This is a blog about how my (Agnes’) misery began. Disclaimer: Please note this is a personal and sometimes somewhat bloody story so if you don’t like it; Stop reading;-).
Two weeks before my bleeding I underwent a minor gynecological surgery. This was done quickly and I was back outside in a few minutes. Two weeks later I had a check up. I told the doctor that I still lost a little bit of blood. He said he could do something about it. He then tried to stop the light bleeding with a certain painless procedure.
I was relieved and the doctor said, now the little bit of blood-loss must be a whole lot of better. Confidently I went home. I had to get ready quickly because I had won tickets for the premiere of the film the Escape of Heleen van Royen. I was getting dressed up and my husband put on his most beautiful clothes. Delighted we left for the Delamar Theatre in Amsterdam.
When we arrived in Amsterdam we first ate a snack in front of the Delamar Theatre. We had a super spot because we could see the red carpet from here. I quickly went to the toilet before we went to the other side. Once on the toilet I lost a lot of blood. I thought right away: Oh well, this is because what the doctor has done, it will be decreasing.
Even more blood
Then we went into the theater. It was a very luxury entry, everywhere there were snacks and drinks and there where a lot of famous Dutch people. We had places on the balcony, this gave us a nice view of all the well known Dutchies in the Netherlands.
Just before the film started I had to go to the bathroom again, which is weird because I just went but I thought: maybe its the nerves? Once in the bathroom I again lost a lot of blood. I got a little scared and decided to text my mother (no picture, haha) for advice. My mother thought it was weird and said I had to keep an eye on it but I also had to try to enjoy the movie. So that’s what I did, what a wonderful movie! Though I was sitting together with pinched buttocks;-).
When the film was over and all the actors had gotten their flowers, we went home. I had to go to the toilet again and again it was a lot of blood. Also on the way back home we had to stop once because I found the pressure in my lower abdomen very annoying. Again a lot of blood is lost. At home I went to take a shower and then we went to bed, trying to sleep.
Unfortunately I could not catch any sleep, every hour the pressure in my lower abdomen was built so that I had to go to the toilet and lost a lot of blood there. Around 03 am I decided: this is not normal. I have never lost so much blood. I called the general Practitioner’s emergency post and the assistant said that I had to come right away. So there we went in the middle of the night towards the ER.
Once I arrived I could walk almost directly to the GP on duty. I did my bloody story and indicated that I didn’t trust it. The doctor looked at me and said confidently: You’re not going to die from a little blood loss, girl. He called with the duty gynecologist and he stated: she is completely stable. While the doctor has not perform any checks on me. On the basis of this information, the gynecologist decided that I could wait until the hospital was going to open around 08 am. I had to promise that I would come immediately at 8 am.
So that’s what we did, we went home and I wasn’t really worried at all. The doctor had said that my blood-loss was not bad and that I could wait until 08 am. However, I couldn’t catch sleep at all because the pressure remained on my lower abdomen, and I kept going to the toilet every half hour to discharge a lot of blood.
The next morning
At 08 am we got at the hospital. The doctor was quite busy so around 09 am we were welcomed into his room. I told my story, I was still super relaxed. The doctor looked at me and saw that it was a arterial hemorrhage. He decided that I had to undergo surgery today to stitch this thing up. He put some tampons in to stop the bleeding and referred me to the nursing ward. He did wrote on his paper that I looked pale.
Once I arrived at the nursing ward I had to talk to the nurse immediately. Weight, length, everything was measured for the spinal puncture or the anesthesia. Also I had to remove my nail polish, I still thought; this is crap guys, just put in the spinal puncture, put some stitches here and there and let me go home. Because of all the preparations, the nerves started to come out, but generally what I quite relaxed.
Then the waiting started. My husband was there and also my mother had come over. I was lying on a bed and had to get up every half hour to go to the toilet to discharge blood. I was somewhat weakened in the meantime, my mother cleaned up neatly all the blood in the toilet every time I went.
My husband went to the nurses post several times to say that the wait took a way too long time and that I was still losing a lot of blood. The nurses could not do anything about this, there had to be a place free in the OR for me and as long as it wasn’t, there was nothing left they could do.
And so hours of waiting went by. I kept thinking: from a little blood loss you won’t die. And still trusted this completely. The doctors know what they are doing, you are in the hospital, all is well.
After 2 pm I was finally picked up by an operation assistant. I kissed my husband and my mother and went to rock it. Little did I know that my body was already severely weakened due to the heavy blood-loss.
In the pre OR they made me ready for the spinal puncture. When they wanted to put a needle in my hand I went into shock. My body felt weird, I felt I slipped away. The assistant continued to say; Stay there Agnes, stay there. Around me there was panic, they had not yet done a blood pressure monitor to keep an eye on me and the blood pressure monitor that was available was too big. The woman next to me was stripped of her blood pressure monitor so it could be used for me.
The Assistant anesthesiologist (A.A.) continued to say to me: It’s good, I’ll get back to you again. I did not really feel panic within myself, but I felt very weird and felt I was floating away, but also experienced a certain crazy rest. Maybe that was because of the reassuring words of the A.A.. I don’t know if I was out for a little bit. I can still remember that I was suddenly in another room and the A.A. said that he would not leave me alone and that we could not do the spine puncture because I had lost too much blood.
So I was brought under anesthesia, I was still relaxed and I had all the confidence that everything would turn out right. A while later I woke up. I heard the nurses talk about that my neighbor had a way too low Hemoglobin. I still thought: ugh that’s so sad for that Mrs. They also talked about a possible blood transfusion. A little later they found out that they had talked about the wrong patient. So it was about me.
After that I was brought back to my room, I felt and not so nice. Also, I noticed that my elbow cavities were totally blue, both. Never saw something like this before. My first thought was that they had invited the local school to ‘try and stab the needle’ in this madame who was still under anesthesia.
The rest of the evening I was very tired so I slept on and of. Around 10 pm a nurse came. Whether I had any objection that I would get a blood transfusion. Huh? It is now 10 pm and it has just been decided that I need a transfusion? The doctor had indeed looked at the values again and thought it was good to give two bags of blood.
I was clear enough to ask: what are the reasons why someone refuses a blood transfusion? The nurse indicated that this is usually done from religious beliefs. I said that I had no objection. It took a while for the bag of blood to be ready, because it has to be brought to body temperature.
That night was a very troubled night. I had this needle in my arm with the drip for the blood transfusion and the nurse came to check a lot of times how my blood pressure was. This was on the lower end and I was thus summoned to drink the way too salty soup she offered every time. At night there was a nurse sitting next to me who had read what had happened. She asked how I was doing and gave me some tips for when I would get home, how I could get my HB up again quickly.
The next morning the doctor decided that I could go home. I still felt super weak but I liked the fact that I was able to go home. At home I quickly noticed that I had lost confidence in my body. I had fallen away in a shock, the nurse had awakened me that night before every hour because she was worried and now you are suddenly at home without any check ups.
Also, I noticed that there were some weird things. For example I wanted to peel a Kiwi and I didn’t manage to focus my eyes properly. It gave me a awfully feeling in my body. Also I felt super uncomfortable when I had moved my body. I had light and sound sensitivity. But everything was logical because of the anemia I was still having.
The doctor’s interview
Because I noticed that I still had many questions regarding the way everyone at the hospital acted that day I went back to the doctor. This doctor heard the story and was terrified. He had totally misjudged the situation that day. He thought the bleeding had stopped with the tampons. He forgot to tell the nurses that they had to call him if I would continue to bleed. But the nurses also had the responsibility to call him after our complaints about the continuous blood-loss. Nevertheless, the doctor took all responsibility and would have made different choices that day, with knowing what happened to me.
I also had questions about my shock and who had actually operated me. Because on the operation report was the name of my doctor but it turned out that he had already gone home. And I found it difficult not to know who ‘had stitched me up’
A Post traumatic Stress disorder?
In addition, I knew that I had a risk of developing a PTSD. After all, the trauma was there. It sucks big time that you have relied on the doctors and that they have almost let you bleed to death. I also know from my experience in social work that there’s more needed to develop a PTSD than ‘just’ a trauma. For example, if you don’t get support from your relatives and friends in processing your trauma but also when your story isn’t complete.
The support of my relatives and friends was immediate and unconditional. I was always allowed to talk about it and if I didn’t want or could talk about it, that was OK too. But my story wasn’t complete, I still had some questions about the whole thing. e.g. that I wanted to know which doctor had treated me, how big the panic in the pre OR was before I went into shock and how it could be that my elbow cavities were so blue.
At that time I talked to several of the employees involved and the story was very clear. The panic that I have experienced, they have not experienced in this extend. However, the A.A. indicated that he had given very clear orders because immediate action had to be taken now. The bruises were explained by the shock. When your body gets into a hypovolemic shock, all your veins stick together to keep sufficient oxygen within your vital parts. So, as soon as you want to puncture such a bonded vein to draw blood, it is almost impossible.
In hindsight with all the knowledge I have now, I would have love to do a few things differently. First of all, I will never have let me send back home in the middle of the night, the doctor should have do some examination on me at least.
The next moment what I could have done differently was that, once in the hospital bed at the nursing department, I should not have walked to the bathroom to get rid of the blood nicely. Instead of that it would have been better to just stay in my bed, so the nurses would see how much I lost. And then, the nurses could have better assessed the severity of the situation.
But yes that is looking back. In a next blog I’ll tell you about what research I’ve undertaken when I just didn’t got better and was still suffering from certain symptoms.