Dialysis is a blast, it kept me alive one day at a time, one day focused on dialysis, one day of life. This lasted until I could have a transplant which was 3 years after diagnosis. A quick wait time compared to some. In hindsight it was all worth it, its no fun being hooked up to a machine, but the fine print in life says nothing about fun.
I think it is best to fight for another day. Rage into the night; I saw more than one person give up the fight while on dialysis. Pain is transient. No retreat; No surrender, hum a few bars along with me.
Learning to shut up and do what I was told.
My dialysis adventure started at the General Hospital main campus. This is where you start and end your dialysis journey. First timers and difficult cases get the attention of this unit.
Once you stabilize you can go to the Riverside dialysis unit or the Baseline clinic or you graduate to Home Hemo Dialysis or Home Peritoneal Dialysis. Some people are on dialysis for 10 or 20 years or more years and complications eventually kill you. Those who are high risk are in this unit.
Before this first treatment I had a Central Venous Catheter (CVC) installed. A CVC is a flexible, long, plastic, y-shaped tube that is threaded through your skin into a central vein in your chest or neck. A CVC is not usually intended to be permanent but in my case it was a bit of an emergency and there was no time to create an AV fistula.
A Dialysis Virgin
The nurse who did my dialysis for the first time was an old hand, a short feisty nurse about 60 years of age who had a good sense of humor a definite limp and who had seen it all before. She got me through the procedure with flying colours and then I was alone for the first time in a dialysis unit with 4 hours ahead of me with nothing but my thoughts.
To my left was an older gentleman being hooked up, after the nurse was done, a few pleasantries were said and off she went. Only a few brief moments went by and I said hello to my dialysis neighbour and as he nodded, he literally nodded off, passed out, lost consciousness, gone! Surprised, no sooner had the words “Nurse” comes out of my mouth, that an alarm on the dialysis machine went off and she was back at his side, the chair flipped up his legs, his head dropped, and she started emergency procedures.
Within 30 seconds there were 3 nurses, within a minute there were 10 nurses, doctors, pharmacists surrounding the patients and within 2 minutes there were a pharmaceutical and coronary crash cart and perhaps 20 medical staff surrounding the patient. It was crowded and I had a ring side seat.
For your first dialysis treatment the social worker is to visit to make sure you are all right and on this visit Judy had met here outside the dialysis room seconds before this incident. After things stabilized she told Judy to just put her hand on her back and follower her through the emergency response. When they arrived they were both very concerned as to how I would have responded to this calamity.
With a big smile I said “This is the safest place in the world, this is where I want to have a heart attack” As it turned out I never found out what happened to that poor gentleman I was told in general terms he spend a few days in the ICU and he survived his heart attack.
I was lucky in that I stabilized very quickly and was transferred to the Riverside outpatient clinic within a couple of weeks of being admitted to the General Hospital.
Once at the Riverside, the main concern became my diet. The Dialysis diet is fairly restrictive it goes like this.
~Restricted fluid intake. one liter of all fluids per day.
~Restricted Salt intake. No food with more than 6% RDI on the label
~Restrict Potassium, no bananas, cheese, Melons or raisins
~Eat lots of meat 4 large portions a day
~Grains are okay, but not whole, white is better.
~Avoid potatoes, tomatoes avocados, asparagus and beets
One day feeling particularly angry at my situation but being well enough to be out on my own and not having my sweetheart around to keep me in line I went to Red Lobster for lunch. Having been on a restrictive diet for a few months at this point I was a bit fed up.
Red Lobster is not salt free; so not for me
Up to this point I had been on a short lead and had obeyed all the rules laid out for me. But this day I decided to exert some control over my situation and ordered something they called the Ultimate Feast®. It was a delicious assortment of 2 lobster tails, with melted salted butter, a side of wild-caught North American snow crab legs, their garlic shrimp scampi along with crispy shrimp all on a bed of rice with an endless stream of the godliest biscuits with, I could not believe my good fortune, salted butter to boot.
I ate and I ate well. After a $50.00 spread for one I proceeded to the Baseline Dialysis clinic. I was hooked up and then promptly passed out on the dialysis machine. Waking up a few minutes later with an oxygen mask on my face and my legs up and my head down, feeling somewhat worse for wear the nurse scowled at me angrily asking me what I had eaten? Hmmm, maybe these guidelines made a difference.
2 pieces of pizza and a beer away from death
When I explained my Lobster Feast she explained in no uncertain terms that I was two pieces of pizza and a beer away from death and if I wanted to kill myself fine, but please don’t do it on a Tuesday because that was the day she worked. Her sincerity had an effect on me. I had a few hours to reflect on my eating habits and my course of action moving forward.
Over the preceding months I had also been advised that crystals, a séance, a vegan diet, micro nutrients or a quick trip to China where transplants were available for only 10,000 dollars could all solve my problems. I had to compare and contrast this with what my team of nephrologists, cardiologists, pharmacists, general practitioners, nurses and assorted technologists had to say with the “alternative voices” that were rattling around inmy head.
Having already been a victim of vegetarianism, and not particularly enamored with the thought of some poor Falun Gong member being executed so I could have a kidney I decided to go with what I thought was my best chance at survival. I coined this phrase to describe my strategy:
I would shut up and do what I was told.
In hindsight this uncharacteristic move was a stroke of genius.
Clinic Visits with Dr Zimmerman and other exceptional Doctors
Clinic visits were monthly visits with a nurse, a dietician, a social worker, a pretend doctor they called Fellows and the real doctors who were nephrologists. I say the fellows are pretend doctors because after a few months of experience with dialysis you notice that they contradict what the nephrologists had planned for you.
The contradictions were glaring and a patient had to be careful with what the fellows said. Fortunately they were watched closely and it was a team that reviewed your blood work to ensure that the dialysis treatment and your diet were working.There was also an educational component to this as they encouraged you to be physically and mentally active, decisions had to be made, you had to evaluate your treatment PD vs HD, Home Dialysis vs In Center and overall they wanted to make sure you were not depressed to the point of wanting to jump off a bridge.
Unfortunately for my doctors I am an engineering technologist and like to know how things work. Invariably before each meeting with a doctor, I had type written statements and questions that I wanted corrected and answered. The response from the doctors varied with the personality of the doctors
~A few doctors got mad and were insulted by my apparent lack of trust and unquestioning faith in their knowledge. Encounters with these doctors made you feel like a block of meat and created frustration, fear, and when you’re very sick created desperation that leads to suicidal thoughts. Fortunately I only met a couple of these twats and not until I was post transplant.
~Most doctors answered your questions and in some cases brought copies of studies that related to your “research” They were much appreciated, showing a level of respect and acknowledgment of you as a sentient human being that sometimes would carry you along for days on end. This was the vast majority of doctors, almost all with only a few exceptions.
~Some doctors read your questions, think about them and then lead a discussion with you explaining the underlying science, other research you should consider and, although they made it clear they were busy and on a schedule ensured that you understood your situation and helped you make an informed decision about the next step in your treatment.
One of those doctors, and I met a few, but one of those doctors was Dr Zimmerman of the Dialysis Clinic in the Nephrology Department at the Riverside Hospital. I really enjoyed talking and learning with Dr Zimmerman. Dr Zimmerman always took the time to explain my situation, addressed my concerns and when I asked she gave me clear direction in regards to the choices I should make that related to my specific situation.
They say your attitude can carry you a long way in your recovery. This is true, but also true is that your doctor’s attitude could make or break you as a patient.
Hemodialysis in the Riverside Hospital and Baseline Clinic
I spent about half a year in dialysis at the Riverside and then half a year at the Baseline Dialysis clinic. The big difference for me was that the Baseline Dialysis clinic was only a 5 minute drive from our condo. The care in both facilities was comparable, there were more doctors at the hospital, but all the doctors rotated between the clinic and the hospital.
The machines at the clinic were newer but that did not make a big difference to me as a patient. In both places the people were supportive, the units clean, and you were stuck on a machine for 4 and half hours 3 times a week. In hindsight I think I liked the hospital more simply because there was a place for my sweetheart to sit and more people for her to talk to, but there was no big difference other than you had to have no complications to be at the clinic.
Peritoneal Dialysis (PD) at home and Drain Pain
Peritoneal Dialysis is a process where you pump about 3 liters of a special cleansing fluid flows through a surgically installed tube into your belly. It goes into the lining of your abdomen (peritoneum) and the peritoneum acts as a filter and removes waste products from your blood. After about 4 hours the fluid with the filtered waste products is pumped out of your abdomen and is discarded. There are a couple of very good reasons to be on PD as opposed to being a Hemodialysis patient.
1.You are only tied to a machine while you fill up and drain. For me this meant more time at my farm, not chained to a hospital.
2.You can do this overnight, it destroys your sleep as the machine cycles through a number of fills and drains, but it looks good on paper and they encourage this. For me this was a six month swing and painful miss.
3.You are half as likely to be hospitalized over the first 12 months on Peritoneal Dialysis when compared to a Hemodialysis patient
4.The healthcare costs over the 12-month follow-up period is about $43,000 higher ($173,507 vs $129,997 for Hemo Dialysis patients )
There are a few downsides to Peritoneal Dialysis as well;
1.You have 3 or 4 liters of fluid in your peritoneum, its not painful or uncomfortable but you feel it.
2.Drain pain is a miserable and for me unavoidable feeling as the last of the fluid is sucked from you belly. The pain is not in the belly however but an excruciating sucking on the genital area, from the inside. Make no mistake this sucking in the genital area is not in any way desirable. 3.
Drain Pain from PD
For me this was a huge deal. The initial approach when confronted with drain pain is aggressive laxative administration. This strategy can help by forcing peristalsis and forcing movement of the tip of the catheter. In other words we are going to move you’re bowels so violently that your insides become realigned. It’s not the way they explain it to you but it’s what it amounts to.
So what is drain pain? Not allot written about it but I did find this: “Contemporary cyclers use hydraulic suction rather than gravity to drain dialysate and drain pain is thought by some to be caused by the consequent application of negative pressure to the very sensitive parietal peritoneum toward the end of each drain cycle. This leads to referred pain, often quite unpleasant and felt in the genital areas. Others speculate that the pain is related to negative suction on the external bowel wall. However, hydraulic suction cannot be the only factor as there is a marked ‘center effect’ in the prevalence of drain pain…Suggests a relationship to how peritoneal catheters are placed.”
The article speculated that drain pain is more likely to occur if the intra peritoneal portion of the catheter is too long, due to the insertion site being too low in the abdomen relative to the patient’s pelvic anatomy 4.
Drain pain alone would have been a “lets stop this show now” type of event but to add insult to genital injury the Peritoneal Dialysis was not working. It was not cleaning my blood enough. It simply does not work on some people, after the fact it was explained to me;
a.I had had surgery for an obstructed bowel and my peritoneum had been cut and healed, I was told after that this made it almost a sure fire failure. I wish they had said that to me earlier.
b.I am 6’4” and weigh 100kg and I was told afterwards it works better on small and thin people. Large men not so much. I wish they had said that tome earlier.
c.PD is cheaper for the system and safer for the patient, these are good and valid reasons. That gets lost on you however when you are sitting on the edge of your bed every morning as the last of your night cycle is being completed and you are feeling this sucking from the inside that is in no way pleasant. Sadly there is not much research into drain pain. From the limited literature on the subject it seems to be a mechanical problem, an error in installation.
The really sad part of that experience was that no one ever mentioned drain pain and seemed “surprised” when I reported it, saying things like, oh that’s odd. But you know when you are being lied to, and this is one of those things, they run up the flag pole, if you’re in pain, oh well, you’re odd, that usually does not happen.
But for this cohort of one it affected me negatively 100% of the time.
Combination Hemo-dialysis (HD) and Peritoneal dialysis (PD).
With the failure of PD I was started back on HD in center, this brought me back to the Riverside hospital. It was decided to create a fistula for HD, the objective of the fistula was to get rid of the Central Venus Catheter that was still stuck in my neck / Chest. While on PD I had a surgically installed catheter permanently stuck in my belly and a surgically installed catheter permanently stuck in my upper chest/ neck area. If you can’t picture that, consider yourself lucky.
While a belly catheter was a long term part of PD, the central Venus catheter (CVC) was a temporary fix that lasted a year and half. They try to replace the CVC with a fistula because the CVC is prone to infection.
The fistula is really the only practical long-term access for HD. A surgeon connects an artery to a vein in your arm, to create a fistula. An artery is a blood vessel that carries blood away from your heart. A vein is a blood vessel that carries blood back toward your heart. When the surgeon connects an artery to a vein, the vein matures and grows wider and thicker, making it easier to place the needles for dialysis.
The AV fistula also has a large diameter that allows your blood to flow out and back into your body quickly. The goal is to allow high blood flow so that the largest amount of blood can pass through the dialyzer.9
The first fistula in my left arm was surgically installed but unfortunately did not work; the second one in my right arm did. It takes a while for the fistula to “mature” Which means swell up and become an easy target for the nurses. Until then the poor nurses are trying and missing the vein, when a .090 diameter needle that is about an inch and a half long has to be threaded into a .250 diameter vein there is a chance it will puncture the wall of the vein.
It hurts and you become jumpy, the nurses, most of whom do not like inflicting pain also become a bit jumpy; it’s a sort of cruel and painful circle. Eventually everyone calms down but if you combine an inexperienced nurse adverse with inflicting pain with an inexperienced, frightened, pain adverse patient, its sometime not a friendly 30 minutes as attempts are made and failures happen.
The failure is a big welt on your fistula that makes the fistula not usable for a few days. If you have a CVC then you go back to that. For me this went on for a few months. I commented to hospital administrators that perhaps more training was in order. I meant for the nurses, but they interpreted my helpful suggestion as a request to learn how to needle myself.
The Angel Dana Vascular Access Nurse
It was a bit of a surprise to me when I was introduced to my new best friend Dana the vascular access nurse. Dana was to train me to insert the needles into my arm myself, with that skill I could start home dialysis and be free of the hospital. Good plan.
Home Dialysis: Smile with the rising sun, three little birds…
There are 5 essential steps to home dialysis
1.Having a well developed fistula; the best way to develop the fistula is to use the fistula, having one nurse, Dana, do all the needling during the month of training got my fistula established.
2.Being ready, willing and able to needle yourself; I became ready after multiple painful attempts with multiple nurses. The nurses had 2 failures to each successful needling. Once trained I did not have a single vein puncture. Not one in over 700 needlings. Its not that I was good, it’s just that I could feel what was going on they could not.
3.Being ready, willing and able to learn the process of home dialysis; In my younger days I was a tool and die maker experienced programming CNC machining centers, I actually like machines and enjoyed the process of working with the dialysis machine and RO filters. This may sound odd, but I like technology and dialysis technology is a wonderful thing to behold and understand. Especially if it is keeping you alive.
4.Having the physical space for the machines, bed and storage of supplies; we sold our condo and bought a house to make home dialysis possible. We had the option to use our farm but I wanted to be closer to emergency care if needed. As well our remote farm had regular power outages and a 40 foot well that although never ran dry (on Spring – Brooke farm) home dialysis used allot of water.
5.Having a support person to help with needling and monitoring of your progress; I am the luckiest man alive in that my sweetheart was endlessly supportive and willing to give me 100% of her attention. I could not have dealt with the needling or the odd combination of terror and monotony that home dialysis is without her help.
Training: a new step every day
The training for the needling took about a month. For me it was a very incremental process of being taught the 30 various steps and mastering one new one each day. Eventually the only step left was sticking those 2 needles in your arm.
By that time Dana had walked you through everything 20 or 30 times, held your hand right up to the last step and eventually you are just ready to do it. Dana described me as perhaps her most needle adverse patient ever.
I never wanted to do it, and I never wanted to give up on it.The training for the machine took another 2 months and involved doing your dialysis in the training center where they had half a dozen rooms where people are trained on PD and HD. Same idea, a new step each day and eventually you are on your own. Its all hands on training with allot of hand holding.
Home Set-up for Dialysis
Our setup at home completely occupied a 12 x 12 bedroom. The hospital installed a dedicated hydro line for the machine and water service to the room. The dialysis machine is the size of a small refrigerator and the Reverse Osmosis water filter is the size of a small oven with 2 large water tanks the size of acetylene tanks used in welding. Water use is quite high and we got a provincial rebate on our water bill.
As stated earlier this was a reason we did not do this at our farm, hydro was erratic and water was from a well, we did not know if the well would support the hundreds of gallons required each day.The supplies were another issue, the road to our farm was long and very rural, our driveway almost a kilometer long, we have two 4 wheel drive trucks for this reason and the transport truck deliveries which came monthly would not be practical in a remote farm location. The supplies amounted to 5 cabinets and 10 drawers on 2 walls all filled tooverflowing with an additional pallet sized area piled with boxes of supplies. In the middle of the room was a bed with the machines to the left of it. A small hospital table on wheels held all the needling supplies.
Dialysis routine: Every second day I started Willie Nelsons Evergreens and in the hour and half it took to play that CD I got the machine setup. The songs were varied and spoke to me, especially Take it to the limit by the Eagles. At times home dialysis can be a bit of an emotional roller-coaster and the downside was pretty well articulated by take it to the limit. You are in a dark place when you don’t just completely relate to the following lyrics but are actually living the following lyrics…..
But the dreams I’ve seen lately
Keep on turning out and burning out
and turning out the same
And when you’re looking for your freedom
(Nobody seems to care)
And you can’t find the door
(Can’t find it anywhere)
When there’s nothing to believe in
Still you’re coming back,
you’re running back
You’re coming back for more
So put me on a highway
And show me a sign
And take it to the limit one more time
Every day of home dialysis was pushing me to the limit. The music was a routine that kept me focused and on track. My wife’s kindness kept me moving along that track.The other song that became indispensable was Bob Marley & The Wailers “Three Little Birds”
After everything was setup, cleaned, the water tested, the hoses strung in sequence, the filters in place, the system purged of air, the chemical baths stabilized, the error codes resolved and the needling table set up, the last thing I would do is go the bathroom, wash my hands for the tenth time during the setup, call Judy and put on Bob Marley.
The first needle was the easy needle because there was an adrenaline rush that got you through it, but the second needle was the really hard one, because the adrenaline was gone, you are tired. And sometimes the pain killer you put on your arm was starting to wear off, just enough that you felt a bit more than the first time, not painful, just a bit more awareness.
It took about 20 minutes to prepare the sites and thread the 2 needles into my arm. Getting connected to the machine and getting all the air bubbles out of the lines took another 10 minutes, it was singing along with Bob Marley and the holding of my hand that got me through it. I usually sang along.
Rise up this mornin’
Smile with the risin’sun
Three little birds
Pitch by my doorstep
Singin’ sweet songs
Of melodies pure and true
Sayin’,”This is my message to you-ou-ou”
Singin’:”Don’t worry ’bout a thing’
Cause every little thing gonna be all right
“Singin’: “Don’t worry (don’t worry) ’bout a thing’
Cause every little thing gonna be all right!”
Singin’: “Don’t worry about a thing’Cause every little thing gonna be all right” – I won’t worry!
Singin’: “Don’t worry about a thing’
Cause every little thing gonna be all right”
Once a month I had to go into the dialysis clinic and I would get on their machine for a few hours and they would check my fistula for function, take blood and the Doctor would review your case.
This one time the nurse came by to assist with the needling and I told her I forgot my CD of Bob Marley and I always listened to 3 three little birds. She started singing the song in a clear voice, Singin’: “Don’t worry about a thing, oh no!’Cause every little thing gonna be all right!” and I sang along.
As we sang I put in the needles and the noisy room of about 40 people on dialysis, the dozen or so nurses, technicians and general noise of a big hall just got quieter and quieter as we sang our melodies pure and true. Eventually you could hear a pin drop but for our singing.
I got the needles in to No applause, my singing is never appreciated, but it was a neat moment anyway.
While it was nice to be free of the hospital, it was also very stressful. The first few minutes of dialysis were frequently filled with alarms on the machine going off, and often a frantic call to the on call dialysis nurse. The alarms if not addressed could lead to your passing out, or getting an air embolism, they became routine but for the first few months stopped your heart. That was the upside; on the downside I was becoming depressed and anxious due to the endless monotony of dialysis.
Dialysis is not painful, it was stressful and it was a combination of terrifying and boring. There were doctors to help, nurses on call 7 days a week and someone was always by my side, but I felt alone and was becoming depressed. Also around this time talk of a transplant, my placement on the list and doctors started talking about a 6 month window.
Rather than making me happy it stirred up allot of fears and anxiety from previous surgeries and I started seeing a psychiatrist at the General Hospital, who referred me to a psychotherapist to work through the anxiety. I am told that inevitably my new kidney will fail; 92 percent of kidneys work after one year after the transplantation success rate is still 84 percent after five years. The life of kidneys is getting longer; some are projecting 10 and 20 year transplants. I am told the biggest cause of failure at that point is that patients forget to take their medication.
Unfortunately at that point I would probably be too old for another transplant and would have to make a choice of treatment or not. Treatment would be dialysis again, if able I would prefer to do home HD dialysis rather than other alternatives.
7 surgeries for practice and countless tests for fun
Before the transplant of a new kidney I had a number of surgeries and tests.
Vascular Access #1, #2 and #3 As mentioned earlier I had a Central Venus Catheter (CVC) installed. CVCs are polyurethane assemblies that contain a subcutaneous Dacron cuff for tissue in-growth; this grommet will immobilize the catheter below the skin surface. My CVC was placed into my jugular. CVC afford the luxury of speed, which was important for drop in cases like mine, but these devices are plagued by infection, thrombosis, inadequate blood flow, damage to large central veins and increased mortality risk which make their use problematic.
A better solution is to develop an arterial venous fistula (AVF). 12 I had 2 fistulas installed, one worked and one did not. The one that did work matured under the supervision of Dana my vascular nurse and worked without problems for over a year. A healthy fistula has a “trill”; a rumbling that can be felt on the overlying skin as a vibration. Because large amounts of blood move through the fistulas from high-pressure arteries into low-pressure veins it creates a constant murmur that you can hear and if you put your hand over the fistula you can feel. It’s quite weird.
Fistula Gram #4 and #5: A fistulogram is a procedure to look for blocked veins or abnormal narrowing of the fistula. You are given some local anesthesia and then a contrast liquid is injected into a catheter that has been put into the fistula in your arm, then several x-rays are taken.
The contrast feeling is a warm feeling and then you feel sick to your stomach. After you calm down the blood flow and pressure in your fistula is measured. In my case they never found any serious clots so serious work was not required. For some the expansion of the fistula and or the insertion a stent is painful. The catheter was then removed and the procedure is complete.
Your arm is left sore, swollen, and bruised after the procedure but this all fades in a few days. It’s just another annoying, unpleasant experience.
Installing and removing a Peritoneal Catheter #6 and #7
The Peritoneal Catheter is surgically installed under a general anesthetic. I don’t actually remember much about the surgery going in. In a short time there were allot of tests and allot of surgeries, this one is part of the blur. I remember it coming out because it was taken out with only a local anesthetic in the dialysis clinic. It was not painful just a bit disconcerting and it felt good to be finally rid of it. With the Peritoneal Catheter in, you cannot have a shower, only a sponge bath. I also had a Central Venus Catheter in my chest and you can’t have a shower with that either.
The CVC was put in during my first week in the hospital. The strange thing is one of my strongest memories of this whole affair was the last shower I had on the day before I was admitted to the hospital. I did not know that morning that that afternoon I would be admitted to a hospital and essentially be tied to the hospital for 5 years with no shower for almost 2 years.
But to this day I can remember standing in the shower that morning thinking how incredibly good it felt to be having a shower. It is a blindingly clear memory and almost feels like a premonition. For me the installation and removal was a painless experience, it just did not work.
For a neighbour of mine who also had a Peritoneal Catheter installed in the Kingston General Hospital it was a horrific experience, his bowel was perforated and he required a second emergency surgery. My scar is a tiny little circle beside my belly button; his scar is a footlong gash across the middle of his stomach. He almost died from his ordeal; once again I was the lucky one. (Update, my good friend Tom B did in fact die a few months later from complications)
Complications: Butchers and Gropers
“Horror stories of medical incompetence, arrogance, and libidinousness have filled newspapers; broadsheets and tabloids have been united in their condemnation of a profession unable to regulate itself except when it’s too late.” 13
I had numerous complications 14 and continue to have many complications 15. There are numerous examples of mistakes cause by ignorance by the medical staff 16 and things I had to discover for myself only after months of suffering, things that should have been resolved by the physician.17 In all cases you have to be well informed of your own situation. Sadly that is really hard to do when you are very sick, for that reason you need an advocate.
You need an advocate
You are the only person who makes any decision about what is going to happen to you. In all cases you need an advocate by your side at all times ensuring you are safe from the staff. You need someone who is taking notes and writing down everything that is being said and the name of every Doctor, Nurse and Technician you have the good fortune to encounter.
Having said that, overall I think I received exemplary care. I think 99.5% of the people I had contact with were professionals who genuinely care about the care they give and want to help you live a long and healthy life. That 0.5% however your advocate has to be watching out for because they will rape or kill you.
It’s a credit to the professionals in the system when you consider what they are doing, that they are doing the best they can in an environment of idiot politicians and vulture corporations circling around a public health care system.
Clostridium Difficile: And look at me, I’m in tatters
At different times different songs best articulated how I felt at any given time. The rolling stones “Shattered” best describes my experience with C. Difficile.
Shattered18 Rolling Stones
Uh huh shattered, uh huh shattered,
Love and hope and sex and dreams
Are still surviving on the street,
Look at me, I’m in tatters!
C. Diff sometimes happens after a course of antibiotics. It can spread easily, and is unpleasant. I experienced diarrhoea several times a day, a loss of appetite, and a fever. I became very dehydrated. 19 To make matters worse this all happened while I was starting Peritoneal Dialysis and that lead to another complication that confused the issue and numerous visits to the Emergency room that went unresolved.
Crashing Blood Pressure and Smirking doctors
When I changed from HD to PD a change was required to my blood pressure medication. PD tends to moderate or normalize your blood pressure, if you’re normally treated for high blood pressure as I was then the blood pressure medications may be no longer required or they will need to be adjusted. If you continue to take them your blood pressure will crash.
No one told me this and no doctor was paying enough attention to change the prescriptions. My Blood Pressure crashed. Before my blood pressure was under poor control and was around 180/90, a normal pressure would be 120/80. On PD with my regular medication it dropped to 90/60. I was finding it hard to lift my head off the pillow and I repeatedly ended up in Emergency.
Once there doctors were baffled by my combination of C. Diff symptoms and low blood pressure. Eventually the C. Diff was identified but the low blood pressure continued. There did not seem to be any resolution even after infusion with saline to reduce my dehydration caused by the diarrhea and being a problem they could not solve they just wanted to send me home.
My wife refused to let them send me home; remember I was confused, nauseated and slipping in and out of sleep all the time, and so weak I could not lift my head off the pillow. So I languished in Emergency for multiple hours. Eventually my sweetheart left for half an hour to get some dinner. I was left alone.Once alone, I drifted off to a low blood pressure sleep and was awoken by a young woman of an ethnic group that is obsessed with toilet culture.
You can Google toilet culture and see what I mean. I had never seen her before; she identified herself as a resident doctor but I don’t really know. She told me I needed an anal exam. I could not make a connection between low blood pressure and my anus but she insisted and alone without a nurse attendant this woman stuck as much of her hand as she could up my ass.
This was uncomfortable and as she walked away without so much as how do you do she had a unusual smirk on her face as if to say, and I’m not sure, it could have been “boy that guy has a tight ass” or it could have been “Superior me! I humbled him and got away with it”. In any event at that moment I thought to myself sexual assault IS about domination and that exam was not necessary.
Judy returned from dinner a few minutes later and when I described what had happened she wanted to follow up on it, but I just asked her to let it go and that’s what I wanted to do, just go, let’s leave.It’s not a nice feeling to think of this event. Its not a big deal really if this is how this strange women gets her kicks so be it, in the current political culture there is little a white man can do about a “person of colour” sticking their hand up their ass, its just that this should be a warning to others in a vulnerable situation in a hospital, don’t leave your loved ones alone, your parents, siblings, husbands, wives, or children in the presence of strangers even for 20 minutes.
Sexual predators are out there waiting for the vulnerable, the perpetrator can be well dressed, men, women, priests, doctors, porters anyone. You need an advocate. My underlying low blood pressure continued but this event prompted me to research the issue myself where I discovered in a manual provided by the hospital on PD that made the connection between low blood pressure and PD.
The problem was quickly rectified when pointed out to the doctors.
Sores, Scabs and Sunshine
On to happier things, part of kidney failure is problems with your skin. You are going to have high levels of serum phosphorus. This is because dialysis can only take so much phosphorous out of your body. You are on a phosphorous restricted diet but some slips through.
You may also react to the PVC in the blood tubing on the dialysis machine or to the dialyzer and the dialysis solutions. When you compound all this with the oil glands in your skin that cannot secret enough oil to keep water in skin because you are on a water restricted diet 20 and are hooked up to a machine for 12 hours a week that sucks the water out of your blood, it all makes for a dermatological perfect storm.
All of this to say I had itchy dry skin, so I scratched. Eventually my body was covered in hundreds of little scabs. The advice from the doctors and nurses is to stay clean, but I had not had a shower in a year and could only have sponge baths.
Other helpful comments were things like, don’t scratch. Yes I know but I would wake up scratching. Also don’t eat foods high in phosphorus. Yes I know but there is phosphorous in allot of non restricted foods.
Eventually I was referred to a dermatologist and started a Phototherapy 21 routine. This involved standing naked in a chamber of Ultraviolet lights (UVB and / or UVA) 3 times per week to dry out and heal my scabs. As well they prescribed powerful topical creams to prevent itching and speed healing.
Dermatologists usually advise against sun exposure but I was told to get naked in the noon day sun for at least 30 minutes a day. Yes officer I am just following doctors orders.At least that conversation never came to pass at our remote farm. All this did have a positive effect on my skin, not to mention the most bad ass line free tan I have ever had.
Exhaustion and the Uremic Brain
I worked for a few months while on dialysis, but the decline is slow and deliberate. There is no turning back. Eventually I became confused and extremely tired, the work of an engineering technologist in a plastics factory requires a working brain and I had to stop working. Uremic Brain or encephalopathy is an organic brain disorder. It develops in patients with renal failure, usually when the estimated glomerular filtration rate (eGFR) falls and remains below 15 mL/min.
Symptoms vary from mild symptoms (eg, lassitude, fatigue) to severe signs (eg, seizures, coma). Severity and progression depend on the rate of decline in renal function; thus, symptoms are usually worse in patients with acute kidney injury 22
After dialysis fatigue was quite intense, I would be out like a light after; no matter what time of day I had it. On dialysis I had one good day and one bad day, by good day I could walk, but not more than a hundred yards, I could do the basics in terms of hygiene and driving but that was about all. The confusion I experienced lead to an inability to deal with any sort of stress, having an email to read and answer was difficult. Any form of social media became an unbearable stress.
Eventually each connection dropped off as the slightest hurdle went up. Most upsetting I could no longer envision a future. I was always a man with a plan, for the garden, my farm, my business, constantly planning. Now I could only react and only to very low levels of stress. I was agitated, uncomfortable and depressed.