Hello eveyone

[lmunchkin]

I would not get a PD cath put in until I start feeling like crap!  Period!!!  When you start to feel tired and just don't have energy anymore, then you know you are close!  You don't need lab numbers to tell you that, but just for confirmation only!  Having a PD cathater sitting there waiting for use, is asking for it.  Don't do that Todd!  Now a fistula, like MM, is a very good choice for pre-D people such as you!

I believe, MM, has had hers for over a year (she will correct me if Im wrong) and it is not being used but it is a "natural part of her body" whereas a cath is not!  Chances of infection is too great, I would not risk it.

Now if MM, decides that maybe she would rather try PD, well, then she could have a PD cath inserted when time comes and still have her fistula as a back up if PD does not work!  Does that make sense?  Or am I rambling here!!!!!

The point I guess we are trying to make Todd, is if you are feeling alright right now and can work, then go about it until your body tells you something is wrong.  If your kidneys are failing, believe me, your body will telll you just that!  Doctors are right sometimes also, but they can be wrong to in guessing start dates.  MM is not the only one on here, that Nephs have missed the mark with!  But they are just trying to make you aware that indeed, your day will come!

lmunchkin     

I personally would wait as long as possible until changes in the way that I feel become more prominent (sp?)

[ToddB0130]

The fistula surgery this morning went fine.  It's a little achy.  The doctor gave me a scrip for percoset, but I'm not going to bother.  Pain killers aren't good for the kidneys (I am shocked he gave me the scriip).   But then again,  he hardly said ten words to me today.  I'll be checking out this site for advice on caring for my fistula.  I know to make sure I don't bump it .... I'll do a search to read up on some other fistula threads.

[lmunchkin]

Oh, so glad it went well, Todd!  But I will give you a heads up on the fistula, dont lift any thing heavy with it.  Don't let Medical people use it to draw blood from or take B/P on it. It is your "life line" and you do not want anything to hurt it.  When Hubby and I went to Fla, I put a towel over it to keep it out of the sun.  I didnt want it to blister!

Now you are still Pre D. right?  MM, is Pre D. too, and has a fistula and she would be willing to give you tips on how she is managing her fistula while it is not being used.

I can almost assure you, you will not be sorry that you got it.  Also, you might have to go back in for VS to tie off some off stray veins that develop in new fistulas.  I believe our Surgeon went in 3 times to tie some vessels that developed out of the fistula, but that was a piece of cake! 

Glad to hear you got one, now when you start D. we want you to start with Home D.  You won't ever go In-Center again!  They are awful, IMHO!

lmunchkin   

P.S.  Got to go to bed now!  Good nite all!  MM, hope you don't mind me using you as a reference!  Ive used you alot in some of my examples lately!!!!!

[MooseMom]

  @ lmunchkin.  Of course I don't mind.

Todd, so glad things went OK.  Know what you mean about the pain pills; I took just one, and for the next 4 hours I felt like I was on a boat in rough waters.  I do NOT do well on pain pills, so I took Tylenol, and that was fine.

Don't come to me asking for advice about the care of fistulas because I was one panicked puppy.  For the first several month, I'd get these lightning type jolts down my arm, but I was told that was normal as it was the nerves healing.  But as the damn thing matured (the access will be in my upper arm but the point where the vein and the artery meet is just below the crook of my elbo), it just felt all weird; mind you, I'd never had a fistula before, so I didn't know what was normal.  Once I got an emergency appointment with the vascular surgeon about 8 months after surgery because it just felt SORE.  He looked at it and looked at me with annoyance and declared it "excellent".   On 1 April this year, I made my husband take me to the ER because it just HURT, and the doc examined it and pronounced it fine.  So, I went a bit over the top in worrying about it, but after hearing all the noise about how important your LIFE LINE is, I decided to take those warnings seriously.

I think my fistula is located in a place where the muscles in my arms get particularly sore if I do too much physical work.  That's the only explanation I can think of.  I noticed that it will get sore if I ride my bike over rough terrain...the shock waves run up into my arm, if that makes any sense.  Also, the surgeon "lifted" the vein closer to the surface of my skin, so I think that makes it more sensitive or something.

I have not yet come to the point like others have where I find my fistula to be "soothing".  It still annoys me.  I can hear the blood flow through the phone when I hold the phone in my left hand.  I can hear the blood swish as I'm falling asleep and had to get a white noise machine to drown it out.

Bottom line...I hope I never have to use the thing, but I'm glad I have it.

Most of all, though, I'm glad you've come through the surgery and hope that your fistula matures well and will be ready for use if the time comes when you need it.  Catheters are so prone to infection, so if you have a working access ready to go upon initiation of dialysis, you will already be at a huge advantage.  You are very fortunate (believe it or not) to have the time to get a fistula up and running.

Take care.

[CebuShan]

After I had mine put in, I was given a spongey thing to squeeze to help develop it. I do a lot of driving so I would squeeze it to the beat of the music on the radio. Best of luck with yours.

[RichardMEL]

Todd,

I'm so pleased your fistula placement went well. As I said it's usually the way it goes, so I'm glad to hear you're "normal" !!! 

In relation to your earlier number/work related question. There's just no hard and fast rule to any of this - and everyone is different. I do agree that a GFR of 20 is pretty high to consider starting D - but having the fistula is always a good thing. I, myself, had mine placed 2 years before I used it so it got nice and mature (side bonus: girls like a big one!!  ).

It is quite common, and I think sensible in a way (but then again I am conservative and boring!!!) that your doc doesn't want you to hold out till you're in such a bad state. There is some wisdom to this. I suppose the counter to that is that if you start too early you're potentially "wasting" time that could better be used living life rather than sitting on the machine. The counter to THAT, of course is that say you're at a 7 now, if you wait till you're like a 2 or a 3 and feel like absolute crap, actually starting dialysis will be that much more difficult because there's more nasties to deal with, plus any other complications from the extra toxins in the system - plus adjusting will be much harder and it will take longer to stabalise on D - and indeed it may even wind up stabalising you at a lower level (maybe 5) of how you feel. Again though, there are no set rules here.

As I've said before I was able to work while doing HD - most days were pretty good and the fact that I was working was so valuable to me to be with the people I liked and doing more productive stuff rather than focusing on medical issues - and I can tell it is so very important to you to do that so if it were me I would keep an eye on things with your neph and not hold out so late. As others have said thought in the end you'll know when it is right for you to start. Some docs have a hard and fast rule of GFR 10 or some other number that you MUST start. I don't personally agree with that (I started at 6) - I think it should be a combination of numbers but also how you feel.

It's definitely important to monitor how you feel and keep an eye on your labs and work your neph. If you start D when doing pretty well then it should be quite quick to stabalise and that should allow you to continue to work and do D. A few members here have done that kind of thing quite well in recent times - there's no reason to think you couldn't also. Of course it's hard to predict the future.

At the end of the day I think this is a case of using common sense and working with your neph to find the right time. At GFR 20 it shouldn't be for awhile hopefully - so in the meantime get a ball or something if they didn't give you one and work on the exercises. I am certain a mature fistula helped me so much when I started.

Hoping though you do not have to see that machine up close and personal any time soon!

[Cordelia]

Hi Todd       to IHD! Enjoy the site!   

[Poppylicious]

  Todd.  So glad your fistula surgery went well.

After I had mine put in, I was given a spongey thing to squeeze to help develop it. I do a lot of driving so I would squeeze it to the beat of the music on the radio. Best of luck with yours.

Because Blokey does a lot of driving it was mostly that which helped his fistula develop nicely too.

Todd, my Blokey works full-time on haemoD.  He tried PD but it wasn't a modality which worked for him so haemoD at the hospital was his only choice.  Thankfully they do twilight shifts so he was able to go MWF straight after work (who have been amazingly accommodating, letting him leave a little early on those days).  I don't think he would have managed a full day at work AFTER dialysis though, but everybody is different.  Good luck for whichever path you take!

[ToddB0130]

Saw my doctor today.  Creatanine is unchanged (wish it had gone LOWER) and phos, pottassium, sodium and hemoglobin are all good/normal.   Hoping this all means I'm off of D for a while longer !!!  Fistula is getting older (two week birthday this Thursday), but I'm hoping it doesn't need to be used any time soon. 

[lmunchkin]

I hope you don't either, Todd.  But at least you will have an access for when you do start!  Just enjoy your life, and whatever comes your way, you will be prepared!

lmunchkin

 

[fearless]

Hi Todd,
I think you are in as good a place as someone in your situation can be.  Myself, I was very very sick for a long time and extremely anemic when I started dialysis.  I knew nothing and no one.  In a way it allowed me to kinda keep my denial going, and even though I've always been very compliant, I kept dialysis in a "compartment" in my spirit, and lived my life as best I could like a "normal" person.  PD allowed me to have minimal interaction with my doctor/clinic - as long as I had no infection and my labs kept up, I only had to see them once a month!  But sometimes I would awaken from sleep, and wonder if my life was just some awful bad dream.  Here I was hooking myself up to a machine every night, pumping fluid in and out of my abdomen, swallowing a ton of pills with every meal. etc.  Is this my life?  Weird that now, after 8 years, I'm sort of being forced to see: yes, this is my life, but I'm NOT alone.  So now, so much info is finding its way to me.  My doctor, perhaps out of some backwards kindness, never really pushed on anything.  Now I really need to change to hemo because I can't do enough PD to keep me adequate anymore.  I hate that the dialysis part of my life is growing and growing - fistula surgery, catheter surgery, etc. etc. etc.  less and less control.  I feel that for you, having the info while you are still pre-dialysis and being connected to everyone here who has SO much to offer you (and me) it will be OK.  As it's been OK for me too, even though I've already been doing dialysis 8 years!!! LOL

[ToddB0130]

Gosh --- it has been ages since I posted.....  Once I had started dialysis in May 2012, I guess I just started dealing with my new reality (including nighttime dialysis 3 times a week for 6 hours each shift),  full time work, etc, etc.

I appreciate all the information from this board that helped prepare me for dialysis ..........so much of what people shared was right on the money .....  but, of course, there's nothing like experiencing it yourself !

An update on me ....... I got 'the call' on November 20th and received a transplant from a 'perfect match' deceased donor on November 21st.   It was a shock to me as I had not been listed for a full two years at that point,  but from what I'm told,  they do try to match up a potential kidney with it's best match.

Unfortunately, my new kidney was a 'sleeper' and I had delayed graft function for about three weeks.   It was a crazy limbo time because they were telling me to drink, drink, drink to get the kidney to 'wake up' and then after labs,  I'd get a call to report to dialysis.  UGH.

But I have since completely stopped dialysis for about a month now.   My last creatanine was 1.05 and my last GFR was 58.

I am a slow healer (diabetes) and at this point, the drainage port remains in.  It is a bit annoying,  but the doctors say it should stay in until less fluid is draining (about 20ml) because otherwise,  that fluid may drain directly from the wound and heal even slower ........so I 'get it' ........still annoying.

I came back to the board to read transplant stories and so may of them were like "I started peeing like the Mississipi River during the surgery'  or  'My creatanine is a NEGATIVE number' .....  I was like  "Huh.  Why do I have the hooligan kidney that sleeps late,  misses the school bus and brings home notes from the teacher that it is sleeping on the mats of other kidneys' ??   Ha Ha.   But I have turned a corner and things seem to be moving in the right direction.   I am having to learn more about handling my diabetes with an all insulin regimen (I was on two oral and Lantus before the surgery) and I'm taking prednisone,  which doesn't help with blood sugar levels (today I just moved down to a 5MG dose).  I see my endocrinologist again this Thursday, so hopefully we'll get the blood sugars better straightened out.

LOTS of medicine changes throughout these last seven weeks.    Doctor appointments, labs, etc are like a full time job,  but I'm hoping to start working again before the end of the month .......... I'm doing a 'gradual return to work' and can also work from home on my laptop as necessary.    Work is only two miles from where I live, so that will be helpful.  I started driving again last week (so far a whopping 90 miles total),  but the weather here on the East Coast is sooooooooooo cold,  I hate going out in it, even when I'm fully healthy !!

This transplant experience has been one of the most educational of my life ........just some crazy experiences ..........but I'm looking forward to transitioning to my new situation.

And my cell phone named my new kidney for me.   I had emailed a friend and they had responded back "Who's Kirby ?" ............ my cellphone had autocorrected the word kidney with Kirby ..............so 'Kirby' it is !!!

Happy to read some of the updates on other posters (Congrats MooseMom and Cordelia).  I won't disappear for two years again ......... Yikes !!

[Charlie B53]

Hi Todd,

Wonderful news that you got a kidney in such a short time on D.

Someone is looking over you for sure.

Post often, remember there are a lot of people that read, but don't post.  Stories like yours lead to lots of hope for all of us.

Take Care, and hope to hear you doing well back at work.

Charlie B

[CebuShan]

Congratulations on Kirby!