I'm afraid of developing heart failure

[Sja84]

About 2 1/2 years ago, I went into septic shock and as a result I lost all kidney function. I've been on dialysis ever since. It's been rough for me, I'm 32 now but I couldn't believe what I've had to endure this whole time. Recently, it's been explained to me that dialysis is really rough on your heart and most patients develop CHF within time. Is this true? I have normal blood pressure, it only drops when I'm on dialysis. I don't have diabetes either. Under what circumstances do people develop CHF while on dialysis and if they do, what warning signs should they look for? Thank you.

[Michael Murphy]

Personally I developed it after suffering a massive heart attack.  For several months I was unable to sleep for more then a hour at a time without waking gasping for air.  It was miserable.  My Nephrologist felt since my oxygen level was ok during the day I was ok and he wouldn’t prescribe oxygen so I could sleep.  After two months of this I was in a urgent care center for cellulitis and  I mentioned to the doctor thr CHF was making it impossible to sleep and I was only getting sleep during dialysis since I was on oxygen during the session.  He pointed out CHF was caused by excess fluid so take more fluid off during dialysis.  Next 4 sessions took off 4 kilos each time and I began to sleep.  It appears that CHF for me if I get 3 to 4 kilos over my real dry weight.  So I have been carefully controlling fluid intake.  Heart damage is caused by excessive fluid removal over time.  The patients I have seen die of heart problems are the patients regularly taking off a lot of fluid.  Now I limit fluid removal to 3.5 kilos and if I slip up and need more I reduce fluid input and get down to my dry weight over the next 3 sessions.

[Charlie B53]

Fluid control is essential.  If you can learn to manage your fluids you will do far better than those that do not manage fluids so well.

I am VERY strict with myself averaging only 2 liter take off at each session.  You will have to learn how to control thirst plus constantly be aware of just how much fluid is contained in foods.

Your labs tell a story as well.  pTh will affect calcium being removed from your bones and deposited in muscle, including heart muscle.  Wacked out labs will damage muscles and your heart.  Here again, proper diet, medication faithfully can help immensely towards keeping your labs within good ranges.

It can be done, whether you are on PD or Hemo.  Thirst control and diet make a huge difference in our health.

Take Care,

Charlie B53

[JVT90]

Thank you for this discussion, I've learned from it. 

[Sja84]

Thank you for the info. I pull between 4-4.5 every time. I go by the Fresenius formula and according to my weight and how long I dialyze, that I'm fine to pull that much. I had no idea pulling fluid is what affects the heart so much. According to the Freaenius formula, I'm ok to pull up to 5.8.

[Sja84]

Michael, I'm truly sorry to here about your struggles. There is nothing more frustrating than doctors who don't listen. I asked my nephrologist recently to increase the size of my dialyzer and he had the nerve to tell me "don't be greedy." I had no idea caring about the quality of my treatments made me greedy.

[MooseMom]

There is nothing more frustrating than doctors who don't listen. I asked my nephrologist recently to increase the size of my dialyzer and he had the nerve to tell me "don't be greedy." I had no idea caring about the quality of my treatments made me greedy.

That's disgraceful!

[Michael Murphy]

Does your Nephrologist have a business interest in your clinic if he or she does someone is being greedy and it aint you.

[kristina]

Hello Michael I am very sorry for your massive heart attack and I do hope you are doing as well as is possible and hopefully you can still enjoy as much as is possible.
... To answer Sja84's question: I was told by medics, that the less liquid is being taken off during dialysis-sessions, the better the survival options in the long run. It also shows also in the regular  blood-results, how well the body is generally "doing" and studying the results helps a lot to make sure about it and whenever I have a question about my blood-results, I always ask a medic as soon as is possible.
Good luck wishes from Kristina.

[Charlie B53]

I cannot imagine taking off nearly 6 liters and someone telling me that is 'safe'.

I am currently down to 100K.  If I have even 3 taken off, I cramp.  I know everyone is a little different, some tolerate a little more, I'm sure, and some even less.  Perhaps I'm just turning into a big ole baby.

18 months on HD I've managed to keep my take-offs well under 3, most of the time.  Gotta stay out of that Chinese Buffet that we love.   MSG really sends me over with the fluids.

It ain't always so easy, but I figure the stricter I stay with myself the longer I will manage to stick around here.

We just have to decide what our priorities are, and stay tough enough to keep them.

The learning curve has some pretty steep slopes and very winding curves.  It is so very easy to fall off.  You just gotta get back up, dust yourself off, and keep on trying.   Never give up.

[Michael Murphy]

Actually Fresinius has a portal that contains labs weight gains and they mark in red anything that is beyond the range however the top range for weight gain is an amazing 5.8 kilos (12.76 Pound). If I gained that much IT Would be my last dialysis session.  I think I would be so cramped it would take months to straighten me out for burial.












Sp mod Cas

[cassandra]

Actually Fresinius has a portal that contains labs weight gains and they mark in red anything that is beyond the range however the top range for weight gain is an amazing 5.8 kilos (12.76 Pound). If I gained that much IT Would be my last dialysis session.  I think I would be so cramped it would take months to straighten me out for burial

          


You'd just have to go in a bag or something 

[Michael Murphy]

I would just like a better death then a nurse or tech sucking me dry like a bug in a spiders web.

[cassandra]

I would just like a better death then a nurse or tech sucking me dry like a bug in a spiders web.

Don't let them. When I was in-centre, I could change the settings if I wasn't happy. Nothing worse than being sucked dry like a bug in a spider's web.... Now that isn't completely true, but it is definitely in the top 100.

[Charlie B53]

My Fresenius Clinic doesn't want me to even touch the machine.

One Tech barks at me (figuratively) just for putting the BP Cuff away.  He rather I just leave it on the seat for him to deal with.

I ain't like that.  I even pick up their trash if they have dropped any.

I won't leave a mess anywhere.

[Michael Murphy]

One of the patients in my clinic comes in early cleans his seat, and area before  treatment and does it again after the treatment, the staffs attitude is he does a great job and it makes him happy.