One week later it said it was now or never ...
My doctors in Bonn told me that in a clinic just a bed became vacant and I had to decide now if I do not want to be listed or.
Of course I said yes.
Then I was four weeks in said hospital, and I must say that I can not understand it, that is a fact given only six months to live, but alone the investigations to be listed can take four weeks. And I can tell you, there were not even 10 studies that had to be made there. This whole investigation gets Bonn including catheter examination in a maximum of one week out.
I thank my father that he stayed the entire four weeks with me.
Without him, I would certainly have the whole store together quantitative shouted.
The medical care in the hospital should be quite good, to be treated like a number when you stand on it of doctors and nurses from the top down or.
Honestly, I do not have any nurse a € 5 bill into the hand press just so they treated me like a human being.
So what do you do, almost 300km from the family removed to four weeks to bridge the waiting time?
It's simple. You walk, or in my case, it can be pushed through each transition of the hospital.
But even that was pretty boring after one week. I think that my father and I just made so we do not lose my mind.
My family I have in the whole four weeks seen only once.
When finally got my mom with my sisters, I was overjoyed.
And when she had to go back at night my heart has bled.
There was an Interesting incident while my mother was there.
It's just the way that my Ma has always managed my medication.
21 years and routine resulting therefrom knowledge is of course inevitable.
As my mother that day but noticed it was with my medication was something wrong, I had then still Marcumar take and the next day was a catheter investigation to which I, however, far too much warfarin dosage had in my tablet containers, they can be used immediately ask gone.
The nurses were very rude to my mother.
The questions -Who it at all unless it anyway because so auskenne- the 'proper' work of the nurses in question stellte- or -Why and -What because now they were even just wool but very unfriendly.
I can tell you since that day I take my own medication and share with them also own one. The vehicle was a shock.
When I think about what would have happened the next day with the much too high warfarin dose in my blood at the catheter reduction ... Na Prost meal I say just because.
And then we went to the lectern.
I have to say I've never had a Katherder get where I was conscious and still not walking across the neck. I've catheter until then always performed under general anesthesia and get set on the bar. That was a really new experience, but not a pleasant that day.
My father accompanied me to the catheter room and waited all this time before.
In this room three persons were present of which none presented me ...
Then I was allowed to climb on this great deck and was finally prepared.
Until then I did not even begin to explain what happened just now.
Only when I already have this beautiful cloth over my face glued to my throat, I had heard the door open and the doctor would make the investigation entered the room. At least he told me his name and assured me that in 20 minutes it would all be over. 20 minutes ... HaHa I can only say.
Apart from that was the worst stun hit my heart up to the neck.
Which of course was not unusual. I could not see anything, got badly under this towel air and always heard only a few votes but never once spoke to me.
Since I had no sense of time I did not know how long I've now lay upside down on this couch. I just knew that more and more people came into the small room and diligently they had about Discussed in which vein probably sting. They even brought an ultrasound machine to help but that unsettled the team gathered even more.
One must know that the carotid artery pulsates on an ultrasound image.
The vein which one of the catheters however not USER.
In addition, you should NEVER in the pulsating vein / artery or whatever sting ...
Anyway, they were so insecure that they decided to numb the left side of my neck at times since to try their luck ... That they had until then been repeatedly stabbed in the right side of my neck I do not have probably mention ...
So cloth down, turn head to the right, disinfect, it stuck a new cloth and again stunned. The ultrasonic device was this time taken from the start to rate and yet they were this time more than helplessly. While still some doctor was sought who could perhaps help promised me the doctor who performed the procedure, a bag of gummy bears in compensation ... At least something right?
And then finally a doctor came who could clarify the situation.
It was namely the following extent:
By Eisenmenger syndrome Pulsing the vein is the taken for the catheter as well, but of course not as thick in ultrasound as the aorta.
The doctors did not, however, or it was simply omitted them ... Yay it could at last move on.
Everything then came was done within 10 minutes.
Want to know how long the whole back and forth lasted?
Nearly three hours ... Congratulations their 'gods in white' you are great, I can only say.
A impudence I find it then that my father to his questions -Whether everything inordnung was - got any response. he was simply ignored again
Hey, he had been worried !!
After four weeks, which appeared to me as long as my whole life, all test results were finally complete.
But well, the doctors talked in this hospital for gods and all the others were only air I knew by then already.
The hospital sends all results to Euro-Transplant in Leiden where different doctors would decide about my future.
The cough which had tormented me until then was now almost completely disappeared.
What it was that the doctors in the new hospital, the daily inhalations with Ventavis had completely discontinued.
While waiting I met a very nice lady who was now transplanted lungs for ten years. I must say that me her story has helped to deal with the issue of transplantation. Because even if I have said it for me no questions asked were in this regard, was all but not so easy to work with.
Of course I was worried.
Would the OP survive at all?
How many years had I ever even after the transplant?
What would be the rehab time?
How would my life change?
I got thoughts like:
Do I have to re-equip my entire wardrobe?
Why I was thinking exactly?
Well I'm not the baddest and that's because I was increasing just super bad.
And if my heart would then no longer so extreme work, I would theoretically yes also increase ... Today I have pretty smile when I think that I've just asked me again and again that question.
The other thought I've tried to ignore as much as possible.
Less than 24 hours later, the answer came from suffering.
So I was now listed HU -High URGENCY.
HU is the highest urgency level there is.
HU it is listed if one still give the doctors at most six months to live.
And no further for 24 hours I was in an ambulance on his way back to Bonn. I was allowed to wait in Bonn to transplantation.
Meantime February 12 and in a week Weiberfastnacht would be.
So Carnival was at the door.
Since I was born in a really Jecke family belonged to the 5th season for me just as important as Christmas.
For me it was terrible that I could not go celebrate with my friends this year.
Weiberfastnacht I told this to my mom very proud over the phone that was risen My lufu below 30% on anything over 70%. Additionally, I can sit and watch all over the Skype dress for the evening I should also wait for the next day. Since there is probably a surprise to me.
The Carnival Friday came and so I think I've pretty stupid watched from the laundry when my mom came to the door purely and started a few of my things to pack together.
I was homecoming weekend!
I may not have gone out with my friends on the various trains but my family has for me a carnival party organized at home. That was great.
Evening, when I again had to Bonn Sundays I was wondering why I was doing to me really ... No one could tell me that I would really be in 6 months, death.
Just as one could give me the assurance that I would survive the transplant. Who said that my heart would not beat even the next 10 years. And what if I would let transplanting?
A fraction of surviving the next 2-5 years. The least life after ten years.
I was 21 years old and definitely too young to die!
So I sat Ash Wednesday with my doctors together and asked them that they should please talk to the other hospital and to change the HU Listing to a normal listing. Since it was already after 18 clock, my doctor wanted to put directly the next morning to the hospital emergency department. But unfortunately sparked the Schick hall between.
On the night of Ash Wednesday on Thursday I was quite surprised when the night nurse for twenty came to 12 in my room and told me to even come to the phone.
On the phone was a doctor from another hospital and tell me the Euro-Transplant've called and they had organs for me ... Haha how long the list was now her? One and a half weeks?
Parallel was my doctor just to another phone as my parents on my cell phone.
Funnily enough this doctor telephoned even with my parents and told them but that they should persuade me to agree to the transplant.
I find it pretty hard by this doctor nor my parents and my doctor to convince but to persuade me only.
The end was I rejected the transplant.
My doctors in Bonn told me that in a clinic just a bed became vacant and I had to decide now if I do not want to be listed or.
Of course I said yes.
Then I was four weeks in said hospital, and I must say that I can not understand it, that is a fact given only six months to live, but alone the investigations to be listed can take four weeks. And I can tell you, there were not even 10 studies that had to be made there. This whole investigation gets Bonn including catheter examination in a maximum of one week out.
I thank my father that he stayed the entire four weeks with me.
Without him, I would certainly have the whole store together quantitative shouted.
The medical care in the hospital should be quite good, to be treated like a number when you stand on it of doctors and nurses from the top down or.
Honestly, I do not have any nurse a € 5 bill into the hand press just so they treated me like a human being.
So what do you do, almost 300km from the family removed to four weeks to bridge the waiting time?
It's simple. You walk, or in my case, it can be pushed through each transition of the hospital.
But even that was pretty boring after one week. I think that my father and I just made so we do not lose my mind.
My family I have in the whole four weeks seen only once.
When finally got my mom with my sisters, I was overjoyed.
And when she had to go back at night my heart has bled.
There was an Interesting incident while my mother was there.
It's just the way that my Ma has always managed my medication.
21 years and routine resulting therefrom knowledge is of course inevitable.
As my mother that day but noticed it was with my medication was something wrong, I had then still Marcumar take and the next day was a catheter investigation to which I, however, far too much warfarin dosage had in my tablet containers, they can be used immediately ask gone.
The nurses were very rude to my mother.
The questions -Who it at all unless it anyway because so auskenne- the 'proper' work of the nurses in question stellte- or -Why and -What because now they were even just wool but very unfriendly.
I can tell you since that day I take my own medication and share with them also own one. The vehicle was a shock.
When I think about what would have happened the next day with the much too high warfarin dose in my blood at the catheter reduction ... Na Prost meal I say just because.
And then we went to the lectern.
I have to say I've never had a Katherder get where I was conscious and still not walking across the neck. I've catheter until then always performed under general anesthesia and get set on the bar. That was a really new experience, but not a pleasant that day.
My father accompanied me to the catheter room and waited all this time before.
In this room three persons were present of which none presented me ...
Then I was allowed to climb on this great deck and was finally prepared.
Until then I did not even begin to explain what happened just now.
Only when I already have this beautiful cloth over my face glued to my throat, I had heard the door open and the doctor would make the investigation entered the room. At least he told me his name and assured me that in 20 minutes it would all be over. 20 minutes ... HaHa I can only say.
Apart from that was the worst stun hit my heart up to the neck.
Which of course was not unusual. I could not see anything, got badly under this towel air and always heard only a few votes but never once spoke to me.
Since I had no sense of time I did not know how long I've now lay upside down on this couch. I just knew that more and more people came into the small room and diligently they had about Discussed in which vein probably sting. They even brought an ultrasound machine to help but that unsettled the team gathered even more.
One must know that the carotid artery pulsates on an ultrasound image.
The vein which one of the catheters however not USER.
In addition, you should NEVER in the pulsating vein / artery or whatever sting ...
Anyway, they were so insecure that they decided to numb the left side of my neck at times since to try their luck ... That they had until then been repeatedly stabbed in the right side of my neck I do not have probably mention ...
So cloth down, turn head to the right, disinfect, it stuck a new cloth and again stunned. The ultrasonic device was this time taken from the start to rate and yet they were this time more than helplessly. While still some doctor was sought who could perhaps help promised me the doctor who performed the procedure, a bag of gummy bears in compensation ... At least something right?
And then finally a doctor came who could clarify the situation.
It was namely the following extent:
By Eisenmenger syndrome Pulsing the vein is the taken for the catheter as well, but of course not as thick in ultrasound as the aorta.
The doctors did not, however, or it was simply omitted them ... Yay it could at last move on.
Everything then came was done within 10 minutes.
Want to know how long the whole back and forth lasted?
Nearly three hours ... Congratulations their 'gods in white' you are great, I can only say.
A impudence I find it then that my father to his questions -Whether everything inordnung was - got any response. he was simply ignored again
Hey, he had been worried !!
After four weeks, which appeared to me as long as my whole life, all test results were finally complete.
But well, the doctors talked in this hospital for gods and all the others were only air I knew by then already.
The hospital sends all results to Euro-Transplant in Leiden where different doctors would decide about my future.
The cough which had tormented me until then was now almost completely disappeared.
What it was that the doctors in the new hospital, the daily inhalations with Ventavis had completely discontinued.
While waiting I met a very nice lady who was now transplanted lungs for ten years. I must say that me her story has helped to deal with the issue of transplantation. Because even if I have said it for me no questions asked were in this regard, was all but not so easy to work with.
Of course I was worried.
Would the OP survive at all?
How many years had I ever even after the transplant?
What would be the rehab time?
How would my life change?
I got thoughts like:
Do I have to re-equip my entire wardrobe?
Why I was thinking exactly?
Well I'm not the baddest and that's because I was increasing just super bad.
And if my heart would then no longer so extreme work, I would theoretically yes also increase ... Today I have pretty smile when I think that I've just asked me again and again that question.
The other thought I've tried to ignore as much as possible.
Less than 24 hours later, the answer came from suffering.
So I was now listed HU -High URGENCY.
HU is the highest urgency level there is.
HU it is listed if one still give the doctors at most six months to live.
And no further for 24 hours I was in an ambulance on his way back to Bonn. I was allowed to wait in Bonn to transplantation.
Meantime February 12 and in a week Weiberfastnacht would be.
So Carnival was at the door.
Since I was born in a really Jecke family belonged to the 5th season for me just as important as Christmas.
For me it was terrible that I could not go celebrate with my friends this year.
Weiberfastnacht I told this to my mom very proud over the phone that was risen My lufu below 30% on anything over 70%. Additionally, I can sit and watch all over the Skype dress for the evening I should also wait for the next day. Since there is probably a surprise to me.
The Carnival Friday came and so I think I've pretty stupid watched from the laundry when my mom came to the door purely and started a few of my things to pack together.
I was homecoming weekend!
I may not have gone out with my friends on the various trains but my family has for me a carnival party organized at home. That was great.
Evening, when I again had to Bonn Sundays I was wondering why I was doing to me really ... No one could tell me that I would really be in 6 months, death.
Just as one could give me the assurance that I would survive the transplant. Who said that my heart would not beat even the next 10 years. And what if I would let transplanting?
A fraction of surviving the next 2-5 years. The least life after ten years.
I was 21 years old and definitely too young to die!
So I sat Ash Wednesday with my doctors together and asked them that they should please talk to the other hospital and to change the HU Listing to a normal listing. Since it was already after 18 clock, my doctor wanted to put directly the next morning to the hospital emergency department. But unfortunately sparked the Schick hall between.
On the night of Ash Wednesday on Thursday I was quite surprised when the night nurse for twenty came to 12 in my room and told me to even come to the phone.
On the phone was a doctor from another hospital and tell me the Euro-Transplant've called and they had organs for me ... Haha how long the list was now her? One and a half weeks?
Parallel was my doctor just to another phone as my parents on my cell phone.
Funnily enough this doctor telephoned even with my parents and told them but that they should persuade me to agree to the transplant.
I find it pretty hard by this doctor nor my parents and my doctor to convince but to persuade me only.
The end was I rejected the transplant.
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