October = DONE

Tomorrow it's November, yay! Closer to the end of a crappy year health-wise, and my sis and her hubby moving up, and my long weekend in PE and Christmas. This week's been good so far, been to gym for 3 workouts, all of which were EXTREMELY tough. I'm not sure if it's because I'm unfit or if lungs are worse :-/ Very disconcerting!!!! But I have another week to work on the fitness before I have to go for lung function again. So let's hope it's unfitness!!!

I went to my new cell-group again last night, which was awesome. So glad I found them, such great people. Tomorrow night I'm going to Cullinan just outside Pretoria for a work team-build. Should be interesting, can't say I'm looking forward to it very much but hopefully it's better than expected.

On Sat I have to go for bloods and x-rays, there is a transplant support group meeting plus my friend Brendan's 30th birthday pool party! Sunday I want to gym again and having lunch with my parents. So busy weekend ahead!! AND hoping and praying Discovery approves more photopheresis and that lung function is still stable!

P.S. After posting the pic in my previous post, I realised I have started collecting that quote!! Check out my collection so far....all were gifts from special people!

Present from the sis in law!

Worst 2 photopheresis days so far

I've had 2 days from hell, the Drs in Pretoria didn't want to use my groin because I'm on warfarin due to the blood clot (and that's a whole controversy on it's own) so they had to use my arms. They inset a very big and thick needle in the left arm where it bends for sucking out the blood, and another normal drip for the blood to go back. The arm used for sucking out the blood hurt like crap the entire time, and I've never had such a painful needle-experience EVER. In total I was poked with needles 10 times. I look like an abused person now (again, thanks to the warfarin) and feel like a pin cushion. And left arm still pretty damn sore.

I have now completed the 12 sessions that Discovery approved. So now they need to apply for more maintenance treatment (sounds like it will be 1 day of photo every 2 weeks... not sure for how long). Let's hope it gets approved...

Back @ work tomorrow, hopefully I'll feel more rested by then. Not much planned for the weekend, but pretty much need to recover from this week. And need to go for bloods again to check warfarin levels... have I mentioned I hate this drug??

My friend Fawny is in Cosmo!!!

My fellow lung transplantee Fawn is in the November issue of Cosmo!! Very very cool!!! And tomorrow it's 5 years 9 months for me...

 

 

The week that was and week that's waiting

This week was WAY better than last week at least. Work was less hectic. Only had to be pricked by a needle once (for Warferin bloods.... testing how thin my blood is), bought a diary and desk calendar for next year (already have 3 weeks of leave put in for April and will soon have to put in photopheresis appointments too) and managed to make it to gym once.

On the down side I have inflammation in my right eye and it's all red and irritated. Not sure why or what happened but hoping it will go away soon, saw the optometrist and she said there's not much she can do about it, I got eye drops and if it doesn't get better I need to see specialist, which I REALLY REALLY don't want to do.

Last night we chilled at a friend's house playing some 30 seconds and eating take-aways (and drinking a little bit too much probably!). Was a lot of fun but feeling a bit tired (but happy) this morning. Luckily no plans for the day, so just going to relax and do some laundry. Tomorrow we're going to a friend's house for lunch which should be great as well. And hopefully I manage to get to the gym tomorrow!

Next week should be busy but good, my brother in law will be coming up to Joburg for 2 days and we'll also be seeing Chris's sister. Wednesday and Thursday is photopheresis and Friday back to work again.

Feeling better

I'm feeling a whole lot better after a great weekend and planning a trip to PE. I also went back to gym today for the first time this month... feeling unfit but it wasn't horrible. Going back on Friday so hopefully then it will be a bit better! Lungs were same as always just muscles tired and body a bit weak!

So coming back to the PE trip... I decided to put in leave on 17 and 18 Dec (the 16th is a public holiday) and book a 5 day trip to PE. Will be spending time with my sister and any friends who might be there, definitely Antoinette. AND... I'm going to be ticking off an item on my bucket list! Been wanting to do this FOREVER... a Tsistikamma Canopy Tour!! SO EXCITED about that. Will also be doing some hiking at my all-time favourite place in the world, Storms River Mouth. I put in 2 weeks of leave for April as well... it's still a while away but at least I know it's been approved.

So all in all, things are much better this week. Next lung function is Friday 8 Nov, hopefully by then my fitness is up ((and weight another 1kg or so) and the next round of photopheresis has been approved by Discovery. Still hoping lung function will be up but if it stays stable I will survive.

Stability

Lung function was 66% of predicted FEV1% (the amount of air you blow out in 1 second) and volume 100%. (FVC). The FEV is normally the more important nr and dropped 2% which according to the Dr is no change. Weight up 2kg (worked vey hard on that one! Still want to gain another 2kg to get to 57kg). And Dr says I "look good"... for what it's worth. Disappointed that after 10 treatments and being pricked by MANY needles and 5 femoral lines and a blood clot and painful injections in stomach for clot (and now not allowed to play squash for a year or however long I'm going to be on blood thinners) and having used up all my sick leave and a few days annual leave I feel like I have nothing to show for it.

Obviously that means I'm being "negative" apparently and I should be happy with stability. So yes I am feeling a bit negative and tired right now, (especially after the blood clot) but sure I'll start feeling better when I gym a bit again and gain some more weight and trying to keep myself busy so I don't think too much. I'm a stubborn person and worked hard to see improvement and won't stop doing that. So discouraged doesn't mean I'm giving up by any means. I'm a fighter and that's why I'm still here today. But I also need to be able to be upset and irritated even though I'm trying to be more thankful. Next photopheresis is 23 and 24 Oct (got a week extension of next treatment due to clot) and then the Drs will have to apply to Discovery for another 8 treatments. Hopefully that's not going to be another big issue again. So hopefully this discouraged phase will pass soon and I can be more positive again.

Dr also hinting that I need a holiday, so going to try and organise to go visit my sister and Antoinette in PE for an extended long weekend for a nice girls weekend of chilling and the beach and going to my "happy place" Storms River Mouth for a day. Just need to re-charge desperately and not taking any leave over Christmas.

This weekend is a good one, went out for supper last night with Chris, went to baby shower this morning, having supper with our friends and their twin babies tonight... tomorrow brunch out and lunch with the parentals and then church.

Goal for the week is to do some slow gymming, need to go for bloods again on Thursday to test Warferin levels (anti-coagulant I am now on) and to try and be more positive.

Tomorrow: Judgement Day!

Tomorrow it's the day I've been waiting for since 23 Aug... when I did my last lung function test... I've had 10 sessions of ECP (photopheresis) now and the Dr will decide if I should have another 10 (if it's working), or if we're gonna change treatment plan after the 12 approved sessions (which I doubt). So badly want lung function to be up... even if it's just a little bit. I've had a really tough few weeks and I want to know it was worth it. This week was the worst in terms of month-end at work clashing with Dr appointment and last week's ECP plus the blood clot. I had to see a vascular surgeon on Monday about the clot and now have to take warfarin tablets for a year as well. Luckily the Clexane injections finish tomorrow because they're really unpleasant! Cold is much better so hopefully that won't affect lung function.

On a more positive note, I joined a cell-group at church... some young working adults supporting each other and to share spiritual stuff and stories with.... I attended it for the first time last night and it was really great. So that's exciting.

Please pray tomorrow goes well!!!! I need some good news healthwise for a change!!!!

Cold and Blood clot... AAAAHHHHH

So not only do I have a cold, but I have a blood clot in my groin and was almost admitted this morning. It's on the left side where I had the femoral line this week with the photopheresis. Now I have to inject myself twice a day with a blood thinner. And have an antibiotic for the cold I managed to pick up in Pretoria. So irritated, but looks like I shouldn't lose any more days at work because of this. Have to have a repeat scan of my groin on Thurday and on Friday it's judgement day when I go for lung function and lung check-up. Just want my lung function to be better more than anything else in the world... so that I didn't go through all of this for nothing.

 

Photopheresis #9 done...

Today went fine, hopefully #10 tomorrow also goes well. Then it's back to work for a crazy busy day on Friday. Off to bed now with a sore shoulder and uncomfortable groin... night night