Janka´s journey

This is Janka´s blog about travelling with Cystic Fibrosis.

Thursday, March 02, 2006

Decisions, decisions......



well, here I am and there's been so much going on but I'll try to keep it as short as possible just in case you get bored.

So since I got this rented car I have been exercising daily, the only thing I can do here is swimming but I do that for an hour every day. Go me.

On Thurday I headed off to Cape Town to see the CF specialist PW (Professor Wilcox) at the Groote Schuur Hospital. Thanks to Karin and to the CF Associasion here, it was no problem getting a "clinic" (that's what they call a check-up) so at noon sharp I stood outside the hospital's gate. I was kinda glad Doreen had come with me cos the firts thing I saw at the door was a huge metal detector. I mean, I have been to a few hospitals in my life, none of them had a bloody metal detector at the entrance. The Security guys were really friendly though and they explained to us that the reason they have this thing is because often there will be gang fights and shootings nearby, someone gets rushed to the hospital but they'll have to check for weapons. Aha. makes sense.
Anyways, the hospital was quite old school-looking, dark hallways and stuff...Doreen said it reminded her of East Germany - before the wall came down! hehe....
At the CF section we were greated by Ruth, another Lady from the CF Association who had just come by to say hello to me. I also met Shelly, a CF adult who was going for a clinic. They do have a funny system there, though. I mean, in Europe we are almost paranoid about separating CFers who have different germs to avoid cross-infection. That's one reason why I don't do CF camps a lot, maybe every 3-4 years. In Germany, a CFer with pseudomonas would never get an appointment the same day as a CFer without that germ, and even in the CF camps in Belgium they do their nebulisers and drainage and stuff in separate rooms.
Here, they have clinics twice a months and who ever shows up shows up. No appointment needed and you don't even call and tell them you're coming. Shelly showed me some of the hospital later and I saw that on one side of the hall they have rooms but on the other side, the hallway is just wider and there are like 10-15 beds with patients, so they are basically staying in the hall. Shelly said when you do IV's in the hospital (and they normally do - since the at-home-version is too expensive) they don't want you to leave the hospital at all - which would be my worst nightmare. Cos when you have your IV you're not really sick, eh?! You're usually just bored to death. Any ways, she said they even mix CFers and TB's (Tuberculosis patients) and all of a sudden I didn't feel so comfortable walking around the halls anymore.....
But PW and Richard (a senior registar - whatever that means...I just got it from his name tag...) were really nice and I had a good chat to them. They couldn't believe I'm taking all this "fancy" medication, Tobramycin for example, an antibiotic I take on a daily basis is not available here because it costs too much. They hardly prescribe antibiotics here anyways for that same reason. So they try to work with macrolides and just cheap stuff they can afford. The patients have to come in once a month to get a check-up and their medicine. Some have health insurance, like medical aid but Shelly said she's had problems with them paying her med bills.
So yeah, because in my country we have quite a good health system (which is about to change, though) and my parents pay for my meds I have never really had to worry about how expensive my meds are. They were gonna have a test run for tobramycin here in SA but the parents of CFers refused, saying that if Tobi really worked for their kids they couldn't just tell them that they can't afford it. Stuff like that really gets to me cos we never had discussions like that at home. Whatever meds I needed I got.
So yeah, I had a lung function done (with a very antique-looking thing...but it was all for free so I won't bitch..hehe) and that gets me to the next thing I need to tell ya about...

...results were not too great, I'm about down to 50% (not surprising, though...I have been sick since a few days after I got to the Kibbutz, I'm around people who catch the flu easily due to malnutrition, I have just started the exercise and the heat strokes don't make things better). The thing is, I went for runs at the beach on Fri, Sat and Sun and while Friday I could only run for 10 mins, on Sun I was doing 30 mins easily and (listen Doc: this is for you...my pulse rate was even in the supposed area - between 100 and 130!!!). I also felt 100% better, I didn't cough at night or in the mornings before doing the nebuliser when I sayed in Kommetjie (this is where the chill'n'surf backpackers is and my accomodation when I go to Cape Town) when in Worcester I'm coughing quite a lot.
I've asked the Cf people what they thought of it and Karin said maybe it's the gas and parrafin stoves they're using. Hell, I dunno I just know that my lungs prefer to be near the sea and actually I have to admit that I felt the same way in Australia. So no news, really.

So what to do?
Well, I had been thinking about it all weekend and finally came to the conclusion that maybe (for the first time in my life) I should put the CF and my health first and leave the Kibbutz. I felt so bad about it though, cos I thought I was gonna do this for three months and some of my friends and family are saying that I should start sticking to something rather than doing all kinds off different things all the time...and maybe they have a point. I mean, commiting to something for 3 months isn't really that long - but here I am, leaving again, after only what...six weeks?!
So yeah, I called my organisation to ask for a different project, one that's on the coast and they have a couple in Kommetjie (this is where chill'n' surf backpackers is). There's an animal shelter and a center for children with special needs. On Friday we're all going back to the chill'n'surf (time is up for the girls and we're going to have a going-away-party for them) and I think I might check the projects out, see which one I can get into. I was really glad that Ali, my In-land coordinator was so great, she didn't question my reason for changing placements once after I told her the whole story.

Anyways, back to the story...in case there was one...
So after the hospital Shelly was nice enough to accompany me to Fish Hoek, a small town outside of Cape Town (as you all can imagine - I would have never found the way on my own...) where Karin, the chairman of the Cf association of Cape Town lives.
So I (finally, after only talking on the phone all the time) I met her, as well as her daughter Barbara, she's my age and got a son named Darryl. They all live with Karin but it's not too bad because they've got a huge house. Upstairs in a separate apartment live Stephen, Karins 37-year old son who's got Cf and Jane, his wife.
Such lovely people and after I shared some travel/CF stories they made me stay for dinner which was delicious. Of course, they had a laugh at me for the little amount of food I ate (for a CFer, though!)...:)

So I spent basically the weekend with them, went to the beach with Barbara and Darryl, met her boyfreind Andrew and some other friends and together we convinced Karin to do some baby sitting so we could all go out for drinks....:)

Ok, so I'm not sure if that's all I wanted to write. see, this post is a bit tricky, I've started writing it on the 2nd of march but today, when I actually publish the post, is already the 7th and I'm not sure which date it will show on the blog. Yeah, I know....you're wondering why I take 5 days to finish a bloody entry...well, lemme tell ya. We've had power cuts big time, every day we only had electricity for a few hours. That means no cuppa tea for the brit girls and no internet for me! But now I'm at the c&s backpackers where there aren't so many power cuts (cos this is the white area) plus we've got internet here. So yeah, you might just get a short up-date post soon.....maybe.

Anyways, It's almost 6 am and I've been sitting on this computer for an hour so time to get some breakfast, nebs and all this morning-stuff (shower, cleaning teeth, getting dressed, etc.) and go to work.

Later.

9 Comments:

  • At March 07, 2006, Blogger heather said…

    Interesting to read your blog. I have a sister-in-law that passed away a few years ago from c.f., and another sister-in-law(her sister) that has it too...

     
  • At March 07, 2006, Blogger Jaanie said…

    i think youre doing the right thing in putting cf first. as annoying as it is, its definitely smart. dont feel bad at all. you wouldnt be useful to anyone if you stayed and got worse. so just suck it up and keep doing well and find something else to do. i know alot of other people would have completely thrown the towel in and gone home, so kudos to you for staying.

     
  • At March 07, 2006, Blogger Janka said…

    hehe..cheers jaanie! and by the way, this is such a cool new profile pic u got there!!!
    @ heatherpink: thanks, so nice to hear that someone's actually reading my rambling...:)

     
  • At March 07, 2006, Blogger Jaanie said…

    why thank you. tis a bit old, but i figured the 'coolness' outweights the out-of-datedness...

     
  • At March 08, 2006, Anonymous Anonymous said…

    Hey Jankagirl!

    First, tnx for the postcard! Very nice surprise.
    We always read your blog, and every new post is very interesting, just and only cause it's about you!! :))
    Really hoping that you can manage to get into one of those projects on the coast. Good luck with everything, check your mail for more!

    Big hugs, Arja and Jelmer

     
  • At March 09, 2006, Blogger Becky said…

    This comment has been removed by a blog administrator.

     
  • At March 09, 2006, Blogger Becky said…

    Yeah I agree good idea to put health first...nobody wants you to be sick - you're not very useful then! And yeah to further what Jaan said - the majority of people would never even consider what you're doing, so at least you've been trying it!! Let us know as soon as you know what you're doing.

     
  • At March 15, 2006, Anonymous Anonymous said…

    Wazzup!! I keep checking ur blog, but im waiting for a new post!

    Take care

    Jelmer

     
  • At March 15, 2006, Blogger Lauren said…

    Hi Janka,
    It's been awhile since I checked in with you. I hope that by the time you get this you will bave been able to sort through all the options and been able to decide which is the best way to proceed.

    Incidentally, my parents also help me out with paying for the meds I need. At first I felt funny about that since I'm married and should be able to "handle things" as a grown-up. But then I realized that this wasn't because they were coddling me, it was because they have the resources to help, and it helps me and my husband to not have to worry about it.

    Anywho, I hope you are feeling better soon. I'd love to hear from you when you get a chance!

    Warmest thoughts and friendship,
    Lauren

     

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