My intestine story - Nausea... Day 10.

Here follows a journal of the past two weeks and the difficulties I went through. I will write each day as a new post for easy reading. To sum it up: I had to get an emergency operation because my intestines couldn't digest food. Here is what happened...

Wednesday, 28 May

I had an okay night's rest. At least no one came to rob me of my blood. 

I was now getting more nauseas and even threw up once during the day. Nothing passed through me as well.

Now by now I think you must think: Woman, why do you eat if you are nauseas, bloated and your tummy's not working the way it should?
Simple answer - I have CF. I am always hungry, there is no compromise. Even when I am nauseas I think about food.

I did let the doctor and surgeon know about my nausea. Unfortunately my surgeon was on leave for a week, so someone else had to cover for him. The new cover was also nice. Ah, who am I kidding? He is the hottest guy I have ever seen!! So freaking beautiful! Every time he walks into my room, I forget to tell him what is wrong with me. Haha, wow. He melts you with his eyes...

Back to seriousness. During the night I barfed 3 times. I barely got any sleep. I was tired and week and nauseas and hungry. Not good combinations as they contradict each other completely. You are weak because you don't eat, but you can't eat because you are nauseas, which makes you weak. 
The TPN I was getting did help. But food is food, hey. Nothing can replace a baked potato with a grilled chicken breast and roast veggies on the side.

My parents got very worried now, again. What was happening?

My intestine story - Finally moving to ward A and out of ICU. Day 9.

Here follows a journal of the past two weeks and the difficulties I went through. I will write each day as a new post for easy reading. To sum it up: I had to get an emergency operation because my intestines couldn't digest food. Here is what happened...

Tuesday, 27 May

Yay! And I am out of here! ... Well, I'm out of ICU, but still in hospital. I was finally moved to ward A. The catheter was taken out and blood was drawn one last time. I was quite happy to go to the ward. I wanted peace and quiet. I wanted sleep and no pricking of my veins. I wanted real food. I wanted a nice view. I wanted my own bathroom.

I was wheeled into room 22 just after lunch. Everything seemed okay, except for the fact that I was extremely nauseas. I did not throw up, however, and we still thought that it could be the pain meds that I was getting.

The doctor and surgeon were okay with me being nauseas and with me not having to have gone to the bathroom yet, as they said that it could be quite a while before something happens.

My parents were all too happy to have me moving off to the ward. Getting out of ICU shows progress.

My tummy still felt very bloated and the stitches were still a bit sore and uncomfortable, but as a CF who always endure some sort of pain or uncomfortable feeling, I did not thing much of it.

They took Xrays again and everything was fine.

My intestine story - Getting a bit better. Day 8.

Here follows a journal of the past two weeks and the difficulties I went through. I will write each day as a new post for easy reading. To sum it up: I had to get an emergency operation because my intestines couldn't digest food. Here is what happened...

Monday, 26 May

Today was just a normal day. Well, normal being a relative term. Nothing bad happened. Nothing good happened. I ate a bit, was still nauseas, and still had pain when I received physio.

My dad also said that I looked a lot less pale. I now was more active on Whatsapp, but still didn't had the strength to Facebook or to read as my eyes weren't quite adjusted yet. Once again, I don't do well on anaesthetics. 

Because of the fact that I didn't do too bad, the doctor decided to move me to Ward A the very next day. Once again, I would have my own room where no one bothers anyone. I also just needed some rest.

DID YOU KNOW?
They draw blood AT LEAST 3 times per day in ICU to check things like potassium levels. And did you also know that one runs out of veins?

I got so sick of them drawing blood the whole time.

Us CFs are supposed to be okay with needles and things since we ALWAYS are being poked by needles and insulin pens. But I am still that person who puts a pillow over her eyes when a drip is inserted.

The thing that I looked forward to the most was the fact that they would not draw any blood in the ward. Yay!

My intestine story - Moving to ward A is postponed. Day 7.

Here follows a journal of the past two weeks and the difficulties I went through. I will write each day as a new post for easy reading. To sum it up: I had to get an emergency operation because my intestines couldn't digest food. Here is what happened...

Sunday, 25 May

I used the bathroom today!
I got upgraded on food today!
I would have been moved to ward A today...

I couldn't walk yet, so I was pushed in a wheelchair to the bathroom where I finally got something out of my system. Although it was because they gave me a suppository, it was still a good sign.

I was still weak and tired, but very hungry! The doctor did not want to move too fast, but I got a better soup and also custard with my jelly. What an improvement! I could drink apple juice as well.

Mom and dad visited again. They had trouble getting into ICU though. Now remember, we stay in Pretoria and my parents both work. They can't take off the whole time and traffic is a big issue. So if they adhere strictly to the ICU visiting hours, I would hardly see them. But because of them staying in Pretoria my doctor, in the past, ordered the ward where I usually stay when I get the 2 weeks drip treatment, to not refuse any visitors. They were happy to work like that. Of course I understand that ICU is different, but it was not like we were having a tea party. Plus, I was in my own room. We didn't bother anyone.

The security guard refused to let my parents in, although there was not issue before. In the end they were allowed in, but my mom firmly gave a piece of her mind to the head sister, who was being difficult. 

Health wise everything was still well. The surgeon was happy and my doctor too. The physio was very tough still. Every time I had to cough, the physio had to hold my front and back firmly. It was a painful process, but my lungs needed physio.

By now I had some small things to eat, and I chewed it very carefully, making sure that I don't swallow any big pieces (or small pieces, only pulp). I just can't handle a diet where someone refuses me food.I also had a TPN infusion to keep me from losing too much weight.

Although the eating did go better, I was quite nauseas. I also felt a bit bloated, but I figured that nothing can come out if nothing goes in. Therefore I still ate, and the surgeon was fine with that.
Then something new happened to me: Every time I ate, I got cramps. But luckily this was normal because it was only wind and food shifting.

Because of the fact that I was so nauseas and almost threw up, my doctor decided to keep me in ICU for the rest of the day. For the second time my moving to ward A was postponed.

My intestine story - Removing the tube. Day 6.

Here follows a journal of the past two weeks and the difficulties I went through. I will write each day as a new post for easy reading. To sum it up: I had to get an emergency operation because my intestines couldn't digest food. Here is what happened...

Saturday, 24 May

The tube was finally taken out! Due to the fact that I was still high on pain meds and that I don't handle anaesthetics well, I was barely aware of the uncomfortable feeling and pain. Luckily! 

Mom brought me some cool products that she bought; a body lotion, hand and nail cream, foot repair balm, hand scrub, and body wash. It all smells so divine! Of course I was still unable to do anything, so she just took it home and said she'll bring it later when I am out of ICU.

By now, ALL Mom's friends and friends' friends prayed for my recovery. The news spread extremely fast! My high school friends (and non-friends) wished me well and people invited my mom, dad and sister to have dinner with them so they don't have to cook when they get home late from the hospital. It is heart-warming to see how people reach out to each other in such a tough time.

I was still unable to "do my thing" in the bathroom, but the surgeon and doctor wasn't worried as they said that they really man-handled my intestines and that my body should wake up and recover first. I still had to drink that watery beef stock soup, but got jelly for dessert.

At night Mom asked if she should spend the night here again. Shame, I really really wanted her to stay, but couldn't get myself so far to tell her to stay again. So I spent the night alone.

My intestine story - Why the surgery was needed. Day 5.

Here follows a journal of the past two weeks and the difficulties I went through. I will write each day as a new post for easy reading. To sum it up: I had to get an emergency operation because my intestines couldn't digest food. Here is what happened...

Friday, 23 May

I'll tell you what was done in surgery in just a while. (You can skip to that part - it is at the end of my day's activities).

I woke up all groggy. I had an apparatus where I had to push a button every time I felt a lot of pain. Within a day the bag was empty and I requested a new one. They refused and said I only get one. Only later (a few DAYS later) did they inform me it was morphine. If I had known THAT I would have restraint myself much more! Not that I could get an overdose, as the machine would only give a certain amount every few minutes, but wow, I would have endured some pain for a while to feel happy later. Haha.

My dad, after sleeping in a chair, went home later the morning. I was sleeping the whole time. I had a catheter and a tube down my nose to drain my stomach. As I didn't swallow, I was quite fine with that. The catheter was heavenly as well - do you know how nice it is not having to get up to pee the whole time??

Of course us CFs HAVE to get our physio. And whether we get it or not, coughing is inevitable. 
That was what killed me. Now I had this massive incision on my belly and every time I coughed it felt as if the stitches were ripping apart. 
My physiotherapist came to give me physio and supported and held my everytime I had to cough. He was so nice. At some point I heard him talking to my dad, saying: "I would rather have this happening to lots of other people, not to her."

Later, when the surgeon asked how I was, I complained that I was very very hungry. 

Okay... so the food. Let us talk about that for a while...
Now, usually the food is fantastic here at Linksfield! I order from the chef special menu. The food really is divine. Of course I knew I had to drink soup, but uhm - the soup I got was a clear, watery colour, only a bit more orange-yellow, and it tasted exactly like beef stock or chicken stock.
It wasn't bad! But hello, I am hungry.

Just to give you an idea: It is 5 days since the pain. I haven't yet had anything to eat, only fluids, and I still didn't go to the bathroom.

At night time Mom came again. The sisters and she gave me a bath: I had to lie down and they took a cloth and soap and wiped me all over, then dried me, and then rubbed a special blood-circulating lotion onto my limbs and back. I did not care about the fact that I was being touched and lying naked on a bed. At some point you just don't care.

Anyways, so then it was Mom's turn to sleep in the chair next to my bed. The sisters brought her a blanket as well and draped it over her nicely. So sweet.

---> Something I found out after being discharged from hospital:
So I just came back to this post to add this in. Mom and I were talking about everything and she asked if I felt any pain during my stay in ICU. I told her that I think my brain tries to cancel out everything because I cannot remember too well. But yes, there were some painful parts. But, for most of the time I was just too tired, so I slept through everything.

She then said that, at some point, my blood pressure was EXTREMELY low. The lowest was 90 over 45, (or lower). It was so low that my doctor refused to give me pain meds. Every time I complained about pain, they would say: "Okay, we'll get something for you," and then they would inject something like saline. I did not even notice that. Just shows you how powerful the brain really is: to cancel out pain just because you THINK you are having pain medication.


What happened during surgery?

Well, when I was 3 days old I was operated on because I had a blocked intestine. Three months later they had to operate again as the scar tissue from the first operation grew over and between my intestines which blocked and strangled everything. The scar tissue had to be removed.
Now, 21 years later it was the same thing.

This wasn't a problem that could have been detected on an Xray. Neither is it a CF related problem, as this is a thing that could happen to anyone who was operated on in the past. It was a good thing the surgeon cut me open. Also, to quote him: "I have never seen an inside like yours in my entire life!" (And he is on the older side).

NO WONDER it took him 3.5 hours fix me! He literally had to move from the one point of my intestine all the way through to the other, cutting away the scar tissue wrapped around everything. He also removed my appendix, saying: "I don't want anyone to cut you open again." (He is so cool! So smart.)

He also warned me that it would be a while before I could eat, as one's intestines are very sensitive to surgery and are paralysed after such an operation.They need a while to work again.

My intestine story - The last resort: surgery. Day 4.

Here follows a journal of the past two weeks and the difficulties I went through. I will write each day as a new post for easy reading. To sum it up: I had to get an emergency operation because my intestines couldn't digest food. Here is what happened...

Thursday, 22 May

 I woke up, having vomited a lot during the night. I was weak and tired. During the day the doctor and surgeon visited a lot, but at 14:00 they told me that the only thing left, was to operate.

Now, I did not stress about the operation, as I like my sleep and I knew that the moment my eyes shut, they will be open again and the problem would, hopefully, be fixed.

Since I didn't get any fluids or food in me I was completely prepared to go into surgery.

By now my poor parents were also exhausted as they have to drive from Pretoria to Joburg each day. By the time the doctor gave the news, my dad was there to visit me. Mom had to stay at home with my little sister. 
My dad said that, when he phoned her about the surgery, she burst into tears. Shame, poor parents.

At 17:00 I wheeled into the preparation area where the anaesthetist talked to me and explained what would happen. My dad stood by until they asked him to leave and go to the waiting area.

They wheeled me into the operating room. Now this part I can remember clearly:
Typical CF - I get so many drips and they tissue a lot, and I know when that happens they are of no use. They especially tissue when the needle wasn't used for a while. So, as I have this horrible fear of being operated on while being "Awake" (don't EVER watch that movie...), I started off by giving them instructions: Please check the drip, it might have tissued. Just inject some saline so we can test if it burns.

I think they thought me very amusing, because I was so cautious. And obviously, they are not idiots, they would have done that as well. 
Luckily my drip didn't tissue and after the saline was injected, they injected a clear fluid that made my head spin. Wow... what a happy sensation!

They gave me oxygen which smelled like apricots, or peaches. It was so pleasant!
Then came the big syringe filled with the famous white fluid. They warned me that it would burn and sting, and as they injected it into my arm I could feel the burn. I started to weep, but everyone was so nice and comforting, and within seconds I was out.

3.5 Hours Later...

YES! It was a very long procedure - and with good reason! (My poor dad waited in the waiting room area the whole time.)
They wheeled me to ICU where my dad spent the night in a chair next to my bed. I remember how I woke up constantly, waving my hand so that he would hold it. And then I would fall alseep again.

My intestine story - Desperate. Day 3.

Here follows a journal of the past two weeks and the difficulties I went through. I will write each day as a new post for easy reading. To sum it up: I had to get an emergency operation because my intestines couldn't digest food. Here is what happened...

Wednesday, 21 May

Day Three: I did not sleep very well last night. I started to throw up. The pain wasn't too nice and I still couldn't go to the bathroom. My tummy and intestines were at halt. The doctor continued to give me pain medication, of which Tramal was one of them. By now I still hadn't eaten anything, barely drunk something and could only chew on ice, which caused some relief. The doctor and surgeon came to see me the morning and they went off. We still didn't know what was going on.

They also ordered more Xrays (yes, I lived at Xrays, basically), but this time I had to drink Gastrogravin. Now, for those of you unfamiliar, it is a dye that shows the paths more clearly on the Xrays. It also, as the name suggests, gives you a runny tummy, which I was now desperate to have.

Unfortunately the smell of the Gastrogravin was too strong and I almost vomited. They tried to feed it to me, but I just couldn't although I knew very well that it could save me lots of pain. I just couldn't. 

Back in my room I threw up again. The pain meds were not doing it for me anymore. The Tramal I received also caused lots of nausea. It was so bad that I came to a point where I sat in the visitor's chair with a pillow pressed on my tummy, while I was rocking back and forth and resting my head on my bed. I cried out loud and didn't care anymore. Usually I am a poised person. Not today!!

The nurses didn't know me like this. Everyone always knows I am cheerful and happy, I usually remind THEM about medication that should be given. I always am the first person to ask how they are. Not today!!

The nurses called my doctor. She too was frustrated with the situation and at some point didn't have comforting words for me. She only stroked my back as I rocked in pain. My medication was adjusted and I tried to sleep that night. The pain was better, but the nausea was horrible. I was tired an weak. I hadn't eaten since Monday. I didn't go to the bathroom since Monday.

The surgeon and my doctor decided that it could be galstones, kidney stones or an obstruction in my intestines, although the Xray doesn't show any blockages. I was left to sleep, but I believe my doctor did not get any sleep at all.

My intestine story - The trouble was now.... TROUBLE. Day 2.

Here follows a journal of the past two weeks and the difficulties I went through. I will write each day as a new post for easy reading. To sum it up: I had to get an emergency operation because my intestines couldn't digest food. Here is what happened...

Tuesday, 20 May

So as you know I was at the hospital earlier this morning during the dark hours and the doctor gave me Colo-Prep to drink to get my tummy going. 

I decided to stay home because I still had lots of pain. My dad and mum went off to work and I slept, but woke up with pain as the meds was getting worked out. I downed the Colo-Prep, but after an hour threw up everything. It was a very clear fluid, almost as if nothing happened inside me.

I called Mom in tears and insisted that we go to the hospital again. Now, I am not someone who moans about small things, or even big things. So for me to call her like this means that something really is wrong! Oh, the pain...

We returned to the hospital. This time there was a new doctor. She looked at the night's Xrays and quickly read about CF online - since not everyone knows everything about it. Her diagnosis was that maybe there is an obstruction. 

Meanwhile I also called my CF specialist in Johannesburg and told her everything. She told me that we should drive to her immediately and said that NO ONE may operate on me, whatsoever!

My mum and I grabbed only my nebuliser and a bottle of Creon and raced to Linksfield hospital. The pain was okay again since I got heavy meds, again. At the hospital I was booked in, a room already waiting for me. My doctor immediately ordered more Xrays and got a surgeon's opinion. Now, this surgeon IS AMAZING! He is one of the best in the country, and not trigger happy at all. He understands the complications of putting a CF under anaesthetics and knows that it should only be the last resort.

They ordered me not to eat or drink anything and I spent the night in Linksfield. We still didn't know what was wrong with me.

My intestine story - Trouble in my tummy! Day 1.

Here follows a journal of the past two weeks and the difficulties I went through. I will write each day as a new post for easy reading. To sum it up: I had to get an emergency operation because my intestines couldn't digest food. Here is what happened...

Monday, 19 May

As always I started my day getting up at 5am to nebulise until 5:30. Then I start to get ready for the day and leave the house at 6:30 to go to my work. I am now a teacher at Die Hoërskool Langenhoven. It is a high school with only students of an African culture. It has its challenges, but boy, do I LOVE my job!

At school I heated some chicken which we had 2 nights ago. I didn't heat it well enough but was to lazy to go back and reheat it.

During the day I felt fine. But later, at home, at about 15:00 I started to get cramps. I instantly thought it was the chicken and silently cursed myself for being so lazy.

I still went to netball practice at 18:00 and when I arrived home, I skyped with my brother from 19:45. While I was doing that, I was holding a hot water bottle over my tummy and intestinal area. The cramps were so bad and at 21:00 I decided to give up and sleep.

My mum was quite angry and said: I am NOT taking you to the hospital! (all in good humour, though. But I do get her point as we have been through something like this once before).

Unfortunately the pain was too bad and at 00:15 (Tuesday, 20 May) I woke up in tears. I went to my parents bedroom, offering to take myself to the hospital. And I just have to point out the humour: my dad grunting and saying: "Don't be silly! Your mom will take you." Haha Dad, easy to say that, ey!

Shame, so here Mom and I went to the emergency room. By now I was crying so bad. I didn't care what others thought. I was like, screw this! While waiting for the doctor, the nurse gave me heavy pain medication and by the time the doctor arrived I was weak, but okay. She did send me to Xrays where they only picked up a little fault: it looked as if there was a tiny almost-obstruction where food was stuck to the sides of my intestine. The doctor told me to drink Colo-Prep.... blegh! And then hope for the best. 

Always do your nebulising

A way outdated post:

I am not sure where I mentioned this, but I did mention somewhere, on my blog, that one of the reasons for me starting a blog was the fact that I have not always been too committed and dedicated when it came to looking after myself and doing what I am supposed to be doing. Therefore, by writing down my progress and posting it online where people could read it, I could force myself to start and take my health more seriously.

I am so proud to say that I have missed only 5 out of 28  nebulise sessions since I have been out of the hospital. Now I know, 5 out of 28 seems to be a lot. But if you knew me you would understand that missing only 5 is quite a massive improvement for me!
Before, I have missed about 4 out of 14 sessions (per week). Now it is almost half of that. This is because I had been extremely  busy with life and work and studies  and I haven't yet learned how to balance everything. The nebulise sessions I missed were usually the ones I had to do at night. I was always too tired after the long day where I had to work and study, so I went to bed without nebulising.

The funny thing is, though, that I am even more busy now than I was 4 weeks ago.
4 weeks ago I had one part time job and studies to do.
This week I started with a second full time job (teaching Technology, and Arts&Culture to Grade 9 and Grade 8's), and I have my part time job (calling parents and reminding them to pay school fees), as well as less time to study and do uni assignments.
But for some reason I am coping a lot easier now than I have before. Maybe it is because I work well under pressure? Or maybe it is because I have finally decided to be a responsible little CF and be thankful for my health. I could have had HIV 2 weeks ago, but God gave me a second chance.
I think maybe I am so grateful that I have decided to appreciate that which I have and take care of myself and my body.

Well, whatever my reason, I am working super hard on staying healthy and remembering to drink all my meds.