I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: Lunablu on February 08, 2015, 03:05:47 AM
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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 :banghead; 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 :boxing;
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 :cheer: ) 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 >:D ), 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 :stressed; 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 :waving;
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! :cuddle; 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 :grouphug;
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Hi Lunablu, welcome to the site
:welcomesign;
I'm born in Rotterdam, so it's lovely to have another Dutch person here (I live in the UK though)
I hope you'll get used to this (I've started calling it ridiculous) situation soon, but also that your dad will turn out to be able to donate his kidney.
Take care, Cas
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Hello Lunablu
Welcome to IHD and I am sorry that it took such a long time for you to get diagnosed.
... I am very happy for you that your father is going to donate one of his kidneys to you
and I do hope everything goes alright for both of you.
I am in a similar position, having "just" started dialysis in December 2014
and my husband is going to donate one of his kidneys in a special "paired and pooled" exchange, because our blood does not match...
... In this exchange, the nephrologist is going to "find" a kidney life-donor who is going to match my tissue and blood
whilst my husband donates one of his kidneys to someone matching his tissue and blood ...
For me the thought about it all is still very strange and eerie and I have only just started to "make friends" with the idea ...
Best wishes and good luck from Kristina.
P.S. Being a "Continental" myself, I have travelled to Holland many times and I have always enjoyed it very much.
... For many years I have been living in London with my husband ...
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Welcome, Lunablu! Sorry you are going through so much! Sounds like you have a good attitude towards this challenge and good sense to come here looking for answers and support. Good step to take! Lots and lots of information here and lots of friendly experienced people. Ask a question and someone is always quick to answer. Good luck on your journey!
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:flower; woehoe, contact! Thanks for all your sweet replies!
Kristina, so we're on the same boat! I've heard about the cross-donation and think it's a wonderful system. You're right, it's a strange idea, transplantation..on the one hand I'm looking forward, especially when dialysis is going like sĄŁ$ t and in the hospital everybody is talking very lightly about it, but at the transplantationcentre it's the other way around and I get very good information about the risks and consequenses..it seems like a big deal to me and while I'm looking forward to it, I'm also very much in fear. What will it be like??
Good luck with your journey!
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Hello lunablu,
I feel the same as you do : on one hand I look forward to the transplant and on the other hand it frightens me a bit ...
I am also concerned about my husband's kidney donation and I do hope his body is doing well afterwards...
... You are right: cross donation is a wonderful system and I would not have thought that a few years ago,
but now I have grown to really "make friends" with this idea as well ...
... Strangely enough I do like dialysis very much, because my body has taken to it and does not show
significant side-effects to each of my dialysis-sessions and I am very grateful for that... and on top of it, dialysis keeps me alive...
... I also wish you good luck on your journey and I look forward to our information-exchange about our experiences...
Best wishes and good luck from Kristina.
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Welcome. On thought I had reading your introductions if PD is rough for you is HD an option? Here in the US they promote PD as an easier option, but depending on the person HD may also not be that bad. Here they would generally let a patient use whatever method works for them.
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Hi Iolaire!
Thanks for your advice and thought! I did had a choice, like you explain, but I had to make it within two days..all the while overcoming the weird and absurd situation I suddenly was in..I went to the dialysis centre one, had a half an hour tour..HD really freaked me out, PD seemed the least worst or something. I still feel that way, I must admit. Every second day those BIG needles and the fistula...I really am truly scared of it and sometimes see it very dark for my future if one day I have to do that.. I really really don't :'(
I'm holding on to the thought that in a few months maybe maybe I get transplanted..of course I know that it's not the end to all, but I think it's a lot better than this right now..I really hope so ::)
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I agree with you. At least once you have a transplant you will have some years to process all this and if you ever have to go back on dialysis you will be better informed.
Glad you joined us.
Welcome - Rerun, Admin.
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It has been a while since I was on the forum. I think it was because I was busy dealing with my PD our times a day and trying to come to terms with the negative aspects of it. On second thought I felt Coming here made me feel worse..I have had trouble accepting truly my disease, I was kind of living in the here and now to get through. It did get better, I had less pain and dialysis went more good than bad, so maybe I was sort of dealing with it this way. In real life people kept asking me how I felt, on my job I speak a lot of people so a lot of people were constantly reminding me I was an seriously ill person. It happened often that people started crying when they talked to me and I felt very absurd by that. For me it was no option to dive deep in that sorrow, I was just managing. So I also stayed away from the forum.. I think though I have a lot of crying ahead of me >:D I didn't mourn and I didn't accept still...
Meanwhile I was preparing for transplantation, which was a real experience: every step was exciting and took us further. Tension and relief went hand in hand every step along the way.
But finally there came the relief that my dad was a fitted donor!! :bandance; and how: we matched on every point and he had a kidneyfunction of 130% hahaha very shocking next to my function of 4% :2thumbsup;
And 8 days ago I had his right kidney transplanted into me :bow; I'm so grateful to him! All went super well, the kidney is doing its job, the wounds are healing and yesterday I came home at day 7. I now have a creatinine level of an average person (it went from 950 to 450 in 6 hours after transplantation and is now 87) and the doctors are all quite excited. The echo showed everything was just fine. Taking medications is not so hard, side effects aren't showing yet, except that I'm a bit rushy shaky from prednisolon and have a bit of diarrea from maybe prograft?
I'm recouperating fast, took two stairs today without huffing and puffing that much :) did a little work in the garden today, feeling almost no pain but a heavy feeling near the scar. Lost a lot of muscle so have to regain that over the next few months, but easy does it I think. My father went home after 1,5 day but is feeling worse than me since he can't use his bowelmuscle and I can, he's 25 years older than me so recouperatiing also is harder, but he takes it slow and is in seventh heaven for helping me. I have a truly proud and happy dad and I love him for this great gift!!
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Wow girl, fantastic news, what a match!!!
:yahoo;
And great your dad went home so soon too!
Wishing you both lots of re couperation, full recovery, and please have an extra drink on me
Love, Cas
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That is awesome! :cheer:
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Hello, and :welcomesign; to IHD...
Great news about the transplant... Congratulations!....
Darth... Moderator...