Finally, here we are.
I found out one thing: you can’t plan on writing a blog if you are in the hospital. I wanted to merge the report about my holiday with all of the ins&outs of my hospitalization. But that’s not going to happen. First, because I don’t have enough energy to do so. Second, because my SD-card has no desire to work along with my MacBook (reason? No idea). So I can’t share my holiday pictures with you yet. Third, because this blog would be way too long!
Despite all of this I have a lot of things to tell you (I don’t even have the time for all of it) that this blog is going to be a hodgepodge of things. I want to share most of my medical stuff with you, the rest will follow soon, I promise!
Let’s start with the reason of my hospitalization and some details of my holiday that are connected to this hospitalization:
Friday the 16th our holiday started, made thanks to all of your donations. To calm down your curiosity: the holiday was AWESOME and we enjoyed every minute of it!
Sunday morning I woke up feeling dismal. I couldn’t enjoy the lovely shower (at home I can only be washed lying in bed) as much as I did the other day because I didn’t feel well. The nurse gave me my medication in the shower and it felt like she was injecting sambal in my veins so I ended up in a kind of foetal position in my tilt able wheelchair.
I didn’t want to let my day be ruined by this, so I enjoyed every second of it!
Monday I had to go to Enschede by ambulance to go to my appointment with the surgeon to discuss my hip operation. The only surgeon in the Netherlands that wants to perform this surgery. Very exciting. It’s so unfortunate my EDS-specialist is still on a ‘forced’ leave.
The surgeon is straightforward. He asked me if I could stand in stork-position. He showed me the position: standing on one leg. Ehh, nope, that’s not going to happen.
My mom went with me to the appointment because we waited a long time for this one and it could determine everything about the future of my pelvis/hips/etc.
Strapped in the ambulance belts he examined me to the possible extent. Afterwards they did an X-ray of my pelvic area. I had to bite my teeth together! (If you’re falling apart literally and figuratively speaking)
What scared me is that the surgeon told me that in my condition (oxygen dependence) it was possible that after the (long) surgery I have to lie on the ICU with a breathing tube. This means I definitely have to weigh the pros and cons.
I have to go back a couple of times to get my known SI-shots but this time with screening/contrast fluid etc.
Eventually I had two long rides in the ambulance (10h-16h). On the way back the nurse in the ambulance suggested to bring me to the ER but I just wanted to go back to the vacation house.
We measured fevers until 41.5ºC. I usually have fever peaks, but this time it weren’t peaks, it was a constant fever. Especially in the afternoon.
The medication administration was getting more painful by the day and eventually it just came all the way up. Medication in your mouth is not tasteful.
So something is wrong here... The medication is administered in the small intestine, so it shouldn’t come all the way up. I had stings in my stomach, I threw up a lot and each, sorry Kate, but I threw up all over her (my dear friend and companion that went with me on my holiday) and myself and our beds in the middle of the night like some kind of llama...
The throwing up was getting more and on a daily basis. And a lot. My friends had a pot ready that I could throw up in and I cuddled it a lot at night haha!
And now in a short numeration my symptoms:
- Pain while administrating the medication through the jejunostomy (small intestine)
- Less and less bearing of the gavage through the jejunostomy
- A HUGE blown up belly that wasn’t caused by obstipation
- Throwing up a lot and frequently
- (high) fevers
- Medication coming all the way up while using the jejunostomy
This is a short numeration of the symptoms, but I didn’t want to give up on my holiday. I don’t think I have to explain why. The home care nurses and my friends took great care of me and watched everything closely.
The advice was to call the HAP (Primary Out-of-Hours GP Services, when you contact them, your call will be answered by a triage assistant. This assistant is trained to determine the severity of your symptoms and what needs to be done. This takes place in consultation with the on-call general practitioner.) If anything seemed off but you might remember the last experience I had with the HAP?
“That night there were things leaking on my pyjamas and my head. I am used to leakages so this time didn’t ring any bells. Until I woke up around 7 in the morning and thought it smelled a lot like medical things and I was soaking wet. I followed my IV-line with one hand and found a tear that was obviously the source of the leakage.
Bad news, because I had a direct link with the ‘outside world’ in my IV and possibly a lot of bacteria in my veins. So I called the specialists and they came to place a new IV-line and someone explained to how I could turn the pump off.
Everything went well until the evening. I was so exhausted I fell asleep for a short time and woke up with pain. It could be an EDS-thing, something wrong with my joints/bones/whatever, or it could be something else. Because the nurses advised me to contact the HAP, I did.
So the first phone call was without any problems. I would be called back by the GP. However, my mobile tends to have some problems lately and if someone calls me it jumps right to voicemail. Of course it happened this time, a missed call in the middle of the night. The GP. So I call him back. There is this cranky woman on the telephone that I can barely understand. I explain to her 6 times that I have a problem with my phone.
She says: ‘you just have to be attainable, but I will ask the GP to call you back.’
I explain the mobile problems again, but the message is not coming through. I get a little annoyed, it’s in the middle of the night, I am in pain and alone, I’m sorry, I tell her ‘I don’t think you are stupid, I am trying to explain some…’ and beep beep the woman hung up on me.
Okay, I call back and I get the other woman on the phone, the one that helped me in the first place. So suddenly she says I am calling with my home number and their system is NOT LYING. So in other words, I am lying.
Of course, I am lying in the middle of the night about calling with my home number or mobile phone. So I explain to her in a friendly way that I’m not calling with my home number, that I am calling to a direct number that might mix up their amazing system.
She keeps telling me I’m not telling the truth because she can see clearly that I’m calling with a home number.
I’ve had enough of their twaddle about phone lines and ask if the GP is going to contact me now that my phone is failing.
She doesn’t want to think about it, I just have to be attainable. After another discussion about home numbers and mobile phones, she hangs up on me.
I don’t think something bad is happening right now because my symptoms are staying stable, but what if they would? Should I wait until they get worse and call 911?
Now I call to the ER because I’ve had enough of these two ladies. I get a really nice (but busy, of course) nurse on the phone and her mouth fell open after hearing all of this. She told me to keep calling the HAP without a useless discussion about home numbers. People don’t call in the middle of the night for no reason.
I decide to call the regular number instead of the direct number, so this time maybe they can see I am calling with my mobile phone? I get the angry lady again, and she freaks out. I tell her I am going to file a complaint and ask her name, but she won’t give it to me.
I have no opportunity of explaining things. She would try to let the GP call again, but it would be on my house number. So tired of this.
I am not easily upset, but now I am. Physically that is a good sign, because it means that my symptoms are not that bad. I assume it was an EDS-thing. Sometimes I don’t know what is causing which pain anymore. But how they treated me here is ridiculous! I am definitely filing a complaint.
Well, I’d rather tell nice stories, but this is something that needs to be shared. It’s not all sunshine and roses.”
Well well, in the end everything came out fine, but the last thing I wished for on my holiday was stress and fights. I am stubborn, which brought me to where I am now, but I will call for help if I really need to. Thankfully I believe in willpower and switching.
Again, my holiday didn’t suffer from this. And with two EDS-people in a tiny house there is always something, right? :p
Okay people, I won’t leave you all tensed and tell you how this ‘ended’:
Friday the 23rd was the last day of this holiday and we had to check out of the house. That day my symptoms became worse and I got the last signal where my body was telling me that I really had to call the GP. I could barely sit in my electric wheelchair and all of the symptoms got worse.
Thanks ‘high powers’ (LOL) that I could finish my holiday. While checking out, my friend and I call the GP. They advised me to call the PEG/MDL-people and I did. I knew I had to go to the hospital.
So I went home and the ambulance picked me up (second time this week yay). My neighbours don’t even look up if there is an ambulance in the street, nor do my kids. It’s just ‘recumbent transport’ for mum and they only have great memories about ambulances because of ‘Stichting ambulance wens’ (Ambulance wish foundation).
So Lies is going with me again (cosy). We are put down at the endoscopy department. It is made clear very quickly that I have to go to the ER.
Then we find ourselves on an oasis of peace. No kids that I have to worry about, no other things to worry about (except me of course). Suddenly my body decides that it is allowed to let my symptoms get at their worst. I have to undergo some examination and at the X-ray things go wrong and I faint. A few moments later I woke up after a herxheimer reaction. Fortunately I am quickly conscious, because in this hospital you have to be.
This shows when the MDL-doctor stands beside my bed. He has an air of ‘don’t touch my title’. He claims that it’s not possible that my medication came all the way up into my mouth etc. How I wish for a button that I can push to let the doctors experience what happens in my body.
Then I wrote on my blog:
“I’m lying on my belly trying to suppress the pain, even with extra medication. I have to be my own specialist again and explain everything, I’m having a ‘so not Saar’ moment right now. Doctors/specialists annoy me a lot of times. They only look at statistics and things that are in ‘the book’ and they don’t know how to handle people with complex diseases but are too proud to admit so.
I have battled with this people so many times that I am sorry they only see one side of me. But the combative person in me brought me where I am now and last but not least, that I am still here!!
I wish they would see me as a whole person instead of an object and that they would get to know the whole me. My passion for life, my heart, my warmth, my inspiration, my love of life, me as a mother, and a lot more.
Thankfully there are great specialists, of which one unfortunately had to bear the brunt of his co-workers and is now at home.”
So, let’s go on.
She saw something was wrong, because I could go straight to the hospital ward.
This morning I had a nice doctor beside my bed and she dared to admit that I know my body better than any doctor and that I’m my own specialist.
My friend told someone ‘we would be perfect managers’ lol. But it’s true.
I had to undergo an annoying examination. That meant waiting in the hospital, the home of the sick :p
Eventually in the afternoon the doctors came and of course I was right about what was wrong with me.
I can hear you screaming in my ear: ‘Okay Saar, so what’s going on?’
The inside of my intestine is so irritated/damaged (typical EDS, and with all of the tubes I have it’s not getting better)
They have to avoid it from tearing (also typical EDS) and creating an intestinal perforation.
The doctors I have now are listening to me and I can communicate with them. We decided together to spare my bowls for at least two weeks. All the medication that is normally given through my jejunostomy will now be given through an IV and some of them rectally, etc. There are a few that have to be given through the jejunostomy, and there are a few that we put on hold for two weeks.
Besides that I have malnutrition (however, my belly is so swollen that I look like I’m 8 months pregnant and they really asked me this question in the ER). The gavage has got to go through the jejunostomy so we are going to make it go as slow as possible. We have to try tomorrow. For the next two weeks I have to survive on fluids. Anything I take orally doesn’t get into my system because my stomach isn’t working/digesting anything.
I know there is still a chance that my intestine will tear but that’s why we are being very careful.
Not feeling well...
Although I like my ward here in the hospital, I’d rather stay at home :p I don’t even have time to lay in the hospital haha. Well, when is it ever opportune?
The way it looks today, I am going home Monday. I have to organize everything about the children from my bed.
The advantage of my PICC-line is that I can go home with IV-things that other people have to go to the hospital for. Long live my PICC and my specialists!
Now a funny thing:
I had a very funny paramedic in the ambulance Friday. The paramedic asks me what I need to take into the ambulance. I tell him I need to take “my banana-pillow (feeding pillow) because I always lie on my side with a banana between my legs.”
The paramedic says “me too”.
So, everybody lies on the floor of laughing and he says “I need to watch what comes out of my mouth, my co-worker is going to think things about me, I already chose this profession”.
When we arrived at the hospital he asks me what I’m doing (I’m straightening the tube of my PICC-line) and I tell him: “I’m touching my PICC” (which sounds like ‘pik’, which is the Dutch translation of ‘dick’). The paramedic: “I touch it alsooohooo I won’t say a word anymore”.
Hahahahaha these kinds of people are amazing and born to do their profession.
Respect for a lot of them.
Okay dearies, I wanted to share a lot of other things with you. Funny things that happened in the ward, more ins&outs and impressive stories. But this blog was half a book already and my EDS/LYME fingers are tired of it, even though I worked on this blog with a lot of pauses.
The most important thing now is that you have an answer to why I’m in the hospital again and what we’re going to do about it.
I’ll write a nicer SO SAAR blog soon. So stay tuned for the holiday update and lots more!
I want to share so much more with you. To give you something to think about. But I will again soon. I can’t think straight anymore and it’s hard to stay awake now so before I’m going to write stories about pink elephants (lol) I’ll end this blog here.
Lots of love
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