back on dialysis

in early 2017 I was able to stop undergoing dialysis. My nephrologist decided it was not necessary anymore but still kept me under control. then in april 2017 is was found that the p-anca particles had increased and that dialysis was necessary again
later is was also found that the MPA had attacked my lungs as well. all the while I had been coughing and at some point I was coughing up blood as well. that was a reason to immediately get me a bed at the hospital.
Ever since that time I have been regularly very sick. I was retaining water whereupon my feet swell up. thru dialysis we could get rid of this water in my feet and legs. I had subcatane cellulitis as well.

in the space of 3 months I had a pulmonary infection this passed year.

Because I had to climb to the 4th floor to my front door with difficulty I went looking for a new house. Since March 10th 2018 I am living in a second floor apartment (with elevator).
Since that moving I have had a pulmonary infection twice and galstones.
Because of cardiac failure a subcutane ICD (http://www.bostonscientific.com/en-EU/products/defibrillators/emblem-s-icd-system.html) had been placed.

The dialysis is doing me good. I am feeling good. I enjoy my new apartment intensely.

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social welfare allowance

Last monday a consultant from social welfare (UWV) came to see me and talk to me. A friend of mine was there as well to keep me on the rails during my conversation with this welfare- and labor-consultant.
The consultant and I discussed the way I have been going in my life since I got this Auto-immunedisease. My hobbies, about my social life, etc.
He was of the opion that my life has had a great change and that my illness has been a great turnaround. And that I was unable to do the work that I used to do. Moreover he was of the opinion that the things that have happened to me with losing my kidneys and my left-eye made it really impossible to be able to do regular work in the field I used to work in.
Because of that he was sure that I am “unfit for work”, that is unfit as legally described. That also means that I will be receiving as from November 12th, 2014, a welfare allowance because I am unfit to work.
Between today and November 12th there will be a discussion held between my manager (and the health-case manager, both representing my employer), the aforementioned consultant and me, on how to finalize my case, that is my case at my employers and my case between my employer and social welfare. And by that time the financial consequences will also be put on paper. As from November 12th, social welfare will be paying my wages.

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.

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!

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.