New Lungs, New Life... for a second time 💚

As most of you know I've been in chronic rejection of my bi-lateral lung transplant that I received in Jan 2008 since the beginning of 2013. I had a course of 24 sessions of Photopheresis in the period between Aug 2013 and May 2014. It was deemed successful as it drastically slowed down the decline of lung function that I was experiencing mid 2013. I was still able to take part in the National Transplant Games towards the end of 2014 in Stellenbosch (I couldn't play squash or do race walking anymore, but had some training in shot-put and discus. I was pretty bad at it, but I really wanted to compete!). At this stage they had never done a second bi-lateral transplant in SA before, but I hoped that they would consider me when the time came.

In October 2015 I as admitted to hospital with a Pseudomonas infection. I used to culture this bug with my old CF lungs, but never with the new lungs. However it loves diseased lungs and mine were now at the point where Pseudomonas deemed it a good time to return. After two weeks in hospital I went back to work. In January 2016 I was admitted to hospital again... not feeling well at all. A biopsy was done and unfortunately both lungs collapsed in Recovery. I was told that this was due to air trapping, which happens with the kind of rejection that I had. I woke up in ICU with 2 chest drains, and after a month in hospital I was able to return home, but I was now on oxygen 24/7. At this point I also stopped working. I was admitted another two times in 2016 with the same bug.

Towards the middle of 2016 I underwent the work-up process for transplant again. It was more comprehensive than the first time around. I had to keep my weight up even more and see a biokineticist twice a week, along with frequent Drs visits obviously (dentist, gynae, lung Dr, dermatologist, had scopes done...). I was placed on the waiting list again during the second half of last year. This year my lung function fluctuated between 24 and 30%. I was hospitalised again in August with a cold and returned home with another new bug :-(.

I was really starting to get depressed, as the work we do with Love Life; Gift Life has showed me how much is lacking with organ donation in this country, and how the number of transplants performed has declined since my first transplant. Somehow patients on the waiting list were being let down by some people who work in the field yet doesn't know what it feels like to hold your breath waiting for an organ, while seeing others on the waiting list pass away. I had to keep telling myself "If you hold out long enough, statistically there HAS to be lungs for you someday. By the way, please tell your family of your wishes to be an organ donor via our website! Your family are the ONLY people who have a say regarding what happens to your organs once you pass away, so if they don't know it means nothing.

A few weeks ago, shortly after midnight, my phone rang. It was my Dr!!! He said that they possibly had lungs for me!!!!! We had to be at the hosp by 3am. We calmly packed and got ready. I started trying to get hold of family members and close friends. I was extremely excited!!!! My mom and dad joined us at the hosp a little while later. The waiting part at the hosp was a bit of a blur... I tried reading, had to take a bath. Took a selfie. The time between the call and the transplant was a lot easier this time around! It was much shorter and we didn't have to fly from PE. I would definitely recommend to anyone on the waiting list to live close to your transplant centre! It takes off a lot of pressure! This also applies to post transplant.

They took me to theatre at about 8am. I wasn't nervous at all, just hoping and praying that the lungs will be good and that it won't be another dry-run (story for another day).

I came out of theatre at about 16h00. The surgery had gone really well, and I didn't need ECMO in ICU (only VA-ECMO in theatre). Read more about ECMO here. This is quite amazing, seeing as I'm a retransplant. With my first transplant I was ventilated for 4-5 days, so we expected the same at a minimum. However when Chris called the next morning I was sitting up, off the vent and talking!

I was so surprised when I woke up and heard that it's only the early hours of the next day! It motivated me to try and push myself to get out of ICU. My ICU experience this time around was much better though. Probably partly because I knew what to expect, and also because it's a new ICU which is much nicer than the old one! I did have some hallucinations of people talking and music playing, and I was quite confused a couple of times. Medically it couldn't really have gone any better though.

On day 8 I was moved to Section 7, which is a big step in the right direction. I still had 2 drains in... one of the big intercostal drains and a Euroset (which is actually also 2 drains). The intercostal ones are really thick and pretty sore. Thank goodness for pain meds!

The Euroset is placed in the soft tissue and not in the rib-cage itself, so they are much less painful.

It was a bit annoying though that the Euroset didn't want to stop draining and probably kept me in hospital for an extra 10 days! This is mostly a combination of a medication that I was on before this op that prevents healing (it was one of my anti-rejection pills), and the fact that it's a second transplant and they had to go through a lot of scar tissue. It gave me the opportunity to build up more strength in hospital though. The best part was getting rid of the supplemental oxygen after about day 10 post op, and walking around the hospital with no oxygen, drains still in but great O2 sats.

So I've been the first successful redo of a bi-lateral lung transplant in South Africa as far as I know. The last few years have been quite tough, so I'm really hoping that in the next few years Chris and I can live our lives a bit less stressed again, and that the easy breathing will continue. We would love to travel again. I want to take part in the World Transplant Games again. I also want to be able to do more for Love Life; Gift Life and help us transform organ donation in this country. Right now I'm still being monitored EXTREMELY CLOSELY, as all of this is a first and my Dr is being super vigilant. But at least all these dreams have a chance of becoming a reality now, thanks to my donor family. I have so much love for them that I can't actually put it into words (although I will try when I write them a Thank You letter). Thinking of them every day in their time of grief, especially with the holidays coming up :-(

New pill progress and RIP Emma kitty

Firstly, Friday was 9 years 8 months with the borrowed breathers. Go lungs go! Every month I wonder if this is the last month that I'm celebrating the lungaversary with these lungs. However they continue to carry me and I'm so grateful for that. 

Since starting the new blood pressure medication my heart rate has dropped tremendously. My Fitbit's strap broke, so I haven't worn it since Sunday or so, but in the first week of being on Concor my heart rate has dropped 20 beats per minute! And it has dropped even more since then. So that has made me feel a lot better. I'm still very out of breath when moving around but at least my heart feels less like it's busy exploding. And that's always a good thing. It's kind of scary what a tiny little pill can do... I have slightly more energy too I think, although I hope I didn't just jinx it by saying that. My last sputum sample that I did 2 weeks ago showed Pseudomonas again, but since my infection count was really low we're just carrying on with the antibiotic nebs.

My parents have had to put my old cat Emma down just after my last blog post... :-( I got Emma in April 1999. She was a very difficult cat, who bullied all the cats who came after her... so much so that for a period of 9 months we had to let her stay with the breeder again until the new kitten we got grew up. She loved my sis much more than she loved me, although if there was no one else for her to sit on she would sit with me. The below pic was taken in December last year. Ten years ago when I was waiting for my transplant I never thought that I would out-live Emma. She had become blind and her kidneys were failing unfortunately. She has also (ironically) never been the same after the other cat Lily (who she almost killed) died about 2 years ago. RIP Emma kitty.

Not much else has been happening. Time seems like a bit of a blur. I'm a little bit in shock by the fact that it's almost October. Adriaan has been adorable as per usual. The kitties keep us amused.

Oh almost forgot, I went to see Jessica at her photopheresis session yesterday in Pretoria. Also wanted to say hi to the "vein whisperer" Cecelia who made my 24 treatments so much more bearable. I'm their longest surviving photopheresis patient so far it seems (I think I was the second lung transplant patient who had this... not sure... but def one of the first here in SA.)! Very strange to think that! The treatment never improved my lung function or kept it stable immediately, but it did slow down the decline of my lung function significantly. So it was successful! Can't believe it's been more than 4 years since I started the treatment back in 2013. It's been a crazy few years...

Lungies GOT THE MEMO!!!!! Finally!

So Thursday was my lung check-up. The last one was 11 May when I was sick. Then FEV1 was 38% (I felt so crappy at the time that 38% seemed too high for me) and volume was 83% (also lowest it's ever been.). Bloods also showed infection and I had a temperature then. I was put on an oral antibiotic called Avalon for 2 weeks, higher dose of prednisone for a few days and my Dr gave me 2 inhalers to use, Foxair and Forvent. I've used Foxair previously when I was having the photopheresis treatment, but it made no difference so I asked if I can stop it, as it was hurting my tongue, costing me money, and seemed to be a waste of time.

However my Dr decided to try it again in combination with the Forvent (which is a capsule filled with powder that you manually insert into the inhaler and puncture it to inhale the powder). When I asked why, as the Foxair did nothing last time, he just said "humour me" :-) Got to love him and his scientific explanations :-p (don't think he will read this LOL)

My lungs have definitely been feeling way better since then, but I didn't expect much from the lung function, as the numbers don't always reflect how I FEEL. So when I got 46% FEV1 on the first blow, I was really blown away... (OK bad pun). Didn't even try again (sometimes I try up to 3 times). Volume was 94%, also 11% up. That's about where I was last year when Anna and Casey came to visit in Cape Town. (coincidence.....??? I think not). Needless to say, Dr was very happy. Bloods were all great too. Increase in lung function could possible be due to the inhalers, but we won't know for sure. I'm just going to carry on with them obviously. Weight same at 56kg. Resting O2 sats were 94%, which is fine, but they dropped to 85% after the 6 min power-walk test. That's the same as when I was sick. It jumps up back to normal really fast though, so no-one seems too worried about it.

Needless to say, the week was BUSY, with month-end, and going to the hosp twice after work, once for the bloods and next day for the check-up. Of course both of these also carry with them a certain amount of STRESS, and I can feel it!!!! SOOOOO TIRED right now, could literally not keep eyes open last night and pretty much today as well. Hoping I feel better tomorrow because I'm going to need some energy for next week again! Monday is dentist (scared as shit) and Wednesday is mom's birthday! Did some shopping today and had tea with mom and sis at Vovo Telo, so it's been a good day. Tomorrow is Fawny and Sasha's combined birthday lunch, which is going to be AWESOME.

Charlene (who got her lungs last week Tuesday) is doing GREAT! She is out of ICU and I will be visiting her very soon!!!! Can't wait to see her all pink-ed up!

PS.... some lung terminology explanation.... FEV1 is the amount of air that you can blow out in one second. So one could almost say it's you lung "power". FVC or volume is how much air goes into your lungs. With my old CF lungs both of these were pretty low in the end. However the chronic rejection I have now is completely different, as it causes obstruction in the small airways... so my total lung volume is not down by that much (best ever was 113% I think, so in total it was dropped about 20%, but is still good at 94% or even in the 80's). However, my FEV1 has dropped from 103%, so the amount of power my lungs have has dropped by more than half. That's why I get short of breath more than I used to and feel like I have less energy in general.

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.

August!!!!

It's the crazy happy month of August!! Let's see... Wedding Anniversary on the 7th, speaking at Fawn's Charitea on the 9th, spring starts, it's Organ Donation awareness month AND my last month of being a 20-something year old!!! So a very exciting month!!

A year ago (well on the 12th of Aug) I started photopheresis. A pretty scary time. Today I'm pretty proud to say that I completed 24 sessions of it without any catheters or ports and such permanent lines (well done veins!!!), and didn't stop working, even though the vibe that I got from facebook support groups is that working while having this is nearly impossible as it makes you sooo tired and immune supressed etc. So that's great.

Had a very medical week... Had gynae check-up that went very well... no abnormal cells (in 2009-2011 I had about 3 cauterisation and other procedures on my cervix due to abnormal cells that could become cancerous) I have known post transplant people who have died from cancer so it was a worry. However all has been good since then and last 2 pap smears were NORMAL. Dr is "chuffed". So yay!

The bone density also went well. My previous one was about 8 or 9 years ago, in PE, so they couldn't compare the results accurately, but from what I can remember it has improved as my Dr thought it would. This is due to exercise and being much more active than all those years ago and being on less steroids since transplant than I used to be on pre-transplant. I have also been on meds for bone density before but at the moment all I have been prescribed are Calcium and Vit D, plus exercise. So that's also great news.

Dentist had to replace 2 old fillings. Was the least "fun" medical visit. Still feels weird now when I bite down and might have to go back to have something adjusted if it doesn't get better. Annoying but as far as medical problems go not a biggie.

Tomorrow I'm going to the quaterly transplant network meeting, and gym. Sunday having nice lunch with special friends, Not much else planned.

Have a good weekend!!!

Pretty good lungaversary check-up

Tuesday's check-up on my 6 year 6 months lungaversary went well. Lungfunction was 52% FEV1 and 95% FVC (capacity). So all in all a 1% drop in 2 months... not bad. Rest was all good. Best part was that my friend Fawn was also there for check-up which made the hours and hours of waiting (hopefully Dr doesn't read this LOL) a lot better. Seems thus far that the photopheresis worked ... if lungs stay stable like they seem to be. Next check-up is 28 Aug... 3 days before I turn 30! Can't believe I'm facing my last month as a 20-something year old. Amazing and a bit surreal.

This weekend we celebrate my little sister's 27th birthday (on 29th of Jul) and I'm also doing a 8km Discover Walk the Talk.... My lungs will probably hate the uphill... but will just slow down for those. Also hoping to train for the Nationals with the coach from next week (will be doing shot-put and discus) as it's getting closer!

Have a good weekend.

53% again... yay

Lung function was stable yesterday at 53%... same as last time (although used a different machine). So that's good!! Weight down a bit - need to eat more I guess, and blood pressure meds have been increased. I also did 6 min walk test (in boots... not best idea ever, shins sore today!). At then end of test SATS were 85% (but went up again quickly) and HR 160. The last time I did the test was 11 months ago, when SATS were 90% afterwards and HR was 145. At that time lung func was also 69% still. Dr is happy with the stable result, he thinks that the photopheresis worked. Curious to see what it will be like next month.

In other news, I got a new pair of glasses, been working hard, been bad at gymming, and very glad it's weekend! Below is also ladybird I was on Sunday.... some people say they're good luck... I'm not superstitious, but it was cute anyway. On our way out now to supper at Dopio Zero with sis and Pierre. It's the weeeeekend baby!!!!

6 years 4 months

Yesterday was 6 years 4 months post tx, yay! Didn't have a great day though. Most of the days this week weren't great. It's just been a strange week anticipating next week's final photopheresis and lung function & check-up. Went to gym on Tuesday and it was pretty crappy again, bleh. So really curious what lung function will be. Not stressed about it much at least!

Not much planned for this weekend apart from lots of domestic stuff.... all 3 kitties have to get vaccinations, need to go to supermarket, butcher and fruit&veg shop, gym and supper with my folks tomorrow eve. On Sunday I need to have bloods done for Wednesday's check-up and somewhere in between get laundry done too! BUT in 2 weeks time I'm in Cape Town for my friend's party!!! So yay!!!

Have a good weekend.... or at least a productive one like me!

Mid-holiday and health update





We had 3 days of admin in Joburg before our next trip which starts tomorrow. While driving up on Tuesday it started feeling like my cold was back. Sore throat and increasingly snotty nose. Luckily I had the Drs appointment on Wednesday scheduled. Lung function was 55% FEV1 and 94% capacity (FVC). Dr said I shouldn't pay any attention to it as I'm sick (verdict was mild chest infection basically and new antibiotics given). Being on 5 immune-suppressants has it's down-side :-( Weight up with another kg at least which puts me at 58kg, which is a very good place to be for me, so yay!

 

Luckily I could still do photo on Thursday. Everything went fine, apart from 4 attempts to get the 2 drips in. When they put the thick needle in (where arm bends) blood started SPURTING out all over the place. You can see a bit of it on the pic below, that was taken after blood was cleaned off my arm and most of the bed. NOW ONLY ONE TREATMENT LEFT. CANNOT WAIT for it to be over.

 

Felt a lot better today luckily, so antibiotics must be working. Also started malaria pills today (we're not going to a high risk area and it's not summer but just being extra careful - so please don't comment that I shouldn't be taking these kind of risks!) Did all the shopping for our trip and kitties have been dropped off at the cattery. Tomorrow morning just after 6am we will hit the road! Part of the cool thing about this trip is that there is no electricity... so with the old lungs I could never go there as I wouldn't have been able to do my nebulisers or use oxygen (in the period closed to transplant). So I'll never take for granted not needing electricity to stay alive!

 

 

Positive things

The week started on a rough note... on Monday morning my car's battery was flat so I couldn't drive myself to work :-( Luckily it got sorted without too much hassle. Also my on-again-off-again cold turned into something a bit more serious, so decided to see my Dr today. I'm glad I did because a) got antibiotics so that I'm ready for holiday, b) it has been decided that I will skip photopheresis this week and spread my last 2 sessions over 2 months.... so end of April and end of May. and c) for the first time in at least a year and a half lung function did NOT drop at all. Not the normal 1 or 2% drop of late. Did 3 attempts and all were exactly the same, 58% FEV1% and I think the FVC was 97%, slightly up. So week has definitely improved from yesterday.

 

Now just to survive 3 days at work and then BLISS! The pics below are from work (apart from the kitty one obviously). Our new financial year started on 1 April so we all got a balloon and a muffin. (Purple and white are the Co colours)



 

Below 60... eeekkkk

So yesterday's check-up went great in terms of bloods and blood pressure and O2 sats and weight (gained 2kg, yay) etc.... but not so much the lung function. FEV1% is now 58%.... was hoping it wouldn't drop below 60% but it did. So the trend of a 2% drop per month continues... I have 3 sessions of photopheresis left (last one on 24 April)... after which  would have had 24 sessions. For now I won't be continuing with that, as 24 sessions are the standard and doing more than that probably wouldn't be of much benefit. So the plan is to continue testing my lung function every month and basically take it as it comes in terms of other treatment options.

I must say I'm surprisingly OK with it all. Glad to be finishing the photo in terms of my veins and sick leave (or lack thereof!!!) and the logistics of going to Pretoria every 2 weeks. Will miss the staff there though. Also so excited about our holiday coming closer (9 working days left!!!) that nothing can really upset me right now. My action plan is as follows:

• carry on eating enough and keeping weight on
• gym as much as possible and staying fit (weight training going well, cardio not so much...)
• RELAX AND ENJOY our holiday
• be ready for what the lungs may decide to do next... continue declining slowly or stabilizing properly??? And do what needs to be done.

This weekend I'm going to Cape Town as mentioned in last post and then Monday photophresis. Have a good weekend!

Another week closer to holiday....

Not much to report on.... only good thing about the week is that work was OK and in total I've been to gym 4 times since Sat. So that's good!

Saw psychiatrist on Monday, he is happy that anxiety is under control and don't have to see him again for 6 months. Had photo #21 on Wednesday, and it didn't involve any unnecessary needle pricks which is always a plus. I only have 3 more treatments left for this session of 12... so my Dr needs to decide how treatment will commence from here, which is a bit scary. Going for lung function again on 26th which will obviously influence their decision too!

Woke up with sore throat this morning but at least it's weekend now so hopefully by Monday it's all gone. No other plans yet for the weekend, just some things that I want to get done before the holiday and hopefully it stops raining!!! (It's been wet and miserable for more than 2 weeks now!!)

MARCH!!!

It's March!!! Pretty much Autumn.... Which means our Amazing April holiday is coming closer... yay! (We leave here on the 12th of April for 10 days at Storms River Mouth - my happy place - a few days back in JHB and then 5 nights at Mapungubwe with my fam...altogether 3 weeks off!!!)

This week was fine, check-up was OK, all bloods perfect and everything looks and sounds great, lung function down a tiny bit again, FEV1% now sitting at 60%. FVC (capacity) at 96%. Diffusion was up a bit (can't remember the %).

Photopheresis went fine, but if I am to continue with this indefinitely then they might need to start making a plan in terms of accessing my veins. Not sure how long big vein in arm will last and they cannot use groin indefinitely. So will see what happens....

Last night we went to see a stand-up comedian Trevor Noah at Montecasino, and tonight we will be going to Gold Reef City to see Nik Rabinowitz, also a VERY funny guy! So it's pretty much comedy weekend! I was also supposed to go back to gym today after being off for quite a while, but after doing grocery shopping in some heavy rain I have been soooo lazy! So tomorrow I HAVE to go...

Next week is month-end again :-(... which means working longer hours than usual and no time for gym usually. Louzanne (one of best friends from school who lives in Stellenbosch) will also be sleeping over by us on Monday eve, YAY!!! so that will def make the week a lot better!

Weekend, check-up and feeling meh

Had a great weekend... supper at my friend Andrew's place on Friday eve, and on Sat we swam at his place and had a braai (BBQ). Had supper with parents on Sunday and went to church. So all in all a great weekend.

Check up and lung functions went great on Monday. Lung function stable and bloods/x-rays were normal. Yesterday's photo was also fine. The plan seems to be that from April onwards I will be going once a month. However since Monday eve I have been feeling nauseous and slightly feverish. Bloods were all fine when they tested it yesterday but still not feeling great. Left work early today and trying to relax now. Hopefully tomorrow I'll be better! Or at least worse so that I can do something about it instead if being in sick-limbo like this!

The sunrise pic below I took on my way to work this morning!

Survived the week!!

Tough week = survived! Photo was fine yesterday... once the line was in... getting to that point however was a bit of hell. They couldn't fine a co-operating vein in my arm or hand, so eventually I begged for a femoral (groin) line. That was much better even though it's more risky and means 5 days of no gym afterwards. Hopefully by my next session, which will be on my 6 year lungaversary, arm has healed...

Work's deadlines were also met... so even though it wasn't a great week it was successful. One of my old friends from PE bought a new house in JHB, so tomorrow is the housewarming!! Can't wait to see everyone who went away on holiday again! Jozi was quiet without them. Hoping the weekend will be way better than the week was.

Lung Function results

So my hectic week started with a slight change of plan... Dr's appointment was yesterday instead of Friday. At least I didn't have to spend the week stressing about it I guess. Result - same as last few months... down a tiny bit just to prevent me from being less worried, because that can't be allowed obviously *sigh*. FEV1% and FVC% was down by 1%, to 62% and 99% respectively. Dr says it's no change. So since photopheresis started in August FVC (capacity) has stayed the same and FEV1% has gone from 69% to 62%. So deterioration has slowed down and photopheresis still seen as "successful", even though I hoped for an increase in lung function and not this "kind-of| stability. But it could have been a lot worse as I've seen from other facebook friends who had much worse results after photo than me and are either heading towards second transplants or have already had second .

Tomorrow is the last day of month-end and also the most crazy. If I survive that the worst of my week is over. And of course Thursday is session #17 of the photo. My sis will be coming with me again and hopefully my favourite nurse is back, she was sick last time.

Then it's weekend, YAY!!!!

Crap week so far.

So this week has been crap... Lung function down another 2%... which now puts it at 63% FEV1%. FVC (volume) 100%. Very disappointed... just doesn't want to go up or STOP going down, even if deterioration has slowed down. Feels like there is no point in going to gym and working out anymore but I know I'll persist. UUGGGHHHHH

Photopheresis was fine today. No hassles and they used the new machines on me for the first time today... apparently it does a better and more accurate harvest. So that's cool.

Now just to survive another 3 days of work then then off to PE for some FUN. Much needed fun.

DECEMBER!!!!!!!!!!!!!!!!!!!!!!!!!!!

December is here at last!!!!!! After a pretty crap year, yay!!!! This week is going to be hell at work but at least there is light at the end of the tunnel! This past week has been fine, photopheresis went fine... once the needles were in! Getting the big needle in was a different story... UGH, let's just say I am BRUISED again :-( Thursday I went for an impulsive hair appointment and had hair dyed! The pic doesn't show the colour accurately but it's got more red in. They also straightened it which looks really nice but IMPOSSIBLE for me to maintain... starts curling again after like an hour! But fine for special occasions :-)

We also went to watch The Nutcracker ballet on Friday eve... it was my first ballet and I enjoyed it A LOT. I've known the music since I was at school and it was so nice to finally see the "big picture". Very cool. Yesterday we had lunch with friends that are moving down to PE for the last time... we will miss them and their CUTE twin boys so much! But at least my sis and Pierre also drove up yesterday and Pierre is starting work on Monday so he has officially moved up to Jozi now.

My sis drove up with him yesterday and flew back today... so we had lunch at my parents place today and just came back from dropping my sis off at the airport. But at least in 2 weeks time I'll be there in PE with her packing up the last of their stuff! And next weekend we get the kitty! YAY!!!!!!!