Appointments with the neph

[carol1987]

don't forget many people start dialysis at a very old age or very sick with other issues and they are included in that statistic!!   

[MooseMom]

That statistic really bothers me because it feels like doom.  So many people are desperately ill before they go on D.  It skews the stats.  And it is sorta irrelevant, actually.

[paris]

There is no set in stone numbers.  So much depends on how you feel and your own neph's thoughts on when to start.  Our KellyT was at 7% for quite some time and never went on dialysis before transplantation.  She still felt good enough to go to Las Vegas for the IHD one month before her surgery.   So, I guess what I am saying is it is all so personal.   Watch all your numbers, eat well, take care of yourself.  Maybe you will hold it off for awhile.   But, then again, you may feel much better when dialysis does start.   All the unknown is scary.  I have to take things a day at a time  or I would worry myself sicker!     

That new grandchild will give you so much to look forward to. A new life, a new start and "Grandpa" needs to teach him/her all about the outdoors!   What are you going to build for this new baby?  It's first birdhouse?  Maybe a wood toy?  That would be something good to work on to take your mind off other things.     

I don't believe in statistics anymore.  It is my goal to prove them all wrong!!  So far, I am doing a good job!!

[woodsman]

Thanks everyone for your support, it is hard to deal with but hey you play the cards you are dealt.!!
My numbers are as follows as best i remember them
Phosphorus, 6.4
BUN 17.7
Postassium: 5.3
creat   5.53

numbers seem high and they most likely are, what are your thoughts..

[okarol]

I agree, about paying attention to your symptoms. Labs are fine, but the results vary from patient to patient.
How well you are eating, urinating, sleeping, your energy level, your ability to think and work, how you're handling emotions - look at all those things, along with the numbers, and you'll have a better picture of how you're doing.

[MooseMom]

Considering your gfr, I don't think your numbers look that bad, actually.  Your phos is a bit high, but I would have thought you'd be on binders if your neph thought it was too high for comfort.

Just remember that no one can make you go on dialysis if you do not want to.  As long as you are reasonably well and don't keep landing in the ER, it's your call.  I've always been told that when it is time for D, you will KNOW it!  But I would still go ahead and get a fistula created so that it has plenty of time to mature.  The last thing you want is to get into some sort of emergency situation and have to have D but not have an access ready to go. 

How do you feel on a day to day basis?  Are you able to just get on with life?  Apart of the psychological stresses (understatement!), are you capable of enjoying most of your usual daily activities?

[woodsman]

I agree, about paying attention to your symptoms. Labs are fine, but the results vary from patient to patient.
How well you are eating, urinating, sleeping, your energy level, your ability to think and work, how you're handling emotions - look at all those things, along with the numbers, and you'll have a better picture of how you're doing.

Well i have been eating good. I have no issues taking a P and at times i feel totally run down but today i am good i feel well and motivated. I drive 65 miles each day to work then 65 miles home so being tired is part of that for sure. Thinking is okay but i have had some confusing days and emotions well my wife says i have none?? 

[MooseMom]

I think you may still have some wiggle room, but that's just my opinion, and I am no nephrologist.

[woodsman]

I think you may still have some wiggle room, but that's just my opinion, and I am no nephrologist.

 you can be if you want, i like your style!!!

[Stoday]

I've always been told that when it is time for D, you will KNOW it! 

That is very true

In March this year, four months before I started, I was weighing up the advantages and disadvantages of HD. I'll feel better, but I lose 1½ days a week, therefore can do more in the other 5½ days that are left. By July such assessments were totally pointless. My time had come, no doubt whatsoever.

When your time is up I'm sure you will have no doubt about it, no matter what your blood tests say.

[Restorer]

Considering your gfr, I don't think your numbers look that bad, actually.  Your phos is a bit high, but I would have thought you'd be on binders if your neph thought it was too high for comfort.

Assuming your neph is competent.

My first neph let me go for a year and a half without binders or any education on the matter, despite my phosphorus never being lower than 8. By the time I went on dialysis, my phosphorus had spiked at 13 and I had joint pains and sore spots from calcifications. Still he never mentioned it until after the ER doctor put me on binders.

As you educate yourself, make sure to keep your doctors on their toes. I don't know why they ignore issues like that when all it takes is to write a prescription or recommend a change in diet.

[MooseMom]

Restorer, that your neph let your phos get so high is absolutely criminal.  Now, I'm all for being an educated patient, but the doctors are getting paid to treat us and to make sure that we understand our treatments.  Not everyone is well enough to "educate themselves"; not everyone has internet access.  Doctors should be willing to educate us, and when they don't, they are failing us.

[woodsman]

Well at 9am this morning i had an appointment at the Davita clinic for info about how and where i am going to do dialysis, I am opting for the N stage and doing it at home. I then took a tour of the dialysis unit and man i fell apart big time. All i seen were people just laying there doing what they needed to do to live and it hit me hard and anything in my life to date.
I was in nam and seen many things in my days but this was really hard. I had my wife with me but i had to make a Hasty retreat back out of the room and I've never backed down form anything in my life. WOW i never imagined it would be what it was.

I felt like a bit of a wuss aferwards because it almost brought me to tears. So much information was given and the nurse there was great but that room scared the crap out of me.

Sorry for being a complete ignoramus here but until you see it for real it's all seems fake...........

What are you thought on N stage  vs going to the center...

thanks Jim

[carol1987]

  Jim.... i felt much like you on my first visit to the center.... it was very difficult!

[MooseMom]

Oh woodsman, I'm so sorry you had to go through all that.  I remember the first time I went to the dialysis clinic to see the dietician...all I saw were row upon row of befuddled, sick and elderly people lined up in their wheelchairs waiting to be picked up.  I left in tears.  My mom was on D for the last five years of her life, so I saw the inside of many a clinic.  There was always one or two relatively young and/or fit people stuck there in the room with others who were so desperately ill.  You have no control over who does D in clinic with you.  My mom actually liked her clinic and came away with interesting stories about the other patients and techs.  She made some nice friends.  But I don't think that's the route I want to go down.

I'm planning on doing NxStage.  I've spoken with my neph about it, and he's all for it.  I've talked to my husband, and he's already contacted NxStage and has been send some preliminary materials, including a DVD which shows how incredibly happy people are on NxStage.  Of course, there is not any attention paid to the fact that D of any kind is traumatic!  Nothing is easy, not even NxStage, but personally, I feel that if my husband and I are capable (and I think we are), then being able to do daily home hemo is right for me because at this stage, I want to stay as healthy as I can for as long as I can so that I can be fit for transplant when the opportunity arises.  Doing home hemo in the evenings just suits our lifestyle.  We usually watch a movie or read after dinner, so it will be more of the same, just with some machinery to deal with.

You're not backing down from anything...you are gathering evidence and are in the process of making a choice.  Take control of what you can.  You're on the right road.  What you are having to do is hard in every sense of the word, but you're gonna make it.  Still, it is rather overwhelming, isn't it.

[woodsman]

overwhelming is a understatement but your right its all part of it. I think it will get better as time goes by and my nurse told me that i am at 11% function today that was scary for sure....

[jbrock]

Woodsman.....I can so relate to the way you feel!!! I do have my fistula done and it was a piece of cake compared to what I had thought it would be.
I still have to make my appointment to visit the center here by me and that scares me too. I do however feel like I still have some control with the fact that I feel pretty good, except for being tired and fluid retention. My gfr is the same as yours 11 and all my other numbers are in normal range except for my creat being high (3.69) has jumped up in the 4 range and gone back down.
Thanks for sharing your journey with us.....makes me feel like I'm not so crazy to worry about all this as I do.

Moosemom.....you are an inspiration to me!!! You always ask everything that has crossed my mind and I totally enjoy your post!!!!!

Joy 

[RichardMEL]

phew woodsman that's tough.

I actually never went into a unit before I started. Well wait, that's not strictly true.. I was there once to see someone, but I never got into the treatment area proper so I didn't really see the folks in their chairs. Once I got in to start I was so focused on my own treatment and learning stuff that i didn't really take much in about the other folks around and what they were doing(or not).

It is very confronting. I think nobody will think any less of you for your reaction. It makes it all that much more "real" - but you don't HAVE to be one of those folks who comes in and has a miserable time or not much of a life. Indeed to me clearly you're not. For me, I go in and well I don't exactly dread treatments. I'd rather be somewhere else of course, but it's just part of life now. In some ways I actually look forward to it, because I use that time to catch up on tv shows and stuff so for me it's like "oooh can't wait to see the new episode of Chuck!" and I hold off watching stuff till I D time, so it it's almost like get me the hell on so I can fire up my laptop and get into my shows!  I guess I just try and make it into a positive experience for me.

Yes, from time to time I see things there, patients and bad things that happen and I feel sad for them, and I guess I think "there but for the grace of God" - or even "that could be ME someday" but I am also aware that I am quite different to most of the patients in my unit. I'm much younger, probably a bit fitter and generally otherwise healthier (ie: my hearts, lungs etc are all fine) and that D is just part of my week to help the rest of the week happen. It's NOT what my week is about (apart from wating to watch Chuck ).

I think it is good that you have had that experience - next time you will know more of what to expect and you will have come more to terms with it within yourself (hopefully).

[Marina]

  I  too  asked  my  vascular  surgeon  if  I  would have  any  restrictions   (at that time I  worked  stocking  shelves  in a  supermarket)  He  said  "none  whatsoever,  the only  thing that  will hurt it  is  if you  put  pressure  on it"      he  had  already  told me  no  "blood  nor  B/P  on  that  arm"

After I  came out of  fistula  surgery,  Dr  came  to  see  me in  recovery  and  said  "do me  a favor  and  don't  baby  your  arm"

YOu  can  still spend  time with your  boys,,,,,,,  but  this  time  as  a  spectator  sort of  speak   

[Stoday]

The first time I saw the inside of the HD uniit was for real. I'd tried to get a visit before I started, but I was fobbed off with some excuses.

For my first day I was already in hospital because I'd gotten so bad. I was wheeled through the bowels of the hospital making the unit seem to be some underground hell-hole. The timing was just right too, as everyone was being taken off or set up, so all the machines were beeping and clattering away. No wonder I'd been kept away! I didn't notice the other patients; I was too focused on the needles they were about to stick in my virgin fistula...

Including travel, HD takes five hours out of a day thrice a week. I think that's a small price to pay for being OK for the remainder of the week. I know it sounds pretty rough, woodsman, but I'd choose a dialysis session above a session in the dentist's chair every time! I'm sure that when the time arrives for you, you'll be surprised at how easily it will become part of your life.

[MooseMom]

I hope I will be like RichardMEL and will be able to use my D time as a chance to read and watch stuff on my laptop.  I plan to do NxStage at home like I mentioned, but I know that at first,  I will be spending time in clinic, and I hope that it will soon just become another thing I have to do, like laundry.  If I was certain that I could go in, hook up, do my time, get off and feel fine, I could cope with that.  I get worried, though, that my time actually on D will be a misery.  I will do whatever it takes to keep me well, but I am not sure I could endure D if all it did was to keep me alive and not much more than that.  But I try not to think along those lines because I'm pretty healthy considering, and I think it is about time for something good to happen to me...I'm owed bigtime!

 Woodsman, what's next for you?  And if I may ask, how are your wife and sons handling all of this?  Is there anything we can do here on IHD to help them?

[woodsman]

I hope I will be like RichardMEL and will be able to use my D time as a chance to read and watch stuff on my laptop.  I plan to do NxStage at home like I mentioned, but I know that at first,  I will be spending time in clinic, and I hope that it will soon just become another thing I have to do, like laundry.  If I was certain that I could go in, hook up, do my time, get off and feel fine, I could cope with that.  I get worried, though, that my time actually on D will be a misery.  I will do whatever it takes to keep me well, but I am not sure I could endure D if all it did was to keep me alive and not much more than that.  But I try not to think along those lines because I'm pretty healthy considering, and I think it is about time for something good to happen to me...I'm owed bigtime!

 Woodsman, what's next for you?  And if I may ask, how are your wife and sons handling all of this?  Is there anything we can do here on IHD to help them?

Whats next for me is a visit to surgeon on the 27th then surgery when he schedules it but his nurse said within the next 2 weeks.. Then more blood tests, then back to neph in 6 weeks then if creat is still maybe dialysis. I am also getting the Nx stage because i don't even want to think of sitting there in a center when i can do it all right at home... My wife is in nursing school and will graduate in june of 2011. She is strong and knows things i can only begin to know. My sons are okay with this so far  but i need to tell them more..

Thanks Moosemom and the rest of you, i have learned tons here and even the nurse at the center i visited said this site was very informitive and likes it very much.

[MooseMom]

I'm not an expert, but I think you will be the perfect candidate for NxStage, woodsman.  I mean, with your wife in nursing school...well, that's a bit of a good omen!

It's always hard to know what to tell the kids, but I'm sure you will come to know just what to say and how to say it.  I'm confident that your sons will be a source of strength.  And that grandbaby that's coming...oh man, you have so much to look forward to!

[woodsman]

Hi all!  I went to the surgeon today and he checked my arm and said it looks great for the fistula. Surgery is scheduled for Nov 9th at 1:30pm. I can only begin to tell you all that i was how can i say it...... nervous to say the least. I have never had any type of surgery, broken bones, etc... I had stitches many times but this is a real bummer........ no work for 2 weeks (no hunting) oh crap........... 

[MooseMom]

If you've never had surgery before, it can all feel really overwhelming and scary.  The anticipation of it is the worst, it really is.  I was an absolute basket case beforehand, but afterwards, I felt such incredible relief on many levels, and I think you will, too.

Those two weeks of limited activity will fly by.  You'll be back to hunting in no time.

Where will your fistula be?  That's great that your surgeon doesn't anticipate any problems.  Just get it done, let it heal and get on with life!