So, what’s this blog all about? Well, in a nutshell, I am about to spend a lot of time over the coming months in hospital. Previous experience has shown me a lot of interesting, funny and depressing things happen every day in a hospital ward, and I thought writing about these (in a light hearted, tongue in cheek manner) things while in hospital might make for intriguing reading, and just as importantly, help me pass some time.
Unfortunately I have become a bit of an expert when it comes to being an inpatient. Since I was sixteen years old my health has been less than ideal, as detailed below.
- In the late 90s when I was a teenager, I suffered acute liver failure which resulted in me undergoing a liver transplant. (few days in intensive care and over 1 month in hospital)
- 2002, after suffering a seizure while driving it was discovered I had an Astrocytoma (type of brain tumor). Fortunatly this was completely removed and I made a full recovery (couple of weeks in hospital)
- In 2009 I underwent an operation to repair a tightening in a bile duct due to scar tissue where my own bile duct joined that of the donated liver. (week in hospital)
- 2009 – 2010 various tests and biopsies to determine reason for enlarged spleen
- In 2010 I underwent a Splenectomy to remove my Spleen has it had grown to around the size of a rugby ball (few days in intensive care, couple of weeks in hospital.
- 2010, got pneumonia after Splenectomy along with other complications (10 days in hospital)
- 2010, results of tests done on spleen showed that I was suffering from Post-transplant Lymphoproliferative Disorder (PTLD). To my understanding this may have been caused by the immunosuppressive drug I have to take as a result of the liver transplant to stop my immune system attacking the foreign liver.
Makes for pretty grim reading doesn’t it. As you can see, I have spent more than my fair share of time in hospital. So I think I am pretty well placed to pass comment on what goes on in them.
This takes us up to my current condition. PTLD is a type of lymphoma, which in turn is a type of cancer.
Initially this was treated with a medication called Retuximab. This was done on a weekly basis as a day patient but unfortunately had little effect.
The next step was to treat this with a fairly common type of chemotherapy for Lymphoma. I received 8 cycles of chemotherapy, each cycle being administered every three weeks. A scan at the mid-point showed the lymphoma was responding well to the treatment and one mass of infected lymph nodes in my chest had disappeared while the mass around my stomach remained. This was good to hear, after suffering pretty unpleasant side effects after each treatment. So the doctors expected the following four treatments to continue to work well…
Man, was I in for a bitter blow. While I didn’t expect things to be totally clear, I thought worse case would be that some infected nodes would remain and I would need some radio therapy to help clear this, as this was what the medical staff expected. It was a big shock to go for my results following a scan to be told that not only had there been no improvement, but the mass of infected nodes had become worse. Apparently, at some point after the fourth treatment the lymphoma had become resistant to the chemotherapy regime I was being given at at the time, and became worse.
This takes me up to the present day. I am now due to undergo a more aggressive chemotherapy regime, beginning this week. The treatment is so aggressive that it will completely wipe out my blood count and immune system leaving me extremely susceptible to infection which would require immediate treatment. To try and avoid catching an infection, or to treat one at the earliest opportunity, I will spend a lot of time after each treatment in hospital. This could be anywhere from one to three or four weeks.
So there you have it, you now know why I will be spending much time over the coming months in hospital. I don’t plan to talk about my illness much, but rather just pass comment about things that have happened each day in a humorous manner.
I’m not sure how well this will work out, whether I will have enough to write about, or if my blog entries will be witty and interesting enough for people to read, so we’ll see how it goes.
It all starts tomorrow when I go in for the day to have a Hickman Line inserted.