not yet on dialysis but lots of questions

[bill44]

Hello, my name is Bill and I live in Dallas, Texas. I am 66 yrs old, play in 2 tennis leagues each week. I weighed 156 when I got out of Air Force in 1966 and weight has not deviated more than 5 lbs since. I am very fit and healthy. My problem is I have cancerous tumors that like to grow in my urologic tract. I started battling cancer 11 years ago; lost left kidney 6 yrs ago, bladder 4 yrs ago and will lose remaining kidney next Wednesday. The kicker is that the kidney is completely healthy and does its job but unfortunately has to go for me to continue living.

OK - immediate questions:

  When I have the  fistula put in, what are pros and cons of forearm versus upper arm; or should I leave decision completely in hands of vascular surgeon.

Next question, if I follow diet/fluid restrictions, can I thrive on 3/X week in-center?

Three weeks ago I had no idea that I would be facing dialysis and this site seems to have a lot of straight answers without bias from providers.

Thanks

[paul.karen]

I dont do Hemo i am a PD dialysis patient.
But from what i have gatherd most people get a fistula in the arm they use least and generaly start low on the arm.  Sometimes even the wrist area.  This is incase the fistula stops working there is still places to put a new one. 

[looneytunes]

Hi Bill and welcome to IHD.      You have indeed found a great place to ask questions and learn all about the world of dialysis.  I am a caregiver to my husband who has been on dialysis since 2007.  I'll leave your specific questions to those members who have "first hand" experience with this but I'm glad you joined though sorry you have a reason to.  I'm looking forward to seeing your posts and hope you come back often. 

[texasstyle]

That's what the surgeon told us also about starting on the forearm. "If" you ever had any problems they would go to upper arm and if neccessary go to the forearm of the opposite arm. I hope that never happens to you. I don't think you have a choice in it's position.I believe most people can keep life as normal as possible but you do want to be careful with it. Never have anyone takle  your blood pressure from the fistula arm side and even watch putting that arm under the pressure of a pillow with your head on it while sleeping. They fuse an artery and a vein together to make a giant artery and such foreful blood flows goes there. You will even feel the "thrill" in it. Like an electric buzzing sorta if you put your hand on it. It takes a couple months to mature to start using it. My husband had a squeeze sponge he used at first to help build it up. Only your Dr. will know for sure if 3x a week is adequete for you. Most people (not all of course) do 3  3 1/2 sessions a week. Remember healthy kidneys work 24/7. Fluid is an important factor but it's also about having enough dialysis to regulate your body's needs for what your kidneys would have done. Dialysis will take out dangerous things like potassium among other things. During dialysis they usually give you a medication to stimualte your body's red blood cell production too. Your kidneys normally make a horomone to do that and without your kidneys, you need a synthetic horomone to do the job. EPO. That's short for something. Hmm... lol   Many people live a long time on 3x a week but obeying your renal diet is so IMPORTANT. I have a feeling you will. As as caregiver I come here for support but I have learned so much along the way. The more you educate yourself the better off you will be. Glad you came here

[peleroja]

Welcome to the group.  This is, indeed, a great place for answers.  I'm on PD and can't answer your questions, but someone will come along and know the answers.  Glad you found us! 

[RichardMEL]

Hi Bill,

First of all, welcome to IHD! Hopefully we can help you as you embark on this new stage of your life.

Re fistula - as others have said - it is more ideal to get it in the lower arm if possible - that way they have another option in the upper arm if the lower arm blocks/fails. If you do the upper arm first they CANNOT then go use the lower arm, since the upper would have already blocked access (if that makes sense). It's more unsightly to have it in the lower arm yes, and will restrict movement of that arm more when on the machine, but it is way more ideal to have it in the lower arm first if possible. That's where mine is.

Also note it will take 4-6 weeks to mature before it is ready to use, so if your kidney is coming out next week you'll probably have a catheter placed for dialysis in the meantime.

About being able to "thrive" on 3X/week - I would say, given your overall health and fitness, that you should be able to do OK while on dialysis - however everyone is different, and you may be affected in some other ways related to your specific condition. Definitely keeping active and exercising as much as possible will help, as well as sticking with the diet and fluid restrictions as you intend to do. I would say you should still be able to maintain your lifestyle more or less within those restrictions.

Again glad to have you with us and hope we can be of help to you!

 

RichardMEL, Moderator

[galvo]

G'day, Bill, and  . You've already got some really good info. I went on HD at your age some 16 months ago and I'm still here. It can be a rugged journey but this site really helped me and still does. Stick around and ask all the questions you can think of. Best of luck.

[WishIKnew]

Have you considered PD?  Is that an option for you?

That's what I do so, like some of the others, I can't really answer your  fistula questions.  But, I do want to welcome you to IHD!

[willowtreewren]

Hi, Bill. Welcome!

 

As others have said, starting in the lower arm leaves the option of using the upper arm later if needed, but your vascular surgeon will make the final decision based on what your veins are like and what will work best. My husbands fistula in his lower right arm (he is left -handed) had lots of area for cannulating. We did dialysis at home with a NxStage machine, so I got very familiar with sticking him 6 days a week. 

But doing the more frequent dialysis kept him VERY healthy and is easier on the heart and other organs. After 2 1/2 years of dialysis he got a kidney 2 weeks ago today and went back to work yesterday! His transplant team called him a "picture perfect patient" today and reported that his creatinine is now down to 1.3.

With your already good health, you should do all right with dialysis. You WILL have to watch your fluid intake, as you already know.

Best wishes as you start this journey.

Aleta

[MooseMom]

The "ideal" place for your fistula will be wherever it will work the best.  Since you are in otherwise good health, chances are your fistula surgery will be a success and you will end up with an excellent access.  People who have a compromised vascular system due to other maladies like chronic hypertension or diabetes suffer most often from failed accesses, so it is probable that you won't have that problem.  Your vascular surgeon will map your arm to find the best place, and that is the time to air your concerns.

I have not started dialysis yet, but to be honest, I have never found anyone who has been able to claim that they "thrive" on standard 3xweek hemodialysis in clinic.  I asked that very question myself on this forum, and I got no positive replies, and that tells me a lot.  How can anyone possibly expect to thrive when your blood is being cleansed only three times a week when your kidneys are supposed to work ALL THE TIME?  So, no...I don't think you will "thrive".  But you should be given choices.  A healthy, pro-active patient like yourself should be given the choice to do dialysis at home.  EVERYONE should be able to have access to more frequent dialysis, but the sad fact is that here in the US, many patients don't have that choice and are herded into clnics without being informed of their choices.  We have a forum on IHD for both NxStage and for nocturnal dialysis, and it might be an idea for you to check those out.   More frequent dialysis means better health.  It means fewer dietary fluid restrictions.  Having fewer dietary restrictions is important because your chances of becoming undernourished diminish.  In having to restrict the consumption of so many otherwise healthy foods, you also miss out on important nutrients. 

It must come as a terrible shock to you to have this suddenly happen.  I can't imagine what it must feel like to be cancer-free but at such a cost.  As willowtreewren has pointed out, it IS possible to THRIVE on dialysis, but to do that, you will probably find that you have to take matters into your own hands and lobby for frequent dialysis, certainly more than the standard inclinic template.  If you need to start out in clinic, that's fair enough, but if you are going to be a long-term dialysis patient, then please look into NxStage or nocturnal or home hemo with another machine.

(If you can do nocturnal hemo at home, then you'd have fewer or NO dietary restrictions AND you could dialyze while you sleep, thus freeing up the day to play tennis!)

I wish you all the best and am eager to hear what you decide as I am still in the pre-dialysis stage myself.  I am always interested to hear about how other patients decide on what sort of treatment they want for themselves and how they get it.

[Zach]

Good to have you here!
 

[bill44]

Thanks everyone for the follow-up replies to my questions.

[Desert Dancer]

Hi, Bill and  to IHD! This is definitely the place to be given the place you're in. What a shame you have to lose a perfectly healthy kidney, but better safe than sorry.

As to the fistula, it will pretty much be up to your vascular surgeon; it all depends on the state of your veins and what he finds 'usable'. Generally speaking they like to start at the wrist and work their way up, as it's not possible to do it the other way 'round. (And since this might be one of your next questions, the anticipation of fistula surgery is far worse than the actual surgery itself.)

Can you thrive on 3x4 in-center? Well, it seems as though you've kept yourself pretty fit so you may have a leg up there, but in general I'd have to say no. What you need to understand about the 3x4 in-center model is that it's based on financial considerations - not medical ones - and thus it is the absolute minimum dialysis you need to survive. If you truly want to thrive, I believe you're going to need to take matters into your own hands and choose a modality that lets you dialyze at home; there are several options on that front. Myself, I do nocturnal home hemo and have NO dietary or fluid restrictions at all, plus I feel fantastic. There are lots of folks here who do peritoneal dialysis (PD) and find it gives them a lot of freedom, too.

[billmoria]

  Hi Bill   I am also 66 and former tennis player but I have other medical issues. For what it is worth; my fistula is in upper left arm. As others have said on here, it was my doctors choice after he open me up. I have been on dialysis for 4 years and have used the fistula for 3.5 years. works well

good luck

[carol1987]

Welcome Bill!   Others have answer your questions..
This is indeed a great resource... as you begin your journey you can post about anything you experience and most likely find someone here who has had the same thing happen and some great advice...at the very least you know you are not alone!!