Appointments with the neph

[MooseMom]

We pre-dialysis patients are all too familiar with the anxiety that comes with awaiting lab results and going for our regular neph appointments, so I though it might be nice to have a thread where we can all come and discuss these things.  I know that woodsman has an appt this week and is feeling the strain.  Anyone else have an upcoming appt or have just had one?

[kremizin]

we will be seeing my mom's neph tomorrow, the thought of her undergoing dialysis scares and saddens me. im sure she's also feeling that way...it's like a damocles' sword. 

[MooseMom]

we will be seeing my mom's neph tomorrow, the thought of her undergoing dialysis scares and saddens me. im sure she's also feeling that way...it's like a damocles' sword. 

I've used the Damocles' sword analogy many times.  So, how did the appt go?

[Jean]

Most of the time I would rather slit my wrists than go to see my neph. It is so scary that my blood pressure goes up 15 to 20 points when I go in. I will never feel comfortable in that office. Seeing my regular dr, my bp stays normal, never hgiher than 130. Dont know why this happens, maybe because I want and dont want to know my GFR.

[MooseMom]

Most of the time I would rather slit my wrists than go to see my neph. It is so scary that my blood pressure goes up 15 to 20 points when I go in. I will never feel comfortable in that office. Seeing my regular dr, my bp stays normal, never hgiher than 130. Dont know why this happens, maybe because I want and dont want to know my GFR.

Oh boy, do I know this feeling!  I had an appt this past Thursday, and I was convinced it was gonna be bad because I have not been feeling well.  Now that my gfr has dipped below 20, I feel doomed.  I have to go every 2 months instead of 3, so the agony is just that much more frequent.  My egfr is 15 which is pretty crappy, but the odd thing is that my BUN improved, my potassium is actually normal, and I show no signs of anemia.  On my next visit, however, it will be time to test all of the other stuff like phosphorus, vitamin D and PTH.  I'll be a nutcase by then, but that's not until 9 December, so until then, I really need to chill.  There was no talk of starting D.  Instead, we got into a discussion about Swedish films.  We always spend maybe 5 minutes on kidney stuff and then 10 minutes on really important things, like books.

[gothiclovemonkey]

  We always spend maybe 5 minutes on kidney stuff and then 10 minutes on really important things, like books.

That is awesome! 

Ive been on dialysis since 07, and i still dread seeing the dr, and getting bloodwork!

[carol1987]

I don't dread the neph anymore.... i think since my gfr dropped below 10 and i knew dialysis would be sooner than I had hoped... i just appreciated the "borrowed" time.

a few weeks ago he said it was time to start D and then i kinda freaked out... but we decided to wait another 2 weeks and that gave me time to wrap my head around it!

I will begin Dialysis tomorrow at GFR 6..... he did not want to push it anymore..

I really like my nephrologist ....

[ChickenLittle56]

Carol You are right about being on borrowed time once they tell you that your kidneys are failing. I lasted 20 months from the time they put my fistula in til my first D session. Having a great Neph doctor helps immensely. MM I like the fact that you can talk other that kidney stuff with the Neph. That why I enjoy my visits with my foot doctor except we talk politics.    

[MooseMom]

My husband isn't particularly keen on my neph ever since my first appt when he told me that he didn't "have much hope for these kidneys."  My husband kept trying to pin the doc down on giving some kind of time frame and percentages, etc, until I finally said, "Look, it just is what it is."  If Eeyore was Jewish, that would be like my neph.  He has really kept me going; it has been 6 years since that first appt, and he has kept me off dialysis (I am a terrific patient, though, it must be said! )  Once I start dialysis, though, I will be interested to see how good he really is.  He manages the D clinic along with my PHP; it's not part of the DaVitas or Freseniui of the world, and I'm not sure if that is a good thing or a bad thing.

But nowadays, it's just a matter of looking at my labs (I see my results before he does, so I'm usually prepared with questions if necessary), checking my heart, etc, and then having a bit of a natter about other stuff.  I like it that he sees me as a fascinating person in my own right ( ) and not as just a pair of dying kidneys.  I do what I can to sorta stand out from the crowd so that all of my health care providers will remember that I am more than a list of numbers.

[kremizin]

we will be seeing my mom's neph tomorrow, the thought of her undergoing dialysis scares and saddens me. im sure she's also feeling that way...it's like a damocles' sword. 

I've used the Damocles' sword analogy many times.  So, how did the appt go?

the neph was very happy to see me for the first time, usually my father and sisters go with her. she was explaining how our kidney function...from the blood going to kidneys, etc. my mom's lab results...crea 6.9, gfr 12.7, the neph is really pushing for the placement of fistula which i already explained to my mother.  they have this notion that once fistula was placed, you'll start D. our next appointment will be on November and the the neph hopes by that time my mom already got her fistula.

damocles' sword is just very fitting if you're on the pre-dialysis stage.

[MooseMom]

kremizin, how does your mom feel about getting a fistula placed?

[woodsman]

Neph called today and now moved my appointment to oct 19th at 1pm oh man now i need a drink......  I gave bllod today and now i will wait wait wait.................................................. shit.....

[ChickenLittle56]

 
Woodsman, its good to have sense of humor on days like these. With all the seriousness of having to start D its good to have that humor to make your spirits rise up once in a while. When I get get one of those bad report cards I think of what I ate before the labs and think on how I can lower the bad parts for the next monthly draws. Then I go to the comedy central channel and laugh my a** off until the techs tell me to Shshsh...your laughing to hard. I sometimes ignore them

[casper2636]

On blood draw days, I just take a deep breath and think...whats done is done and I can't go back in time. But, next time I can try to be more aware and do better...I HOPE! It's very stressful when the neph. makes a point of talking to you/making and additional appointment with you, and you have to wait for the gravel to fall. All's not lost, there is always next time. Keep your chin up along with your spirits

[kremizin]

kremizin, how does your mom feel about getting a fistula placed?

i dont want to entertain her idea of just wait and see.  she's a religious person and i've heard her say a couple of times when confronted with issues regarding dialysis...."with God's mercy...."  i guess she's having difficulty accepting the fact that sooner or later she'll need dialysis...she's also thinking that not only this will entail physical suffering but also financial burden.

we have a male neighbor who is also a candidate for dialysis...who once said...he'll just commit suicide rather than undergo dialysis. guess what...he now got a fistula.   afraid of dying!

[MooseMom]

Oh woodsman, I can't believe you are going to have to wait!!  I've been looking to see a post from you, and now I read this.  I think I would have slit my wrists by now.  

[woodsman]

Oh woodsman, I can't believe you are going to have to wait!!  I've been looking to see a post from you, and now I read this.  I think I would have slit my wrists by now.

I am a avid outdoors man and this fistula will really hamper me. i am a bow hunter, fisherman, wood cutter and i build things, sheds porches, bird houses whatever. I will not be able to pull back a bow with a new fistula installed... let alone split wood.  I'll survive for sure but the waiting is hard .

[MooseMom]

Have you spoken with a vascular surgeon to ascertain exactly how a fistula will impact your outdoor activities?  You may not be nearly as limited as you think.  I can see how restricting some activites post surgery would be in order, but once the incision has healed, I don't think you'll have to stop doing all the things you enjoy. 

[woodsman]

Have you spoken with a vascular surgeon to ascertain exactly how a fistula will impact your outdoor activities?  You may not be nearly as limited as you think.  I can see how restricting some activites post surgery would be in order, but once the incision has healed, I don't think you'll have to stop doing all the things you enjoy.

Yes after it heals i would be okay to do things again but i would be worrying about injuring it and then having issues with it. Bow season starts next weekend and my app. is Oct 19th thus my dilemma, I can always sit out this season but i hunt with my sons and i don't ever want to miss my time with my boys... Oh well life goes on... and on.

[MooseMom]

It really hurts when kidney disease starts interfering with time with your family.

I understand worrying about injuring your fistula.  But most problems with fistulas are cardiovascular in nature, so it would seem to me that the more active you stay, the better the blood flow, and the healthier your fistula.  When I asked about keeping my fistula safe, etc, my surgeon told me to ignore it and to use that arm as much as possible.  The only things he told me not to do were no bp readings and no blood samples should be taken from that arm.

[woodsman]

Well the wait is over and the news is bad. Doc says GFR is at 11 and creat at 5.53. I have to go in for an appointment with the surgeon and then the fistula. then he says by Thanksgiving maybe dialysis. This was not the news i was hoping for and now i am thinking there is little hope for a normal life.

I am down in the dumps for now and my real kidney donor is my daughter in law is pregant and i'm going to be a grandpa for the 1st time and that was the best news i have had this year.

Can someone tell me what the bottom line numbers are for dialysis to begin. I don't feel so bad except maybe tried....  this sucks  and i am just not a happy person right now. I also have to go to class to find out which dialysis i prefer, at home machine, stomach, or in center, which would you do?

Thanks for reading...............  Jim

[Stoday]

My choice was in-center and that was right for me. I really wouldn't want to change it to some other modality.

Anyway, you've got a long time to wait yet. You've got to get far more ill before starting the big D. Best to try to maintain some function, dialysis is far from a cure; it's just a way of hanging on.

A Happy Thought for the Day

Here's an official view: http://www.nhs.uk/Conditions/Dialysis/Pages/Results.aspx

"The average life expectancy of a person who is on dialysis is four years (assuming that they have not received a kidney transplant). However, many people who have dialysis survive for much longer than this (up to 25 years)."

Of course, that also means that many people who have dialysis survive for much less than four years.

[MooseMom]

Oh, I know you must be in shock.  I really do know much of how you feel, and it's not good.  When I was told it was time to get ready for D, I just sat in my car and sobbed.  It really does take time to get used to the whole idea.

The prospect of D is truly overwhelming, yet this is the time to start making some decisions.  I can only tell you what I did (or, rather, what I TRIED to do).  My first task was to get my appt with a vascular surgeon to discuss placement of the fistula.  I am assuming you've decided on hemo as you are talking about fistulas, but might you want to do PD?  Have you allowed yourself to make that sort of decision yet...PD vs hemo?  Get your fistula/PD catheter so that you will be ready when it is time.  Believe me...being ready will take a huge burden off your shoulders.  Get that done first...just take that one step.

That's fabulous news about you being a grandpa.  Isn't it a bit ironic...now you have a reason to go through dialysis.  Funny how the world works.  If you have a reason to keep on living (like being a grandpa!!!), then there is a reason to dialyze.  I'm feeling all kinds of different emotions for you.

I'm going to do home hemo for reasons that are largely irrelevant to anyone but me.  You make your own decision using the best information you can access.  I'll be very interested in what your impressions are after you attend your class.  That's good that you get to have some guidance in this area instead of just being left alone to educate yourself.

I'm so sorry you got bad news.  I know this was exactly what you were frightened of, and it is awful when your worst nightmare becomes reality.  But you may have a lot more time than you realize before D as Stoday suggested.  How are your other lab numbers?

[RichardMEL]

woodsman - there really is no bottom line of numbers because everyone's situation is different. For example I had very few symptoms and a GFR of 6 when I started, while others may be in a bad shape at GFR 12+ and need to start - it's just as much based on where the patient is at, how they are feeling, what the quality of life is like, as much as the numbers, which are just a guide (of course if things like potassium or phosphates are out of control then perhaps D is the only way to help with that that may not strictly be related to the GFR).

I know it's scary - those of us who have started D have all been there and can relate in our own ways. Hang in there. You may start to feel better once you start D and you may find it's more managable than you feel and not so much a big of a deal. Yes, your life is changed in a number of ways, but you just get a "new normal" - it's not all bad and it's certainly not the end.

Hang in there, mate

[woodsman]

My choice was in-center and that was right for me. I really wouldn't want to change it to some other modality.

Anyway, you've got a long time to wait yet. You've got to get far more ill before starting the big D. Best to try to maintain some function, dialysis is far from a cure; it's just a way of hanging on.

A Happy Thought for the Day

Here's an official view: http://www.nhs.uk/Conditions/Dialysis/Pages/Results.aspx

"The average life expectancy of a person who is on dialysis is four years (assuming that they have not received a kidney transplant). However, many people who have dialysis survive for much longer than this (up to 25 years)."

Of course, that also means that many people who have dialysis survive for much less than four years.

Geez that was encouraging.....  lol