as opposed to those silly "report cards" with smiley or frowny faces on them.

Keep us posted, OK?

[malaka]

I foound out yesterday that they only draw blood for labs once per month so that's why I haven't gotten new information.  I will next week.  Apparently, once you start the Big D, the insurers only pay for monthly labs since you're not being treated for possible cure, just maintaince.   Hmm.......

[mamagemini]

I wanted to chime in here...I too am exhausted every day. Especially around 3 to 4. I use to take an hour nap and now it is up to 2 hours. But then at night I am up late, such a vicious cycle. Nausea too has set in, that whole nauseousness but hungry feeling is weird. Brain fuzziness is another thing I deal with too. A friend who had a transplant and dealt with different dialysis told me to try B12 every other day. It works on good days. Green tea is another thing I use for the mornings because I work full time and a part time job. When I get to the part time job I am done. Don't know how long it will be before I let that one go.
Those definitely are not cures but they get me through the work day.