Appointments with the neph

[MooseMom]

There you are, woodsman!!!   I am so glad to see you posting again!  I've been wondering how you are doing and have been checking this thread each day, hoping to see that you were doing well.

If you are feeling that vibration/thumping, then your fistula should be doing great.  It took me several months before I started actually seeing my veins become more pronounced.  My fistula is in my upper arm, so it may be different for me than it will be for you, but to my eye, the veins in that area are very visible, and down around my elbow, I can see throbbing.  My surgeon says my fistula is excellent, so I guess this is all normal.  I would imagine that as time goes on, you may notice the same thing, but since yours is in a different location, I wouldn't hazard a guess.  But that "thrill" you feel...that's what you want to be feeling.

Oh, I hate the IV in the back of the hand thing!  Is that where they had to poke you 4 times? 

Anyway, I am so very glad that the surgery went well and that you are back!!  Yay!!  Well done!!

[ChickenLittle56]

aaahhhhh!!! Sounds like old memories. After my fistula surgery I felt the thumpity thump in my wrist. After I started using it it started growing bigger and longer. I can't use it after a certain point because it goes deeper into my arm. They even stick me in my upper arm about 3 inched above my elbow. Although they stop doing that because they said they want to save that area for a new fistula if the old one goes bad.
So long I hope that you have a long life on your fistula.

[Deanne]

Before you had to really think about dialysis, back when life was still "normal," what were your veins like? I'm a bit concerned because they have to use a butterfly needle for my regular labwork. My veins are small. It makes me wonder if I'll have problems if I need a fistula later.

[MooseMom]

Before you had to really think about dialysis, back when life was still "normal," what were your veins like? I'm a bit concerned because they have to use a butterfly needle for my regular labwork. My veins are small. It makes me wonder if I'll have problems if I need a fistula later.

Many years ago, I had a 24 hours glucose tolerance test which required me giving a blood sample every few hours.  They never could draw blood from my left arm...the phlebotomist, whose name was Sebastian and who had the grooviest afro (this was many years ago...), fled in tears.  But I never had trouble with the veins in my right arm, so all my blood samples are taken from there.  However, my fistula is in my left arm, and it is doing very very well (although I have yet to use it) despite my concern that my veins might be small.  I don't know if you will have any trouble, but I'm sure you are not the only person in the world who has smallish veins and needed an AV fistula.  Still, yours is a good question. 

[woodsman]

Oh boy can i feel the vibration/thumping going on but i don't see anything yet. It almost feels like something is crawling on my arm wrist/area. I am hoping dialysisi won't start anytime soon but i'll just have to wait and see.
Hang tough MM maybe a donor is coming your way soon...

[MooseMom]

Oh boy can i feel the vibration/thumping going on but i don't see anything yet. It almost feels like something is crawling on my arm wrist/area. I am hoping dialysisi won't start anytime soon but i'll just have to wait and see.
Hang tough MM maybe a donor is coming your way soon...

It took a fair while before I actually SAW anything.  But goodness, can I FEEL it!!!  Actually, I've been to my surgeon a couple of times because I just didn't know if what I was feeling was normal.  I can feel it ALL the time...it feels like the walls of all of my veins are being stretched.  Oh!  That's EXACTLY what is happening!  I guess I should be glad, but it feels creepy, and sometimes it just HURTS, especially at the end of a day when I've been busy.  It's as if my veins get tired.

I, too, hope that you won't have to start D any time soon, but at least now you are ready.  Those permacaths are a highway for infections, so I'm glad you'll be able to steer clear of those!  You made the right decision.  I know it wasn't easy, but it was right.  You've done all you can do at the moment.  It was a really tough hurdle, but you cleared it with aplomb!   

[MooseMom]

OK, I'm going to be really obnoxious and announce that Jean has a neph appt tomorrow (as posted in another thread, so I'm not telling tales!), so good luck to you!  We'll be eager to hear about it when you get home and feel like posting.

I had an appt scheduled for 9 December, but I rescheduled it to 6 Jan because I ate waaaaay too much phos over T-giving, and my poor kidneys need an extra month to get rid of it.   I'm going to be extra special careful til then.

[Deanne]

I thought my appointment was next week, but my nephs office called yesterday to remind me that I have an appointment TODAY. ack! I guess I wrote it down wrong. That's a week less that I'll have to stress out about it anyway.

[MooseMom]

I thought my appointment was next week, but my nephs office called yesterday to remind me that I have an appointment TODAY. ack! I guess I wrote it down wrong. That's a week less that I'll have to stress out about it anyway.

This could be a blessing in disguise!  The stress is killer...

Would you mind posting about your appt when you get back home?  Thanks!

[Deanne]

'Course I'll post! It'll likely be tomorrow though. I don't have a home computer. I haul my work laptop home once in a while, but since I'm on a computer all day, every day, I don't often take it home with me.

I appreciate the support from everyone here. 

[MooseMom]

'Course I'll post! It'll likely be tomorrow though. I don't have a home computer. I haul my work laptop home once in a while, but since I'm on a computer all day, every day, I don't often take it home with me.

I appreciate the support from everyone here. 

We'll be waiting!  Post when you feel like it.  No obligation!

[woodsman]

Fistula still feels like something crawling on my wrist, pic below of it.

[MooseMom]

Good news is that this is probably the worst it will look!  When will you get the staples out?

[Jean]

Had my neph visit today. GFR only went down 2 points to 22 and I am feeling okay. Sometimes I actually feel good too. Bun and Creat went up a couple of hairs. So, now, I dont know if it is due to the angiogram or just the natural course of the disease.My visits are still 3 months apart, and in 3 months just about anything can happen.

To Woodsman
Your fistula doesn't look bad at all. I could see the tape marks on your arm. Must hurt like crazy with all the hair on your arms. The small indignities we must tolerate. Geezh!!!

[Deanne]

Woodsman, it looks like you're healing well! Those staples look creepy though.

My creatinine came in at 3.4 at my appointment yesterday. My previous test was (I think) 2.71. I have to re-test in two weeks and if it's still over 3, I'll start the transplant evaluation process. My siblings can't donate directly to me because of the hereditary nature of my disease, but my neph said yesterday that if they're interested in a paired exchange, that's a possibility. I only have one sibling who might be a possible donor (brother has prostate cancer, other sister has several non-medical issues), so crossing my fingers that my one sister might be interested.

[MooseMom]

Jean, I've kept a copy of all of my labs over the past 6 years, and there just never seemed to be any rhyme or reason behind the fluctuating egfr.  It could be 22 one time and then 24 the next and then 21 the time after that, and the same with BUN and creatinine.  With hindsight, if you're still above 20, breathe a sigh of relief and try to get on with life.  Do your numbers bounce around like that?  I think the neph is looking for trends more than he is looking for a specific number.  Remember that these labs reflect a snapshot in time.

Deanne, it was a huge shock to me when my creatinine went over 3 the first time.  I sobbed all the way home, I don't mind telling you.  Then it dipped back below 3, then just above 3...it has been pretty wobbly.  I used to go to the neph every 3 months, but now I have to go every 2 months.  How are you feeling?  Are you really stuggling physically, or are you getting along well enough?  Paired exchanges are a brilliant idea...they really open up the realm of possibilities.  I hope your sister will be interested.  Let us know about your next set of results, OK?

Are you doing OK with this news?  Is this a big shock to you, or is it pretty much as you expected?

[Deanne]

It was no surprise and I'm doing OK with the news. I've had kidney disease for almost 40 years -- that's a long time to get used to the idea! I hit the dreaded 3 mark once before, then dropped back to 2.5 when my dose of lisinopril was reduced from 40 mg/day. It's been creeping slowly back up over the past year since then. She's pulling me off lisinipril entirely now. I'm only on 2.5 mg/day, so I can't see that such a small dose will make a huge change in my creatinine level, but who knows? Except for creatinine drops explained by the changes in lisinopril, I haven't seen my creatinine level bouncing up and down the way I've seen other people describe here.

I've been seeing my neph every 3 - 4 months (It's supposed to be 3, but sometimes it's hard to get an appointment). Now she told me she wants to see me again in January, so I'll run labs in two weeks to re-test without lisinopril, and then again a couple of weeks after that before my January appointment. I feel OK for the most part. Tiredness and concentration are problems, but they have been for a long time. I have trouble staying focused at work and I make more mistakes than I used to. Those are very frustrating things for me.

My neph told me she wants me to ramp up my exercise level. When I first started seeing my neph, I was walking marathons. She loved that. Lately, I've gotten lazy and only walk about 3.5 miles on Saturday and Sunday mornings. I have a Wii, so I pulled out my EA Active Wii game last night and will get back to using it daily, starting last night, even though I think of it as torture!

[MooseMom]

I need to ramp up the exercise, too.  I used to walk 2-3 miles a day, but this year has been traumatic in so many ways, and I've had to travel a lot.  I got out of the routine of daily exercise, and now that it is winter, it gets harder.  I don't mind the cold, but the idea of slipping on the ice scares me.  I'm originally from Texas and I don't do ice!  But I have snowshoes, so I have no real excuse.  I feel so much better when I walk, so I need to back to my exercise schedule.

I've thought about getting a Wii, but I don't know much about it.  Is it a separate platform from an Xbox or a Playstation 3?  Can you tell me more about it?  That might be really helpful to me.  Thanks!

Forty years with CKD?!  Oh man...you're a pro!  Well, I'll be interested to see what your next set of labs will show without lisinopril.  The ACE inhibitor I take is ramipril...is there any real difference between that and lisinopril?  I've seen lots of people taking lisinopril and have wondered what the difference is.  Do you know?  Is it just a neph's preference that makes him/her prescribe one over the other?

[Deanne]

I did a quick search on ramipril and it looks like it might have the same effects on the kidneys as lisinopril, bit I can't tell for sure. It looks like they're similar meds. I saw a lot more problems on the kidneys listed with lisinopril, but still some potential for kidney problems with ramipril. It looks like ramipril is often prescribed twice/day instead of once. Maybe that's why nephs lean toward lisinopril? Or maybe lisinopril is less expensive? I don't really know though. I hadn't heard of ramipril before.

I don't think I'd call myself a pro at anything! I don't know nearly as much as most people here. I guess it's like that monument next door. If you've lived next to it your whole life, you probably haven't stood in front of it to read the inscription. It's just always been there; you see it, you know it's there, but you mostly ignore it. I do know I'm very fortunate to have had such a slowly progressing disease. I was diagnosed when I was 9 years old, in October 1972. Other than taking meds and the psychological effects of a lifetime of living in limbo, I've been able to live a "normal" life for the most part.

Wii is separate from Xbox and PS3. I think the others might also have fitness games for them, too, though, if you have one of them already. I didn't do a lot of homework before I bought my Wii, so I can't tell you much about the others. For the Wii, I bought EA Active and Wii Fit. The Wii comes with a sports package that includes things like bowling, baseball, golf.

Wii Fit and EA Active use a balance board (about a 1-foot by 2-foot platform) that you stand on to do some of the activities. The balance board uses your weight distribution to give you feedback about how you're balancing your body.

Wii Fit has balance, yoga, aerobic, and strength-training exercises with an on-screen indicator to let you know if you're leaning too far to one side or the other, or leaning forward or backward too much. It also includes a built-in scale to let you set goals and measure your progress. The exercises are gentle compared to EA Active and some of them are fun, like juggling, flapping your arms to fly from pedestal to pedestal, an obstacle course, inline skating, step aerobics, using a hula hoop, riding a bike (it's really jogging in place). I haven't tried them all yet. You pretty much choose the individual exercises you want to do and there are a lot to choose from.

EA Active has a 30-day challenge program that I love/hate. It has a set of routines that it walks (runs / tortures) you through for a 30-day program, increasing the intensity and changing the exercises a bit every day. It has you running, doing lunges, squats, arm stuff with an exercise band, etc. The routines are about 1/2 hour each day.

[Jean]

Forgot to add, my creat is 2.24 and Bun is 36. Not too bad I dont think. They are not bouncing around, they are just very slowly rising.

[woodsman]

Good news is that this is probably the worst it will look!  When will you get the staples out?

Staples are out and healing continues but it still feels like a creature crawling  around on my arm...  and yes the tape was a real pain, my wife is a nurse and she just ripped it right off and said "don't be a baby"  but i still love her...

[Jean]

Aren't nurses wonderful? LOL!!!! I know you love her. Be grateful you have a nurse for a wife, I would love a Dr. for a husband. ( I think )

[Deanne]

I bet before she ripped the tape off, she said, "This won't hurt a bit!" Nope -- didn't hurt her! LOL! I like the fast, get-it-over-with approach myself, too, though.

[woodsman]

I bet before she ripped the tape off, she said, "This won't hurt a bit!" Nope -- didn't hurt her! LOL! I like the fast, get-it-over-with approach myself, too, though.

Well i did not like the get-it-over-with way i was pulling slowly and she stepped in and "RIPPED" and it was over. My wife is a 2nd year nursing student and will finish next year then be a LPN. I think i'm gonna need her. She has really stepped up and she is into her 50's going back to school just to take care of little ole me.. Woman are the best...

[MooseMom]

Urp.

[dread]I have a neph appt later today.[/dread]  I had my bloods taken last week, and no one has called me to tell me that my potassium is dangerously high all of a sudden or that my kidneys are about to implode, so I'm hoping that I might get a reprieve.  It has been really cold and icy here, but in the past couple of days, it has moderated a bit and the ice is gone, so I am more confident about going out for my daily walk without the fear of slipping and breaking my butt.  I figure if I can walk each day and not throw up or grow a second head or some such bizarre thing that my neph won't be insisting that I start D, which is all I care about.  I have absolutely no idea how my other numbers will be, and that's the part I hate.  I just never know what to expect.

I have some questions about dialysis modalities (ie NxStage and/or nocturnal) that I have been putting off asking because I tend to weenie out, but this time I will try to get some answers. 

I've now decided that if I get a reprieve, I will treat myself and DH to a nice dinner out.  After the anxiety of these appts, the last thing I want to do is faff about making dinner.

Anyone else have pre-D appts coming up?  God, I hate these things, I really do.