Hello all of you!
This is my first post, but I've been reading topics here since September. It was already very helpful in terms of actually knowledge but also (and maybe even more important to me) to have some comforting and relief..I. Find it very nice to read that everybody struggles with this stupid disease just like I'm doing. Otherwise I feel myself somehow a bit lonely and that bothers me
I get frustrated and angry and that makes it harder to accept everything. So..thank you already!!
My name is Monique and I'm from the Netherlands. I'm 38 years old and I'm a psychologyst. I'm not married, but have a long term relationship with the most terrific man in the world
we're very happy together. I work at a labourschool with youngsters and have my own practice (where I mostly work with adults). Funny enough, my specialty is acceptance and commitment therapy, widely used for trying to come to terms with the hard punches life can throw you
Apparently I fell ill some years ago, but I did not notice enough. I had severe backpain and on some times my urnie was red with blood. The doctor thought nothing really of it and treated it as kidney-infections and when the blood went away, she said I was cured. The pain stayed though.. I tried to live with it.
After a year I met my boyfriend. Soon I moved in with him and we started dreaming of a bigger home. We came across a beautiful house, totally wrecked though, but still: we were in love with eachother and with the house so we started to tear it apart and completely rebuild it. It took us three years, but it is wonderful. (Blog of the whole process:
http://huissiehuissie.wordpress.com )
It took a lot of pain too for me. I was getting more tired, more backpain. I thought it was because of the hard work. I got severe headaches, which I never had, but thought nothing of it, I threw it on not having vacations, working so har on the house, opening my own practice amd working 50 hours a week besides the work on the house. I found it not strange that it wore of on my body and mind.
In 2014 it started to get even worse: I was nauseous every morning, the headaches were so strong I couldn't talk sometimes (which is really nice in my kind of work
) and I was very emotional. We tried to have a baby because I wasn't getting younger and we decided it would be very nice to have a little kid. Several times I thought I was pregnant because of the symptoms, but every month it was a disappointment. So after a while I decided I was very much stressed and even maybe depressed or burned out.
Summer 2014 we made a big roadtrip by car, traveled to Istanbul and a magical island of Greece. Some of my pain went away, but I was so tired..I couldn't even climb 600m. mountains from the see to our cabin every day. The climb took me an hour every time. It concerned me: what was wrong with me? Was it the burn-out? Back in Holland all symptoms got even worse and I had funny symptoms like a bloated lip one morning, a bloated leg, dizziness. Maybe it was time to get to a doctor..
All of you already recognized the symptoms of kidneyfailure of course, but for me September 5 2014 this diagnosis came as an absolute shock. After a visit to the GP he told me to rush to the ER and there they looked very concerned and frightened at me after doing blood- and urinetest. My kidneys were shrunken and worked for only 4%. My ureum and creatine levels were 12 times as high as for normal persons and I had severe aneamia. They said I could die very soon and I had to stay in the hospital for a week. Everything was very strange, the world looked like it stopped moving and like it was spinning very fast at the same time. Once the whole situation got clear for me after 5 days I cried a river full of tears, I cried the whole day long. The day after I decided that I had to carry this load and started to look forward. The same week I had to decide whether to pick HD or PD, but they recommended the latter, so I went for that. September 15 I had my catheter.
Then started a tough period with my stomach having trouble adjusting to the catheter (me too
), causing pain and frustration. And of course my calium and phosphatelevels being skyhigh, I couldn't even look at a piece of food and the alarmbells went off
hahaha. I managed though but lost again a lot of weight. When all stomachwounds were healed I started on dialysis in October on the HomeChoice but that hurt so much after three days I started CAPD and that went very well..until one day after
it appeared the cathertip had moved to my upper stomach. Laxating didn't help, so I had another operation fixing it and sewing the cather to my stomach.
End of October I started dialysing again. First weeks it was on and off working very good and some days it was not. Whole month of January everything was perfectly doing ok, but now - since February - it is on and off again. On ok days it only takes me 15 minutes for the whole routine and just a little bit of end pain. On bad days like the last seven days, it draws half a litre and then the catheter tip sucks on my bowles (I don't know the proper English word). I shake, I go on all fours, I do a handstand and every move makesit dripdripdrip and then stop again. It can hurt nasty too
So..I know it's a long story and probably I have no readers left at this point, but if you're still there: thank you for reading!
Writing this was also very good to do. I think I manage, but it's still hard and frustrating sometimes, but I think that's normal. I have to find balance again and that's nit a simple thing to do. I'm a bit rough at myself, I don't know my boundaries very well and am prone to cross them. Since beginning of November I'm working again at the school, for threehalf days, but half of January I expanded that to four days and maybe it is too much, since I also work in my practice in the evenings and can't say "no" to exciting things as giving lectures and classes at bachelorstudents.. This is maybe the toughest challenge of all: as a psychologist I know everything about getting in psychological and fysical balance..as a patient I've only must begun.
Good thing is that my dad has offered to become a kindney donor right from the start. If he's no match then my mother and my boyfriend will be next. My father has had several tests and till now he's a match. End of February he has his final tests, so it's very exciting!! If he can be a donor, we can scheduke an operation in April, March or June.
I hope to get help, advice, soothing maybe, recognition and I guess a lot more here
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