Nearing time for dialysis

[dac0214]

I'm new here, a 50 year old male, with ADPK, and closing in on the time when I will need dialysis. Since my mother suffered from this same problem, I saw here through 2 periods of dialysis, as well as 2 transplants, so I'm probably more knowledgeable about what to expect than most. I've known for 20 years that this day was coming, yet it still has me concerned.

At my last appointment with my nephrologist, he let me know that I would likely need to start dialysis in the next year, and that it was time to make some decisions. I met with a social worker, and decided that, despite my fear of needles (and occasional problems with light-headedness when having blood drawn), that hemodialysis is still a better choice for me than peritoneal dialysis would be. So, now I need to see a vascular surgeon for a fistula. BTW, I am also on the waiting list for a kidney transplant.

My immediate concerns are these: Firstly, I'm attempting to lower my intake of protein, in hopes of getting a few more months of dialysis-free life, and hoping that perhaps a transplant will come before the need for dialysis. Unfortunately, it's really hard to keep on a low-protein diet at work, and I often feel tired.

My second concern is the fistula. I use my arms a good bit at work, and need to be able to lift things. Large, bulbous veins sticking out will make that difficult, and frankly, I hope to still be able to wear a short-sleeve shirt once in a while. I'm hoping on an upper-arm fistula, but was wondering if a thigh fistula is worth considering?

Any suggestions would be greatly appreciated.

[IHaveFaith]

Re: Nearing time for dialysis

Hello Dac,

Welcome. I am assuming that your doctor has placed you on a renal diet thus you know which foods are to be avoided or consumed in moderation. You may wish to look into water soluble vitamins to help with fatigue and they are easier on the kidneys as well. Take small snacks to work that are convenient for you to eat periodically throughout the day to help with your fatigue.

Have your doctor check your thyroid function to make sure this is not contributing to your fatigue. You may wish to be checked for anemia as well. Being tired is something we all have to work around. You just want to make sure that your doctor has been thorough in evaluating all your labs and correcting any other imbalances that may be contributing to your exhaustion and once that is done, hopefully you can feel better by getting adequate rest, taking supplements, eating frequent but smaller meals and maybe even throw in a little exercise! I know it is hard to think about exercise when the recliner looks sooooo inviting but I promise if you stick to it for a few weeks you will have more stamina to get you through the day!

We have some members that will be able to help more with your dialysis and fistula concerns so you can expect some excellent feedback from them.

My best to you.

[janicejanice]

Re: Nearing time for dialysis

I am also nearing dialysis. If you are working, I can understand why you would not want to do CAPD. But have you considered the nocturnal cycler? My research indicates that it provides a more liberal diet and fluid intake, usually requires no more than one daytime exchange, more stable blood pressure, and a better energy level. I am retired, but very active. I have decided that for these reasons, hemo will be my last resort--there if I need it, but not something I'm gonna run to. I'm not questioning your plan, I just want to be sure that you've been presented with all the latest options. Good life to you.
Janice

[lcavender]

Re: Nearing time for dialysis

I would reconsider PD if I were you. You can still work full-time on PD - yes, even CAPD. I was on the manuals (CAPD) for about three months and then switched over to CCPD, using the cycler. I do all my dialysis at night while sleeping. Dialysis is a drag for sure, but PD gives you more freedom to work and travel.

[gsxrjt]

Re: Nearing time for dialysis

Don't let dialysis worry you too much. I had a fear of needles and would pass out giving blood all the time. You will get use to it if you choose hemo. I would suggest home hemo which is what I do. Only you habe stick yourself or have you care giver do it. I never thought I could but I do now and have a fear of others doing it for me! Home hemo will guve you lots of freedom other that having to sit at home in a chair for a little over three hours. I still work full time and work out every morning. Something I could do while doing in-center. In-center wears you down because your only dialysis three times a week instead of 5. As far as the fistula is concerned, when I got a transplant in 2006 I went back to work as a aircraft mechanic and I was lifting things and working with my arms in tight places all the time and it didnt bother me. You just have to be a little more careful. The thing I hate about my fistula is I can hear it if my arm is on or under my pillow when I sleep! Anyway you'll figure out what is right for your lifestyle. Good luck and dont let dialysis stop you from living your life! I didnt and dont.

[dac0214]

Re: Nearing time for dialysis

Well, i did consider PD, but have decided against it for several reasons:

1) I have polycystic kidneys, which makes me a poor candidate.

2) I have cats.

3) I move around a lot in my sleep, and noises wake me up easily. Those units for nocturnal dialysis make beeping noises.

4) I swim, and usually end up each exercise session with a soak in the spa.

5) Going through life with a hose sticking out of me is NOT something I want.

6) There is a greater chance of infection with PD

BTW, it is always recommended that you have a fistula, since most people on PD will at some point need to stop doing it for a period of time when they do get an infection.

[lcavender]

Re: Nearing time for dialysis

There are a lot of PD patients with polycystic kidney disease. The notion that people with PKD are not candidates for PD is false. I'm a good example. My mom also had PKD and did both hemo and PD ( not at the same time of course). Hands down she prefered PD.

I have three cats. They are just not in the room while I connect or disconnect. Never had a problem with them bothering the supplies or eqiuipment.

My machine doesn't make beeping noises but it does make soft hissing and pumping noises. Occasionally an alarm goes off.

I don' swim. I believe you can't swim in a pond or river but a chlorinated pool is okay. I've heard of other PD patients that swim every day. They just cover up their exit site really good.

After a while you don't feel the hose sticking out if your body. I see it as a temporary thing until I get the kidney call and get transplanted.

If you follow the cleaning procedures each and every time you won't get an infection. I've been on PD over 2 years and have not had an infection yet. I know others who have been on it longer with no infections.

I realize PD is not for everyone. Some people don't have the desire or discipline to take
responsibility for their own treatment. But for those of us that like more control, PD is great.

[deh609]

Re: Nearing time for dialysis

I,m new to this forum.I,m planning on PD in the future,hopefuly not near. I,ve had kidney problems since I was a kid. And surgry in 1975. Seem to be doing good till now.Hope to get to know some of you over time.
Type 2 Diabetes -1994
High BP
CKD stage4 -Mar.2012

[LindaE]

Re: Nearing time for dialysis

Hi, just wanted to welcome you! I've been away from here for awhile and tonight was my first post in ages. I was on dialysis for about 2.5 years before I received my transplant that will be 7 years old in July. My surgeon now wants to remove or tie off my fistula as it is still functioning so well it is comprising my heart. I also have type 2 diabetes brought on by my transplant meds but believe it or not I would still do another transplant with no hesitation. Any help I can be please don't hesitate to ask!

Linda

[maryann]

Re: Nearing time for dialysis

My husband is also nearing time for dialysis. I know many are using PD at home. How come I did not see nxstage mentioned?. I have been trying to get more info on it but is seems it does not seem as popular as PD. So far everything I hear is positive. I wonder why it is not mentioned more often with regard to home hemo. Good luck to all

[IHaveFaith]

Re: Nearing time for dialysis

I believe forum member M3Riddler is very knowledgeable about nxstage and here's a link below to their site for you to visit and perhaps get some more info from there. Also, there is another forum member Rick Berkowitz, who I understand, is also familiar with nxstage.

There are probably others and most everyone is really good about helping out so I am sure you will get additional feedback about nxstage as this post is read.

http://homedialyzorsunited.org/

[Nicole28]

Re: Nearing time for dialysis

I am new to Davita. I've decided that if I have to go on dialysis, I'm going to do home hemo. I've heard that the diets not as restrictive. It's less strenuous on your body. You can dialyze anytime of the day.

[deh609]

Re: Nearing time for dialysis

Thank you LindaE. I have a cat and a Pug dog, and was told I can keep them just don't let them in the room that I perform PD in. Is that correct ? I don't want to get a infection. I hear they can be very bad.

[dac0214]

Re: Nearing time for dialysis

I am new to Davita. I've decided that if I have to go on dialysis, I'm going to do home hemo. I've heard that the diets not as restrictive. It's less strenuous on your body. You can dialyze anytime of the day.

Nicole, keep in mind that home memo is NOT for newbies. Unless you have a nurse at home, you and your 'care provider' will need to go through several weeks of training, plus they will send a technician to your house to see if it's a good match, and then the cost of the equipment is not trivial-insurers want to be certain that this is right for you before they shell out the money, even if it does save them in the long run. From what I've heard, you need to be on in-center hemo for at LEAST 6 months first, before they consider you for home hemo. During that time, you will probably need to learn how to stick needles into your fistula yourself, and get some practice.

[Nicole28]

Re: Nearing time for dialysis

Dac0214 you are correct. I have been working very closely with my local dialysis center. This is the treatment I have decided on. My father did in center hemo for almost 20 years and I've seen the stress it put on his bady. My younger sister did PD for a few years and she did not care for it. She too may have to go back on dialysis in the future. She has also decided to do at home hemo. Thanks for the info on insurance.