Sunday, January 31, 2016

Second weekend in hosp = way better!

A week ago this time I was freaking out in ICU, thank goodness this weekend has been calm and relaxing! Have made lots of progress since last post, off O2 the whole day now, and been walking around the hosp without de-saturating too badly. Appetite back so eating quite a lot. Lungs are definitely back to where they were before the incident, and maybe even better. Antibiotics were however changed yesterday as final biopsy results showed that my Pseudomonas is resistant to the stuff I've been on so far (although I'm much better so clearly it did help at least). Not sure if that means another full 2 weeks in here, will probably find out tomorrow. PICC line still doing well so at least I've only been stabbed by a needle once since that's been in (for drawing blood). Yay

Have had some awesome visitors, I'm sooo spoiled. They were dropping by throughout last week and  Friday night ended with like 6 people here :-) Also got some amazing gifts from work people and spent great time with mom and sis over the weekend, having hair washed, nails done, new pj's, nice food from the coffee shop :-) Trying to move around as much as possible so walked around a bit today, will carry on during the week.

Chris bought me my laptop today and am hooked up to internet now as well. Somehow lost crocheting needle so can't do that at the moment, but so much reading and colouring in to do I'm starting to feel pressurized :-p  Off to bed now, hopefully next week is another good week of recovery.

Thursday, January 28, 2016


So on Sat am at 9:00 i got taken to theatre for a bronchoscope, with a needle biopsy planned for Tues to see what's up with the lungs. I've had many biopsies and always rather enjoy the nap (tip for next time: don't tell the anethetist "make me sleep for long").

The next thing I recall is being stuck in one of those dreams you can't get out of, where you are trying to wake yourself up. Dreamt I was being buried alive and had to unlock a code in order for them to stop throwing dirt on me and for me to breathe. The code I had to unlock was on the back of the lid of the coffin (that was lilac????). Eventually I gave up on the code and just waited for everything to stop, but it wouldn't. 

Heard someone calling me and telling me to wake up but still couldn't figure out HOW to wake up. Thankfully eventuality I did, and was soooo relieved to be awake with my Dr standing there as well as soon thereafter my physio. Was still vented with 2 drains and had to wait a while for blood gas results before they could extubate me. Thank God for special angels keeping you calm when you need them most! Just felt pure relief that the nightmare was over.

On Sunday the reality hit and I struggled to cope with ICU. Confused as to what happened and feeling restrained and having tubes everywhere, making breathing feel harder and sending HR through the roof was just horrible. I suppose with transplant it's different because you expect it to happen and you're probably more sedated or whatever, but it was really tough.

Luckily Monday morning I could come back to sect 7. Even though extremely bloated from steroids and muscles sooooo weak and on so much O2 (on Monday that is) with no appetite and bruises everywhere Sect 7 is just Heaven. 

Medically what happened basically is that BOS (chronic rejection) creates air pockets of CO2 in your lungs. With the biopsy happening the air pressure in lungs changed and while i was in recovery it seems like 2 popped, causing bleeding and collapsing or whatever. Luckily my brilliant drs were there and figured it out and I'm here recovering.

Recovery is taking time but I think it's going well, making progress every day. Eating more, walking further, managing off the O2 for little bits of time. Steroids also lessened now so hopefully less bloated soon. Got a PICC line inserted into arm yesterday to try and prevent further IV needle pricks.

Plan is to keep me here for another 12 days, do a complete course of IV antibiotics. (Biopsy showed PSEUDOMONAS and inflamation.... So same bug I had in Oct... And prob here to stay). Hopefully I can get back to where I was at the beginning of the year lung wise.

All the hosp staff and my family (and friends) have been SUPER. Love everyone. Special love to hubby Chris for being great and doing exactly what needs to be done with calmness and love and still coping with the rest of life.  Loves you xxx

Thursday, January 21, 2016

8 years!!!!!!

Tonight 8 years ago at about this time I got my call for lungs. Tomorrow is the big day. 

In case you don't know, I'm in hospital since yesterday. The feeling tired and short of breath just got the better of me. Having a million tests done. Feels like I'm on like 10 new drugs with shitty side effects and nothing is making a difference. Just getting more tired.

The sleeping with oxygen has been nice. Have sent application to med aid for home O2. Did lung functions today. No change in FEV1% really. But big diff in walk test. 13 days ago i did it and O2% was 83 after walk. Today 78%. Other than that and a bad CT scan nothing really comes back as abnormal. Very frustrating, had a lot planned for weekend which I will have to cancel. One cancelled and unless I get out tomorrow there's no chance the rest will happen.

This will be an interesting year I think. That is code for challenging. Some changes will have to be made.

But THANK YOU DONOR, thinking of your family. Thanks for giving me a life in my 20's. And so far a bit of 30's. You are the hero of my life. You gave me normal.

Tuesday, January 19, 2016

On this day 9 years ago...

On 19 Jan 2007 I stepped foot into Milpark hospital for the first time. The night before I was playing Ten Pin with friends in PE, and the following morning my dad and I jumped on a plane to JHB to meet the transplant Dr. We were going to fly back later the same day. I was referred to Dr Williams by my PE pulmonologist after researching transplant on the internet, asking about it, and being told that if I were interested I would need to go see this Dr. I expected a "meet and greet" kind of appointment, wanted him to know about me, and expected a "Well done for getting this far, come back in a year's time and we can monitor you annually"....

How very very different things turned out... on the plane I asked for oxygen mid-air as I was struggling to breathe. I had to take it off as the plane was landing. While walking in the airport building I felt like I was going to pass out. My dad called security and the guys from the airport came with a wheelchair and oxygen. They took me to the airport clinic, and my O2 sats were very low (can't remember how low). The were reluctant to let me go, but we explained that I'm on my way to Milpark. So into the rental car we got and off to the hospital.

When we got to the waiting room the oxygen there wasn't working, so I waited in the Dr next door's waiting room. By this time I was running a bit of a fever (as I often randomly did after some excitement). When we finally saw the Dr things went very different than expected. He said I was a "late referral and should have been on the waiting list about a year ago". I think my lung function was 26%. He also said I was sick due to having a fever, and I tried to explain this often happens and is "normal" for me, but it didn't work. He told me girls with CF my age (I was 22 at the time) deteriorate quickly. He wanted to admit me immediately and do the work-up for transplant. I started crying and was taken to the Acute Care Unit.

ACU was a pretty horrible experience. It was a ward filled with old people, I was the youngest person by at least 40 years. There was no privacy, and the nurses wouldn't let me walk 5 metres to the toilet, they wanted me to use a bedpan. I still managed to sneak away to the toilet and they would freak out about how low my sats dropped. They did a lot of tests, which were fine, but I lost it when they messed up my drip and it took 9 attempts to re-drip me. All in all it was a horrible experience, but I got the Dr to discharge on the Monday after 3 nights and promised to continue with the IV's once back in PE. I didn't, as I was fine again once back at the coast. The flight back was also full of drama.... I was in a wheelchair from the start, and was to be taken into the plane via the food truck lift. There were moments of panic where we though that we had missed the plane, but in the end we got on just in time.

We went back in April... this time driving with an oxygen cylinder, which worked much better. After that I didn't come to JHB again, it was too strenuous so Dr agreed that we could just send him updates... Anyways... the point I wanted to make was just that it's been 9 years since Milpark has been in my life,  and despite the bad start I only have good memories of it since my transplant. Hopefully it will stay that way!

Sunday, January 17, 2016

Good weekend, feeling better

After the shitty week I feel a bit better again thanks to a good weekend. Two days of no work, more sleep and some friends/family is great medicine.

Yesterday I had breakfast with a friend, had hair coloured (bye red and hello chocolate) and blow-dried, and lungaversary supper with fam at my favourite fancy restaurant Wombles. Got some fabulous early lungaversary pressies, 2 charms for my Pandora bracelet and a bonsai ficus!

Today I slept till about 9am, then we went to check out Brendan's new house to get the pre-renovation tour. Afterwards we had brunch at one of the local places in his new 'hood, Norwood. Was yummy. Went to gym as well, it was to total abortion, could do basically nothing, did some stretching and like 2 weights. Very pathetic. Got 100 vitality points at least. And better than nothing. Next weekend will be awesome, more lungaversary stuff, and an epic birthday party awaiting. But first.... survive another week of work...

Friday, January 15, 2016

Crap week - sleep test and outcome

On Tuesday evening I had my sleep test. It wasn't fun obviously. Slept OK with the help of a sleeping pill. The objective was to see if my oxygen sats drop at night while I sleep. Well apparently this was not the case and the results were "pretty normal". So I'm not getting oxygen to use at night. Rather bummed, because I thought sleeping with O2 would make me feel better in the day.... less tired, less headaches, slower heart-rate maybe, etc.

So nothing will be changing treatment-wise. I'm supposed not to work over-time anymore. Needless to say I've been tired as all hell this week. I went straight back to work after the study on Wednesday morning, was sent home 90 mins early at least to go and rest. Been sleeping 8-9 hours a night and wake up even more tired than when I went to bed. Hopefully after the weekend I'll feel better. Not getting my hopes up though.

Seems like lungs are in the difficult spot where I'm not bad enough to need O2 or to stop working, but I'm struggling to cope with my former routine and increasingly short of breath. I haven't been getting around to going to gym to keep active at all. I get home from work and collapse. Very frustrating. Super stressed. Not a happy camper right now.

Sunday, January 10, 2016

40% - report back on Friday's check-up

Lung function has dropped 3% from last check-up on 16 Nov. This came as no surprise... like I said in previous post I've been feeling crap and shorter of breath. It's been lower than that before but in those cases I was sick, and it went back up. This time it probably won't but I'm OK with that. I did the 6 min walk test... At the start of test heart rate was 135 (my heart has been going crazy fast lately) and O2 SATS 93%. After walking quickly for 6 min the HR was 161 and O2 SATS 83%. Weight was 55.5kg (I think it was a bit higher after xmas but dropped down again) which is the same as with last appointment.

Bloods were fine except that it showed I am dehydrated (maybe because we've been having temps of 38 degrees C???? (For the American people that's 100 degrees F)) and should drink more water AND test my sugar more often. Dr wants me to record it every time I test it, and hubby reminded me that my iPhone has the health app, and that I can actually store it there. So that's pretty cool.

With regards to the headaches I wake up with, it could be due to low O2 levels at night, meaning I need to start sleeping on oxygen, or the dehydration. So I have to do a sleep study at the hospital's sleep lab. Hopefully I can do that this week still. And hoping that it IS low O2 rather than some new problem like sleep apnoea :-( Rather the devil you know...

There were also some discussions about work but I'll leave those for a different post.

On the more positive side, I slept for 12 hours again on Friday night, and almost 9 hours last night, so feeling a bit better again. Trying to drink more fluids. AND we got some awesome RAIN for 2 days in a row!!!!! So it's way cooler now which is awesome. The rest of the week also looks like it will be much better with more rain.

The countdown to my 8 year lungaversary is on! I found some old candles from previous years and I think it makes a pretty cool pic with the new one, Next Sat eve the celebrations start with a dinner with some very special family (even the ones who aren't family by blood might as well have been because I love them so much). The following Friday is the actual anniversary, and we're going to watch Singing in the Rain at Monte Casino with some friends. The Sunday I've invited all my transplant friends over for a braai (BBQ), And on the Saturday we're invited to a birthday party so that's more fun and celebration. So 2 rather busy weekends coming up. Good thing I'm doing nothing this weekend.

Hoping for a good week work-wise and good sleep-study (hopefully it happens this week!) that gives us some answers.

Thursday, January 7, 2016


I've been soooo tired the last few weeks :-( I've been working rather a lot of over-time, currently we're busy with month-end, difficult deadline for Wednesday, and we're having such a bad heatwave at the moment. Luckily I sit in a office with air-con on the whole day but when I'm not at the office I'm dying. Sleeping with a wet face-cloth on my legs to try and cool off. I haven't had the energy to make supper once this week, so Chris has been great with either making supper or getting us takeout.

Also been struggling more to breathe, might be heatwave-related. Poor heart also racing like crazy, heart-rate was 148 after I took a shower today. Waking up with a headache every morning... so I managed to get my lung check-up moved to tomorrow instead of the 21st. Last week on New Years Eve I felt so crappy, we went home before 11pm. Was nauseous and tired and wanted to go home.

Went for bloods today so that results will be ready tomorrow. Curious to see what all the results are. Just need to survive one more day at work before it's weekend, yay.

Friday, January 1, 2016

2016 has arrived!!!!

So 2016 is finally here!!!!!! Always happy about the start of a new year, even though 2015 wasn't totally bad. This year I'm actually not making resolutions like some previous years. I have a feeling that this year will be different... possibly more challenging health-wise as lung function continues to drop, however I feel like it's reaching the "I'm noticing it" stage more and more. When your lung function is 70% or 90% you don't notice a 10% or a 5% drop, but where I'm at now you DO notice it. It does feel like it's dropped somewhat sine my last check-up on 16 Nov but we'll see when I go again on 21st.

So instead of resolutions I have found the below quotes that I would like to apply to the year.