My day of dialysis

3 times per week I am having dialysis, on sunday, tuesday and thursday.
During the morning I arange my things for the dialysis session:
– What DVD do I want to watch during the dialysis?
– Is my mobile charged?
I open my company’s laptop to check my e-mail, contact my manager if necessary and make me a sandwich.
I check my laundry, do I have to run my laundry?

Around one o’clock in the afternoon I put my shoes on because around a quarter to two in the afternoon the taxi calls to take me to my dialysis center in Amsterdam Zuid Oost.
The taxi arrives,the driver rings my doorbell downstairs and I tell him I am coming. I put on my coat, pick up my bag, I close the door behind me and lock the door. I walk down the steps, through the door to the street where my taxi is waiting. Most often a fellow patient is also picked up by the taxi. The taxidriver takes us in about 20 minutes to the dialysis center.

I walk through the hall, gather my blanket and things and walk to the dialysis hall. In the hall are 24 dialysis machines and I walk to the machine that I am normally connected with. The tubing, the artificial kidney are already available for me to build up de dilaysis machine. Before I can be connected to the machine, the tubing has to be inserted, connected, and the artifial kidney has to be attached. This I have learned to do myself. When that is completed and the tubing is filled with water (during that time I have made up my chair and the blanket, I have arranged my mobile and my dvd) I get seated on the chair. The nurse, let me call him/her a dilaysis technician, comes to help me.
For more than a year now I have a shunt in my right arm (http://en.wikipedia.org/wiki/Cimino_shunt) and has been used for dialysis for a year now. The dialysis technician inserts two needles (these needles are quite wide) in my shunt (one to the machine, arterial, and one from the machine, venous), she/he checks the machine and controls the settings for my dialysis as mentioned on my dialysis sheet, checks my birthday (is this the right Henk van den Berg?). When all is done and I am connected she/he starts the pump for the dialysis machine to clean/purify my blood from all the stuff that cannot be broken down in my own kidnes anymore. The next few hours I am busy having dialysis. During that time I am watching my dvd, checking my mobile, reading my book or newspaper.

And then the time has come, I can be disconnected. At first the line to the machine is disconnected. Because there is still an amount of blood in the machine, this amount has to be given back to my system. When that is fulfilled the line from the machine (that gives the blood back) is disconnected. The nurse can take out both the needles making sure no blood is lost while removing each needle. To seal the holes over the needlewounds gauze is applied and I must press 10 minutes on the gauze on the wounds so that the wounds close again. It takes me about 10 minutes for the needleholes to close. Both the needleholes are covered with a plaster. Then I am ready to go home.

I fold up my blanket or put it in the bin for the laundry. In the entrance hall most often the taxi driver is already waiting for me, the nurse has arranged for the time for the taxi to come and take me home. I feel a bit tired but that goes away soon (during the taxi ride).

Harold Ramis R.I.P.

Februari 2014 Harold Ramis, star in the movie Ghostbusters and director of several movies such as Groundhog Day, died as a result of Autoimmune Inflammatory Vasculitis. (http://en.wikipedia.org/wiki/Harold_Ramis)

Autoimmune Inflammatory Vasculitis is related to Microscopic Polyangiitis and is an autoimmune vasculitis disease.  (http://en.wikipedia.org/wiki/Vasculitis)

It is of course utterly necessary that research is continued to the nature, causes and therapy of autoimmune vasculitis disease.

In my case the cleansing of my blood of p-anca particles is part of the therapy to overcome the disease, next to regular dialysis and a sodium-poor diet.

As a result of my present therapy my dialysis sessions have been shortened, from 4 hours per session to 3 and a half hours per session. But 3 sessions per week still.

Good news about my dialysis

I have good news about my dialysis. It goes well with me, so I’m going to have less dialysis. Yesterday (February 13th, 2014) my Nephrologist (for connoisseurs: the kidney specialist) told me that instead of 3 times 4 hours of dialysis per week, starting next sunday (February 16th, 2014) I will be having 3 x 3 ½ hours per week of dialysis and it might be even less in the future.

a Haiku

the past year I have written a Haiku

because I have studied Afrikaans (a creolized language related to Dutch dialects of the 17th century and related to the 17th century Dutch sailors-language) the Haiku is in Afrikaans.

‘n Bromvoël in die Karoo

brom, brom, skarrel in die struike

Aasvoëls hang in die lug.

translation: a ground-hornbill in the Karoo/ brom, brom, scrurries in the bushes/vultures hanging in the air.

http://af.wikipedia.org/wiki/Bromvoël

A friend accompanied me to the Dialysis Clinic

Two weeks ago a friend of mine accompanied me to the Dianet Dialysis Clinic in Amsterdam. She wrote about it in her blog. I would very much like to ask you to read her blog on the Good Men Project. Her name is Sherri and she lives in NYC.

Intimacy With a Man Going Through a Health Crisis

http://goodmenproject.com/featured-content/intimacy-man-going-health-crisis-gmp/

The info about MPA

The story of Microsocopische Polyangiitis (MPA)

(because of judicial reasons this part has been deleted)

….

The Dutch Wegener Stichting is in the Netherlands the main source for everything related with Vasculitis diseases.

The Cleveland Clinic and Johns Hopkins are the main sources for such information in North America.

For more information about MPA:

Wikipedia http://en.wikipedia.org/wiki/Microscopic_polyangiitis (Enlish)

Wikipedia http://nl.wikipedia.org/wiki/Microscopische_polyangiitis (Dutch)

Wegener Stichting: http://www.vasculitis.nl/ (Dutch)

Cleveland Clinic: http://my.clevelandclinic.org/disorders/microscopic_polyangiitis (English)

Johns Hopkins: http://vasculitis.med.jhu.edu/typesof/polyangiitis.html (English)

See also in Wikpedia: p-ANCA, Vasculitis, Churg-Stauss Syndrome

Kidney Failure and Microscopic Polyangiitis

Preface

I want to start this blog because of my confrontation with Microscopic Polyangiitis and resulting kidney failure.

My name is Henk and I am living in Amsterdam in the Netherlands for more than 30 years.

November 12th, 2012 I went to my doctor because I was not feeling at all well. I thought I had a persistent flue and an itchy feeling all over my body. My doctor immediately sent me to the hospital to have my blood checked. She judged by my complexion that something serious was the matter with me. At that time no one knew what was actually wrong with me.

I went to the hospital, the OLVG (Onze Lieve Vrouwe Gasthuis) around the corner from my house. There they took a few samples of blood from me and I went home afterwards. Not long after arriving home my doctor called me to come visit her immediately. When I talked with her she told me to go to the hospital, to the Emergency Department of the OLVG. Well I went to the hospital and I never came out of hospital for more than a month.

At that moment I understood that something serious was the matter with me. But no one could say exactly what was going on with me. But what was already evident was that my kidneys failed to work normally, waste materials, such as sodium and potassium, were not being broken down. And these waste materials were poisoning my blood and sub sequentially my body. I started to get an itch all over my back and chest. During my stay at the OLVG tests were being performed to find what was going on with me. With every other test they could exclude what was not the matter. It was already starting to be evident that I was stricken with Microscopic Polyangiitis. But only a kidney biopsy could give one hundred percent evidence. But this was not possible at the OLVG.

After some time staying at the hospital OLVG I started to cough up blood. Now things became really serious! I was immediately brought to the intensive care unit at the OLVG. They had difficulty getting me anesthetized. I started to panic whereupon they gave me an injection. I was completely out.

Now let me tell you about my circle of friends. The first days at the OLVG I immediately realized that things had to be arranged and I did ask one of my best friends because he was the one nearest to where I live and nearest to the hospital, to arrange my clothes, my mail, etc. I had myself already called my younger brother to tell him that I was in hospital and my friend also kept my brother informed. He also got into contact with my other friends and inform them of the situation. Immediately they arranged a visits schedule, I was never on my own during visiting hours at the hospital. That day I first went to my doctor I also called my employer to call in sick. My friend also got into contact with my manager to keep him informed. My circle of friends became an enormous source of support during those days. Thanks to my friends and their friendship I got myself back to health.

Back to my stay at the intensive care unit (i.c.u.). I was under sedation and things went from bad to worse. My friends told me later that I nearly had died. Things were that serious that my brother was called and asked to come to the hospital. My brother lives in the most southwest region of the Netherlands, some 250 km. from my home in Amsterdam and from the hospital. While I was out my brother and friends visited me at the intensive care unit. I do not remember but they told me I had reacted to their presence. At that moment I moved from i.c.u. of the OLVG into the Mobile Intensive Care Unit (the MICU) to be transported to the i.c.u. of the Academisch Medisch Centrum (AMC) in Amsterdam South East. There I was treated further. I woke up in a hospital bed at the Internal Medicine ward of the AMC.

Every other day I received haemo-dialysis and/or plasma pheresis to immediately clean and purefy my blood from the wastes that had been building up. A few days later I got a kidney biopsy. From the kidney biopsy came the final evidence that I had been suffering from an auto-immune disease Microscopic Polyangiitis. 

(Because of judicial reasons this part of the story has been deleted)

My kidneys nearly stopped working and while I was in hospital did work for only 5%.

After 7 sessions of plasma pheresis and regular dialysis and physio therapy I was healthy enough to go home.

Now since that time I am having dialysis three times per week, 4 hours per session.

Now that I am home my life has changed completely. I have to learn to live with the plight of my disease and the regular dialysis. But I also got stricken with diarrhoea.

I started to pick up my condition, to try and walk up three flights of stairs, to ride my bike again and do those steep bridges across the canals of Amsterdam. Slowly my condition increased only to be interrupted by another setback, early in April 2013 I ended up in the hospital again with a pulmonary embolism. I was not feeling too well, coughing was quite painful, and went to the Emergency Department at the OLVG, I was immediately redirected to the Emergency Department at the AMC, this was because I had been treated at the AMC earlier. I ended up in a bed at the AMC again being cured from a pulmonary embolism. To cure the embolism I was prescribed a blood thinner for about six months. A week later I went home again.

Ever since I left the hospital in April 2013 my health increased, the diarrhoea stopped. Slowly I felt my health getting better.

I can do 3 flights of stairs with ease, I can do on my bicycle the bridges across the canals of Amsterdam with ease.

May 18th, 2013 together with my brother and my friends I had a party for my brother, my sister-in-law and my friends to celebrate my return to health.