HD side effects

[enginist]

I have some questions about the side-effects of hemo.  The main one is, can I run?  Could I do a 5k?  The second one concerns the dialysis diet.  Is it more restrictive than the standard renal diet, which is bad enough?  Finally, would my mind be enveloped by a fog?  Would I be able to read with as much pleasure and comprehension as I do now?  And could I still enjoy my hobby, recreational math?

It all comes down to quality of life.  I don't mind needles and can deal with pain.  But if the QOL is lost, then there is no point.  It's just staying alive to stay alive, forgoing most or all of the things that make life worth living.

[Cowdog]

Hi Enginist and welcome,
Sorry for the late reply.
Yes there is QOL. If you don't have a lot of other issues you can continue with pretty much everything you did before kidney failure.
I'm fortunate that I "only" have kidney failure. I've been on HD since Oct 08. I still work and still have my farm. HD to me is just a part time job with no days off and no vac.
Some days I'm a little worn out after treatment buts that's usually because I had on and had to remove more fluid than I should.
HD diet calls for a lot of protein, low phosphorus, low potassium and low sodium. I eat pretty much what I want in moderation. Your labs will dictate what works for you and what doesn't.
I've never experienced the fog you ask about. Only side effect that I have is what I call dialysis brain post treatment. my body will be tired and I need to go to sleep but my mind is racing thinking about everything. I've always thought the clean blood stimulates my brain.
If I can help don't hesitate to ask.

[kristina]

Hello enginist and welcome to IHD,
I am not sure about the running, I never run, but I go for walks and that is possible.
The dialysis-diet is in my case the same kidney-friendly vegetarian diet as I was adhering to when I was still pre-dialysis.
Whether your mind develops a fog or not, depends possibly on your diet. Please ask your dietician. In my case it goes like this : the more I adhere to my vegetarian kidney-friendly diet, the better my grey cells serve me and there is no fogginess. Mind you, after a long weekend, there is on TT (=Terrible Tuesday) sometimes a little fog to be noticed, before I  start with my first dialysis-session of the week ... and then it is all back to normal again without any fog. I have noticed that the more strictly I adhere to my vegetarian kidney-friendly diet, the better is my quality of life, including a bit more energy, less fog etc. It is all a balancing act ... and I do hope you find your own way with this...
Best of luck wishes from Kristina.

[enginist]

Thanks for the response, Kristina and Cowdog.  Both of you seem to have adjusted well to what seems dread to me.  Like you, Cowdog, I have no comorbidities, so maybe I can remain as active as before.  If you can run a farm, I can probably run a couple of miles.  And like you, Kristina, I'm thinking of going all-vegetarian to try and reverse the decline of my GFR.  Last year, it jumped from from 16 to 24, which made me euphoric, but then it dropped five points this year, an ominous decline.  I may have gotten a little complacent about my diet.  Again, thanks to both of you for being such good examples for me to follow.   

[Charlie B53]

I can answer every one of your questions with the same one question.  WHY NOT?

Dialysis doesn't lilmit us.  We tend to limit ourselves.

Diet and fluid control is essential.  Period.

Learning to control those foods high in potassium and phosphorus is critical.  You can still have some, just not much.  Moderation of things is the key.

Fluid control is critical.  The more fluid that needs to be taken off with treatment the more 'shock' this places on body systems.  Tiredness, muscle cramping are the two major symptoms of large fluid take-offs.  Limiting my fluids, keeping my take-offs at or under 2 liters makes it far easier to stay more active.

Runners carb load, you can still do this.

You will learn how much fluid you sweat off and what fluids you can best use to stay hydrated during a run.

It takes a lot of practice. Keep a good scale at home sso you can check your progress.

Like already mentioned, wear pretty much the same weight clothes to treatments as the clinic scale won't tell if your new boots are 3 pounds heavier than your tennis shoes, they will assume you have a few more pounds of water to remove.

Always go to the bathroom and make sure you are not full of it as that is weight.  Here again, they will assume that is water needing to come off.

Eventually you will cramp.  Mine usually occurs while sleeping.  Get UP!  Stand up and walk.  Moving for me is the quickest way to end leg cramps.
Watching my diet and fluids as hard as I do I am still losing the extra weight I have always carried.  I am already 20 pounds under my High School Football weight, years in the Army, and most my adult working life.  For me, it hasn't been the easiest, but not bad either.

Take Care,

Charlie B53

[enginist]

Some of the posters on this site seem to struggle with dialysis.  It would not be an exaggeration to say that they actually hate it.  You, on the other hand, seem to have adjusted well to it.  I suspect you're in the minority, but it's encouraging to know that it's possible.  It will help me to decide whether to try it or opt out as I approach the inevitable.

[kickingandscreaming]

It helps to look at it as an part time job.  It can be a burden, but it is what keeps me alive.  I don't always want to be alive, but most of the time I do.  And during that time, I'm grateful that it's there.

[enginist]

No, I don't always want to be alive either.  I've always been in good health, free of pain and discomfort, and yet I've never wanted to live forever.  At a certain point, the tipping point, the good is outweighed by the bad, and it becomes a business decision.  Dialysis may be that point.

[kickingandscreaming]

You certainly have that right and option.  But you may want to give dialysis a shot.  If you hate it you can stop.  But if you can tolerate it, then you can go on living. If not, then you really haven't lost anything.

[PrimeTimer]

Hubby says he feels a heck of a lot better being on dialysis than he did in the years leading up to it. He's 60 and still works a semi-physical fulltime job. Lots of walking, lots of driving, climbing stairs and even ladders and often in hot weather. On the other hand, there is also "the other" side effects to deal with...insurance, stress from the uncertainty, family/friends, emotional and mental aspects. He does experiences brain fog but we don't know how much of it is age, stress, dialysis and dealing with stupid drivers in traffic. He's still pretty sharp at doing math. He was born gifted.

[Michael Murphy]

The best answer I can give to the limits of hemo is check out the photo posted by Bill Peckham of him sitting on a raft in the middle of the Grand Canyon using a nextstage to do his dialysis in the gorgeous setting.  After almost 6 years on HD I find that most of the limits are self imposed.   Panning and perseverance can in almost all cases overcome the limits imposed by Dialysis.  Add in the fact that it keeps you alive, and yes dialysis sucks, dead sucks more.

[enginist]

Thanks to each and all for your replies.  One last question for the guys: Can I do chin-ups with a fistula?  And one last question for Kristina: What are the staples of your vegetarian diet?  I've seen the phosphorous pyramid on this site, which encourages the consumption of beans.  Having been a student in New Orleans, I can live on rice and beans.  But what would you use for a sauce?  Bear in mind that I have zero cooking skills.  And then to compound my confusion in the kitchen, some information on the web is contradictory in nature.  For example, DaVita says that ricotta cheese is permissible, but the Mayo Clinic says it's not.  Who to believe?

[iolaire]

Can I do chin-ups with a fistula? 

Doctors will say something like you are not supposed to lift more than 10-20lbs with a fistula.  But on the flip side there are some recent studies showing weight lifting helps with dialysis muscle loss.  I personally feel some of those 10-20lb limits are just general numbers that would apply to a frail patient as well as a strong health patient - just a random number they can put out that is "safe."  So you should talk with your surgeon as you plan out the fistula placement. I honestly don't know if you will get an ok on lifting your own weight, as that should be a good amount of weight.

 often lift more than 20 lbs. but felt I had to be extra careful just after treatments before the needle holes really healed.  When I carry say a 40 lb. bag of cat litter I do use both hands and put more weight on my not fistula bag but I'm still using both hands. 

Read this story and research the guy for some inspiration:
https://www.bodybuilding.com/fun/drobson269.htm
(someone posted the link here recently)

[enginist]

Interesting article, but short on the details. He says he succeeded with nighttime dialysis but doesn't say whether it was HD or PD.  And you have to wonder how much creatinine he's been dumping into his system with the weights.  Maybe creatinine overload contributed to both his kidney failure and the transplant failure, and maybe now on dialysis the creatinine level doesn't matter.

I weigh about 150, so 75 is probably too much for a fistula.  Maybe doing 100 reps with 10-or 20-pound weights would bring the muscles to exhaustion, but not strain the fistula. 

[Paul]

Can I do chin-ups with a fistula? 

Doctors will say something like you are not supposed to lift more than 10-20lbs with a fistula.

You have a more generous neph than me, I was told to keep it below 5 pounds!

[enginist]

If I were limited to five pounds, it would feel like losing a limb. Or like a bird with a wounded wing.

[Cowdog]

You have to be your own judge on what you can do.
Dr advised limitations are based on everyone being "stupid" and he has to cover his behind legally.
My fistula is 10 years old. I monitor it daily. I go to my Interventional Nephrologist every 3 months for an ultrasound and flow study. I don't let a developing issue go without getting it checked out and fixed (ballooned) if needed.
I work about like I always have. I routinely unload a ton of cattle feed, 50# bags. I unloaded and placed 25 50# bags into the cattle feeder yesterday afternoon after D.
One thing I won't do is use a hand post hole digger. The impact of the digger hitting the bottom of the hole causes scary feeling in the fistula arm. (Left forearm)

[enginist]

Cowdog, you're unbreakable.  You're a machine.

[Cowdog]

enginist
I have lived my life like I was 10 foot tall and bullet proof. I have maintained that outlook though Dialysis.

[enginist]

Well, I'm only 5'9," and when bullets are flying in Chicago, I duck.

[enginist]

I've seen some fistulas on YouTube and some are barely detectable while some look like deformities.  What accounts for the difference?

[kristina]

enginist
I have lived my life like I was 10 foot tall and bullet proof. I have maintained that outlook though Dialysis.

What a wonderful way to look at life !!! I shall keep it in mind and many thanks for sharing !
Best wishes and thanks again from Kristina.
P.S. I just needed to read and understand that right now !

[Paul]

I have lived my life like I was 10 foot tall and bullet proof. I have maintained that outlook though Dialysis.

In an emergency I intend to stand behind Cowdog.....Right behind him, so I can use him as a shield.

[Cowdog]

Just remember:
"If you Can't Run With The Big Dogs, Stay On The Porch."

[PrimeTimer]

Just remember:
"If you Can't Run With The Big Dogs, Stay On The Porch."