Day 70

Shane is making steady progress. He's still recovering from his most recent bout of GVHD of the skin. His skin is no longer painful, but he's shedding a layer like a snake, but unfortunately its not in one piece and not so easy to clean up!

Bloods are all normal (ish) and the doctors seem to be happy with his progress so far. Steroids are now down to 25mg (from 175 originally). He's getting closer to stopping them completely, but he's also suffering from considerable fatigue. When he first came out of hospital, he worked hard to avoid sleeping during the day, so he could sleep well at night. At the moment, Shane has at least two sleeps a day, as well as sleeping a lot at night. If he has a day where he's out, he needs a day to recover afterwards. He tries to assist around the house, but its hard work for him to do even the simplest things.

I have been encouraging him to get out for some walks. We even went for a bike ride last sunday. Shane gets so sore the next day, and we only go really short distances. Getting him reconditioned is going to be challenging to say the least!

As far as tastes go, he can taste everything now, but it doesn't taste the same. My other challenge at the moment is getting him to eat more of the good stuff, and less of the crap stuff. But its so damned hard to say no to those big brown eyes! "Whatever Shaney wants, Shaney gets" is my current mantra. So if he wants a packet of biscuits, he gets a packet of biscuits (especially if my mum is caring for him!).

Sorry these blog posts have been sparse of late. Honestly, I haven't really been in the right headspace for it, or had the time for that matter. While Shane is ok sometimes to help out, its inconsistent, and that leaves me to pick up the pieces. This is fine if Im prepared for it, but not so easy if its unexpected.

Psychologically, a set-back like GVHD can make coping with the whole scenario that much more difficult. Considering I am prepared for most situations where I know exactly what to do, GVHD left me high and dry. I felt powerless to help. There was no simple solution and Shane wasn't prepared to try anything. In these moments, accepting our situation is really difficult. Things like "I wish" and "if only this didn't happen" kept popping up. The moment you start thinking "why me" is when the world falls apart around you. You just have to get up, wipe off your knees and keep going. The recovery from the psychological wound can take a lot longer to heal than the physical one.

We are still really grateful for the assistance that those around us give. We are getting lots of practical help which makes life so much easier. We thank each and every one of you for the support you give us. Even the simplest things like your well wishes make the world of difference to us.

Peace.

xx

Day 56

This week has been a tough one.

Last Friday I mentioned Shane had GVHD of the skin again. What we didn't know was how bad it could get. Remember that this is not a new experience for Shane, he had this in the early stages following his transplant. The differences this time around are:
a) This time Shane was at home, not in the hospital with a bunch of Drs and nurses at his beck and call.
b) Last time Shane was well doped up on pain meds from his sore mouth and throat.
c) Last time it didn't hurt or itch, despite it looking awful.
d) Last time Shane was treated immediately with high dose steroids, so it only looked mean and nasty for a day or two.
e) Last time Shane was in a well air-conditioned hospital room that wasn't at the mercy of the elements.

This experience was very different.

It occurred because the Drs have been gradually reducing Shane's steroids. The problem with steroids is that you can't stay on them for too long as they have really bad side effects in the long term (which aren't as bad as GVHD, so keep that in mind). So they were unable to increase the steroids to treat it, so they started a new immunosuppresant, which takes 7-10 days to come into effect.

As you could imagine, this rash was red, raw and itchy. Whenever Shane moved, even the tiniest amount of sweat would send him into an itching frenzy. Being cool, and staying still was his best defence. So, for the last week or so, he hasn't moved from the lounge, except for trips to hospital.

The worst part was the pain. It took us completely by surprise. I never really thought about how a rash could cause pain - except in the case of sunburn, or open wounds. This rash produced sharp, piercing pains all over Shane's body whenever he moved. This pain occurred in places where his rash wasn't too bad, which had us really baffled.  

This GVHD of the skin wasn't even considered a severe case. Eeek!

So our weekend was absolutely miserable. We were stuck in a limbo of the unknown. It didn't seem severe enough to go back to hospital, but the discomfort on Shane's part was unbearable to watch.

By Monday though, the rash virtually disappeared. The new immunosuppresant must have kicked in just in time. However, even though the rash wasn't obvious, the pain and discomfort were still present. Fortunately this has been subsiding the last few days.

Before the transplant, the Drs said that they gradually reduce the immunosuppression until he's off it completely. This process usually takes 6-9months. Its amazing to even think that Shane would be able to live without it! But this week has made me realise that there are going to be many more weeks like this one as the medication is gradually reduced. Even though the first 100 days are very crucial, Shane won't be "better" straight afterwards. It will take years before Shane recovers.

xx

Day 50!!

I can't believe that we are halfway through already! Its crazy to think about how far we have come, but its quite overwhelming thinking about how far we still have to go.

This week has bought challenges that were not entirely unexpected. On Sunday Shane's GVHD started to show itself in his skin again. Each day it has progressively increased to a point where he is now covered from top to bottom in a hot, red, itchy rash! This has been expected as Shane has been progressively reducing his steroids (which are used to treat GVHD). The problem now is the Drs are reluctant to increase them back up to a level that will treat the GVHD as effectively as last time. This means he's now on another medication, and his Tacro (immunosuppresant) has been increased, considerably.

Although Shane has had skin GVHD before, this time he's not knocked out on pain killers, so he's more acutely aware of the discomfort. He's finding that if he gets hot, it feels so much worse. So he's just been laying low all week, at home, in the air-conditioning. Today the Dr gave him some Phenergan to help with the symptoms which has conveniently made him drowsy.

Another challenge this week was finding out that Shane's Cytomegalovirus (CMV) has been reactivated so Shane was reconnected to the pump and the bag that must go everywhere with him. Again the nurses were really thoughtful about the time it goes off - 1:15am/pm! Thanks guys! But thats not the only issue, today Shane had his check up and it turns out, the pump was faulty and didn't administer any of his medication this whole week. So he's been carrying this thing around since Tuesday, for no reason, and the 10day (minimum) treatment needs to start all over again! Bummer!

I would like to take a moment to mention a friend of mine from Uni who's wife passed away this week from Motor Neurone Disease. This is such a horrible condition for people to suffer from, with not much in the way of effective treatment. Stacy was an incredible personality who truly cherished life. This world is a more wonderful place after having her influence here. Her family has asked us all to "live like Stacy would".

So, what would you change about your life today if you were challenged about your health? If you were diagnosed with a serious medical condition, what would you change? How and why would you change? What would you do thats been on your bucket list for a long time?

And more importantly, what is stopping you from changing now? Why do you need to be given a diagnosis before you step up and take good care of yourself?    

Something to think about...

xx

Day 43

Surprise! We're still here! I haven't done many blog updates lately for a few reasons:

1. There really isn't much to blog about.
2. I've had my nose in a good book.

Shane is going really well. Today he dropped his steroids down to 50mg so not long now and he'll be off them. Remember the steroids are working to keep Graft vs Host disease (GVHD) at bay. Shane's skin has improved, but it did something strange last weekend. I noticed on Saturday that he had a tan. Which was a bit strange as he hadn't spent any time outside, and there really was no sun to get a tan in. The next day most of his skin peeled off. So I think pigment changes are going to be one of the few clues we can have for presence of GVHD. The long term effect of being on steroids is starting to show in Shane's looks. He suffers from a condition called "Cushings syndrome"which is characterised by round face and fatty deposits around the body. For most people it just looks like Shane has put on weight. But the truth is its the steroids.

As for everything else, Shane's platelets were still low today, but are expected to pick up soon. Some of his meds were changed around this week as they were interacting a little too much. This was picked up by blood tests rather than Shane actually noticing anything.

Hygiene is so important for Shane's protection. Each week I clean the house down from head to toe including all the light switches, remote controls and mobile phones. Shane has been given very strict guidelines about food hygiene, oral hygiene and personal hygiene.

The preparation of food is vital as food not cooked well can be dangerous. Food needs to be reheated to 75 degrees to kill any germs. Meat and poultry should be well cooked, raw foods need to be washed thoroughly and/ or peeled, and Shane needs to adhere to a "pregnancy" diet - i.e. no soft cheeses, raw mushrooms or deli meats.

Excellent oral hygiene is also important. Your mouth is a breeding ground for bacteria which is why Shane needs to continue his mouth washes up to four times a day as well as usual brushing.

Personal hygiene is obvious. Regular showering, clean clothes, clean environment, regular hand washing etc. We always wash our hands, almost a hundred times a day it feels like! Clothes are washed in water over 60 degrees to kill germs, the same as our dishes when washed in the dishwasher.

There three main ways to spread germs:

1. Airborne droplets - for example sneezing or coughing. One of the easiest ways to prevent this is just basic manners. Cover your mouth when you cough/sneeze, turn your head away from others, and wash you're hands afterwards (always!).

2. Skin to skin contact - someone carrying a bug can touch you directly (example kissing) and you can contract the bug also. The best ways to prevent this is by staying away from others when you / they are unwell. This means avoiding other people when unwell and regular hand washing - especially after touching you're nose or mouth.

3. Skin to object - this happens when someone who is unwell touches something like the elevator button, then you touch it afterwards. Again, regular hand washing is so important. We have to be so vigilant. The smallest little slip up means that Shane is back in hospital.

A classic example of poor hygiene was in the news this week with the lead singer of frenzal rhomb having a pig tape worm removed from his brain after suffering seizures. This was crazy because this guy is a vegetarian and obviously doesn't eat pig meat. Drs believe he ingested an egg after a person he bought a burrito off had eaten poorly cooked ham, grown a tape worm himself, and then didn't wash is hands properly after going to the toilet. Gross!

Tonight we ventured out for dinner. Now that Shane's taste buds are making a return to normality we can start eating some of our favourite foods! He even had an alcoholic beverage (or half of one)!
  
Well, thats about all from us this week!

Hope all is peaches at your place!

Peace

xx