Today was a big day for me, in fact a very beeeeeeeg day indeed. It wasn't just that it was clinic day but also the day to talk to my doctor about 'where to now'. I emailed my medical aid a few days ago to find out whether my exclusion period is over and yesterday I received confirmation that it is. YAHHHH!!!!!!! My start date with them was 1st June 2013 and according to their mail, exclusion was over on 3rd June 2014. When I started the year I thought to myself, how will I ever get through this next year and now here we are and it is over and done with.
So as you know I haven't been feeling great this last month or so. Having 10 days of Ciprobay help for a bit but I'm still not doing well...sigh... Going to clinic I was both nervous and excited. Nervous because I knew my weight would be down again and possibly my lung function, and excited because I feel I am one step closer to getting some new lungs.
So now that I'm officially on medical aid I have to say 'goodbye' to Charlotte Maxeke. It is amazing that my first appointment to the clinic there, my dad wheeled me in in a wheelchair, my lung function was 17% and I weighed 45 kg. A year and a half later and I weigh 52 kg, my lung function is 30% and oxygen levels at 85%. I am blessed...I have made new friends, awesome friends and met the wonderful caring staff of ward 496. The friends I will keep forever, of that I am sure... It's not quite goodbye for ever as until I am actually listed, I can continue to attend the clinic. My next IV's are going to be at Milpark Hospital which will hopefully mean admittance on 17th June and while I am in I will meet the transplant team and undergo a whole load of tests. The team meet once a quarter and apparently have just recently had a meeting, so I will have to wait a couple of months before hearing their decision.
So there we are, the ball is rolling in a new direction and hopefully I will knock their socks off and make that list.
Wednesday, June 4, 2014
Monday, May 5, 2014
Clinic update - May 2014
So today has been 6 weeks since I was discharged from Hospital, which mean it was my follow up appointment.
Mom and I have now decided that we take the old JHB road to JHB because these e-tolls are ridiculous. And after our last experience of being in traffic for over 4 hours, we departed from the Hakka (Home), just after 5am, ( which means I was up and awake at 3:45, to be able to get all my nebs done in time before leaving).We arrived in JHB at about 7:30am.
First things first, Lung Function...the dreaded lung function. I wasn't sure about how would do as I have been struggling lately.
When I arrived I wasn't the first person, Michael had beat me to it. So we both sat, waiting and chatted. When we had gone in to do our Lung Functions, Andriesa arrived, and shortly after that Louis decided to grace us with his presence. Smiles, hugs and hellos all round. It was great to have everyone together again, only one person Missing..... Mr Juan West. Jip, late as always. Lol.
We all waited for one another to finish before heading up to the ward. My Lung Functiona, despite me more more chesty and productive is still the same, 31% .
We then all had physio, had to get 3 samples out so they can test the secretions to see if we have picked up any new bugs. It felt like physio went on forever.
Eventually Juan and his dad arrived, so it was a big reunion again.
Andriesa's lung function has dropped slightly, but she does have the flu at the moment.
Michaels and Juan have also dropped by a few percent, but luckily nothing to be too concerned about.
Louis lung function has increased slightly, which is great. I think it's because of the cycling he has been doing.
Weight wise, all of them have picked up a couple of Kgs... Yay for them! But I have lost weight (boo), despite me eating so much and having shakes. My kangaroo (the machine I use to do night feeds) packed up 3 weeks ago, and I haven't been able to get another one. It just shows how dependant I am on the feeds to keep my weight up. I have spoken to the head dietician at JHB and we are trying to organise a new machine and better feeds. She was in shock when I told her that I make up ensure at night. She told me that she NEVER gives ensure for night feeds, she uses other higher calorie feeds that are already mixed. So hopefully I will pick up all the weight that I have lost.
I went in to see my Doctor, it was a quick visit.
My stats are : my O2 levels on room air are 88%, which is down from my 93%, but it's still in the "acceptable" category.
My vitamin A levels are low, so I have been advised to start taking a double dose weekly.
Other than that, I am doing alright. The doctor just said that I must watch myself and if I feel sick enough for admission, I must phone and organise.
It was great seeing my friends again. We are really close, we understand each other and can relate.
I wish them all the best for this next month. I hope all goes well.
My next clinic date is the 4th of June.
Lots of Love
Stay Fabulous! <3
Mom and I have now decided that we take the old JHB road to JHB because these e-tolls are ridiculous. And after our last experience of being in traffic for over 4 hours, we departed from the Hakka (Home), just after 5am, ( which means I was up and awake at 3:45, to be able to get all my nebs done in time before leaving).We arrived in JHB at about 7:30am.
First things first, Lung Function...the dreaded lung function. I wasn't sure about how would do as I have been struggling lately.
When I arrived I wasn't the first person, Michael had beat me to it. So we both sat, waiting and chatted. When we had gone in to do our Lung Functions, Andriesa arrived, and shortly after that Louis decided to grace us with his presence. Smiles, hugs and hellos all round. It was great to have everyone together again, only one person Missing..... Mr Juan West. Jip, late as always. Lol.
We all waited for one another to finish before heading up to the ward. My Lung Functiona, despite me more more chesty and productive is still the same, 31% .
We then all had physio, had to get 3 samples out so they can test the secretions to see if we have picked up any new bugs. It felt like physio went on forever.
Eventually Juan and his dad arrived, so it was a big reunion again.
Andriesa's lung function has dropped slightly, but she does have the flu at the moment.
Michaels and Juan have also dropped by a few percent, but luckily nothing to be too concerned about.
Louis lung function has increased slightly, which is great. I think it's because of the cycling he has been doing.
Weight wise, all of them have picked up a couple of Kgs... Yay for them! But I have lost weight (boo), despite me eating so much and having shakes. My kangaroo (the machine I use to do night feeds) packed up 3 weeks ago, and I haven't been able to get another one. It just shows how dependant I am on the feeds to keep my weight up. I have spoken to the head dietician at JHB and we are trying to organise a new machine and better feeds. She was in shock when I told her that I make up ensure at night. She told me that she NEVER gives ensure for night feeds, she uses other higher calorie feeds that are already mixed. So hopefully I will pick up all the weight that I have lost.
I went in to see my Doctor, it was a quick visit.
My stats are : my O2 levels on room air are 88%, which is down from my 93%, but it's still in the "acceptable" category.
My vitamin A levels are low, so I have been advised to start taking a double dose weekly.
Other than that, I am doing alright. The doctor just said that I must watch myself and if I feel sick enough for admission, I must phone and organise.
It was great seeing my friends again. We are really close, we understand each other and can relate.
I wish them all the best for this next month. I hope all goes well.
My next clinic date is the 4th of June.
Lots of Love
Stay Fabulous! <3
Sunday, March 30, 2014
Time spent with my Children
It is when I have recently come home from hospital and I am feeling at my best for a while that I get to spend the most time with my children. They bring me so much joy and I am at my happiest when I am able to work with them or do new things with them that I may not have been able to do in a while.
It doesn't matter how much I may enjoy being with them, grooming them, working them and riding them, there is no way I can adequately describe what it feels like not to have the energy or the inclination to be around them when I am not well. Trying to saddle up a horse correctly takes so much energy that I am then too tired to even have a leg up to get on and take a ride. So while I can and am able I use the opportunity to my advantage.
Today I managed to spend time with Switch who is still carrying a lot of pregnancy weight. She was very good and let me do so much with her. I measured her to see how much she weighs now...she is 380 kg and she is our tallest horse at 15 hands. I managed to put the halter on her, and then the numnah and saddle too. She looks so fat and yet the area that the saddle is strapped around her with the girth is quite small. I used Zorro's saddle today and I was able to tighten it a lot smaller on her than on him. All the while she just stood obediently and let me work with her. To hoist myself on top of her I needed to use a step,well not a step, but an old car tyre, but she didn't mind. To sit on her was the best feeling I have had in a while. I felt so tall and all the while she just kept her stance. We walked a bit around the ring but not a lot. It is the first time since she has been with us that I have done this as we first had to let her get used to us and then with her being pregnant we decided to rather earn her trust than work her.
After lunch I spent time with Angel, my dad's horse. I didn't use a saddle as I was too lazy to go and fetch it. I just sat on a numnah. She too was very good and I had a nice little trot with her around the ring. She has picked up quite a bit of weight over summer with too much delicious grazing to eat so she really needs us to ride her more often.
I am going to try my best to be with the horses every day this week...it doesn't just help them but it helps me too. How lucky am I!!!!
It doesn't matter how much I may enjoy being with them, grooming them, working them and riding them, there is no way I can adequately describe what it feels like not to have the energy or the inclination to be around them when I am not well. Trying to saddle up a horse correctly takes so much energy that I am then too tired to even have a leg up to get on and take a ride. So while I can and am able I use the opportunity to my advantage.
Today I managed to spend time with Switch who is still carrying a lot of pregnancy weight. She was very good and let me do so much with her. I measured her to see how much she weighs now...she is 380 kg and she is our tallest horse at 15 hands. I managed to put the halter on her, and then the numnah and saddle too. She looks so fat and yet the area that the saddle is strapped around her with the girth is quite small. I used Zorro's saddle today and I was able to tighten it a lot smaller on her than on him. All the while she just stood obediently and let me work with her. To hoist myself on top of her I needed to use a step,well not a step, but an old car tyre, but she didn't mind. To sit on her was the best feeling I have had in a while. I felt so tall and all the while she just kept her stance. We walked a bit around the ring but not a lot. It is the first time since she has been with us that I have done this as we first had to let her get used to us and then with her being pregnant we decided to rather earn her trust than work her.
After lunch I spent time with Angel, my dad's horse. I didn't use a saddle as I was too lazy to go and fetch it. I just sat on a numnah. She too was very good and I had a nice little trot with her around the ring. She has picked up quite a bit of weight over summer with too much delicious grazing to eat so she really needs us to ride her more often.
I am going to try my best to be with the horses every day this week...it doesn't just help them but it helps me too. How lucky am I!!!!
Thursday, March 27, 2014
Home
At last I am home again with all that is familiar around me.
To finally make that bend in the road and turn up our driveway gives me an exciting feeling of expectancy.
We arrived home late yesterday afternoon and to first have Barney, my dog jumping up and down with excitement and then walk up to see Zorro and August waiting for their afternoon snack, made me realise just how much I miss being home.
When in hospital it is nice to have friends with me who can relate to me and all I go through on a daily basis, as well as having totally awesome staff who go above and beyond their duties for us...just because they can and care, but I do miss home.
I am disappointed that this stay didn't produce the 'oomph' that I was hoping for but at least I'm not worse than when I went in.
My PEG was looked at and it was decided to leave it as is and not fit a new one. The doctor said to me that for it having been in for almost 2 years it is in really good condition still so there was no need to replace it. She gave me some good tips on keeping it in good working order so I am grateful for all her advise.
My sugar readings were absolutely fine with the feeds the hospital dietitians gave me so their was no reason to start me on insulin. To be honest I am glad as I don't really want CFRD to develop at this stage of my life. I will continue to do random testing though as I know it is important at my age to keep an eye on things.
The dreaded lung function test on release is 33%...still good compared to what it was. Sadly I only picked up 400g, which means my weight is now 54.8kg...also better than before but not moving up quickly enough.
Today I cleaned up in my flat, a job that does not hold any enthusiasm for me but it had to be done. Even with it being closed up and no one using it, the dust bkew in under the doors and made everything dirty.
So with suitcases unpacked and clothes away, for once, I am ready for tomorrow and looking forward to our holiday next month.
To finally make that bend in the road and turn up our driveway gives me an exciting feeling of expectancy.
We arrived home late yesterday afternoon and to first have Barney, my dog jumping up and down with excitement and then walk up to see Zorro and August waiting for their afternoon snack, made me realise just how much I miss being home.
When in hospital it is nice to have friends with me who can relate to me and all I go through on a daily basis, as well as having totally awesome staff who go above and beyond their duties for us...just because they can and care, but I do miss home.
I am disappointed that this stay didn't produce the 'oomph' that I was hoping for but at least I'm not worse than when I went in.
My PEG was looked at and it was decided to leave it as is and not fit a new one. The doctor said to me that for it having been in for almost 2 years it is in really good condition still so there was no need to replace it. She gave me some good tips on keeping it in good working order so I am grateful for all her advise.
My sugar readings were absolutely fine with the feeds the hospital dietitians gave me so their was no reason to start me on insulin. To be honest I am glad as I don't really want CFRD to develop at this stage of my life. I will continue to do random testing though as I know it is important at my age to keep an eye on things.
The dreaded lung function test on release is 33%...still good compared to what it was. Sadly I only picked up 400g, which means my weight is now 54.8kg...also better than before but not moving up quickly enough.
Today I cleaned up in my flat, a job that does not hold any enthusiasm for me but it had to be done. Even with it being closed up and no one using it, the dust bkew in under the doors and made everything dirty.
So with suitcases unpacked and clothes away, for once, I am ready for tomorrow and looking forward to our holiday next month.
Tuesday, March 25, 2014
Two Weeks
Hey there all you friendies, family and fans :-)
Well guess what? Two weeks is up and this morning I woke up feeling 'meh'. I can't believe that at the time I should be packing my bags and going home, I feel this way. It took a whole week of treatment before I started to feel any improvement and now this. My doctor said they will see how I am feeling on Wednesday and then decide if they are going to release me or not.
Maybe it's a good thing as my PEG hasn't been sorted out yet either. I and my doctor have been trying to have it looked at and replaced and only today did she get hold of anyone who had anything positive to say. Wednesday it will be looked at and measured - just in case I need a different size. It will then take anything from a week to 3 months I believe. A big time frame but I guess if there isn't one available in my size then it will have to be ordered.
Strangely my sugars have been fine here in hospital. The feed I have here is different to the one I am given to use at home so maybe it is that particular product. When I am back home we will test it and see what happens.
So hey, this is how the last two weeks have been for me...some highlights and some lowlights just making life fabulous so I can keep on fighting.
Here are A few pictures of my stay with all my Best Friends :-D
Michael, Juan, Andriesa, Ndu and Louis <3
Well guess what? Two weeks is up and this morning I woke up feeling 'meh'. I can't believe that at the time I should be packing my bags and going home, I feel this way. It took a whole week of treatment before I started to feel any improvement and now this. My doctor said they will see how I am feeling on Wednesday and then decide if they are going to release me or not.
Maybe it's a good thing as my PEG hasn't been sorted out yet either. I and my doctor have been trying to have it looked at and replaced and only today did she get hold of anyone who had anything positive to say. Wednesday it will be looked at and measured - just in case I need a different size. It will then take anything from a week to 3 months I believe. A big time frame but I guess if there isn't one available in my size then it will have to be ordered.
Strangely my sugars have been fine here in hospital. The feed I have here is different to the one I am given to use at home so maybe it is that particular product. When I am back home we will test it and see what happens.
So hey, this is how the last two weeks have been for me...some highlights and some lowlights just making life fabulous so I can keep on fighting.
Here are A few pictures of my stay with all my Best Friends :-D
Michael, Juan, Andriesa, Ndu and Louis <3
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