Anyone Know What Happened To Me?

[Paul]

A somewhat worrying thing happened to me during dialysis yesterday. I have no idea what it was, and neither have any of the nurses. So I'm posting here in the hopes that someone will know and be able to tell me:

A short while into dialysis I appeared to have developed a cough. Like a standard cough except it came on suddenly, and I was coughing more often that once a minute. Annoying because the machine alarmed every time I coughed but it was not worrying at that point. However I was a little confused how it came on so bad so quickly. When I get a cough I start off with a mild one which takes a couple of days to get to it's worst. And it is never as bad as this one.

After a short while (sorry I'm vague on timing, but I did not take notes) I started to get short of breath, that feeling you get when your lungs are full of liquid (if you didn't start dialysis soon enough). This got worse, and eventually I asked a nurse to test my blood oxygen concentration. The machine read 89, so they put me on oxygen (in a perfectly healthy person it should be 100, but for most people it will be in the high 90s, anything under 95 and they take action).

The oxygen quickly cured the cough, but the breathlessness took longer to go. Eventually it went, they took me off the oxygen, gave me a while and tested my blood oxygen concentration again. This time it was 94, which was close enough to 95 for them to keep me off oxygen. I still felt rough but over about half an hour began to feel better, until I was up to my usual self. An hour or two later I started feeling very tired. This got so bad that when I was taken off the machine and getting ready to go and weigh, the nurse looked at me and asked if I needed to be pushed in a wheelchair. I said "no", but I had to take a rest after weighing, before going out to the waiting room to wait for my taxi.

When I got home I sat in a chair and fell asleep. I woke up about eight hours later and felt exhausted and thirsty. I took a drink of water (more than usual, about half my daily allowance). I sat back down in the chair and slept for about another five hours. I woke because my radio alarm went off, but I did not feel strong enough to get up, and just listened to the radio for a couple of hours.

I have spent most of today doing "sitting down" jobs, and have felt fine for most of the time, but I did get tired about lunchtime and had a short sleep.

Anyone know what the hell happened?

[Charlie B53]

Tiredness may be an indication of a pending heart attack.  Better safe, get checked out by a cardio specialist.

Weakened heart output can directly affect breathing and exhaustion.

Do NOT put this off.

[Paul]

Thanks, but that was done a month or two back. The result was: My heart is so strong that it is impossible for me to have a heart attack (nice to know, as my heart and liver are about the only fully working organs in my body, and I'm not 100% certain about the liver).

[Charlie B53]

That was THEN.

This is NOW.

Youo might be surprised to find out just how many men have had very successful treadmill stress test only to fall over dead of a fatal heart attack a week later.

Yes your heart tested fine at that time.   Now may easily be another story.

Go get checked out.  Qwap, I can't remember the name of the test.  Echo-cardiogram.  Checks the pumping efficiency of both sides of the heart.  ANY abnormality perhaps should be followed by a real angiogram to map blood flow feeding the heart. 

These are the most reliable tests as they clearly SHOW performance.

Again, myself and son as two examples, tiredness/exhaustion led to my triple bypass preventing my 'Widow-maker' and Son's two stents.  Tiredness alone, no other classic symptoms.

[justagirl2325]

"Tiredness alone, no other classic symptoms."


Same thing with my husband.  It got so bad he had trouble walking a block.  All the heart tests came back normal except until one doc order the angiogram.  That showed the main artery blocked 80-90% and he went for emergency bypass surgery.

[Cupcake]

Any pain when breathing? I'm thinking pulmonary embolism.

[PrimeTimer]

What is your Hemoglobin level at? If you are severely anemic you will have a cough, extreme fatigue, achiness, sleepiness, loss of appetite and edema (check your legs and ankles). As for the heart, perhaps they could test your blood and run a Natriuretic Peptide test. That might show them that your heart has had a recent "event".

[Charlie B53]

Gradual occlusion of arteries feeding the heart do not product any of the enzymes normally associated with an 'event'.

Cardiac cath is THE most definitive study that can be done.  If a Dr is not willing to order that then the next best is an echo-cardiogram.

I had them all, repeatedly.

Chronic tiredness/exhaustion easily are PRIME indicators of a very serious upcoming problem easily leading to death.

This is a real wake-up call needing further attention.  NOW.

[Paul]

I've not replied for a while because I was hoping a doctor would give me the definitive answer to the problem and  I could post it here. Also: I found a four year old thread from a caregiver whose wife had almost identical symptoms to mine, but the thread ended with a message saying she was going for tests, but no report of the results. I PMed him and am hoping for a reply, but he has not been on this board for nearly four years, so he probably won't even see the PM.

I had intended to wait until after I got the doctor's report and could lay this to rest before posting my thanks to those who replied. But it is very much a case of "hurry up and wait", so I think I'd better thank everyone now:

So thanks to everyone who posted, you convinced me that I need to take further medical advice on this matter.

[Paul]

OK, so this is what they call Sod's Law. Finally got an appointment at the hospital. They dialysed me and carefully monitored me. I threw up during dialysis, but apart from that no problems. None of the things that have been happening during dialysis for the past couple of weeks happened when they dialysed me in the hospital. So we are none the wiser. They have sent me back to dialysing at the clinic, so I'm hoping that whatever it was has gone away.

[MonicaJade]

I really hope you’re problems are gone, Paul. Glad they didn’t see anything really bad.

[Charlie B53]

If I understand correctly the dialysis machine has many 'setting' affecting the rate that it removes water from the blood.

These settings can be adjusted so as to change the rate/speed at which water is removed.

These rates can be adjusted either straight or curved and those curves can be biased either faster at first or faster more near the end.

Different people react to different water removal speed.

It vary well could be a huge difference in machine settings between your clinic and the hospital.

If you can get that information from both places to compare and find what those differences are perhaps this may shed a clue.

[Simon Dog]

These rates can be adjusted either straight or curved and those curves can be biased either faster at first or faster more near the end.

In the Fresenius 2008 series machine, this is the ultrafiltration profile.  Standard is linear.  #2 is sloped down, faster early in treatment.  There are a dozen or so, and the machine can show you a graph of each profile.   If you find one you like, have it added to your prescription and you won't even have to ask for it.

The home version of the 2008 (Baby K) and the NxStage machines do not have a UF profile.

[Paul]

If I understand correctly the dialysis machine has many 'setting' affecting the rate that it removes water from the blood.These settings can be adjusted so as to change the rate/speed at which water is removed.

The clinic tried all sorts of speed, no change. And the speed the hospital used was was 250, which is the most common one that the clinic uses.

In the Fresenius 2008 series machine, this is the ultrafiltration profile.  Standard is linear.  #2 is sloped down, faster early in treatment.  There are a dozen or so, and the machine can show you a graph of each profile.   If you find one you like, have it added to your prescription and you won't even have to ask for it.

That is interesting. The clinic is run by Fresenius, so I'm guessing they use Fresenius equipment. I'll mention it.

[Charlie B53]

By 250 I believe you are talking about the blood flow pump speed.  Nowhere near what the water removal speed is.

IIRC when I was still using my cath they kept running me about 250 pump speed but once poking into my fistula they always try to run at 400.  Some days less because of needle position, maybe too close to the wall restricting flow and causing alarms so they will slow down the pump.  Generally they want to run as fast as possible to filter more blood.

[Paul]

Water removal speed in hospital half a litre in half an hour followed by two and a half litres in three and a half hours.
Water removal speed in clinic mainly varies between two point six litres in four and a half hours to four litres in four and a half hours. But they have tries several lower speeds when trying to work out what the problem is.

[Paul]

UPDATE: They dialysed me at the hospital for a couple of weeks to see what was happening, then decided that the problem was that my line (cannula) was not working properly. They put a temporary one in my groin on Friday, then yesterday (Monday) replaced the original one with a new one. It appears to be working, but not as well as the temporary one (the temporary one alarmed just once, this new one alarmed several times, but nowhere near as often as the faulty one, and it did not leave me vomiting and on oxygen, so we can hopefully assume "fixed").

After the operation* to replace the line I was given a stern lecture by the surgeon** telling me the reason the line (cannula) went bad was that I had too much fluid removed each time, i.e. my dry weight was set too low. Don't think it was fair to lecture me, the dry weight was set by the clinic manager. (I already have a thread on this board asking for permission to punch the manager, can I now punch her twice? Not because of the lecture, but because of the hell my dialysis sessions have been for the past few weeks due to the the faulty line.)

While I was at the hospital I overheard someone on the staff saying that they had three patients requiring a line change from the same clinic as me, and the clinic only has about a hundred patients, so that is 3% of them in one day! The person talking was making the point that there had to be something wrong at the clinic for that quantity to need a line change at the same time. So if questions get asked, we will probably be getting a new manager. Sadly, however, this is the NHS and questions tend not to be asked unless someone dies, or sues. So I'm guessing status quo wins, and SNAFU continues at the clinic.

------------------------------

* Possibly just a "procedure", I can never tell the difference between "operation" and "procedure".

** If it was a "procedure" rather than a "operation", is he still called a surgeon, or is he now a procedurist?

[cassandra]

I'm sorry you had to go through that Paul.


However the

UPDATE: . Sadly, however, this is the NHS and questions tend not to be asked unless someone dies, or sues. So I'm guessing status quo wins, and SNAFU continues at the clinic

Why not write to the MD from the hospital your clinic is connected to?


Love, luck, strength, Cas

[iolaire]

Don't think it was fair to lecture me, the dry weight was set by the clinic manager.

In the US you can have the final say in your treatment, in some fashion.  Can you meet with your doctor (or center nurse) and tell them that the surgeon said you lost your line because you have too much fluid removed each session therefore from this point forward you want to insure that never happens again? 

Or just ask the people providing treatment to use a different dry weight because you cramp a lot when you get home (out of sight of the clinic), have dry mouth and whatever other symptoms that dehydration causes?

[GA_DAWG]

Sadly, the fact is that the process and the atmosphere at a clinic is set by the manager. If the manager is just going through the motions and doing just enough to cover their behind, the staff will do likewise.

[Paul]

Why not write to the MD from the hospital your clinic is connected to?

Can you meet with your doctor (or center nurse) and tell them that.......

The person I would have to talk to is my nephrologist, and I am probably going to have to sue her because of matters I talk about in this post: http://ihatedialysis.com/forum/index.php?topic=34431.msg521594#msg521594 so I cannot see her showing me any sympathy.

[GA_DAWG]

The difference clinic to clinic. At one point I had quite a time with blacking out during treatment. We had one tech who finally figured out to not add the extra .5kg to the amount they were taking off, and my neph changed the setings, as some have mentioned, to take more off early and less late, as it was usually in the final 30 minutes I had a problem. The tech had me tell each one I worked with to not add the extra, and over time, they just ask me how much I want to go for each treatment. In addition, the head nurse is always asking if I need my dry weight changed. They now let me make these decisions after I have shown I won't abuse their trust and get myself in trouble. So many people I talk to say their techs and nurses would never do such a thing.

[Michael Murphy]

Since my heart attack I tell them what to take off the limit is 3 and I aim for 2

[lulu836]

, they just ask me how much I want to go for each treatment. In addition, the head nurse is always asking if I need my dry weight changed. They now let me make these decisions after I have shown I won't abuse their trust and get myself in trouble. So many people I talk to say their techs and nurses would never do such a thing.

Hey DAWG............I was able to almost start out with that arrangement.  I have scales at home that weigh in lbs. or kg so I am never surprised when I step on the center's scales.  Don't understand how a clinic can dictate limits on dry weight.  If the dry weight is too much over a short time, there are adjustments that can be made.

[Simon Dog]

I am having to give up home treatment since it is causing too much stress for my wife, even though I do all the work.   She has had a serious accident and can no longer tolerate living in a "dialysis house".

Ok, so I email my neph and tell him I need some 1 on 1 time.  He invites me to his office after hours and gives me over an hour of his time.   We spoke of many things, from cabbages and kings to ships and sealing wax.  He offered many changes to policy to accommodate my style.   One of these is that I will be a "self-serve" patient and the medical orders will say I am free to do my own setup, connect, running the machine and disconnect.   I will also be managing my fluid takeoff and dry weight directly without RN approval/involvement, accountable to my MD at my monthly meeting.    This is going to be "less bad" than going in and waiting for an RN or tech for every little thing, or getting scolded for touching the machine.