In a bit of a dark mood today, so I thought it might be a good opportunity to write, as this blog is supposed to be a “warts and all” story. Have been finding myself in bad moods a lot recently, and just feeling a little down about things. I am finding that I am actually having trouble coping with certain things, and I’m sure you can imagine that this can be affecting the various facets of my life.
I think (in fact I know) that my posts have been generally upbeat – mostly because my experience with transplant has been a positive experience. What hasn’t been disclosed is the down side to illness and transplant.
Unfortunately, for all the people in life who ARE supportive and caring, there are those who come into life who perhaps haven’t been exposed to illness, especially illness so serious that it requires major surgery to treat. The loss of relationships throughout serious illness is extremely common, but rarely addressed, and it is these breakdowns that tend to affect us the most.
Having said that, I have also found it hard to cope with the members of my support crew who have been surprised when I have gotten sick over the past three months. As well as you educate people on how serious “minor” things like a cold can be for a transplant recipient, it’s still a shock for them when you end up in hospital. I think a lot of it is a lack of understanding, but nevertheless it’s hard not to get a little annoyed when someone says “you’re sick AGAIN? I thought you had a transplant?”
The financial burden placed on a family affected by serious illness is also something that is acknowledged, but little is actually done. There is support in the form of welfare payments, but I have found in my experience that my illness and need for transplant didn’t quite fit into all of Centrelink’s boxes, and I therefore have fallen through the system, which then causes further financial strain on my family. In my case, I already feel that I am enough of a burden on my loved ones, and having to rely on just one income for the past four and a half years has been extremely challenging. Thankfully I have had my transplant and it has been (so far) successful, and while I know that I should be looking after myself there is still a form of indirect pressure for me to contribute financially.
The financial struggle that I have faced is surely nothing compared to some of the problems faced by other recipients and those waiting on the list. Having to travel interstate to be close to the transplant hospital, uprooting family members who also have to give up their lives and sometimes work in order to support the sick patient and even having to travel several hours to attend specialist appointments all come part and parcel with the need for a transplant, and that doesn’t include accommodation needs while recovering – especially if you don’t live anywhere near the transplant hospital.
The sheer amount of medication can be overwhelming at times, as can remembering to take them on time! It is definitely a better alternative to constant hospital visits, restrictions, test and needles, but on some days, it’s a struggle, especially once some of the side effects rear their nasty heads. For me, I think the two main culprits have been an anti-rejection drug and steroids. I heard the term “roid rage” a few days ago at clinic, and as soon as I did I could finally put my finger on some recent strange behaviour. I’ve found that I have been moody and irritable, and even sometimes getting upset and angry for no particular reason. It’s hard to explain to someone who isn’t going through the same thing that it is drug-related, as it just sounds like an excuse. Thankfully, my physician has informed me that as the dose of steroids goes down, so will the mood swings. Just can’t wait for that!
There are apparently a few differing side effects from the particular anti-rejection drug I am taking, but for me, the worst has been hair loss. I vow I will NEVER AGAIN tease my Dad about being bald – it’s a horrible feeling to stand in the shower and have hair falling down the drain. This has been a major issue personally, since I have already had some body issue problems (in previous blog) and also because I am female. Am upset about this on a regular basis, but this too should resolve once medication doses come down. It’s just hard to feel good about yourself some days.
I guess that being so ill for so long and then suddenly feeling full of life is going to be something that will take time to get used to. A lot of the “post-transplant” literature out there indicates that there will be a “transition period”, but what I’m wondering is if anyone who may read this blog and is also a transplant recipient has gone through similar issues? Actually, I’d like to hear from ANYONE who has felt this way – this isn’t isolated to transplant recipients.