I thought I would take the time to be thankful for what I have, but also to pray for those who have it far worse than we do.
I am thankful for "healthy" lungs. Although I am still a bit sick with a bad LF due to the operation and anaesthetics, my lungs could have been far worse!
I am thankful for exercise: I am happy that I am able to exercise, and I want to remind myself that there are tons of other CFs and people out there who wish they could exercise as well.
I am thankful for our farm: Since the operation I have been staying on our farm with my brother. The clean air really makes a huge difference!
I am thankful for prayers: If you have read my previous posts, you will know that I was very dependant (and still am) on others prayers. This brings me to the actual reason for writing this post today...
Now... I am someone who always try to say thanks for what I have, whether it is materialistic or just my health and family. Sometimes I think one should say thank you more than one should ask. I also pray for the sick - in general.
But the people who I always specifically pray for, by name, are my fellow CF sufferers. Therefore I decided today that I want to create a new tab on my blog with a list of names of CFs who really need our prayers. And I want to start off with Vanessa Neveling:
Vanessa Neveling is also a fellow Cyster. At the moment it is not going too well with her. She has been in and out of hospital for the past 4 months and is on antibiotics constantly. Her life consists of receiving physio 3x per day, and doing nebs every 6 hours and saline every 4 hours.
Yesterday she received some pretty bad news, which is that she should now be on oxygen constantly. She was in tears.
I can only imagine how she must feel. And I think it is our duty, as fellow CFs, to pray for our Cysters in need. Vanessa could really use as many prayers as possible.
I just put myself in her shoes: If I imagine going to my doctor and she says that I should be taking oxygen for the rest of my life, permanently.... I have no words.
Therefore I would like to ask the readers that, if comfortable, to say a little prayer for Vanessa, and to also keep other CFs in their thoughts as well. I have experienced first hand how powerful prayer really is.
Spread the Love...
If you would like to add a fellow CF to my list of prayers, please use the contact-me form or the comment section below. Please provide as much detail as you feel comfortable with. It is always good to know what to pray for. ♥♥
(optional): You are welcome to send a facebook link, twitter link, instagram link, google+, or any other link where the readers may contact the person. A photo is welcome as well.
Please note that you should have this person's permission to post a contact link or photo, as not everyone feels comfortable to expose themselves so openly.
Remember to Breathe and Believe
xXx
Nina
Friday, 27 June 2014
Tuesday, 10 June 2014
Being Thankful - Part 2: A new belly button
So I know that I did put up a post about me being thankful for my family and doctors and friends, etc. It is a "typical" thankful list as it mentions family members and other loved ones.
Now, although it is not a Thursday, I would like to add something to this list.
If you read the previous post, you know that I went to the surgeon's office for a check up.
Now I was super scared and hesitant to look at my tummy because I did not know if I could process what I was going to see.
But at home I did look. And I did process it well. IN FACT, I was pleasantly surprised!
[Background detail] - If I did not mention this before, I will mention this now. I am SUPER self-concious. But I think all CFs will understand that. We are skinny, our nails do look funny and we are covered with marks and scars from drips and operations. Now one of my biggest physical "flaws", I feel, is the massive scar on my tummy.
It is a horizontal scar which is from my operation when I was 3 months old. Because of the quick mitosis babies have, my skin and scar tissue attached to parts inside my tummy, and now it looks like my skin is sewed to my insides.
I also have quite an ugly belly button. Also something I am super self concious of.
I have always been very aware of this, which made me very shy to go out in front of others wearing only a bikini. So last year, when I asked my doc if we could fix it, she said that the risk is too big because my lungs will damage if I get anaesthetics. (Of course, she is right.)
When I heard that I would be operated on for this whole intestine thing, I once again asked my doctor if we could fix it. She said that the chances of that is very slim and I should not get my hopes up. So I didn't.
But as I examined my vertical cut (which is over my horizontal cut - yes, my belly is crucified now), I noticed a little something different...
No, the doctor did not fix the horizontal scar. But he did give a new belly button!
Haha, in a way I feel a bit silly to post a post only about this topic. But I do feel that Mandi and Ronnie are right. We should be thankful for all the little things. And this, although very little, is actually a big thing. I am so thankful for this wonderful doctor who just decided to fix my belly button. I did not ask for it, and he didn't tell me anything. He just made this small gesture. And I wish he knew how much it really means to me.
I thank God for amazing people - especially my doctor and surgeon.
Thankful and Happy
Nina
xXx
xXx
My intestine story - The check-up
Today (06/09/2014) I went for my check up!
This was one of the quickest visits as the surgeon just took off the covering, examined it and said in an extremely pleased tone: "Looks good!"
And that is that.
He is so super cool! Haha, I like him a lot!
We just talked about my lifestyle for the next few weeks:
I may jog a bit, do arm exercises, but whenever I feel something in my tummy pulling, I should stop.
Sit-ups, push-ups (pft, as if I do THOSE) and netball (which I love) should only be pursued after 6-8 weeks. Sigh. Netball is the one thing I absolutely LOVE! But aw well.
Now it is time to get my LF up!
Breathe and Believe
xXx
Nina
This was one of the quickest visits as the surgeon just took off the covering, examined it and said in an extremely pleased tone: "Looks good!"
And that is that.
He is so super cool! Haha, I like him a lot!
We just talked about my lifestyle for the next few weeks:
I may jog a bit, do arm exercises, but whenever I feel something in my tummy pulling, I should stop.
Sit-ups, push-ups (pft, as if I do THOSE) and netball (which I love) should only be pursued after 6-8 weeks. Sigh. Netball is the one thing I absolutely LOVE! But aw well.
Now it is time to get my LF up!
Breathe and Believe
xXx
Nina
Monday, 9 June 2014
The (funny) effect of anaesthetics
I just HAD to do a post on this:
We all know how different people react after having had anaesthetics. There is a video on YouTube of a guy who sees his wife "for the first time". Go check it out. It is so sweet, but hilarious.
Anyway, so my reaction was as follows - and I will explain it just the way my dad told the story. He had to listen to all of this...
After being wheeled into my ICU private room, I firstly INSISTED that my dad should hold my hand. And every time he let go, I made whimpering noises and waved a weak hand in the air for him to take. This continued for 3 hours. Or so says he.
Then comes the part of our conversation. He said that I insisted on 5 things:
1. I wanted to go somewhere.
2. I wanted to eat 2 specific foods together.
3. I asked for 2 people, continuously.
4. I asked for one of our many pets.
5. I cried, wanting a certain antelope. (yes... an antelope...)
Dad says that, when I woke up I immediately called for him - in English - which is funny, because I am Afrikaans. When my dad answered that he was present, I started calling for my brother who lives on our little piece of farm land. (shame, my poor mother. I did not once ask for her...). So obviously I expressed my desire to go to the farm as well. I also mentioned that I missed my pet bird. Now this bird is a White Brow Sparrow-Weaver. A very unusual bird. But I did think of him a lot.
Food was also on my mind as I asked my dad to give me bacon and flapjacks.
And last but not least - the antelope. My brother and I will be buying Tsessebes later this year to breed with and maybe get an extra income. So at some point I randomly started whimpering again and said: "Dad, I want a Tsessebe!"
My dad, taking advantage of this situation to amuse himself, replied: "A big one, or a small one."
Apparently I actually gave it some thought, and then started sobbing: "A BIG one!"
So there we go. Dad can't stop talking about the Tsessebe conversation. He thinks it is very funny.
I also find it hilarious. My mother just rolls her eyes.
We all know how different people react after having had anaesthetics. There is a video on YouTube of a guy who sees his wife "for the first time". Go check it out. It is so sweet, but hilarious.
Anyway, so my reaction was as follows - and I will explain it just the way my dad told the story. He had to listen to all of this...
After being wheeled into my ICU private room, I firstly INSISTED that my dad should hold my hand. And every time he let go, I made whimpering noises and waved a weak hand in the air for him to take. This continued for 3 hours. Or so says he.
Then comes the part of our conversation. He said that I insisted on 5 things:
1. I wanted to go somewhere.
2. I wanted to eat 2 specific foods together.
3. I asked for 2 people, continuously.
4. I asked for one of our many pets.
5. I cried, wanting a certain antelope. (yes... an antelope...)
Dad says that, when I woke up I immediately called for him - in English - which is funny, because I am Afrikaans. When my dad answered that he was present, I started calling for my brother who lives on our little piece of farm land. (shame, my poor mother. I did not once ask for her...). So obviously I expressed my desire to go to the farm as well. I also mentioned that I missed my pet bird. Now this bird is a White Brow Sparrow-Weaver. A very unusual bird. But I did think of him a lot.
Food was also on my mind as I asked my dad to give me bacon and flapjacks.
And last but not least - the antelope. My brother and I will be buying Tsessebes later this year to breed with and maybe get an extra income. So at some point I randomly started whimpering again and said: "Dad, I want a Tsessebe!"
My dad, taking advantage of this situation to amuse himself, replied: "A big one, or a small one."
Apparently I actually gave it some thought, and then started sobbing: "A BIG one!"
So there we go. Dad can't stop talking about the Tsessebe conversation. He thinks it is very funny.
I also find it hilarious. My mother just rolls her eyes.
Sunday, 8 June 2014
Being Thankful
So I am reading Mandi and Ronnie's blog, and they have a "Thankful Thursday" post they do each week.
You can find their blog here: http://runsickboyrun.blogspot.com/2014/06/thankful-thursday-voice-honey.html
This got me thinking about my own life and things I am thankful for. If you haven't read my blog recently, please feel free to read the past 2 week's posts about a massive and very sudden operation I had.
*My amazing doctor whom I love so much! She is the best in the whole world and so supportive and smart and wonderful. I wish I could express how much she means to me. Also my physiotherapist who is not just a physio, but someone I love dearly as well.
* My wonderful parents who stood by me during the past 3 weeks, It was not only tough on me, but I think even harder on them. Later my dad admitted to me how many sleepless nights he had. I feel bad putting them through all that, but it is something that is out of my hands.
*My wonderful siblings who support me so much and who have to listen to me cough continuously. As I child I think I coughed them awake even. They never complain. In fact, they actually annoy me because they keep on nagging that I should exercise :P
What a lovely bunch.
*My friends who support me and who prayed during this hard time.
*My friends' friends and people I don't even know who prayed for me.
*Everyone who sent (and are still sending) gifts and flowers and yummy things.
*Our wonderful Lord who heard every single prayer and who uses me to show to others how almighty He is. He is our Healer, our Shoulder, our Rock, our Pillar, our Strength, our Everything.
Breathe and Believe
Nina
xXx
You can find their blog here: http://runsickboyrun.blogspot.com/2014/06/thankful-thursday-voice-honey.html
This got me thinking about my own life and things I am thankful for. If you haven't read my blog recently, please feel free to read the past 2 week's posts about a massive and very sudden operation I had.
*My amazing doctor whom I love so much! She is the best in the whole world and so supportive and smart and wonderful. I wish I could express how much she means to me. Also my physiotherapist who is not just a physio, but someone I love dearly as well.
* My wonderful parents who stood by me during the past 3 weeks, It was not only tough on me, but I think even harder on them. Later my dad admitted to me how many sleepless nights he had. I feel bad putting them through all that, but it is something that is out of my hands.
*My wonderful siblings who support me so much and who have to listen to me cough continuously. As I child I think I coughed them awake even. They never complain. In fact, they actually annoy me because they keep on nagging that I should exercise :P
What a lovely bunch.
*My friends who support me and who prayed during this hard time.
*My friends' friends and people I don't even know who prayed for me.
*Everyone who sent (and are still sending) gifts and flowers and yummy things.
*Our wonderful Lord who heard every single prayer and who uses me to show to others how almighty He is. He is our Healer, our Shoulder, our Rock, our Pillar, our Strength, our Everything.
Breathe and Believe
Nina
xXx
Thursday, 5 June 2014
My intestine story - LF, Weight and Going home. Day 18.
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, 5 June
Today I am going home!
What a hectic 2 weeks these were. I have lost so much weight and lung function and now I struggle to get it back up again because the cut on my tummy prohibits me from coughing and eating too much. But I will get there!
My LF now is 56. My weight is 58.1kg (which I thought would have been much, much worse).
Now I have to start with exercises to build muscle and burn fat. The better my weight, the better my LF.
Doctor said that she is happy and all is fine, but she did prescribe an oral antibiotic to keep on with the lung treatment.
I am booked of till 30 June! Mmmmm, what to do, what to do... I have 2 months of nothingness :D
Before I get too excited - I should use this off time to heal. Although my pain is gone, I still have some hard work ahead of me in terms of getting my LF up.
It is quite late and I want to go to bed. Speaking of which - my room is decorated with purple and pink helium balloons. There are flowers and gift bags everywhere. It is amazing. I will post some photos tomorrow.
I thank God for all his power and greatness. He is the Great Healer. Amen.
Today I am going home!
What a hectic 2 weeks these were. I have lost so much weight and lung function and now I struggle to get it back up again because the cut on my tummy prohibits me from coughing and eating too much. But I will get there!
My LF now is 56. My weight is 58.1kg (which I thought would have been much, much worse).
Now I have to start with exercises to build muscle and burn fat. The better my weight, the better my LF.
Doctor said that she is happy and all is fine, but she did prescribe an oral antibiotic to keep on with the lung treatment.
I am booked of till 30 June! Mmmmm, what to do, what to do... I have 2 months of nothingness :D
Before I get too excited - I should use this off time to heal. Although my pain is gone, I still have some hard work ahead of me in terms of getting my LF up.
It is quite late and I want to go to bed. Speaking of which - my room is decorated with purple and pink helium balloons. There are flowers and gift bags everywhere. It is amazing. I will post some photos tomorrow.
I thank God for all his power and greatness. He is the Great Healer. Amen.
My intestine story - Less blood in sputum. Day 17.
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, 4 June
Today there was much less (to nothing) blood in my mucus. I have not yet received back the test results of why this happened. Doctor doesn't seem worried. So everything is fine!
Before getting on to my food for the day, let me first give good news: Doc said I can go home tomorrow! (Typically me I asked if it would be possible for me to go home on Friday, depending on what the menu is for Friday.)
She finds it hilarious. She doesn't have a problem with it - my doctor is freaken amazing. I love her sooooo much!!
Onwards to one of my best friends - Food.
Breakfast:
My typical breakfast! As always.
Dinner:
Coriander and oats crusted chicken breast
Boiled parsley potatoes
THE BEST CREAMED SPINACH EVER!
Side salad
Tinned Pears
And with this, I end this post.
Today there was much less (to nothing) blood in my mucus. I have not yet received back the test results of why this happened. Doctor doesn't seem worried. So everything is fine!
Before getting on to my food for the day, let me first give good news: Doc said I can go home tomorrow! (Typically me I asked if it would be possible for me to go home on Friday, depending on what the menu is for Friday.)
She finds it hilarious. She doesn't have a problem with it - my doctor is freaken amazing. I love her sooooo much!!
Onwards to one of my best friends - Food.
Breakfast:
My typical breakfast! As always.
 |
| This time I ordered fish cakes as well. They were good! |
Lunch:
One of my faves on the menu:
Soup: Vegetable and something delicious I have no idea what it is.
Chicken Escalope
Boiled baby potatoes
Veggies
Jelly and Custard
SNACK: A Caprese salad. Tomato, mozzarella and basil with fresh baguettes, sliced.
Dinner:
Coriander and oats crusted chicken breast
Boiled parsley potatoes
THE BEST CREAMED SPINACH EVER!
Side salad
Tinned Pears
And with this, I end this post.
Wednesday, 4 June 2014
My intestine story - Blood in mucus. Day 16.
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, 3 June
At first I though that today there would not be too much to report on. But this morning when I had a usual coughing fit, I saw that I had some blood in my mucus.
>CFs, have you experienced this as well?<
This has happened to me in the past. I have told that reasons may be:
The doctor said that I might go home on Thursday and Friday.
At first I though that today there would not be too much to report on. But this morning when I had a usual coughing fit, I saw that I had some blood in my mucus.
>CFs, have you experienced this as well?<
This has happened to me in the past. I have told that reasons may be:
- 5% Saline may be too strong
- If you have sinusitis, it could cause some blood in the sputum. Don't know why.
- Heavy coughing may lead to a little, mini vein popping, which is okay and not too bad.
- There might an infection of some kind.
My doc didn't look too worried and just said that we will send a sputum to make sure that there are not some new bugs in my lungs.
Overall my mucus varies from being thick and green, to a lot but thin and yellow, to almost nothing. It varies randomly and there is no pattern. At one point I think I am okay, and the next moment out comes this green gunk.
Furtermore, I will say that I have taken another step forward and now I am ordering even more food.
The doctor said that I might go home on Thursday and Friday.
Monday, 2 June 2014
My intestine story - Worries are over! Let's eat! - Day 15
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, 2 June
Now that I am healthy and all good (except for my lungs which need the antibiotics via drip), I will dedicate the rest of my posts to some of the most amazing meals that I have ever tasted in my life. I want to add some photos as well!
Today was "Day 2" on the Chef Special Menu.
My breakfast:
This is what I usually order. It is a list of foods which you can tick. I usually compile the following:
Muesli + yogurt
Fruit juice
2 sweetcorn and chive fritters
2 poached eggs
1/2 tomato, grilled, with basil pesto
LOTS of bacon
toast
My Lunch:
As the chef special did not interest me at all, I decided to, once again, tick the boxes and compile my own lunch. This is what I usually order in this case:
small soup of the day
whole baby potatoes / mash
grilled chicken escalope (otherwise known as freaken deliciously tender chicken breast grilled to perfection with various spices)
veggies of the day: stirfry carrots, onion and cabbage
Jelly and custard
My Dinner:
I ordered the chef special, as well as a self-compiled dinner as dinner is served at 5pm, and I am up until 1am. It is a hospital thing, I guess, not being able to sleep.
slow cooked roast beef stew
mash
veggies of the night: oven roasted veggies
CHEF SPECIAL: CHEESE, NUTS, BILTONG AND BISCUIT PLATTER! woop-woop! Celebration, baby!
Tinned pears for dessert
Hopefully I will remember to take pictures of tomorrows food.
Now that the worst is over, I'd like to give a shout out to our Lord for being so amazing and for helping me through this tough time. I want to thank him for keeping me and my family and friends strong. Our God really is an awesome God.
Stay awesome, Readers!
Breathe and Believe
Nina
xXx
Now that I am healthy and all good (except for my lungs which need the antibiotics via drip), I will dedicate the rest of my posts to some of the most amazing meals that I have ever tasted in my life. I want to add some photos as well!
Today was "Day 2" on the Chef Special Menu.
My breakfast:
This is what I usually order. It is a list of foods which you can tick. I usually compile the following:
 |
| A usual breakfast (just add another fritter) |
Muesli + yogurt
Fruit juice
2 sweetcorn and chive fritters
2 poached eggs
1/2 tomato, grilled, with basil pesto
LOTS of bacon
toast
My Lunch:
As the chef special did not interest me at all, I decided to, once again, tick the boxes and compile my own lunch. This is what I usually order in this case:
small soup of the day
whole baby potatoes / mash
grilled chicken escalope (otherwise known as freaken deliciously tender chicken breast grilled to perfection with various spices)
veggies of the day: stirfry carrots, onion and cabbage
Jelly and custard
My Dinner:
I ordered the chef special, as well as a self-compiled dinner as dinner is served at 5pm, and I am up until 1am. It is a hospital thing, I guess, not being able to sleep.
slow cooked roast beef stew
mash
veggies of the night: oven roasted veggies
CHEF SPECIAL: CHEESE, NUTS, BILTONG AND BISCUIT PLATTER! woop-woop! Celebration, baby!
Tinned pears for dessert
 |
| THE most AMAZING thing, ever! CHEESE, BILTONG, NUTS AND BISCUIT PLATTER Well done to the Netcare kitchen staff. You know how to treat your patients :) |
Hopefully I will remember to take pictures of tomorrows food.
Now that the worst is over, I'd like to give a shout out to our Lord for being so amazing and for helping me through this tough time. I want to thank him for keeping me and my family and friends strong. Our God really is an awesome God.
Stay awesome, Readers!
Breathe and Believe
Nina
xXx
My intestine story - Finally seeing my sister... Tears. Day 14.
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, 1 June
Starting off with my fave subject: Food. Today I could eat basically everything, but not too much proteins and fats. I have to chew everything finely and shouldn't overdo it. My tummy was working almost 100% now, so it was okay to eat more food.
More good news: I got to dissolve that Movicol crap in a 500ml orange juice. GENIUS! You don't taste anything. If ever there is a question: What to dilute movicol in to take away the taste? Answer: Orange Juice! The product I drank was "Sir Fruit". Apparently you don't get it everywhere, but I guess any juice will do. I diluted a sachet in 500ml instead of 125ml of liquid. Doc said I could use more water, just not less than the prescribed volume.
The best part of my day, however, was when I got visitors. My mom and dad said that Gran was coming along. And yes! Here she was, peeking around my door! I immediately started talking and babbling, being in a very good mood because of the fact that I was now almost completely healthy. Then I heard a distinctive "Meow" sound (some personal joke between me and my sister and dad), and around the corner popped her head!
I was so shocked and taken aback and suddenly burst into tears, covering my face in my hands. My sister came in and I heard her moving around the bed towards me. We embraced for such long while and she also started sobbing. My dad stood up and fled towards the bathroom. (To pee? Maybe... or maybe men just don't cry... wink wink.)
After the embracing I looked up at her, with my first words being: "You suck, why did you stay away for so long??" Then the embracing and water-works started over again. When we finally parted I saw my grandmother and mom with redish eyes, all teary.
The rest of the day was amazing. We went down to the café, ordered delicious food (the Café Mocha - droooool! Best ever - @Netcafé), and mom even got me new flowers!
In the evening I got a visit from another friend and we also had an hour and a half long chit-chat.
The movicol works. My tummy works. My lungs are getting better. My legs are now climbing stairs with ease.
God is Good!
Starting off with my fave subject: Food. Today I could eat basically everything, but not too much proteins and fats. I have to chew everything finely and shouldn't overdo it. My tummy was working almost 100% now, so it was okay to eat more food.
More good news: I got to dissolve that Movicol crap in a 500ml orange juice. GENIUS! You don't taste anything. If ever there is a question: What to dilute movicol in to take away the taste? Answer: Orange Juice! The product I drank was "Sir Fruit". Apparently you don't get it everywhere, but I guess any juice will do. I diluted a sachet in 500ml instead of 125ml of liquid. Doc said I could use more water, just not less than the prescribed volume.
The best part of my day, however, was when I got visitors. My mom and dad said that Gran was coming along. And yes! Here she was, peeking around my door! I immediately started talking and babbling, being in a very good mood because of the fact that I was now almost completely healthy. Then I heard a distinctive "Meow" sound (some personal joke between me and my sister and dad), and around the corner popped her head!
I was so shocked and taken aback and suddenly burst into tears, covering my face in my hands. My sister came in and I heard her moving around the bed towards me. We embraced for such long while and she also started sobbing. My dad stood up and fled towards the bathroom. (To pee? Maybe... or maybe men just don't cry... wink wink.)
After the embracing I looked up at her, with my first words being: "You suck, why did you stay away for so long??" Then the embracing and water-works started over again. When we finally parted I saw my grandmother and mom with redish eyes, all teary.
The rest of the day was amazing. We went down to the café, ordered delicious food (the Café Mocha - droooool! Best ever - @Netcafé), and mom even got me new flowers!
In the evening I got a visit from another friend and we also had an hour and a half long chit-chat.
The movicol works. My tummy works. My lungs are getting better. My legs are now climbing stairs with ease.
God is Good!
My intestine story - Progress. Day 13.
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, 31 May
I wish there was more to say than what I will be posting now.
Basically all just went well today. I had physio and walked some stairs. My lungs are slowly getting better. My tummy is very well. I am happy and satisfied.
I do miss my brother and sister a lot. Especially my younger sister. She got so upset with everything that happened. She didn't even come to visit once. My mom says she is like a zombie in the house and she is not doing well. She is very teary.
It must be tough. After all - she is only 12.
In other news: I am trying my best to motivate my tummy to work 100% properly. It is almost time for that yummy platter! :D
I wish there was more to say than what I will be posting now.
Basically all just went well today. I had physio and walked some stairs. My lungs are slowly getting better. My tummy is very well. I am happy and satisfied.
I do miss my brother and sister a lot. Especially my younger sister. She got so upset with everything that happened. She didn't even come to visit once. My mom says she is like a zombie in the house and she is not doing well. She is very teary.
It must be tough. After all - she is only 12.
In other news: I am trying my best to motivate my tummy to work 100% properly. It is almost time for that yummy platter! :D
My intestine story - Removing the tube and starting over. Day 12.
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, 30 May
Now that we knew everything was fine and that my intestines just needed more time to work, we did not have any stress. I had to start with soups and yoghurt again, but luckily it was the good, creamy soup, not the watery beef-stock kind.
Doc removed the tube early the next morning. Doc also wanted me to drink Movicol. It is a sachet that you mix in 125ml of water. The taste is horrendous!!
For those of you that ever had some condition where you were dehydrated, you would know that you drink that Re-Hydrate crap that contains electrolytes and stuff. The taste is horrible! The water is all thick and slimy. The taste is super salty and they try to sweeten it with whatever, which makes it a slimy, salty, sweet tasting drink. Whenever I think about that taste it comes and sits in my throat. Gag.
The Movicol tastes EXACTLY like that, only with a lemon flavour. I was open minded and mixed everything together. I took a huge sip and almost threw up again. The rest of the drink was poured down the drain. Euw.
I told Doc that there is no way I can drink it. She suggested I mix it with something nice. Tomorrow I will try it with tea. Hope it will work!
Now that we knew everything was fine and that my intestines just needed more time to work, we did not have any stress. I had to start with soups and yoghurt again, but luckily it was the good, creamy soup, not the watery beef-stock kind.
Doc removed the tube early the next morning. Doc also wanted me to drink Movicol. It is a sachet that you mix in 125ml of water. The taste is horrendous!!
For those of you that ever had some condition where you were dehydrated, you would know that you drink that Re-Hydrate crap that contains electrolytes and stuff. The taste is horrible! The water is all thick and slimy. The taste is super salty and they try to sweeten it with whatever, which makes it a slimy, salty, sweet tasting drink. Whenever I think about that taste it comes and sits in my throat. Gag.
The Movicol tastes EXACTLY like that, only with a lemon flavour. I was open minded and mixed everything together. I took a huge sip and almost threw up again. The rest of the drink was poured down the drain. Euw.
I told Doc that there is no way I can drink it. She suggested I mix it with something nice. Tomorrow I will try it with tea. Hope it will work!
My intestine story - More nausea, throwing up and inserting a tube down my nose - hell on earth. Day 11.
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, 29 May
I threw up 4 times from Wednesday night to Thursday morning. I was still a bit bloated, felt nauseas but hungry at the same time.
Last night the doctor stopped all food and water until she could see me the next day.
So she, as always, came very early. I told her about my nausea and STILL, after exactly a week after surgery, not being able to go to the bathroom.
The doctor gave me an enema first thing when she got here. Although she kept on warning that it might be sore and uncomfortable, I didn't find it weird or funny at all. Maybe I was just happy about the relief. The enema did work in minutes, but not as well as I had hoped.
One of my best friends came to visit as well. We had SO much fun and I can honestly say that laughter really is the best medicine. It makes you feel happy and takes away pain. I have heard about research and studies done where they list the benefits of a good laughing session, but today I have experienced it first hand.
Although the morning was okay, the day got worse and my nausea was very bad. The surgeon then suggested for a tube to be stuck into my stomach. Crap.
I can HONESTLY say that, out of everything that I have experienced, the tube definitely was the worst! When they inserted the tube the first time, I was asleep. So I didn't feel anything at all. NOW I was wide awake: no sedation, no pain meds, nothing. I was aware of every torturing sensation.
The nurse started sticking the tube up my nose. That was okay. Then it hit that area that makes your eyes water. That was fine. I thought: okay, maybe this will not be so bad...
Then it started going down my throat. I made whimpering noises in protest, but forced myself to stay still. Then the tube hit that gag reflex and suddenly I exploded into a vomiting seizure (what a gross description... you are welcome).
I think all the food that I have eaten since, well, I started eating, was now coming out. I have never vomited so much in my entire life. My mom and doctor held my hand and a bucket. It was excruciating.
The tube did help with various things though. It relieved me from that bloated feeling. It emptied out all the crap from my tummy. And it also helped me to drink the Gastrograffin as it was needed to see what was wrong with me.
The night I basically got wheeled to and from Xrays. The gastrograffin was pumped into my stomach through the tube and in the end it showed that there wasn't anything wrong. There was no blockage and the surgeon did an excellent job.
Therefore, to sum it all up: My intestines are just damn lazy to start working!
I threw up 4 times from Wednesday night to Thursday morning. I was still a bit bloated, felt nauseas but hungry at the same time.
Last night the doctor stopped all food and water until she could see me the next day.
So she, as always, came very early. I told her about my nausea and STILL, after exactly a week after surgery, not being able to go to the bathroom.
The doctor gave me an enema first thing when she got here. Although she kept on warning that it might be sore and uncomfortable, I didn't find it weird or funny at all. Maybe I was just happy about the relief. The enema did work in minutes, but not as well as I had hoped.
One of my best friends came to visit as well. We had SO much fun and I can honestly say that laughter really is the best medicine. It makes you feel happy and takes away pain. I have heard about research and studies done where they list the benefits of a good laughing session, but today I have experienced it first hand.
Although the morning was okay, the day got worse and my nausea was very bad. The surgeon then suggested for a tube to be stuck into my stomach. Crap.
I can HONESTLY say that, out of everything that I have experienced, the tube definitely was the worst! When they inserted the tube the first time, I was asleep. So I didn't feel anything at all. NOW I was wide awake: no sedation, no pain meds, nothing. I was aware of every torturing sensation.
The nurse started sticking the tube up my nose. That was okay. Then it hit that area that makes your eyes water. That was fine. I thought: okay, maybe this will not be so bad...
Then it started going down my throat. I made whimpering noises in protest, but forced myself to stay still. Then the tube hit that gag reflex and suddenly I exploded into a vomiting seizure (what a gross description... you are welcome).
I think all the food that I have eaten since, well, I started eating, was now coming out. I have never vomited so much in my entire life. My mom and doctor held my hand and a bucket. It was excruciating.
The tube did help with various things though. It relieved me from that bloated feeling. It emptied out all the crap from my tummy. And it also helped me to drink the Gastrograffin as it was needed to see what was wrong with me.
The night I basically got wheeled to and from Xrays. The gastrograffin was pumped into my stomach through the tube and in the end it showed that there wasn't anything wrong. There was no blockage and the surgeon did an excellent job.
Therefore, to sum it all up: My intestines are just damn lazy to start working!
Saturday, 31 May 2014
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?
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.
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!
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!
Friday, 30 May 2014
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.
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.
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.
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.
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.
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.
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.
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.
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