Not feeling well on NXStage anymore

[*kana*]

I will try to keep this short but wanted to put it out there to see if anyone has any ideas about my current situation.
 I started NXStage a bit over a year ago and was doing very well and feeling ok.  Taking off needed fluid with no issues.  About 2mths ago, I started feeling weak and had to sit down often through out the day.
 Right after treatment I was literally drunken monkey walking to my bed and couldn't stand long enough for a post bp reading.  My arms hurt when I would fold clothes or even shower.
 I'd get severe dizzy spells getting up or just standing/walking for that matter.  I assumed it was my blood pressure going low so started checking it every time I felt like I was going to pass out. 
I noticed that my bp was higher then normal and my heart rate would be 115-155 which is way too high.  I am about 4 kg over my dry weight because if I try to take anymore off I feel crappy......but I have edema and I feel like I have 4kg of fluid on.
 The more fluid I try to take off the dizzier I feel through out the day.  I know it sounds like my body weight has changed and I am getting too dry but that isn't the case.    So to figure me out they decided to put me back in center and evaluate me.
  I feel great now doing less dialysis!  They run me for the same time, they pull off the same amount of fluid(still less then I need), the speed is the same.     So my thinking is is there is something wrong with my machine or water. 
We do have well water and recently, about the time I started feeling terrible, got a new water softner.  All of my PAK and SAk samples have come back within normal range.    I was effected by the high aluminum  SAK bags and my lvls have been up as high as 35 and currently are 25.    Thank you in advance for any help you might be able to give me.  I had a normal chest x-ray. ekg and Echo recently and my hemoglobin and iron are ok.

[obsidianom]

First off, what are you running for dialysate volume and speed and blood speed on Nxstage? How many days per week and how long are our Nxstage treatments? That is all vital to helping you. How much do you weigh and what is your height and age and sex?

[Simon Dog]

If you suspect your water, see if you clinic will cooperate and let you get a sufficient supply of bags to run that way for a month or so and see if it makes a difference.

[Hemodoc]

Aluminum levels have a very direct effect on the bone marrow and can cause a "microcytic" (means small celled) anemia that reverses with lowered levels of aluminum. You state that your Hb is normal.

Listening to the symptoms you are describing, I would wonder as a physician FIRST if you are developing congestive heart failure since many of your symptoms and fluid overload are consistent with those symptoms. Being on dialysis for an extended period of time places us at risk of heart failure that usually develops as a result of LVH which is enlargement of the left side of the heart. The left ventricle of the heart pumps blood to the systemic circulation, heart, brain and the rest of the body. The right side of the heart collects the venous blood returned to the heart and pumps it to the lungs to oxygenate the blood.

There are other issues that can cause your symptoms as well. Aluminum can affect your nervous system, but should not that I am aware affect fluid management. I certainly could not say precisely what is the cause, but if I saw a patient with similar findings, I would want an updated EKG and ECHO to evaluate heart function first. Liver dysfunction can likewise cause fluid overload and other symptoms. Once again, a complete review of all of your organ systems is the first place I would start.

I would also consider an evaluation by a toxicologist for consideration of deferoxamine for anyone with persistently elevated aluminum levels at this time. Also, checking dialysate levels for aluminum is something to consider even though I am convinced that they have aborted the issue and understand exactly what the production failure was even though they cannot publicly confirm that before the FDA evaluation is completed.

I would suggest you discuss having a complete evaluation for a direct answer. Stating that it is the NxStage machine, unless it is not removing the fluid that you set it to remove, it doesn't really make sense that it would be the culprit.

Please keep us updated on what evaluations and findings your medical team finds. If there is a malfunction of the NxStage machine, that is something we should know about as well, but I don't know what sort of mechanism could cause this and I would be surprised that it is the culprit. Lastly, what are your settings on NxStage, blood flow, UF, time, etc if you wish to divulge that information.

I spoke to Joe Turk a little over a week ago, the company president, and he assured me that all products today meet all of the specs. I believe that this is a true statement and I trust his word. I hope that is not an incorrect statement but I would be greatly surprised to find continued contaminated NxStage product today.

[Speedy1wrc]

Some of the symptoms you are exhibiting are similar to mine. Over the last year or possibly 6-9 months the symptoms have gotten dramatically worse. I have fallen several times without a good reason, my memory is a mess, I have a lot of the aluminum symptoms. I am getting my levels checked monthly and in the last month it dropped 3 points. Is that significant, maybe not. However the horrible pain I had in both index fingers has decreased at least a bit. I haven't lost my balance and fallen in almost a month. Small victories.

With the range of symptoms you describe you should be seeing your Dr. There are too many which could be a number of things.

[*kana*]

First off, what are you running for dialysate volume and speed and blood speed on Nxstage? How many days per week and how long are our Nxstage treatments? That is all vital to helping you. How much do you weigh and what is your height and age and sex?

25 Dialysate volume, 450 speed.  5 days a week, aprrox 3hrs.  My dry weight is 108kg, 5'7", 44 and female. 

I would want an updated EKG and ECHO to evaluate heart function first. Liver dysfunction can likewise cause fluid overload and other symptoms. Once again, a complete review of all of your organ systems is the first place I would start.

Ekg a couple days ago showed Tachycardia with normal sinus rhythm.  Echo on same day showed minimum LVH with mild diastolic dysfuntion which is caused by tachycardia.  I am a cardiographic tech so from what they are telling me and what I myself have observed it isn't my heart and all finding to date are similar to my tests done in 2011.  I am scheduled for a holter monitor to determine if I am having something else going on.  My liver and thyroid tests are all normal. 

Some of the symptoms you are exhibiting are similar to mine. Over the last year or possibly 6-9 months the symptoms have gotten dramatically worse. I have fallen several times without a good reason, my memory is a mess, I have a lot of the aluminum symptoms. I am getting my levels checked monthly and in the last month it dropped 3 points. Is that significant, maybe not. However the horrible pain I had in both index fingers has decreased at least a bit. I haven't lost my balance and fallen in almost a month. Small victories.

With the range of symptoms you describe you should be seeing your Dr. There are too many which could be a number of things.]

Sorry to hear that you are having issues too.  It makes life less enjoyable.  I am currently seeing my doctors to try to figure out what is going on.

If you suspect your water, see if you clinic will cooperate and let you get a sufficient supply of bags to run that way for a month or so and see if it makes a difference]

This has been suggested after I go back home if things don't get better.  Thanks
 

[Speedy1wrc]

As posted in my other thread, I am going back to bag's for at least a month, possibly three. If my aluminum levels get better while those locally remain high, we will all scrap the Purflow. Sorry to use an ill timed pun, quicker than a heartbeat. Our nurse is the absolute beast and has been staying on top of this with all of us. She will do whatever it takes to make sure we get the best care possible.

It is encouraging that you have an exceptional medical background. I am sure it will help you figure out hwat is going on.

Let us know how the bags work out. I think that is a good plan.

[obsidianom]

The tachycardia sounds problematic. I am glad you are following up on that .
One issue is the aluminum. Some of the symptoms could be aluminum.
The one thing I do see as an issue is your dialysate is very low . 25 is a very low volume of dialysate.  In center you did well , probably from the increased clearance of the faster bigger machines. With only 25 dialysate , you are not doing a lot of clearing. I ran your numbers and you need to be a LOT higher. My wife for example is 53 kg and small over all and we do 30 liters for 3.5 hours , 5 days per week.  You are a lot bigger , so the dialysate should be a lot higher.
Rather then give you exact numbers, I suggest you go to your team and get them to run numbers for you and reset the dialysate a more appropriate number.
When my wife was at too little dialysate she had a lot of similar issues.
Good luck with this all.

[*kana*]

The one thing I do see as an issue is your dialysate is very low . 25 is a very low volume of dialysate.  In center you did well , probably from the increased clearance of the faster bigger machines. With only 25 dialysate , you are not doing a lot of clearing. I ran your numbers and you need to be a LOT higher. My wife for example is 53 kg and small over all and we do 30 liters for 3.5 hours , 5 days per week.  You are a lot bigger , so the dialysate should be a lot higher.

Hmmmm, they base that on my 2.4 KT/V results that I normally get on my monthly labs.  When they run me in clinic they are much lower in the 1.9 KT/V range at 25.  I know that for in Clinic they want everyone above 1.2 and at home it should be above 2 so I'm not sure if that is my issue.  I have been running at 25 for the last year and all was ok up until recently. 



I am having the same issues now in center that I had at home which is great for them to evaluate.  I requested a pre- chem profile at start of dialysis and a post to see what my electrolytes are doing.   I know that PD is a totally different modality but when I was doing that I literally had to drink 16 oz or more of OJ a day on top of high potassium food to keep from crashing.  I also since starting hemo have never really limited my potassium and it is always around 3.5 or 4.  I had a history of GI issue that gave me diarrhea/vomiting and after 12hrs I was in the hospital with IV potassium(the GI issue is resolved).    If it isn't my lytes crashing post dialysis I am at a loss for what it is.    I did come home from D on Saturday and crawled into my house......cooked me some French fries and ate a tons of M&M's and by morning I felt great!!!

[Hemodoc]

In-center it is 1.2 Kt/V single pool, in other words, a single session. The NxStage home program uses a weekly Kt/V of 2.0 which mathematically is supposed to be the same level as spKt/V of 1.2.

[cassandra]

The symptoms you discribed in your last post really made me think of my own symptoms I have when my Potassium is too low. I eat a bag of crisps, and chocolate, and cashewnuts during D to keep it up, and I never get higher than 3.4 post D which is still low,

I would ask for an extra U/E post D, and up  potassium foods during, or before D.
Its a pitty they don't do strips for home testing K+ (they do for cows apparently, one day I might try those  )

Good luck, Cas

[Speedy1wrc]

I eat a handful of raisins which helps with the side effects of the Renvela. I also snack on chocolate and my potassium is just on the low side of normal. The trouble with the chocolate though is the phosphorus.

[*kana*]

Interesting....I've asked them about possibly having hypokalemia post treatment but they told it wasn't possible.  I run on 2k bath at home, however, when in the hospital and in clinic they run me on 3 k based on my labs.    I feel much better on 3k and have no bp issues.  I'm so confused and feeling like they are all being dumb.

[cassandra]

Do you know what your K+ is post D? If it is below 3.5 than thats that. What do 'they' base their possibilities on? Don't you have 'patientview' so you can keep an eye on your bloods online?

Luck, and love, Cas

[obsidianom]

Interesting....I've asked them about possibly having hypokalemia post treatment but they told it wasn't possible.  I run on 2k bath at home, however, when in the hospital and in clinic they run me on 3 k based on my labs.    I feel much better on 3k and have no bp issues.  I'm so confused and feeling like they are all being dumb.

Of course you can get hypokalemia post treatment. At 5 days per week like we do it my wife borders on that . She drops to 3.5 after every treatment.   The 2k bath helps but isn't as high as some at 3k.
Do you do a post treatment blood test?   We do once a month and check the post potassium.

[*kana*]

Hi,  Thank you all for answering. 

I only do a gold top which I believe has something to do with KT/V.  I draw the tiger/black and red tube prior to D.  I hardly eat or drink and still believe I have a too much drop in potatssium. 

[Simon Dog]

I only do a gold top which I believe has something to do with KT/V.

The gold top is for measuring BUN post treatment.  Comparison with the BUN pre-treatment begats the URR (urea reduction ration) which begats the Kt/V via an inscrutable formula.

[*kana*]

So then I guess the answer is no on the post tx potassium. Thanks