Wednesday, March 25, 2015

Bumper Bashings and Headaches

This has NOT been my week!!!! Monday morning on the way to work I had my first official "car accident". The car in front of me suddenly slammed his breaks (for the car in front of him) and I drove into the back of his car. Got a big fright but the damage doesn't SEEM to bad. My car worse than the other car.  Had to go to Police Station after work (and x-ray and grocery shopping) to get a case nr for insurance.

So the x-ray I went for was for my sinuses. Been having bad (what feels like) sinus headaches. So I went for the x-ray on Monday, and made appointment to see ENT today. Well he couldn't see much on the x-ray or with his camera down my nose, so now I have to go for sinus CT scan on Friday. Hopefully that sheds some light on the matter!!! Tomorrow I see the Dermatologist to have some tiny med-related warts burned off. Bad timing but I've already moved the appointment once, so will just go.

So 4 medical stuffs this week, and crashing my car. Plus we haven't had water at work for 1.5 days, and no electricity at home this afternoon! I'm also in my self-payment gap so all this medical fun is really making me feel all warm and fuzzy inside *sarcasm*.

P.S. It's not all doom and gloom, also working on some holiday plans... hoping they work out!

Saturday, March 21, 2015

Friday, March 20, 2015

Weekend - yay

Not much happened this week, we saw a friend on Tuesday at our favourite Chinese restaurant all the way in Alberton that Chris and I always used to get take-away from when we were still dating. I had the best sushi EVER. Went to gym on Wednesday and upgraded the 6kg dumbbell in my routine to the 7kg one... strong arms here I come.

Tomorrow we're off to Cullinan by steam train for a family day trip. Very excited and should be pretty great. Hopefully the massive headache/sinus thing I've been struggling with the whole day will be gone by then.

Below is pretty sunset after a thunderstorm we had yesterday afternoon. Love Joburg weather!

Monday, March 16, 2015

Thank You

Thanks so much to everyone who showered me with so much support after my last blog post. Apart from the comments on the blog, I've had such great comments on Facebook and via other messages. Feeling a lot happier and lighter :-)

Had a chill and productive weekend... gymmed twice, went to the quaterly Transplant Network meeting at the hosp with Chris. Washed curtains, saw some friends on Saturday eve, did a bit of shopping with my sis on Sunday afternoon... and managed to sleep in a bit. All in all a good weekend. And starting this week feeling very loved...  Thanks :-)

P.S. I added some of the public comments that I received on Facebook under the comments section of the previous post... so that I can always go back to them when I need to (harder to do in fb)

Thursday, March 12, 2015

Struggles with Chronic Rejection and Life right now

I've decided to put some of my current struggles down on paper, as it was one of the reasons I started this blog as mentioned in my first ever post!

These are some of the struggles I have NOW, basically 26 months into chronic rejection/BOS with a lung func of about 44% FEV1 and 93% Forced Vital Capacity (BOS attacks the small airways so my Lung Capacity has dropped but is still good. It's a very different feeling to lung decline due to CF)

The key clinical feature of BOS is the development of airway obstruction with a reduction of forced expiratory volume in 1 second (FEV1) that does not respond to bronchodilators

See complicated article about BOS here.

After having completed photopheresis almost a year ago and basically no more treatment options available or suitable for me, I now find myself in a unique situation. I have semi-stable lung function, with nothing wrong with me apart from breathlessness with exertion. The rest is fine, I get sick less than most of my family members and like I get told all too often "you look great". That's the only "physical" struggle. Mentally there are a lot more! Here goes...

  • Moving forward in life. Your decision making regarding so many things get messed up. Some were dealt with right in the beginning, like having kids. You can't have kids (via surrogacy or adoption or pregnancy) when you are in this position, Career wise it is tough and has been for the last 2 years. Lungs aren't stable enough for me to feel safe to make a career move. What if I take a risk and make a change and then lung function suddenly becomes less stable? Would there be technicalities regarding pre-existing conditions? So it stands to reason that I should stay where I am. It's safe. So now that I'm married, and we bought our own place the natural order of things are interrupted.... no kids, no grand-kids, this will just be me and Chris and the cats going forward. Friends who got married when we did are having 2nd children already, and you become a bit isolated in terms of socialising.... not seeing those friends with kids often anymore. and some friendships might be lost forever as we don't share all their interest anymore.

  • Finances.... Do you spend money on travelling and having fun while you still can? Or are you responsible with your finances knowing at some point your salary might stop? And I have a husband to take into consideration in these arguments as well.... I can't go into crazy overdraft and go wild, I don't even have life insurance and can't leave him in the shit when I'm gone! I've heard stories of people who travel the world post transplant because they base their calculations on statistics.... they end up almost broke and homeless due to beating the stats! 
  • Living life to the "full". For an average 30 year old that might include some irresponsible behavior. For a transplant patient it might just mean eating sushi and biltong. Where do you find the middle ground? Do what you want to do without being too "naughty". I think it's easier for the older transplant patients in their 60's to obey all the "rules" 100% because they HAVE lived out their 20's and 30's to the max. Some are even in the position they are in due to previous life choices like smoking. We (young and/or CF transplant survivors) have NEVER smoked, and survived our teens as best we could. Now in our 20's we suddenly feel HEALTHY. How do you enjoy this without breaking any of the rules? You have to find a middle ground. But it can be hard (and sometimes you might not succeed).
  • For me being "motivational" has also become hard. It's fine to chat to a stranger... I look normal so I don't need to mention my rejection, It's all just "Wow you're 7 years post transplant kicking ass! Let's drink to the next 70 years". No details given and all happiness. But trying to motivate patients on the waiting list that you know you will probably walk a journey with is harder. It's not all moonshine and roses anymore, and who wants to depress someone on the waiting list??? I normally just try to brush over the rejection part like it;s no big deal but that won't work forever. Tricky one... All I can say to them is that transplant is WORTH IT and I would do it all over again in a heartbeat, even if I only survived a year post transplant.
  • Then finally there is the death-guilt thing. I don't have the right to mope having come this far and having lost Gail, Melissa, Francois, Shamone, Dominique, Lynn, Ninette, Landi, Helen, Louis and Gustav, to name just a few. I'm sure they wouldn't have minded dealing with these issues right now.

These are just the issues I'm comfortable sharing on my blog, there are more! This is just a venting post.... Please don't ever think I'm not totally grateful for my 7 years, 1 month and 18 days "extra" that I have been gifted so far. It is a strange place that I've been finding myself in but hopefully there is a point to all this.

Tuesday, March 10, 2015

Quick update

Lung check-up yesterday, nothing new. Lung func down 1% to 44% FEV1%, weight 1kg up. Stable. Was nice catching up with some other CF-post transplant patients.

This weekend we celebrated my dad's birthday and Fawn's 2 year lungaversary.

Thursday, March 5, 2015

Saying bye to my Grandad.

So last Friday after half a day at work we drove down with my dad to Jansenville for the funeral. We arrived after 20h00, and after a stop at the old age home to see my grandmother we checked into the guesthouse. Our accommodation was really nice and it was great having a comfortable place to stay during such a crazy weekend. Won't mind staying there again next time we drive through there.

Saturday went well I guess. The service was at 11h00, my sis and I did the eulogy. It went well I think, and all in all I think my grandad would've been happy with everything said by everyone who spoke and the number of people who attended.

The burial took place in the scorching Karoo sun (and it wasn't even a hot day!). It was very fitting I think. We just missed my aunt Annelie SO MUCH. She had been visiting them for 2 weeks and went back home to London like 3 days before he passed away. My sis kept her updated with pictures the whole time, and Pierre recorded the service for her, so she was with us in spirit the whole time.

It was great seeing my cousins again at least. Only see them at weddings and funerals it seems :-(. Last time I we saw them was in Nov 2011! Drove home on Sunday after breakfast.

Tomorrow is Gail's memorial service. Wish I could be there. Such an exhausting week, could just sleep for a month.

Sunday, March 1, 2015

Goodbye Gail :-(

One of my closest CF friends Gail passed away in the early hours of Friday morning. She was 26, and waiting for lungs. She came up to JHB on the evening of the 23rd of Jan, very sick. She blacked out on the plane on the way here and was in pretty bad shape when I saw her the Sunday. She never left the hosp again and fought off infections as well as bad tummy issues. She also went through the trauma of losing Melissa on the 2nd of Feb.

On Thursday she wasn't immediately responding to our daily chats, and I asked if she was OK. For the first time EVER she said "no". She was SUCH an optimist and and never said that she wasn't fine. I started worrying about her and my last message to her was when I went to bed on Thurs asking if she is breathing any better yet. On Friday morning when I put phone back on I saw she replied "Nope" at 22h30, and upon logging onto Facebook saw that her husband had posted that she had passed away a few hours after replying to me.

Melissa and Gail were my best pre-transplant CF friends, and I chatted to them a LOT. I can't believe both of them are gone in the same month. If only they had also gotten lungs in time. Wish more people were organ donors and wish they were as luckily as I have been. Hate this disgusting disease.

RIP Gail and hope that you and Melissa are together now running freely. My thoughts go out to her loving hubby and the rest of her family :-(

Thursday, February 26, 2015

RIP Oupa Gouws

On Tuesday afternoon my Grandad (mother's father) passed away :-( I was at home on my sick leave when the old age home called me. Tomorrow we will be driving down to Jansenville to attend the funeral on Sat (same church where I was christened 30 odd years ago).

My Grandad was a farmer and formidable sportsman. He was passionate about his rugby and played for many years. When he couldn't do that anymore he played tennis. After that it was lawn bowls. Amazing competitive spirit and obviously he always encouraged any sporting activities that I did.

When I was small I used to be scared of him because he seemed so rough and tough, and the way he drove his Isuzu bakkie over loose rocks did not help! I think it helped me prepare future-me for my own driving!

He had a dry sense of humour and sharpness that I appreciated as I got older, and he could say grace before a meal faster than ANYONE ever could. He also told teenage-me that guys like a girl with some meat on her bones when I gained weight (not particularly what I wanted to hear). You couldn't get more honest and down to earth. The last time I spoke to him was exactly a month ago on his birthday... We will miss him a lot.  

Tuesday, February 24, 2015

Yesterday, kitty love and Fawn's radio interview

Yesterday's procedure went very well and lungs behaved excellently. Very impressed with the WITS Donald Gordon Medical Centre! The staff were REALLY great and friendly, the place looks great, and everything super hygienic. I even got called twice and texted once in the last week to confirm the details for the day and the medical aid authorisation. So organised. Gynae removed polyp and chunk of cervix, hopefully this sorts out the matter for a good while again. At home today but back at work tomorrow. If it were up to the kitties I'd never go back to work :-p

Also, Fawny did an interview on Classic FM along with the mother of a CF patient and Dr Cathy Baird. You can listen to the interview here.

Gym on Sunday went pretty well again compared to the previous few times. Pretty curious about what lung function will be in 2 weeks time. My O2 sats were between 94 and 97% when sitting up in bed yesterday, and 92% when lying down. I know they drop to below 90% when I exercise but go up again when I stop. Last time I did the 6 min walk test they dropped to 85% at the end of the walk. Anyways... just random info. Back to watching TV for me.

Sunday, February 22, 2015

85 monthses!!!!

Today is 85 months! And yes, I still commemorate every month with the new lungies. Will need to do something to celebrate 100 months next year :-)

Friday eve we tried out a new spot in Melville... Jo Anna Melt Bar. When I first moved to Joburg 7th Street in Melville  was a very popular hang-out for people my age (although I didn't have any friends my age here back then so I was not one of the people hanging out there LOL). Since then popularity moved to Greenside, Parkhurst and probably some inner city spots like Maboneng. However Andrew informed us of this place and we tried it out. (even though Andrew mysteriously missed the invite and didn't join us!).

Melville is apparently having a revival which is good news (as my parents live there!) so was interesting being back there in the evening. Apart from the smell of weed wafting up the street and some dodgy characters (what would Melville be without them) the bar was pretty cool. They only do toasties (and have about 8 on the menu), but it is YUMMY. I also had a Mango Colada Cocktail which was obviously also great.

Looking forward to seeing what happens in Melville and definitely need to visit one or two restaurants that looked pretty amazing.

Today I need to go to the gym, but not much else planned yet. Tomorrow is going to be CRAZY, going in to work early, working till 10h30, checking in at Donald Gordon Medical Centre for my mini surgery at 11h00, and the rest of the day will depend on the Dr's timing I guess! At least on Tues I can chill at home and recover. Have a good Sunday!