The story of Microsocopic Polyangiitis (MPA)

The story of Microsocopic Polyangiitis (MPA)

MPA has attacked my kidneys in 2012 and now 2 years later it has also attacked my left eye.

November 2014 it will be 2 years that I am on sick leave and in the Netherlands that means that I shall have to be examined by a physician working for social security. This is necessary for me to be eligible for social security and the percentage of social security I will be receiving and the percentage I am still fit to work. And afterwards someone else has to examine what sort of work I can still do given the fact that I am partly unfit to work and that I have to have dialysis 3 times a week (with everything that entails). A few weeks I have sent in the necessary paperwork for the request of said examination. I received notification that paerwork had ben received and yesterday someone from UWV (the office that does the examination for the social security eligibility) called requesting some extra info regarding my auto-immune disease. I explained to him the status of my disease and what my disease can hold in store, the attack of the other organs in my body (infections of the capillaries of an organ). Now he has to use that information and act upon it as part of the examination.

Anyway; I need a holiday.

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A visit to the ophthalmologist at the Academic Medical Center in Amsterdam

Today I paid a visit to the ophthalmologist at the AMC after a week full of eye exams.
The last week (11 July 2014) I was rushed to the ophthalmologist because I had reduced vision in the left eye. It was already quite likely that my left eye was partially attacked by my autoimmune disease.
Today I finally got an insight into what happened in my left eye. As a result of P–Anca related vasculitis (my microscopic polyangiitis, my autoimmune disease) my left eye temporarily received insufficient amount of oxygen through the blood because the capillaries were inflamed. This is called an infarction. As a result, a part of the sight of my left eye (“the curtain at the top of the field of view of my left eye“) was inoperative. I also understand that this cannot be corrected anymore, but we can prevent it from getting worse. I am now under the control of one of the leading ophthalmologists of the AMC.
The dialysis has changed now, there is less Fraxiperine (anti–clotting) given, and the technique is slightly modified, predilution (pre-mixing water and blood, instead of post-dilution) before it enters the artificial kidney of the dialysis machine. But my dialysis goes on as normal without severe problems.
Well, besides two rickety kidneys a creaky left eye is another addition.
Because my physical condition is good I can endure this. I must accept it and deal with it. .

My left eye

Yesterday (July 11, 2014) I was urgently admitted to the Ophthalmic clinic of the AMC.
1) What was going on: I missed part of the field of vision of the left eye. There was a curtain at the top of the field of vision of the left eye. The presumption was that possibly part of the cornea had become unleashed.
2) The diagnosis: After much research it became apparent that the capillaries were severely narrowed in the left eye. The most obvious reason is the inflammation of the capillaries caused by vasculitis (this has to do with my Microscopic Polyangiitis).
3) the inflammation is treated with prednisone.
4) What does this mean: the procedures that were initiated for a kidney transplant are pushed to the back burner (for several years).

I am back at home because I didn’t need to be hospitalized

More Good News

On June 19th, 2014 I received more good news.

My nephrologist told me that my dossier about my kidneys is to be given to the kidney transplant group.

One of the aspects of my disease MPA is the presence of Anca-particles in my blood. The level of these particles is as low as it was when I left the hospital at the end of 2012. That means that the disease has come to a stop for now. It also means that there is no risc for the disease to reject a transplanted kidney as well.

Because of that the chances of a succesful kidney transplant are there. Now the time has come to do research whether my body and my heart, etc. can withstand the operation of a transplant. Because of my age a check of my heart is necessary.

I am in very good spirits with that news. It was already evident because of my current condition that I was doing well. I have started working again. But this has been great news that the possibility of a transplant is there. I hope you all enjoy the great news as well.

Good News

On June 5th, 2014 I had a talk with my kidney specialist. During the conversation it has become apparent that after two years of illness and kidney-failure, this coming November the research is going to be started on whether a kidney transplant will be viable, and then it is the start of waiting for a transplant kidney. We have to make sure that my MPA has died down and that MPA can’t destroy an eventual transplant kidney.
Furthermore it has also become apparent that my health is on the whole quite good apart from my two rotten kidneys.
All in all this is to me very positive news.
And I feel good!

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 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 12^th, 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 18^th, 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.