Hello eveyone

[ToddB0130]

My name is Todd and I've been dealing with my kidney disease for over 5 years now.  About a year ago, my nephrologist starting talking about my creatanine going up steadily over time and indicated it was time for me to start looking into dialysis and potential transplant.   I'm scheduled for the fistula surgety this Thursday.  I am sad, anxiious and really stressed out (REALLY helps the blood pressure !!).   I know there are others that deal with this,  but I am having such a hard time getting out of my own head with worry and fear about this new normal I'm about to begin.  I am 47 years old and plan to keep working.  It willl take some big adjustments and change is tough for me.  I deal with lots of health issues and this one is my most overwhelming one.   

[Rerun]

Hi Todd and welcome to IHD.  I'm so glad you found us.  Have you looked into (PD) Peritoneal Dialysis?  Much easier if you are working and you do it at home.  You can also do hemodialysis at home with some training.  If you live close to a dialysis center maybe conventional hemodialysis would be easier for you.  I guess I'm saying don't let the doctors tell you what type of dialysis you are going to do.  You tell them.

IHD is a great place for questions.

Rerun, Moderator      

[ToddB0130]

Thanks Rerun.  I have checked into both and, for now, I decided to go with in center hemo.  I spoke with the case manager from my insurance company and she said if I decide to switch to PD sometime down the road,  I'll be able to.   Right now,  with other health issues,  I feel better having professionals work directly with me once I start this (although some of the 'horror stories' I've read on here about in center give me pause ....).

[MooseMom]

Hi Todd.  Your sadness and anxiety are understandable, and I'd worry about your sanity if you were not experiencing these feelings.  Initiating dialysis is a truly life-changing event; there's no way to spin it.  One small word of solace; of every coping mechanism I tried for myself, making friends on IHD and using this forum for support and information has been by FAR the best therapy.  I hope you find the same holds true for you.

I am sorry to hear that you are dealing with other health issues.  ESRD is bad enough without having to cope with other maladies.

I am very curious to hear how you plan to keep on working while you dialyze in center.  Is your center accomodating your work schedule?  So many clinics can't be so accomodating, but if yours can, you are extremely fortunate.  It used to be that the whole point of dialysis was to rehabilitate patients to the point that they could return to work; in fact, this was achieved through much higher rates of home dialysis than we see in this country today.  Now, in center dialysis usually means instant disability for most patients, so if you are able to avoid this trap, then you are to be congratulated!

[ToddB0130]

I am in management at the company I've worked at for 25 years.   My manager has indicated she is willing to work with me as I transition.  I'm planning to do Tues-Thurs-Sat on the earliest shift (6AM ...Ugh) and try to work from my laptop during HD and then go to work.  I'm hoping I'll feel well enough after the treatments to work the rest of a 'normal' day (however late that might need to be).   If I see it doesn't work out that way,  I'll do what I have to to switch over to PD.   The healing from PD isn't as long as it is for the fistula,  right ??  And it will give me time to clean up my place better so I'm prepared if I have to do this at home.  I live alone,  so I believe home HD is not an option .... right ?   THANKS FOR ANY INFO !!!

[RichardMEL]

G'day Todd & Welcome to IHD!

Your fear of the unknowns as to what dialysis will do to you and your work/lifestyle are absolutely justified and understandable - specially from all of us who have been there ourselves.

I would like to think that if your general health is OK you should probably be OK with working with dialysis - it is a great help your manager is willing to work with, and support you, and I am sure helps with the BP quite a bit to know you have that support.

All I can suggest at this point is that you WILL have a period of transitiion initially to being on dialysis - first getting used to the procedure and the schedule, but also as you stabalise there might be some ups and downs. This can take a few weeks to a few months. In general most sessions are exercises in sheer boredom - and trust me that's what you want.

There are plenty of folks on here who work full time jobs while doing dialysis - and there examples of folks doing work while on D using laptops, wireless or their phones. I would say, as you have identified, the biggest potential issues are being washed out/tired after treatments (which can happen) and what you may need to do to work with that.

I too did T/T/S schedule (afternoon) so I could get the most time at work I could, even though my boss too was very supportive - I found working to be VERY good for me - both the social aspects of seeing my co-workers and mates but also doing something positive (well, work mostly is!), earning $$$ and *NOT* focusing on just the medical stuff. I think I would have gone mental sitting at home doing nothing just thinking about the next treatment etc. In general it worked pretty well for me - I found the afternoon was good because I could go home and crash after D and be pretty good the next morning for work - your mileage will probably vary as everyone's does.

Anyway welcome to IHD. Hopefully we can help you along this journey with any questions or fears or whatever you want to discuss. Many of us have been there and know what it is like - the biggest fear at thi stage is the unknown of what will happen once you start - but you seem pretty well prepared and that is perhaps your best asset. Coming here I hope will help with that also!

RichardMEL, Moderator

[lmunchkin]

Welcome Todd, to IHD.  This site was a Godsend to me and My husband.  PD is an excellent modality for people who work.  Especially on the cycler at night.  We did it for 5 years and had very little problems with it once we got going with it.  The supply's are a bit much at first, but you learn what you need and you will order according to your needs. 

I know that you feel a ton of bricks have fallen on you!  And in reality, it has, but you like others on this site, must place those bricks "one by one" back in their place.  Dialysis is not perfect, but it can be done!  Educate and learn from others here on what to do!  I not kidding, this site is AWESOME!

Just keep your head, take a deep breath and conguer this disease!  Don't let it get ahead of you,  You get ahead of it!  Research every option you have and then decide.  If it doesnt work out, then change until you have what works for you.

My husband worked for seven years with ESRD.  He just couldnt do it anymore, and Im so proud that he did it as long as he did. He, like you has other health issues.  But that didnt keep him from working, he does have a stubborn streak in him.  But his vision and the daily grind just got to be too much, so he gave it up Jan. this year!

So Todd, yes it is a devasting disease, but it doesnt have to be the end of the world.  Just face it with your chin up and do the best you can do! I don't have this disease, but I do live with someone who has it, and it is hard to see our love ones going through this.

You ask anything you want Todd.  We are here for you and welcome again to IHD Family.

God Bless,

lmunchkin

[ToddB0130]

Richard & LMunchkin ---- thank you so much for your warm welcome and kind replies.  Hearing from both of you is great and encouraging.  (obviously I'm stressed, it's 3:30AM and here I am !!).  With my fistula surgery 3 days away,  I'm struggling with whether I've made the right deciision.  I'm going to go to the threads on PD today and read up on those.  Potential for infections scares me (even though I have someone come to my house and clean every two weeks, I worry),  all of the "measuring" and wondering about taking off too much fluid scares me.   It sounds stupid to ask,  but does a vascular surgeon do BOTH the fistula and the PD surgery ?   Can I make a last minute decision and say "Hey, I'm going to go with the PD surgery instead ??".    Like I said,  I know my insurance company said I can switch, but once the fistula is in,  iit's in for good......  (hey,  maybe I'll show up and say "While i'm here,  give me BOTH "......... HA !!!

[RichardMEL]

I can only cover a couple of your concerns from my point of view.

Have you made the right decision? Nobody can really answer that - all I can offer is that the fistula is the best form of vascular access you can have for dialysis. Certainly in terms of hemodialysis you'd want one over a catheter or graft. As for the PD v. Hemo argument - I'm not qualified to comment as I was never a candidate for PD due to my own concerns about both the infection risk and handling the exchanges - due to my poor eyesight and co-ordination (I'd probably needle the cat !) and that worry. When infection risk is discussed it's less about having a dirty house(though oc rouse that is a factor for anyone really) but more keeping the access area clean and being super sterile when plugging in to the catheter because the perotineal cavity is sterile and it's easy for germs to get in and cause bad karma if slight errors are made. So that's why i didn't go near PD - oh and the whole bathing issue doesn't sound like much fun to me. Definitely getting educated on your choices and options - even at this late stage prior to surgery - can't hurt!

About the measuring and worrying about fluids part of it - and by extension the diet - be aware that everyone is different and handles things better/worse than anyone else. I was very careful about my fluids and diet, but to be honest with you after awhile it just became second nature and not something I really thoughtabout on a conscious level - I knew what foods to have and in what kinds of quantities and I knew what to avoid and when, and drinking - well I had almost trained myself to not need/want drinks fo hours at a go (so much so that drinking again now I'm allowed to again can sometimes be difficult - I'm still retraining myself!!). Others find it hard. Very hard. The other thing to note is that not all dialysis patients have the same restrictions. I knew some folks on hemo on my shift who had NO restrictions due to residual function and so on and they went for it, and by the same token everyone's dietry restrictions might be slightly different due to each person's situation - hence the fun and special times with the dietician.....

I quite understand your stressing and worrying. I guess all I can offer from my own experience is that I tended to look at it this way - it's happening, not much I can do about it except handle what comes along when it does. Staying up worrying about stuff that may not wind  up being an issue didn't seem to help much. The fistula surgery, for example, is very standard and should be done without incident - however some folks have had problems and complications. Chances are you won't be one of those, but you never know. When I was facing my surgery knowing this I figured really... it was up to Fate. If bad things happen we'll deal with it then. They didn't (I was lucky) and I got on with it. Same with starting D. The best thing you are doing is getting informed so you can be as ready as youpossibly can be. You already have it better than I did as I did not know about this site when I started, and it was only through some wonderful nurses that I came to know much more about things and become involved in my treatment and informed rather than a sheep. I am confident that helped me deal with a lot of things much better.

I have a feeling you will be very similar.

[CebuShan]

Welcome to the IHD family! Glad you found up early, I had been on dialysis for over a year before I did. It has been such a comfort knowing I'm not alone. Ask all the questions you need, someone is bound to know the answer! And don't worry that someone else may have already asked the same thing, unlike some other sites, we don't mind! Again, welcome! Come back often!   

[Joe]

Hi there Todd, and  , hiope you find a lot of information here at IHD.
I'm a PD practitioner, and thoroughly love the freedom it gives me to continue with my work schedule. And I get the impression we are pretty close in organization levels, I too am a mid level manager with one of the major aerospace companies, and also have a lot of support from my director. I won't try to address everything about PD here, but will respond to your direct comments; measuring output is as simple as weighing the drain bag when your done if you're doing manual exchanges. And my PD nurse provided the scale I use, so it's drain, clamp and hang the bag to see what I got. As I'm on the cycler now, it measures everything for me. All I have to do is take the readings at the end of the cycle. The only time I've pulled too much fluid off, have done that once and it was pretty apparent when it happened. That was while I was getting started. Now that I'm pretty much in the routine, I'm feeling better, working during the day and dailyzing at night. And there are no needles with PD, you are just connecting to your Catheter. You do have to be clean while doing this, but it's a routine you get into and really becomes second nature after a couple of weeks.

Good luck to you!

[Mr. B 123]

Todd,

Don't worry about the fistula surgery, had mine done in June 2011 and it wasn't so bad, but then I have had 4 other surgeries in the past 10 years and compaired to those, the fistula was by far the easiest, no problems at all.  I also thought a lot about hemo or PD, and I read everything I could about the good, the bad and the ugly of each and also asked a ton of questions to my nephrologist and nurse practitioner and decided to do hemo.  My neighbor did PD and she had quite a few problems, and that was a factor in my decision also, good to have first hand experience from her.  I think you and I have made the right choice for us and now we can just sit back and let God help us thru this.  Take care and I hope the fistula surgery goes well!  Let us know how your are doing when it is over.  Good luck!

[willowtreewren]

Hi, Todd.

Yes, not knowing how you will do can cause anxiety to go sky high. If it helps at all, as soon as my husband went on dialysis, he felt ten years younger! The decline in how he felt had been so gradual that he had simply accommodated. The change from getting his blood cleaned was nearly over night!

I hope you see as much positive from dialysis. The main thing is to avoid having too much fluid taken off at one time. This may be tricky at first, but if you can do that, you will have a better chance of feeling all right after dialysis. 

Welcome to IHD. There is lots to learn here.

Aleta

[MooseMom]

Todd, there are people here on IHD who do home hemo alone, namely Bill Peckham.  He dialyzes at night using NxStage.  Also, our member tyefly did nocturnal home hemo alone and has authored some great threads about it.  She has recently been transplanted, but her past experiences have been invaluable to us.  If this is something you might decide to do in the future (if you get fed up with having to organize your work day around the clinic staff's schedule), you will probably get resistance in that they will insist you train with a partner.  But that's to cover their own butts.  Anyway, the ideal for you just may be to do your dialysis at night and at home either with a PD cycler or home hemo.  Whichever decision you make is not carved in stone; you can change your mind.  No matter how educated you are, it is hard to know exactly what will work for you until you've actually started D.  My advice is to be patient with yourself as you go through what is a difficult transition by any definition.  And staying employed and intellectually active will prove to be a godsend, so best of luck in that regard!

[lmunchkin]

I agree with Moosemom about being patient with yourself.  Its hard to do Im sure, but would be to your benefit if you did.

When my husband was first diagnosed with ESRD, we went to a Frescenius clinic to discuss our options. We had settled on PD. Yes, your Vascular Surgeon can do both PD cath and fistula. We had cath put in for PD, and it really was a great modality at that present time (looking back), but after 5 years and a couple bouts with peritionits, he could no longer proceed with PD.  But there are some on here that have done it for lots more years than 5.  It is just another FORM of dialysis, but is still dialysis nonetheless!

Then he went in center to do hemo 3 days a week for almost a year, before we went home with NxStage.  His VS put his fistula in also, when he started hemo. He feels so much better doing D. every 5 to 6 days a week, versus 3 days in center. 

Todd, when you do decide on what you want to do, just try it!  If it doent work out, then change to another option!  If Home D. is where you want to be, then know that whether it be PD or Hemo, those training nurses WILL NOT release you to home unless you are comfortable in your treatment.  They will show you how to calculate your fluid removal.  They are experts at this, and they train new patients all the time.  They will help you through whatever hurdles you come across.  Don't be afraid to ask lots of questions!  The dumbest question ever, is the one never asked.

Relax, Todd!  I know it can not be easy for you with it being new, but you will see what I and others tell you on this site, that it will get better!

Keep us posted on your progress!  Know that IHD is here for you!!!!!

God Bless,

lmunchkin   

[bleija]

as a patient that has done both hemo and PD, i dnt think ur gonna feel well enough to put in a full day after a hemo treatment. I am 21 years old. I did PD for 2 years, while i also went to school full time and worked a hiighly physically demanding job. Pd never interfered and i felt the same as i did before. a couple months ago i got a recurring infection and had to have my catheter removed, so for the last 3 months i have been on hemo.  I have not been able to return to work, im just too week. My labs are awful. I feel miserable during and after treatments. If the only reason keeping u from doing PD  is the fact that u have to do it yourself, dont let that deter you. The machine is very simple. ITs very easy to learn, and the benefits of PD compared to hemo are not even comparable. I loved PD and I am trying to go back

[ToddB0130]

Thanks everyone for the feedback and encouragement.  Your opinions and experiences are very helpful.

bleija  --- sorry about your experience.  I hope you get back to PD real soon.  (Don't be offended,  but I am REALLY hoping my HD is experience is more like Richard's)... HA !I am hoping to give HD a shot first,  but am willing to adapt and change to PD if the HD really affects my abililty to do what I want (and what I want to do most is keep working .... call me a freak,  I really like my job and the people I work with ... that's what happens after 25 years).

Anywhoooooo ...........your comments bring me to a survey/question for the group ......  here goes:

BEFORE D and AFTER D

Preface:  I feel pretty well right now.  Certainly welll enough to work full time.  Let's say I will rate my general condition as a 7 (out of 10).   I've got to beliieve my doctor is recommending D as a course of treatment to KEEP ME AT 7 (at least .... hopefully to an 8 or 9 or 10) .... and that means I *should* be able to keep working like I am today (in my general condition ... and of course with some work flexibiilty).

I'm concerned that starting D is somehow going to make my general condition go to a 6, 5, 4 ..... meaning I'm felling LESS well than before D (and that wouldn't make sense to me ...why would any doctor recommend that ?)

Soooooooooooo ..........here goes:   One month BEFORE you started D ... how would you rate your general condition ? .... and one monthe AFTER D .... how would you rate your general condition ? (even if you say you felt about the same,  that will be good enough for me !!)

[MooseMom]

Wait a minute; what am I missing here?  I certainly don't want to question your nephrologist, but I am confused.  If you feel well enough to continue working full time, then why are you starting dialysis?

There is a difference between being told to start thinking/preparing for dialysis and actually STARTING dialysis.

My neph told me almost two years ago, once my egfr dipped below 20, that I should get on the transplant list and should have a fistula created, ie, that I should start preparing myself.  But he has not yet told me I should START yet.  So, I've had my fistula for 18 months and have been on the list since July 2010.

My point is that you just may be jumping the gun.  May I ask what some of your numbers are?  Egfr, phosphorus, potassium, hemoglobin?  Are you suffering from edema at all?

Current research suggests that initiation of dialysis too early can be harmful.  Dialysis may be life-saving, but it is not necessarily life-preserving for long periods of time.  Dialysis comes with its own set of obstacles and risks.  When to start dialysis is the $64,000 question, but my transplant coordinator (who was a dialysis nurse for 13 years) told me that you will KNOW when it is time. 

[CebuShan]

MM: your tx  coordinator is right you WILL know when it is time. I was diagnosed the first week of May '09 and put D off almost a year (Apr 28, 2010). My neph had left it up to me. I finally called and said "It's time". After my first treatment I felt better. It was the first time in over a year that I was actually hungry! Since then, there are good days and bad days but all in all I would say its been worth it. (Even though I hate it! LOL!     

[ToddB0130]

My neph hasn't really given me a 'due date' .... I sure hope it's further down the road.  I feel like it should be ...... my last hemo was 11 and my GFR was 20.  I am hoping to be added to the list before the end of the year.

[ToddB0130]

Whoops....sorry.  Yesterday my doctor told me my latest phos and pottassum were within normal range.   My nephro sometimes talks as if I'm in a race to mature my new fistula before I need to start using it.  Everytime I see him I tell him my main symptons are some leg swelling,  which is not regular and general fatigue.  No vomiting, nausea, diarrhea, shortness of breath...... This ride is very confusing.  And I agree,  I've read the same thing about "early" dialysis ...... my nephro said they don't want to wait until you're so severe that too much damage is done. 

[MooseMom]

Oh, OK, I think I understand now.  Egfr of 20 is certainly too early to be starting dialysis but not necessarily too early to start educating yourself.

My neph told me when I first saw him 7 years ago that he didn't have too much hope for my kidneys.  He was expecting me to have to start D sooner rather than later.  Well, he was wrong.  Two years ago when my egfr went below 20, he gave me 6 months to a year, and again, he was wrong, but I don't fault him because he was guided by experience and I can't blame him if I happen to fall outside of the parameters. 

Getting to the point where I needed to have a fistula created was hellish for me.  I had been dreading that moment for literally years, and the day of surgery, I was a basket case.  It represented to me the first real manifestation of my illness, and it was a terrible experience for me.  But afterwards, I felt like I had successfully crossed a major hurdle in that now I knew that when it was time for D, I'd be ready, and that has given me a lot of solace.

That said, I am not sure what happens if you want to do PD.  Do you have the catheter placed now?  What if you don't need D for another 2 years like me?  Do you just keep the catheter, unused, for all that time?  Is that safe?  I have no idea, so maybe you can ask or a PD person can come along and respond.  I don't think I'd want a catheter sticking out of my belly for two years for no purpose.

[bleija]

i really do hope that it goes smoothly for you, my experience with hemo has been absolutely miserable, but there are ppl at my clinic that come in smiling have good treatments and leave laughing and smiling, im just happy to leave,

[Joe]

To answer MM's question; they can place the catheter and then 'bury' the end just under the skin of the abdomen until it's needed. When I got my cath, the original plan was to do just that, but my numbers went south fast enough my Neph told the surgeon, on the day of the surgery, to "leave it out - he's going to need it sooner than we thought". Kind of caught me by surprise. I started PD 3 weeks later.

[Ang]