Haemodialysis Risk -- Fistula Needle Shortage

Tuesday 2014-9-23  

Fresenius 17G, 20mm or 15mm fistula needle is a phantom rather than a description of a needle. It is unbelievable that I am the only person in whole Australia who requests such a needle. Months passed the official word is I am discouraged to have hopes ever using such a needle. I think I am being fed fibs. I am really puzzled by this situation.

The force of high blood flow velocity produced a wave of Ws on my arm with enough Ws to open a web site. By the way it is still developing the surgeon might even add the detail of the site name. Sadly with the straight section between each bend is all less than 20mm, I am still waiting for the needle which opens the web site. 

Currently I am using 25mm length needle (another puzzle for me instead of Fresenius’ which is our supplier it is from Nipro), half of which must be left outside, once it is taped and secured arterial pressure could drop from 0mmhg dramatically, the same goes with venous to the other extreme, very often this would render the machine unworkable. Not to mention the fact that when it does work I must sit hours still and endure constant pricking pain.

The surgeon said my fistula has good flow, which is quite true, but where on earth can I find the right needle for the bizarre shape. Last time he saw me, he suggested using my upper arm, the access nurse on his behalf called my training nurse and passed the surgeon’s message right in front of my face. On surface everybody is in unison.

Back at the training centre, the upper arm conversation seemed never took place, I was still taught using my lower arm. The fistula is bad, but it is the only vein I began to know. Perhaps the nurse shared the same thought not mentioning the upper arm. The irony is the one who prescribe where and how to put the needle does not do the needling.

For now my fistula is serving as a supplement to my catheter (perma-cath) than a life line on its own.

I hear there is still hope.  A plastic needle of some sort is under talks of being imported. I was told

that this is the needle for me.  Patience…

   - Haemodialysis Access Risk—AVF Creation and Accessibility
   - Haemodialysis Risk, AVF and Needle Size
   - Haemodialysis Fistula Repair – Branch Ligations and Effects of Anaesthesia
   - Haemodialysis Access Conundrum - Fistula Turndown and Ligation of Branch

A Dialysis Patient’s Daily body weight and Daily urine chart

One year since I started my dialysis life, some things changed and some did not. 

Note: Haemodialysis UF goal mostly  0,  before 14 Feb 14, since I was downgraded to use Fresenius 4008B machine,  UF goal setting is 20ml per session ( UF rate is 6ml/hour ), most of my dialysis sessions are  is about 3 hours.

The accuracy of the scale I used to weight myself is 50g (by the way, this scale is a gift from dialysis unit D),  24 Hours urine count after morning BW taken till next morning before taking Morning BW, Evening BW taken before sleep, my urine at night makes up about half of the total 24 hours urine.

7-day average daily body weight ( morning and evening ) and 7-day average daily urine chart

Daily body weight and urine chart

    

Note:  Dialysis Daily Body Weight and Urine Chart
           Dialysis Daily Body Weight and Urine Chart (Note) 
           Dialysis Daily Body Weight and Urine Chart ( 2 )

Heamodialysis Risk --- Catheter (perma-cath) & Blood Clot

Friday  2014-9-19

Heamodialysis access -- the shape of a catheter and the formation of blood clot

After dialysis if one smashes the caps on both end of a used dialyser, at the arterial side one very often will find a blood clot about 2cm in length half clear whitish and half dark blood red whose shape fits exactly the inside of the catheter that goes inside the patient’s body with the whitish part fits the tip end; at the venous end of the dialyser a clot is rarely found and if there were any, the clot is generally small which doesn’t resemble any particular thing or shape.

The part of the catheter that goes inside a dialysis patient’s body is a plastic tube, within which a plastic wall divide the round lumen into 2 semi-circular shaped tunnels with the partition wall in the middle extending all the way out of the lumen at the tip by about 3mm. At the end bit, the 2 semi-circular tunnel walls are cut diagonally making two 1cm slant openings, another centimetre down there are 2 diamond shaped small holes appear 180 degree apart, one at one corner of the 2 tunnels.

Whether the catheters are locked with 5000 unit in 5ml strength Heparin or 25000 unit in 5ml, in fast or slow push make no difference to the clot formed or not. The difference of fluid movement at the tip of the tube inside a patient’s body, the area around the 4 openings of the end bit of the catheter made by human speed in pushing in saline and heparin is negligible.

The heparin inside the lumens beyond the diamond holes downward is relatively stable, unless the patient moves vehemently and vigorously with force or bend downward which may lead to blood being filled into the entire lumen even tint the out of body catheter pink or dark red. For safety reason, when the catheter is dark, better relock again immediately.

How does the fluid inter-react with one another at the area around the tip end where the 4 openings are, is beyond me. One thing is clear with these many holes fluid at this segment is murky, heparin if there were any would be diluted. As it is mostly are blood which surround the 4 holes, I would say 

heparin has no chance at this last 2 centimetres of the tube where riddled with holes. Most of the time, the clot will always occur at this end of the catheter beyond the diamond hole.

With unlock the clot can be drawn out some times, other times the clot when not drawn out will simply end up at the arterial side of the dialyser. If the clot can be drawn out, I would use this side as venous, this way, I am sure the other clot if there were any would be caught eventually by the dialyser.

             

If both catheters are smooth and without sucking I would be worried as I have seen a clot in almost every dialyser. However the fact that I am still here today after a year on catheter it is more of a puzzle for me rather than a risk.

The nurses’ standard practice is if a clot is drawn out, they would further draw out another 3ml of blood which I fail to see the reason in doing so.

Haemodialysis Access Risk—AVF Creation and Accessibility

Monday 2014-08-11   

I need a fistula for haemodialysis access.

First they said that my left arm was no good, too many branches, my right arm became the chosen one in spite of my right-handedness. Operation day Oct 31^st 2013 surgeon S was grinning seeing my fat and straight vein. After operation access nurse M commented how beautiful my fistula was each time she saw me until an ultrasound was done.

                             Ultrasound after first AVF creation / opreation

Then they said the anastomosis suffer from severe stenosis and furthermore there were branches siphoning off blood flow. I thought my left arm was the one pestered with branches. A turndown which was to open up the narrow bit and, ligations was arranged for me. The branches were duly nipped including a ECG shaped branch which was the product of the narrowed anastomosis, but the turndown never happened.

After ultrasound this time access Dr. Y, when he saw me on April 30^th dismissed my concern about the high velocity of blood flow saying, “Velocity, never mind velocity, the flow is good. The fistula is beautiful. Don’t worry about velocity”. Access nurse M chanted the word ‘beautiful’ with him repeatedly.

                                 Ultrasound after second operation

Dr. Y decided my upper-forearm was ready for action immediately, the lower-forearm where 2 scars were, beneath which the vein felt taut and rolled under the finger tip, could be needled in 2 weeks, even the upper arm one day could also be used. Nurse M agreed with Y totally.

The upper-forearm was needled first. However, my vein is very shallow, and this segment is crooked nick-named by nurses as ‘dog leg’ and got punctured easily. Nurses ventured downward which turned out to be even more difficult.

                                          12th June, there is a dog leg, but ...

Beneath the scars the vein not only still stay taut bouncy as the palm of a cat’s paw plus a strong pulse, had also grew wavy like a zigzagged ECG chart (repeated dog-legs), however this time the ups and downs are half as many as the branch which was ligated previously. Before the ligation both veins shared the blood equally from the anastomosis, after the creation of the fistula, one of them turned crooked first and got nipped. Beneath the scars the vein used be very straight which turned crooked only after the ligation. The high pressure unchecked will have to go somewhere and do something anyway. 

                                            02 Aug, form a ECG chart

Finding a suitable needle became a problem, the needle which is good for me short and thin was not available, as the nurses put it ‘there was no such demand’. See: "Haemodialysis Risk, AVF and Needle Size" .  What are available are the ones either too long, puncture my vein easily or; too fat, making a large hole causing blood gushing out and running down my arm, not to mention longer holding and healing time. Catch 22. When the nurses see me their blood pressure rises.

15G Needle, blood gashed out

                                                         long Needle 25mm, punched through.

Remember ‘operation turndown’ which never took place, the anastomosis remain severely stenosis, pressure inevitably building up at the narrow bit, when blood unleashed through the bottle neck, it was with power and force, thus created a treacherous torrent with twists and turns and also made the vein taut and hard with tension trapping every scared person who does the needling.When you

Cut off one crooked vein another will popped up.

To reduce the pressure of blood off the anastomosis and return the vein its softness and straightness and prolong the life of fistula, at the same time make it easier for a needle person such as myself who is right-handed trying to learn needling with a clumsy left hand,the narrow bit must be opened up. Anyway this is only my uninformed opinion, what do I know being a small patient. As I’m no surgeon, the decision is not mine to make.

On Aug. 6^th, I went to see access Dr. W carrying nurses’ message that there were limited space in my arm. Solution was easily found, the forearm was too dangerous and space too limited, just forget about the forearm, we still have upper arm. If it is not broken why fix it. Dr. W, the surgeon who decided on the operation table that the turndown was not necessary, kicked the ball from his court to me and the nurses offered my upper arm to us and chanted along with access nurse M just as Dr. Y did previously that my fistula was beautiful and my blood flow was good while both ignored my concern about the high blood velocity, the potential shortened fistula life and the difficulty of a wrong handed needler.

                                                Latest offer: forget lower arm, using upper lower arm, hopping                                                                        ECG chart stops.

I wonder as this is the pathetic fate of my right arm fistula, why the left arm was not used. That way at least I would have a usable right hand. Now I’m doomed with a troubled fistula and a wrong hand need to learn doing things from scratch.

I remember on March 24^th for transplant reason I saw associate professor J, the number 2 boss of nephrology department, when he learned as a right-handed person my fistula is on my right arm, he blurred out “They didn’t even try the left arm”? Obviously his foot surgeons have much catching up to do technically, ethically and morally.

                     - Haemodialysis Access Conundrum - Fistula Turndown and Ligation of Branch

                     - Haemodialysis Fistula Repair – Branch Ligations and Effects of Anaesthesia 

Haemodialysis Risk, AVF and Needle Size

Thursday   2014-07-24  

Last Thursday, 17^th July nurse J blew the arterial point of my vein, a bump the size of cherry grew under our noses. The venous point was not spared either though not as bad as the arterial. When dialysis started the venous pressure which climbed to 180-200mmhg positive refused to come down, alarm continuously broke out however much the pump rate reduced.

The problem was identified later that nurse J misconnected the 2 lumens. Arterial became venous, as the entry point already swollen, it had trouble receiving blood. Even after swapping the lumens back correctly, the vessel and its vicinity were too damaged by pushing blood back forcibly through the already swollen arterial. The machine refused to work properly. Eventually dialysis was aborted.

On my way out manager L complained about the waste of about 200 dollars caused by the failed session as if it were my fault.

That morning I got up at 5am, got 2 bruises, took on one litre of saline getting on and off the machine and also included were numerous ampoules keeping blood from curdling while making many adjustment in order to make the needle sit properly in place, and wasted much blood in doing all these. Not to mention the biting hospital parting fee I dished out. In spite of all this they managed giving me zero dialysis. By the end of the day, they even tele-passed me more worry by still seeping blood when I pealed the arterial pressure pad off, redressing was obligatory.

One week’s rest is not enough to heal my bruises which still look grey. The flesh around last week’s venous point felt sore the whole week, mere touching made me cringe. I was told after more drama today that perhaps a nerve was touched.

Today arterial took 2 entries to render it usable. The needle set near last week’s venous point which is still sore, with the needle in the pain worsened and didn’t cease. I kept my fist tightened, teeth clenched and brow knitted for 2 and half hours and got just enough dialysis to sustain me another day and asked to be taken off. Nothing could distract me from my pain. Even with the needle out the flesh continue refused to be touched.

Once again today I asked for a thinner and shorter needle which would be better suited, safer and kinder to my shallow and crooked vein. “We don’t have any.” Nurse S said, “There’s no demand for such needles, we only have longer needle in thinner size”. Could they be in a milk bar business or something that she kept on mentioning the phrase ‘supply and demand’?

Perhaps if my request were not suppressed and snuffed there would be such demand. After all I can’t be that unique.

Nurse J on the other hand cited me all the negative effects of the thinner needle, talking about blood volume and so on, totally oblivious of the size 17, a thinner but longer needle they used on me at the beginning accompanied by a pump rate of 200ml/p/m which remained as such even when later they changed to use size 15, a shorter but fatter needle due to size 17 blew my vein too often for comfort.

One other thing J had short memory of is only last week she managed giving me no dialysis by recirculating my blood within just 3cm length of my fistula through wrongly connected lumens. What volume did I get then? Blood volume is important to me indeed, my life depend on it. I might even game enough taking on a needle the size of a garden hose if necessary. However, so far since I started dialysis last September the highest pump rate I used is 250ml/p/m. I fail to grasp the difficulty in getting and using a properly sized needle. The chance of me drop dead tomorrow is quite slim.

Since May as I started using fistula I had 3 successful runs apart from 2 good single needle entries. In all I received 19 needles among which 11 good ones and 8 bad ones including one done by myself. The success rate is roughly 60%. Both technique and the needle size including length and width contribute to this figure. Applying this figure to 100 patients that would mean 40 of them would go home without dialysis on the day. And further, if the saying that ‘a student is only as good as his teacher’ as something to go by, my future is looking rather far from promising.

During the past months my arm stay bruised most of the time. The only thing I noticed was that if it were a bad bruise, a longer recovery was needed and I may have a chance seeing a reasonably good arm or if it were a minor bruise, a shorter recovery necessary but I would be called back before recovery took place and thus the bruise would be piled on layer upon layer until I forgot which is which.

Secretly I fear for my poor fistula. I’ve heard too many stories and seen too many grotesque arms sported by haemodialysis patients.

Today I met patient C who share similar conditions which is very rare as mine, also battle high blood pressure, and complications caused by residual urine function, etc. Our difference is my kidneys are diminishing while his expanding. He already had his right one, a 45cm football sized kidney taken out. His left one is now 47cm and still growing, both fill his body up and squash his intestine one way or the other.

Within the past 3 years his arm were operated on 5 times and had almost as many fistulas which started from his wrist and today he is dialysing through the top of his arm. His lower arm is damaged suffers from numbness and pain.

The good news is that his cancer (his other problem) is now dealt with and he is on the list of kidney transplant, and he has a large supports , a troupe of contingent bulls 400 strong who love him dearly, C, the beef farmer.

Haemodialysis Risks – Fluid Removal Method

Tuesday 2014-07-08

The pace and amount of fluid removed from a patient is simple and yet risky.

On Thursday, July 3^th I went to the training centre and R was the only patient there. The nurses had forgotten that it was my day of the week and were surprised seeing me. As I only made the room half full, I was settled-in in no time.

R (see myblog Monday, 2014-06-16  DialysisRisk—Fresenius 5008 ) told me he spent the last 10 days in hospital. It seems that after months coming here strapped up with the flashy Fresenius 5008 to reduce his weight, and after numerous times of fainting here and in the clinic on and after dialysis, and a few times of strapping with oxygen masks, his formerly by-passed heart could take it no more. One day while on dialysis here in this centre his heart finally gave in and he was sent by ambulance to the mother hospital M where he stayed for 10 days allegedly for heart trouble.

When asked about his 12kg + excess weight he replied that it was all gone. He did dialysis everyday for 5 hours for 10 day while in hospital.

Hospital M doesn’t have F5008S, what they do have are the regular F4008S (BVM-lie detector) which is just one scale better than the F4008B I have in my home. What they did there was very simple. Some doctor ordered 2.6 litres was to be taken off from him each day. My interpretation is this, R was allowed 800ml of fluid each day, on dialysis he would take on 500ml which include 200ml drink, 300ml saline going on and off the machine, together that make up to 1.3 litre, double that to 2.6 litres which is the amount doctor prescribed.

10 days later, bang, his fluid was all gone. R was a happy man again and out of the hospital. The benefit of removing 2.6 litres a day is obvious, the speed of fluid removal allowed ample time for the excess fluid to move from extracellular into blood vessel without dehydrating the patient which causes unnecessary fainting spells thus endangering the patient’s life. Gradually in a steady pace the weight came down.

Everything was so surgical, mathematical and yet so simple. Another contributor is that in hospital a renal patient’s fluid movement is closely monitored, anyone who has been to the renal ward knows how strict the nurses can be in handing out drinks and recording the urine output, they follow instructions to the letter.

Now that R  is back, I saw on the F5008 the UF was 3.9 litres (RISKY) for 5 hours and he was due back again the next day on Friday, Saturday and Sunday the centre closes, and his machine at home is been checked out by our technician. R is back to his old routine including the help he gets from the nurses at the training centre.

Again the nurse was preaching to him about the benefit of longer hour dialysis and enquired about the length of R’s sessions at home. His answer was evasive.

By the way, R’s diet is mainly fruit than anything else except some noodle soup and ice. I wonder how he can survive with such a diet, after all R is a guy of 88 kilos. If both he and the nurses at the centre were back to their old way, I remember at one cession that R wanted taking off 4 litre at one go and the nurse chose 3 litre over him, provided these continued I would imagine that his next tune-up is either 6 months or 10kg whichever comes first. For now things are looking up, I heard there’s a baby on the way. Until next service, so long R.

 PS:   Haemodialysis Risk—Fresenius 5008

Self Management -- Haemodialysis Risks Solution (DIY)

Wednesday 2014-06-18

When dialysis time comes I always need to arm myself first. A part from hot water bottle, blanket, warm socks, Iron, Aranesp that most dialysis patients carry, my stash also include bed pan, bananas, candy, chocolate ice, grapes, saline, Mersyndol, Tabellae metoglopramidi, hirudoid cream, and ice cubes. Imagine when I was a vagrant patient without a locker the size of luggage I lugged along.

Ever since I started taking Perindopril to counter my hypertension I noticed not only did it increase my heart beat to around 110 p/m it also raised my potassium level. The racing heart was too much for me, I stopped Perindopril in exchange for Metoprolol. But since I stopped perindopril my potassium after dialysis was brought down too low, fighting this I started brought banana along.

I tasted the feeling of low potassium right after my very first dialysis. My heart flustered like crazy and my chest was restless, ECG was strapped on me twice. Before dialysis that day my potassium was 2.9mmol/L, it must have dropped to a terribly low level afterwards, doctor C gave me a yaki glass of liquid with 2 fat Chlorvescents dissolved in it the feeling and taste were unforgettable.

I relayed the banana story to doctor A who said I shouldn’t do that. I also raised the issue and changing of K bath to other doctors, everywhere I turn I find walls, I didn’t know that adjusting solution was taboo and like some other things such as Heparin which is also untouchable. It seems that doctors rather like adding more pills to counter whatever negative impact than adjusting the solution. I raised the same thing to nurses as well, one of them said banana is cheaper that adjusting the bath.  Self management is the only solution I can find, my list of necessities grew.

Not long after home training, on 3^rd March I was coerced into doing extended hours, within 2 weeks one more hour was added against my strongest objection. The stash of essentials I brought along increased. The first was bedpan, then extra saline to compensate the urine I passed on dialysis with the increased hour. After months of battling the nurses not to remove my fluid, this unit seems to think that I was dehydrated and began giving me fluid.

With increased hours my discomfort or rather my misery increased, I was losing a lot of sugar and protein through urine, I began to bring candy with me and I found eating a large souvlaky also helped. One other thing is my chemicals are all knocked out of whack. My test before dialysis shows most of them quite in balance, the one afterwards is quite worrying.

Here are some numbers, my albumin would drop from 41g/L to 35, phosphate from 1.26 mmol/L to 0.56, potassium form 4.4 mmol/L to 3, chloride from 0.94 mmol/L to 0.8, calcium from 2.23 mmol/L to 2.13, sodium didn’t do too bad only dropped from 137 mmol/L to 136, considering I took on around 300ml of extra saline and doing 140mmol/L sodium bath. Gosh, what a price to pay to have just one item changed to the better while the rest took heavy battering. I can’t say specifically how one feels when each item is been bashed, I do know when combined I feel terrible.

Longer hours wash out more middle and large size molecules which my urine still has the ability to process, with the increased hour and higher urine output, I copped double whammy.

I found hot bottle can prevent my cramping, unlike when I just started dialysis when it was caused by removing too much fluid through UF setting which could only be helped by infusing saline.

The longer I did longer hours, the worst my health became I started to have headaches and nausea, with time they worsened. When I took the fight with Associate Professor P on Monday, March 17^th, I pleaded my case not to have my hour extended with vigour and fervour, 6 weeks later on April 28^th I went to see him again holding a vomit bag and battling a monstrous headache couldn’t even sitting up let alone uttering a word. It took another Doctor’s visit to obtain Mersydol, Panamax proof useless, counter nausea pills are also have a place in my stash.

However, the pills can only do so much I still need to eat chocolate ice or grapes. In the end, sugary stuff and lapse of time combined brought me back to feel human again. The trick is if I could predict the headache and nausea were coming and have cool sweets before they arrived, I could actually prevent it happening, most of the time I fail taking the hint rendering the whole day useless.

Thursday, May 1^st, I started using fistula and my vein got blown often, Hirudoid cream and ice cubes came in handy helping the bruise and swell. It seems my vein is quite shallow lies just beneath the skin. The workable length is very short which includes a dog leg. Longer needles puncture it easily. After repeated requests and 3 vein-blown later, short needle was in.

Nurse Manager L single-handedly blew it twice out of three which I made it known to her each time. I thought what the hack, the worst I could do is to blow myself. I volunteered and permission granted. I did exactly that. That day I went home arm fattened and darkened without being dialysed. Nurse J said to me that when I were ready again call her. The healing took 2 weeks, including the previous 2 punctures I could not find my arm for 5 weeks.

One week after Nurse L did it.

One minute after I did it.

When started dialysing at home, first thing I did was to ditch the bedpan, hot bottle (my home is properly heated) and the extra saline during. I still take on more saline, but instead of during I take it in the end, I now wash myself very clean, all my lines are near white even the venous bubble trap is reduced to light pale pink. I kept the fruits and sugary stuff which I grew quite fond of. The pills are on and off, I just hope the sacrifice I made exchanging more hours for the chance of dialysing home wouldn’t be long lasting that the bettering I took didn’t reach the point of no return.

For now at least one thing I’m sure of that’s I’m not losing as much middle and large molecules. If nature almighty willing I might one day get rid of the pills as well.

Haemodialysis Risk—Fresenius 5008

Monday, 2014-06-16

Last Thursday, 12 June, I went back to the centre learning needling. It supposed to be a quite day, there was only me and a fellow patient R who came to reduce his fluid, but the day ended in chaos.

For some reason after 2 years of self dialysis R recently put on 12kg of excessive weight than his normal dry one of 88kg, his legs and feet swollen quite badly.

It’s more than a month now since he noticed his problem and came back to the centre doing dialysis at least twice a week. R told me his condition hasn’t changed much. If my memory is correct when I first met him his excess weight was 10kg. The nurses have arranged quite a few extra doctors’ appointment for him. One day after dialysis when he visited the specially arranged doctor, he fainted then and there on the spot.

Nearly 2 months passed, the nurses and doctors are still searching for a remedy. That morning there was a dietician came talking to him for quite a long while. It seems his protein level is extremely low even with the supplement he’s taking. For now at least the level is stabilised.

Every time R came over, he is hooked up with the best machine available which is a Fresenius 5008 fitted with all the latest bells and whistles, much flashier than the BVM 4008S – the lie detector they used on me.

R had poor luck again that day, by the time I finished my session of 3 hours and 20 minutes (my bladder wouldn’t last my obligated 4 hours), he had already passed out on the machine and required oxygen and infused saline which was standard practice. All the nurses were hovering over him. When I left his eyes were still firmly shut.

Obviously again his fluid was removed too fast, on a wrong pace and in a wrong way like other patients I’ve seen both here in this centre and in a few other units.

That morning when he was getting on I wanted watch and learn but the nurse manager L gave me the marching order.

For nearly 2 months the treatment didn’t produce much effects except giving him a few fainting episodes. Whatever has been done to the man is not working.

R told me in the past 2 years he always felt fine and wonderful after dialysis, only recent months his legs and feet became swollen fat. He’s been doing 8 hour sessions at home alone.

This centre opens 8 hours a day and 5 days a week. The 8 hours includes time for preparation, getting patients on and off and shutting down the machine. The nurses don’t do shift and they too, like everybody else need finishing the day off and going home to be with their family, as a result the longest a patient can do here is 6 hour sessions even though they might do 8 hours at home which is what this centre preaching for, the longer the better.

My theory for poor R’s situation is this, somehow recently his 8 hour sessions weren’t adequate enough for him that he accumulated excess fluid in the body, to counter this, either he needs to increase his hours or the pump speed or perhaps both, but I have no idea what that will do to his chemical balance.

The F 5008, what a super machine it is, it even includes a self generating saline function, perhaps the only room for improvement is to add an oxygen function as well. Unfortunately, the best machine in the centre did little for him, as I noticed it is not even linked with a blood pressure monitor to check his blood pressure and heart beat constantly which would enable the machine taking fluid at a proper speed and sounding the alarm when is sense danger. I bet when the poor guy passed out his blood pressure too low and heart beat too slow, perhaps the heart rate was at 30 – 40 p/m.

In our dialysis training manual, if we were to do 4 – 5 and half hours, the dialysate flow Qd should be at 500ml/m, blood flow Qb at 300 or for 5 and half – 8 hours Qd at 300 and Qb at 225ml/m. Furthermore, if we notice blood pressure running low, feeling sleepy, or having cramps or headache, we should gave ourselves saline.

At home dialysing alone I bet R wouldn’t dare to let himself slip into sleep which would be extremely dangerous, he would follow instruction, when he felt drowsiness he would gave himself saline before he reaching the stage of fainting. But being at the centre, he may put all his trust on the nurses and lost guard and let himself dose off.

One other thing I believe was true is that both R and the nurses would all follow the instruction from the same manual and to the tilt. In the same session they would be aiming for the same amount of fluid to be removed, one would try doing it within 8 hours while the other within 6 hours, now you do the math.

The only difference would be at his home he might have fluid problem in his current condition, but at least he wasn’t endangering his own life. For poor R, I can’t see the end of the tunnel just yet, at least in the short term.

     - Haemodialysis Risks – Fluid Removal Method
     - Dialysis Blood Volume Monitor (BVM) - Probing me again 
     - Dialysis Blood Volume Monitor (BVM) – Lie Detector
     - Haemodialysis Fluid Paradox
     - The Risks of Haemodialysis Dose, Shit Happens
     - Dialysis and Fluid

Dialysis Blood Volume Monitor (BVM) - Probing me again

Sunday  2014-05-18

BVM questionably used on me again, trying find facts to fit fantacy (#TFFTFF).

Lately not only did I walk out of dialysis room like a zombie, but a zombie with a massive headache. Nurse S is very concerned that she booked me an extra doctor’s appointment coming Monday.

On Friday I was put on a BVM machine again in order to find out once for all what is wrong with me. Last time after used BVM on me, they decided that I was dehydrated and was given extra saline every session between 100 - 350ml.

Months passed my blood pressure remained high and for the last couple of weeks I developed this monstrous headache which starts one hour on the machine as a slow drowsiness and in the next 2 and half hours fully blown into a massive headache accompanied with nausea. From the last half hour on dialysis up until late in the night I was useless.

These spells of drowsiness, headache, nausea and hypertension made the nurses doubting themselves and doubting my previous BVM result. Have I or haven’t I got excess fluid in me. The BVM will tell them everything this time.

When setting the machine’s UF nurse S tried pushing the button from 100ml upwards to 150ml while saying that they could give me back saline to compensate what’s taken, my husband guessed that she was aiming for the proverbial base amount of 500ml. We’ve been through this countless times at various places. After some eye exchanges between S and my other half, she also murmured that this machine wouldn’t permit anything less than 100ml which both of them knew wasn’t true, and eventually she set the UF at zero. All this was happening while I was sweating on being double needled for the very first time and copped a swollen bruised arm from manager L and learned about the story afterwards.

One hour on the machine later, a glimpse at the BVM, I overheard manager L said to S something like,” We can’t get anything today, forget about it.”

Nurse S did find something from the chart and pointed out that my haemoglobin was too high and wanted to take blood test at the end. For dialysis patients haemoglobin higher than 120mml/L was highly discouraged. She was reminded that only 2 weeks ago test was done that I could skip my next Aranesp which was due in 3 days and that I was already holding back iron as she prescribed. Nurse S is a very good person, in the end she did ask again about the blood test which we declined.

Since it was the first time my vein in the arm was receiving fluid back and while swollen, a complete wash-back wasn’t possible, the lines were deep in colour when thrown. Furthermore, after S pressed for 15minutes at the point where the needle was withdrawn blood still flew out and needed repressed longer. I said to her that there and the lines solved her haemoglobin problem. 

When everything was done and finish I had to ask her the reason for the BVM, to which she said was to check my fluid. Before dialysis started that day she even asked me if my legs were swollen.

One other thing I found out that day was, if I started with a fistula instead of a catheter I would not have run into so much trouble with heparin, no one wanted pressing the needle exit point for a long while.

Friday actually turned out to be a good run, after dialysis I even walked a whole block to where the car was parked, 900 metres no less (hospital parking costs an arm).

My fistula is finally in order and as it was the maiden run for two needles the blood pump could only be set at 150ml p/m which suited me just fine. There was no need to give extra saline; there was no urge to run to the toilet. After I got home that day I passed only 250ml of urine which was just like any day not on dialysis and did it at ease. Even though I was bruised when the needle was in and bled when the needle was out, I wasn’t alarmed, as I already saw plenty when I was a roving patient.

Below is my BVM graph of 4 hours dialysis, with sodium profile.

Below is the aftermath of my fistula maiden run (that's how a high haemoglobin problem is sovled).

Dialysis Blood Volume Monitor (BVM) – Lie Detector ( Friday 2014-02-21 )

Dialysis Risk — More is Less (sometimes)

Tuesday 2014-04-22 

Lately I feel sort of like a secret agent often doing things clandestine way. As I’m more familiar with the machine, my supervisor’s hawk eye was lax a little, though she still pricks up her keen ears not missing anything.

When they changed my treatment, initially I did suffer mental anguish and physical misery, I experienced headache, nausea, lethargy, insomnia, cramps, urinary infection, constipation, aching limbs, toes and ankles (totally washed out in other words).

Gradually I am allowed handling the machine on my own. Some changes have to be made to survive. The 1^st thing was to reduce the Qd pump rate (dialyser pump) to 300 ml/minute instead of the ordered 500. The trick is the Qd number doesn’t appear on the screen unless a series of buttons were pushed even then it disappears all on its own.

A while back starting on 28 Oct 2013 when I was taking perindopril to reduce my blood pressure, what it did was increased my heart beat. With a racing heart I couldn’t survive blood pump rate (Qb) 250 ml/minute and Qd 500 which are the standard rates for dialysis patients, I did Qb rate at 200 for a while. With 3 hours of dialysis I was afraid it wasn’t giving me sufficient clearance, so I increased to do 3 and half hours which is the limit for my bladder. I knew the above combination was alright for me, as I couldn’t change the blood pump rate when it appears constantly on the screen, and I survive poorly 250 Qb rate and 500 Qd rate combinations for 4 hours, the only thing I could maneuver was the Qd rate which hide inside the machine.  On screen I was doing 4 hours at 250 Qb, very normal indeed.

This change made huge difference to my life, I could at last breathe again, l was once again felt more like a human being than a miserable zombie, no longer felt so washed out and groggy, even my bowel became happier, I don’t want the nurses noticing my physical improvement, so after 3 hours of dialysis which is when the washed out feeling started, my beloved other half often remind me that I need to appear somewhat tired than I actually feel.

The second thing changed was the heparin dose, instead of taking on 6000 units for 5 hours at the very beginning and later 1000 units bolus and 500 hourly rate, I am now only taking on 1500—2000 units for 4 hours. If when bolus given was been watched I simply take on a little extra or else I may skip bolus altogether and the last hour heparin may also be stopped. With the amount of extra saline I’m receiving these days (about 300ml during each session) the dialyser is always white.

As for catheter lock, I’m given 25000 units and both my lumens are 1.9cc. Recently I’m using Tego to reduce infection risk which add extra 0.1cc, I was told to use 2.0cc to include the length of Tego which I found the end of lumen often clotted with blood, I’m now giving myself 2.1cc for arterial line and 2.05 for venous line. So far, they haven’t clotted again. The worst thing could happen to me is I might take on 750 units extra heparin, that’s the price to pay for safety. The sad thing is when I go home I was told for some reason I have to use Claxine instead of heparin which will be a bit of nuisance for me. I’d better enjoy while heparin still in use.

Beside these changes there are other things to manipulate such as sodium level and machine temperature to suit body ones, etc.

The last couple of sessions coincide with public holiday when the manager who has keen observance and sharp senses, and always sees everything and hears everything takes her days off. I was liberated, her foot soldiers only very involved with their own affairs, I even managed reducing dialysis hours a little. The fact is every bit of less dialysis I receive (to a point), the more beneficial to my wellbeing. With only 2 sessions of less hours (roughly 3 and half hours), my walking has already improved, the pain has reduced, although still hasn’t recovered to what I was before I enter this training unit, the change is obvious.

When these changes were made, my beloved other half was maneuvering the machine while I took on watch, we feel like a couple of spies doing thing under cover. By the way, at the end of sessions we need to set the machine back to order in case being checked, or simply turn the machine off and on again, letting it forget what it had been.

Haemodialysis – Unnecessary Complications

Friday 2014-04-04

Nurse J asked me today why I recently hadn’t taken blood pressure which was routine for patients before, during and after each dialysis. Since she asked, I had to show her. Even after a week my arm was still clearly badly bruised by the injection she give me last Friday, a huge patch of purple and blue which looked real bad as if I took severe belting. I also showed her my photo when it was inflamed and red. She looked uncomfortable. How could any nurse look comfortable after created such an a surrealist piece?

Basically, my entire upper arm was encircled with redness and bruises. I think she asked why I wasn’t taking blood pressure on behalf of her team, after a few days in a row not measuring myself they wanted to know why. I had already put down my reason on my daily record which they should read. Initially I didn’t want to embarrass them about my emergency trip, she must now report back to the manager.

One single injection could make such an impact surprised everybody. By looking at my arm the doctor at the emergency asked me how many injections I had. It is only bruises left now, when I went to the emergency it was in full inflammation. Where did the infection come from while it was done in a hospital and by a nurse?

Actually, today the arm feels not as bad as it looked, though I still feel a slight heaviness when I lifting my arm, I just want to play this thing a bit more.

A few days before she bruised my arm, I already stopped taking blood pressure and forged the numbers. My arm had been hurting for a while now, ever since one day on dialysis the left forearm suddenly started to feel tight and strained and I was hurting so much each time I took blood pressure, outwardly the arm looked normal and fine.

Each time I tell them what’s wrong, they have a remedy, most of the time it would make me felt worse. I can’t possibly even think telling them anything specific these days. Doing blood pressure again may bring the pain back as well. I’m not ready yet, after what they learned today, it would be a while for them to be interested in my blood pressure taking again.

Another thing happened today was nurse S was eager changing the dressing on my right arm on which access nurse M specifically written leave intact till 7^th April which is 3 days away. I mentioned my bleeding event and emergency trip the day after operation 20 days ago. After what had happened to me in this unit since I got here I have qualms in her touching my dressing just yet.

After dialysis she only peeled and changed the outer layer of the dressing leaving the inner layer intact. I was relieved. She is a clever woman and had already made the connection that I tolerate heparin poorly, and peeling one more layer off may lead to unpleasant things.

With a flip of finger today she even stopped my heparin half an hour before finish saying my dialyser always looked clear and white I may not need so much heparin. This reminded me how difficult it was for me to have the heparin reduced in the beginning when I found out I couldn’t tolerate it. It took me more than a month time, and it was the 4^th doctor I raised the issue to who reduced its dose. Albeit only to the level I could survive. I never dreamed to reduce the dose to the level I wanted which was sufficient enough to keep the blood flow without clogging the line.

While working with my drug chart, nurse S wanted to know whether I had my vaccine and I showed her my photo. She was practically gleeful that she wasn’t the one who injected me. By the way, she was the senior nurse who often praised J’s needle work.

Linking both of my incidents, the bleeding wound and the injection infection with heparin, before I left the hospital for the day I overheard nurse S talking to the manager that the super strength power heparin locking for my catheter was to blame for my bleeding and bruise.

Actually she had a bone to pick with the manager. I noticed the strength of heparin lock had recently changed from 5000 unit to 25000; My guess is, S preferred and had been using 5000, the rule in this hospital is 25000; I can’t know all the details, somehow nurse S was ordered to change it to 25000 instead of 5000, she wasn’t happy. Today she threw my bleeding and bruise back at the manager.

I’d been to so many different hospitals and used both neither had trouble locking my catheter. Personally I prefer 5000, when less can do the job why use more, but since when my preference mattered.

Haemodialysis – Aranesp, Haemoglobin and Iron

Thursday 2014-04-03

My aranesp is a convoluted matter.

Last year in September I went to the emergency and diagnosed as End of Stage Kidney Failure with Haemoglobin (HG) as low as 70g/L. During hospitalisation I received 4 units of blood transfusion and a catheter operation. 10 days later on Monday, 16 Sep 2013 when I checked out of the hospital, my HG was 126 and aranesp was prescribed for 100mcg p/week.

Before the 1^st dose of aranesp was due, I received my last unit of blood transfusion and my HG grew to 141, the 1^st dose was thus postponed.

A few days later my HG dropped to 112, doctor T was consulted and aranesp dose reduced to 40mcg p/w and my 1^st dose was finally given on Thursday, 26 Sep 2013, 10 days after I was out of the hospital and on the same day I also received the 2^nd dose of Iron and 1^st Iron on the previous dialysis.

Then I started moving about different satellite units for dialysis. As a vagrant patient I brought my aranesp along wherever and whenever it was due and I would remind the nurses to administer them to me. The problem with moving is that the drug order may often received in delayed time by the nurses, then there would be many phone calls between nurses, secretaries and doctors chasing drug orders, eventually I would get the medicine if not on the day, would be on following days.

There is a spoken or none spoken rule that renal professionals like to keep renal patients’ haemoglobin less than 120. When the level is above that the nurses would like to withhold aranesp or consult a doctor if one is available. When HG is low, in my case, because I move around no one really takes notice.

I had my aranesp of 40mcg p/w for a month in 4 different places, none of which was a straight forward thing. When the 5^th time due on Thursday, 24 Oct 2013 I landed on yet another unfamiliar centre S, my HG was 127 at the time, a doctor’s opinion was required and given as 40mcg p/month by the same doctor T who prescribed 40 p/w in the past when my HG was 112.

One month later I was sent to another centre P, the nurses refused to give aranesp without doctor’s order which for reasons that I had been to so many places nobody knew what was happening to me and my drug history. Nurse M said according to my own record I could have the drug, and I could inject it myself, just not by them, because legally they can’t.

Luckily the following Monday I had a doctor’s appointment where a drug chart was written which I brought to centre P the next day. But they still couldn’t give it to me. The nurses were busy working among themselves and other centres I had been to and tried to sort things out, after a lot of kerfuffle they still couldn’t give me the drug. Then I learned they need an Iron study in order to give me aranesp. I told them I brought a test with me which was done about a month ago and along with my other records if that could be of any use. The nurse was relieved and happy. One senior nurse said, “Remember always ask the patient.” Finally the aranesp was given.

Another month past, on Tuesday, 17^th Dec I received another 40mcg. Because I moved around, I missed out all scheduled tests enjoyed by permanent patients, my test orders were mostly the result of my clinic visits, by then I learned when would be good time to have my tests done. The following Monday, 23^rd Dec I had a doctor’s appointment, I arranged to have the test done Thursday 19^th Dec, my HG dropped to 101g/L after 2 months of 40mcg p/m.

I asked doctor L to review my aranesp which she did and prescribed 40mcg p/fortnight which is still valid today. Since then I had a few tests done, in all of which my HG were under 120, until 17^th March, my HG finally reached 123.

Iron and aranesp work hand in hand. My Iron infusion last September lasted me till January this year when I was moved to do dialysis in centre M where the iron protocol was different from other centres I’d been to, according to a test done on 19^th Dec my iron saturation was 49% and the protocol in M prescribed Iron for 100mg p/w while the other places either prescribe nil or every month for the same result.

 Iron of 100mg was given to me on 11^th Jan. 100mg p/w was prescribed for me and the order would follow me wherever I went, when my initial Iron order from the beginning was to follow protocol and decision was made locally, the doctor may not realise that there were so many different protocols when a patient is moving about town, this time order was specifically 100mg p/w.

Before the 2^nd Iron was due I had an unscheduled test (benefit or disadvantage being dialysing about town) where Iron saturation was 63%, Iron was withheld under any protocol. Another month later, Wednesday, 19^th Feb another chanced test, this time iron saturation dropped down to 27%, the order of 100mg p/w was back in.

The past yoyo experience tells me that 100mg p/w is a bit much for me. As now and always it is I who remind the nurses about my Iron and aranesp, I simply don’t remind them that often, for the moment I only remind them once every fortnight. It’s about 2 months now since I’ve done this which works quite well with my fortnightly 40mcg aranesp. My Haemoglobin is gradually coming into line my last test showed it was 123g/L, until the next test and some smart guy come along and mess it all up again.

Haemodialysis Complications -- Vaccine Injection and Emergency Trips

Tuesday 2014-04-01 

Yesterday when I got home after dialysis I was totally beaten, I had a headache, felt nauseous and tired. Even resting couldn’t return my energy, but a forced down sandwich with a large portion of ham helped a bit.

As my arm felt still sore and heavy from Friday’s injection, I thought better take a look. The needle point and its vicinity was bruised, from one single red spot of Saturday to a huge patch of redness, the upper arm was hard and swollen as if I were hit by a bat.

the blue dot at the top is injection point

10 minutes later I was in the emergency room. Registrar E felt my right arm and left arm and left and right again and again, and said there was a 50% chance of some kind of infection which was called Cellulitis and 50% chance it was a delayed drug reaction. I told him my other two hepatitis B vaccine injection didn’t gave me any delayed reaction at all and he went away to consult some renal people for my condition and drug dose.

In the end he gave me a packet of Flucloxacillin, a letter to my dialysis training unit and sent me home. I may hold on to the letter myself, as they are the people who sent me to the emergency in the first place and their changes to my treatment made me suffer more after dialysis, I’m quite scared of their creativity and fanciful minds.

Obviously the drug was effective, few hours later the bruise mollified down a little, I continued with the medicine. This morning the swollen was gone, the bruise dulled down a shade, the sore and heaviness would take a few more days to heal.

About 10 days ago, on Wednesday, 19^th March after dialysis I also ended up in the same emergency room. My wound from previous day’s operation oozed blood, within half an hour from a single red spot to one side of the dressing darkened.

Inadvertently I must somehow graze my wound while dialysing and the heparin I received on the machine made it worse. Holding my forearm and hand upright I was in the emergency within 10 minutes.

Neither the triage nurse nor the doctor dared to touch my dressing soon as they learned my wound was the result of previous day’s operation. The doctor consulted the vascular registrar who operated me and decided to send me home without doing anything saying things to the effect that unless the whole dressing was soaked and worse, don’t come back.

The bleeding temporarily slowed with my arm holding upwards, I was tired and my arm turned horizontal with which the bleeding came back. I called access nurse M who gave me her 24 hour number, who told me pressing my hand on the wound which I did for 20 minutes and it worked.

We all heard of the phrase “put pressure on the wound when bleeding” a thousand times, neither the emergency people nor the surgeon did this. When I told doctor L that my up held arm seemed helped a bit, she said, “Well, then keep on doing that”.

I delayed my hospital visit for more than 20 years, no GPs either, rarely taken medicine, eventually I ended up in the emergency and found I only got 3% kidney function left. In the past half a year, I made 5 emergency trips, 1^st one was too late and the rest I went as soon as possible.

The other 2 emergencies, aside from the above mentioned ones, one was my catheter was not properly dressed which resulted minor infection of the wound and other one was my jaw bled continuously due to overdosed heparin for a period of time which lead to platelet count dropping 50% within 20 days and APPT reading was 96 seconds.

The emergency trips are a bit much for me. I don’t have the intention to start a blog for "Emergency Day".  Imagine how long would that last.

Hepatitis B Vaccine

Saturday 2014-03-29 

When I had my first two hepatitis B vaccine injection I didn’t dare to look, each time they said it would be painful but I felt nothing. Six months later from the 1^st one, yesterday I had my 3^rd, as nowadays I’m practically live in the hospital, I am quite the veteran, besides after Easter I might start needling myself, I braved myself for a peek.

I was astounded when I saw only one centimetre of the needle left outside the skin, the rest all went into my arm, for a moment I thought perhaps it went through me. But I checked there was nothing poking out of the other side.

Nurse J who has 17 years of experience, perhaps has used to putting needles in the elephants and forgotten that I am only a chopstick. Before jabbing she warned me it would be painful, she was not kidding, I still have trouble lifting my arm as of right now a day after the injection. And I remember that nurse S who's over 50 years of age often praise J's needle work. Maybe nurse S meant she was more nimble working with a needle with wings rather than with a normal syringe.