Tuesday, March 31, 2015

Paint Nite, weekend and headaches

Rest of last week was full of medical stuff as expected. Dermatologist burned off 5 transplant "wart" things which looks gross now. One on hand, one on left cheek, and 3 on chest.  Have to have this done every few months or so otherwise they spread, and due to my suppressed immune system they don't go away on their own.

Had CT scan of sinuses done on Friday, even though I was more than an hour late for it due to BAD traffic. The amazing staff at CT scans waited for me and saved me ANOTHER trip to Milpark. The ENT called me yesterday, and the just of it is that my sinuses don't look awesome, but I must carry on using the new cortisone spray and see him again on 20 April. It does feel like the spray is making a difference so that's good.

Not much happened over the weekend, Saw Andrew and Bianca and Brendan twice. Brekkie on Sat morning at Salvation Cafe and lunch on Sunday at our house. Was great catching up!

Last night I FINALLY attended a Paint Nite! It was BRILLIANT fun! I went with Fawn and Genevieve, it was hosted at The Baron on Main, and it was the best way ever to spend a Monday night! The concept is that the evening has an artist who takes you through painting a specific piece step by step, while having drinks and fun. Last night was neon-themed, and the the UV light was out, adding even more atmosphere and fun to everything.

I definitely made the right career choice by not going into art, (and right subject choices in High School for that matter!), but the evening is just about relaxing and having fun. Eventually we started painting ourselves, and stayed until they were packing up! Definitely highlight of the week by a long shot! Check out their website here...

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.