The ole neph appointment again on wednesday

[woodsman]

I have to see Dr. Javed at 1pm on wed, this is always a stressfull event even for me. I try not to think about it but it just comes back when i least expect it...
 oh well i guess i will get good or bad news but what can one do... life goes on..

[willowtreewren]

I hope it goes well....

 

[MooseMom]

Ooooh, great minds think alike!  I was thinking about this thread and was wondering if anyone had one of these dreaded appts coming up soon.  I have one on 7 April.  Ugh.  You just never know what to expect!  I mean, you can't feel it if your bp is high or your potassium is high or your this, that and the other is abnormal.

You have my sympathies!  I have my Xanax at the ready.

Let us know how it all goes.  I'll be thinking of you tomorrow!

[Jean]

If only my neph would just e-mail me the results of my blood work, I think I could face up to the meeting without panic. Really, at this point, he has nothing to say but read my numbers, and they could just as easily e-mail them to me. He just keeps telling me I am stable. Yes, I know this is a good thing, however, waiting for the appt is just stressful.

[MooseMom]

My primary care physician has all of my info on his nifty neat-o laptop.  My neph, however, has all of my labs from the past 7 years in a folder, so there's paper everywhere.  I doubt that email is on his radar. 

I can get my results at the lab's website, but I have to get my neph to sign on to that first, and for whatever reason, I just haven't done that.  Jean, you might be able to do that if you wanted.  When is your next appt?

[boswife]

im 'just' the carrer, but those appts always  stressed me too.....until............... kiaser started where you could get your blood results right off the computer the same day of test, (or some took a couple days,) so then when we went in, i was on top of it which takes you out from the suspense and all the thoughts that go with it.  Im sorry your having to feel this    i  for some good news for you to bring you some comfort until the next time    One thing that sucks about now being on home D  is that WE take his blood and send it in but WE dont get the results back unless we call in after a few days and bug the center..  They are good about it but i wish it was like when we take blood through kiaser not the centers labs.  Will be thinking about you, and i hope your eve is peaceful.

[Deanne]

I hope it goes well! I hate that pre-appointment stress. I wish I could see my lab results in advance, too, but I don't think my lab emails them to patients and my neph isn't very computer literate, so they don't have anything set up to share information electronically yet. Hopefully someday...

[Sugarlump]

I've got mine well trained emails the results of my blood test every time ( the face of modern medicine) now so no waiting and wondering ...works a treat. If we both had webcams could do away with clinic visits!!!

[MooseMom]

The neph's nurse takes a copy of my labs and has them on my file waiting for me when I check in.  So, I get a while to look at them before I actually see the doctor.  I guess I could chase him for permission to get them posted on the lab's website, but if I see some horrible number, then I'll still have to wait several days before I can see the neph and ask him it means I'm at death's door.  I'll still panic!

There have been a couple of times in the past 7 years that some number has really gone wonky, and the nurse has called me to tell me whatever.  So I now have a plan.  I get my labs done on a Thursday.  I know I won't hear from anyone over the weekend, so I have a weekend without worry.  If I have not heard from the nurse by Tuesday, I know that if there is a problem, it can't be that bad.  Then I have my appt on Thursday, one week after my labs.  That's when I see the actual results.

I've come to the realization that if I need to go on dialysis, I'd know it.  The worst case scenario is to hear him say, "It's time."  As long as I feel well enough that I don't think "it's time", well, I don't panic quite as much.

[woodsman]

Well than goodness its over once again for 10 more weeks. He said i was about the same as last time i visited in December. I am at 9-10% and holding. He asked me which treatment i would want and i became very agitated at the many ways of doing this dialysis, he recommends home PD i  said in home nx stage and he still insisted on PD as the best way for now. But that means no more swimming, i have a huge pond and a hot tub and both would be out of the question, no soaking hot bath.... I was now ready to just pick up and leave. What are you thoughts on what to do, PD HD lmnop.... i am as confused as ever now. Next appointment is June 1st and he then wants me to begin dialysis but i told him if i don't feel it then it's not going to happen. I am also considering
maybe to just allow things to happen as they may and go out with some dignity intact. The thought of a tube hanging out does not sit well with me and this whole odeal is pushing me the wrong way i fear....

 

[Deanne]

I used to think that way, too - just let nature take it's course. I changed my mind after seeing how well so many people here do. People can still have a life while on dialysis. Maybe I'll change my mind if I have to go on dialysis, but for now, I figure I'll try it if I have to. I can decide at any point that it's time to quit. I hope you give it a chance, too!

[MooseMom]

Woodsman, YOU are going to have to live YOUR life with the modality YOU've chosen.  Your neph should not be telling you which is the right way to go.  Ironically, the first time I talked to my neph about modalities, he recommended PD, and in researching it, I decided against it for the same reasons you are emphasizing...no more swimming.  Each summer I buy a pass to the public pool at our local city park. It is so beautiful, I love it.  I grew up in hot Texas and spent hours in the pool, but when I moved to England, well, it's too bloody cold to swim!  Now that I'm in Chicago, I get only three months to swim.  It is the one thing I can do on a regular basis that keeps me sane.  I slide into the water and can feel my stress melt away.  It's good exercise for the body and it is a comfort to my soul, and I refuse to give it up if I don't have to.  So, no PD for me.

You do not have to make a decision right now.  You already have a fistula, don't you?  I'm sorry...I can't remember.  Anyway, there are a lot of websites that could help you out.  Try www.homedialysis.org; they have a lot of info on home dialysis, both pd and hemo, and they have a forum where you can ask questions from professionals.

My transplant coordinator told me that I'll know when it is time to start D.  You're smart enough to know, too.

[willowtreewren]

Woodsman,
My husband would NOT consider PD because he cannot stand things touching his skin (the man would be a nudist if possible). He doesn't even wear a watch.

The swimming wasn't an issue for him, just the tube.

Take your time learning more about modalities. It is an unfortunate fact of kidney disease that the nephs don't give you all the information you need. And it seems that they have their own biases. Once YOU choose how you want to approach dialysis, make sure your neph is on board with it. If not, you may have to change nephs.

Moosemom, I understand, understand, understand about being in the pool. Our swimming season in Tennessee is five SHORT months long. I couldn't take its end this year and joined a gym with a pool. The monthly fee is far less expensive than psychological therapy and so much more beneficial. You might want to consider this option.

Aleta

[paris]

Glad the number is steady.  If always feels like a reprieve has been given when the number is the same.   Try not to think about it too much for the next 10 weeks.   I changed my mind about which treatment every other week.  I had lists of pros and cons for every type.  Still don't know!   It will all fall into place.  Don't let kidney disease consume more time than need be.    Has spring come to your area yet?   Everything looks better in the springtime.  Yes, I am sure there is a little Pollyanna in me!  LOL!    Glad the visit is over for now.   I have labs in the morning. Always interesting!

[MooseMom]

Moosemom, I understand, understand, understand about being in the pool. Our swimming season in Tennessee is five SHORT months long. I couldn't take its end this year and joined a gym with a pool. The monthly fee is far less expensive than psychological therapy and so much more beneficial. You might want to consider this option.

Aleta

Indoor pools are anathema to me.  Swimming is supposed to be outdoors.  Our park's pool is in such a beautiful setting, right by the river with the golf course next door.  I like being out in the sunshine, looking up into the trees and over the riverbank.  It's the visuals that delight me; there's not much to look at in a dank, humid indoor pool in the middle of a February in Chicago.  I go snowshoeing instead.  I need the fresh air.

I'm just picky...

[willowtreewren]

Indoor pools are anathema to me.  Swimming is supposed to be outdoors.  Our park's pool is in such a beautiful setting, right by the river with the golf course next door.  I like being out in the sunshine, looking up into the trees and over the riverbank.  It's the visuals that delight me; there's not much to look at in a dank, humid indoor pool in the middle of a February in Chicago.  I go snowshoeing instead.  I need the fresh air.

I'm just picky...

Oh, boy, do I understand! When I'm in my pool at home, I'm soaking in the birds, the trees, the clouds. I've even had a deer walk into the yard and look at me.....

But this year I knew I wouldn't make it from the end of September until sometime in May without getting my pool exercise. From the pool at the gym I can still see the sky (out the windows), and the occasional bird, but it is NOT the same. Just a life line until I'm back in nature. 

Aleta

[woodsman]

I am feeling better today but i wish spring would come, its snowing out right now and it just has to end.
I don't want to do PD for swimming reasons and i do have my fistula installed in my left wrist area, doctor said it was maturing nicely.  I hate needles but the wrose of 2 evils are PD no swimming and a hose hanging out or the needles and maybe someone who does not know what they are doing at the center or at home jabbing myself.... I have a great wife and she is now a LPN and she has agreed to the NX stage at home but i don't know if i want to berden her with all this when i can just go to the incenter and do it ther. decision decisions...

this is where i swim in the summer and i really hate to give it up, behold my back yard.

[MooseMom]

woodsman, I wouldn't give up swimming, either, if I had that in my back yard!

Listen, you are a smart man, and you're basically pretty healthy, right?  I don't see any real reason why you can't do NxStage at home with YOU doing most of the work.  I know that home hemo isn't for everyone, and it is true that it can place a domestic burden on the family.  But unless I really have misread your situation, I don't think it will be as much of a burden as you may think.  If your wife had to do everything for you, then yeah, that might pose a problem, but I sense that in your case, the benefits are going to vastly outweigh any "burden."  Nothing is easy in this life....NOTHING!  Preserving your health will take some work, but you will be safer, more comfortable, healthier and not burdened by the clinic schedule.

If you decide that NxStage is not for you, you can go back in center.  Or, I guess you can try in center for the first six months to a year and see how you get on.  I have been told that everyone should experience in center so that they will fully appreciate D at home.

You've got a great home, a great wife and health that isn't too bad, considering.  Why leave all of that behind if you absolutely, positively don't have to?  I think you may be the next NxStage star!   

[looneytunes]

Wow WM...what a great place to live!  Beautiful photos, thanks for sharing them.

[noahvale]

**

[Sugarlump]

I love your "backyard" especially the trees. Really beautiful! 
Only thing I would comment about dialysis, it's a very personal thing, but I liked to go to dialysis unit for haemo Mon wed Fri and at all other times not think about it or see it, particular at home. Could shut the door on it as I went home X

[willowtreewren]

Boy, I thought I had a lovely back yard! Yours is WONDERFUL!

Stick to your guns.... 

Aleta

[Stoday]

Before I started dialysis I was sure I wanted to do home hemo. The renal unit was very happy with this and would give me all the training and support I needed.

However, I thought I'd try in center hemo first for six or twelve months first, to see what's really involved. Experience is always better than just reading about it.

It's now 8 months since I started. I've got used to the system. I get a taxi to and from the unit. I dialyse on the twilight shift and that fits in very well with my lifestyle; I don't feel I'm losing 15 hours a week at all. I've seen how much work the center staff have attending to the machines.

I'm inherently lazy. I've changed my mind.