The Eye

Yep, just when you thought this roller coaster was starting to coast! Shaney yet again threw a spanner in the works.

Last weekend, on our wonderful weekend away, Shane started to report some visual disturbances. On Sunday, he awoke with an eye bright red and bulging out of his head. It was painful initially, but mostly because he kept rubbing it. As soon he stopped, there was no more pain.

So on Tuesday during his regular visit to his Haemotologist, he mentioned his eye. Dr Curley mentioned that he could see some "floaters" in his eye, but thought he'd send Shane to see the Opthalmologist (eye specialist) for further investigation.

The result: An eye virus.

Who gets a virus in their eye?

Clearly Shane does.

This picture to the right is his right eye. You can see the large patch of white and small clumps of blood vessels around it. This is the viral infection. You can also see how fuzzy the picture is. This means there's a lot of white blood cells "floating" around Shane's eye. This picture was taken on Tuesday when shane's eye pressure was 35 (optimal range being 10-21).

 This picture to the left was taken today. The infection is still present in the same surface area, but the picture is clearer, and from some of the other tests, the Dr can tell there has been some improvement in the thickness of this matter and a reduction in "floaters". Eye pressure today was 19 - finally within normal range.

This picture isn't very clear, but if you look closely, Shane's pupils are different sizes! He has to take some drops each day that prevent him from dilating his pupils to prevent any scaring of the eye tissue. He's just a little freaky to look at!

The virus is a re-activation of the Cytomegalo virus (CMV). If you remember, CMV reared its ugly head just as Shane was due to be discharged back in January.

CMV is treated by Gancyclovir, administered through IV. This treatment is needed for 2-3 weeks depending on how the virus responds.

This means, Shane was admitted back into the RBH, and had another PICC line put into his arm. He is still there today, but we're hoping he may be released early this week, with a pump to take home... Again.

Shane is also seeing the Ophthalmologists daily. Some of these photos are of the equipment they use. Very technical!  


 I thought we had been in just about every ward in the hospital by now. But no, this time, Shane has made it into Wattlebrae - Infectious Diseases. This is due to his VRE. He has a room to himself there, so he's not exposed to others, but the tea room there is open to anyone staying in infectious diseases, which is not ideal for a transplant patient.

Fortunately, Shane has been able to come home on day passes for the last few days. This makes meals much easier for us. Shane is unable to eat the hospital food (how long could you survive on that crap?), and without access to a tea room, it makes life quite tricky for us!

The most stressful part of the week was wondering if he was going to be able to make it to our friends wedding on Friday. He was able to come to the ceremony, but I had to take him back to the hospital for his evening treatment. Thanks so much to Lozzy who became Shaney's doppleganger for the evening! You did a wonderful job channeling "Shaggytron"!

A big congratz to Robby and Katie on their special day. It was a great wedding and really reflected your warm and relaxed personalities! Hope you have an amazing time on your honeymoon!

xx

Weekend away and the end of Steroids (for now)

Last weekend we finally had some time away. We stayed at Sunrise beach for the Post-Code Challenge - Primitive Surf's annual surf comp. We have been going since its inception and it is awesome to see how far it has come along. The weekend is great as everyone stays across the road. 

It was so nice to chill out with our surfing mates who we haven't seen in a long time. In a way we have been locked away from our usual friendships due to our inability to get out and about. Especially the surfing community. We only really see these guys when we go surfing. They are such a great source of fun and friendship, but we miss them when we have periods of time out of the water. 

 I had a great time surfing. Each morning I got up early (ish) and had a paddle before shane woke up. The weather was amazing! Beautiful, sunny skies graced us all weekend and the water was clean and glassy. There wasn't much wind around either. It was a great opportunity to practice some mindfulness techniques. I haven't been so great at looking after my psychological state lately and having such a wonderful opportunity to practice makes a big difference in how I cope with our situation. I thoroughly enjoyed focusing on how it felt to be in the water, at how the water bubbles dissipated off my hand after a wave rolled through, how the warmth of the sun felt on my face. This helps reduce anxiety prevents me worrying about Shane all the time!

It was so great to support the guys from Primitive surf. They have been so supportive of us over the years. A huge thanks goes to all those guys. Love you all heaps!

The other milestone of this weekend was that Shane finally stopped his steroids! He had been on them since January - a whopping 200mg then he gradually reduced them weekly ever since. The steroids have a lot of unpleasant side effects, which is why they are the first immunosuppresant to removed from the equation. This is most likely not the end of the steroids, but its the end for now. 

What we didn't realise was that this weekend, Shane had another surprise for us...

xx

First Week of Freedom

This week has been a busy one! Shane's energy is gradually gracing us with its presence!

Medically everything is going really well. Steroids are dropping down to 2.5mg today which means that next week they'll be gone!

Last weekend we finally got in the water. Although it was a beautiful, glassy day and there wasn't that much swell, there was plenty of sweep in the water. It was a struggle to walk / paddle out against the sweep and poor Shane's arms gave way when he went to duck-dive! When we finally got out the back, behind the waves, there was a really strong sweep heading back the other way, so needless to say we were swept up the beach quite quickly. Shane just didn't have any strength to paddle continuously against it. We eventually paddled back in and I left Shane on the beach to surf again. We might have been at the beach for maybe half an hour, but it was so worth the trip up!

Shane has been much more motivated to exercise this week. He's so keen to get back in the water for a decent surf. If you don't surf, or don't have a passion that drives you, you won't understand. For surfers, you do anything and everything to get back there again. Time away from the water is like torture. This gives us plenty of motivation to improve Shane's fitness.

With improved energy, we see Shane's personality come to light. When fatigued, Shane's sense of humour disappears. For those that know us, understand that Shane and I are larrikins, and love a good laugh. This week there has been plenty of laughter, and good humoured banter. I have missed this so much. During times of struggle, humour has always kept us afloat, but this time, my attempts to keep Shane smiling have often gone unnoticed, or even rejected:( So you can understand why I am so happy to have this part of him back to normal!

He told me a joke this week before we went to sleep - and it kept us giggling like school girls for ages after:

"A dyslexic walks into a bra"

... Yep, he's still talking about that joke.

 xx

Test Results

Now that we don't have to count the days, I'm at a loss of what to call each blog post!

This last week has been a busy one. There is a whole gamete of tests that are done before and after the transplant. This includes lung function, ECG, specialised blood tests, dermatologist, chest X-ray, Dentist, Bone Marrow Asperate (BMA). Monday and Tuesday were very busy with getting to all of these appointments. Thanks to Ash for keeping Shane company on Monday, and taking this classic pic of Shane in his dental eyewear glory!

So, after having all these tests, there is the long and anxious wait for the results.

Friday was spent waiting all day at the hospital. Each time the Doctor opened his door, my heart skipped a beat. When finally we were in to see the Doctor he was able to run us through all the results.

• Usual blood tests were normal
• Kidney and Liver function were all fine
• CMV negative
• Lung function has improved
• ECG normal
• Teeth are fine
• Skin a little problematic 
• Warts on hand removed
• BMA clear - phew! 

Immunology results were interesting. There are a variety of cells responsible for immune response. These include B-cells (which are the type of cell that have been warped in Shane), T-cells (usually responsible for GVHD), NK-cells (Natural Killer cells - good for graft vs leukaemia effect). Despite being on a considerable amount of immunosuppression, Shane has no B-cells, some T-cells and a good amount of NK-cells. Dr Cam Curley appeared to be happy with this result. Good NK-cell numbers appears to equal better long term survival. 

So all this good news meant only one thing: 

NO MORE PICC LINE!!!

Warning, although not gory, its not for the faint-hearted either! (hopefully this video works! Otherwise I'll post it to FB).

The PICC line is the most prominent reminder about Shane's current predicament. Without that line, he is no longer defined as a Cancer patient, but as Shane Prosser. 

The Man.