Everybody who knows me well enough, will know that I am (negatively) superstitious about the number 13. As such, you can imagine that I was less than impressed when I was told that I would be starting IVIG on Tuesday April 13th.
After agreeing to go for the seemingly more flexible three weekly infusion option, and following a check that my veins were easily accessible, I was pretty much ready to go.
Despite understanding the need for the treatment, and also knowing how it was going to work I was extremely nervous as the big morning arrived. I was told that I needed to do two things before I arrived at the hospital for treatment - drink plenty and have a big breakfast. The drinking was not an issue, however the eating was massively more problematic as I didn't feel hungry. Probably due to the nerves.
When I arrived at the hospital, I had a chat with my infusion nurse, before the Immunology consultant took me through consent for treatment. It consisted of him asking me questions surrounding the treatment. The pinging of a faulty blood pressure monitor provided an amusing back-drop as I answered. It was then time to start the treatment.
As my counts were so low, I wasn't being given my full dose of 35g, I was being given 20g to get me started (Ive now been moved up to a 50g dose, but that's a story for another day).
Despite my nerves, the Butterfly needle went in first time, and everything was set up with no issues at all. So far so good. Id never been through a process like this in my life, and I was a little surprised that I couldn't feel the liquid being dripped into my vein, so I was relatively surprised at not feeling anything. It was all to change........
Twenty minutes or so into the infusion, I started to feel a tingling all around my chest, throat, lips and even where a wisdom tooth had been causing trouble. Not long after that, I started to feel really bad back-pain. The kind that feels like some inconsiderate, banging your spine with a hammer!! A couple of paracetamol as suggested by a patient who had been having the treatment for a while cured that thankfully. That's when it hit me - an overwhelming tiredness that I had never felt before. One minute I was reading a page of my paper, the next I have completely switched off. My infusion nurse will often joke about the fact that she can still remember that moment when the tiredness hit me.
Just imagine that all your energy drains away, and you feel that even shifting your seating position seems to take all you have. That will give some kind of idea. After the infusion just working to the car-park was difficult. The rest of the day was spent necking copious amounts of water to prevent dehydration and drifting between being awake and trying to sleep.
I had intended to work the day after, but there was no chance of that. Although Id had my best nights sleep for many a night, I was extremely lethargic and swung between feeling ok and then feeling my energy dip again, as the newly provided antibodies dealt with my infection load. Currently I'm now learning that while I adapt to the treatment 48 hours will be required for me to even become close to my old self. Whether this treatment would live up to my expectations, time will tell............
Wednesday 30 June 2010
Tuesday 22 June 2010
To IVIG or not to IVIG?
Following the diagnosis of CVID, the next step was to decide the methodology of treatment.
My diagnosis was confirmed in late March, after an attempt to stimulate my immune system using vaccinations had failed drastically. On top of that, despite daily antibiotic, I was still picking up infections. If anything my immunoglobulins had dropped even further. The appointment I thought would only last half an hour or so turned into several hours.
You kind of get a feeling things are not great when your doctor keeps re-checking your notes. Even though deep down I knew what was coming it was still a shock when the full scale of the issue was laid out to me. Ever since my low immunoglobulin counts had been discovered access to the internet and wikkipedia gave me an idea what to expect.
The only way for my condition to be controlled from this point was to be given replacement antibodies. However there were two possible methods - a three weekly IVIG drip, or a weekly 'sub-cut' method where a pump delivers the fluid into sites on the abodmen.Having only started a new job a few weeks earlier I was immediately drawn to the three weekly option (the sub-cut method required a hospital visit every week for at least 10 weeks). As usual things are not that simple. Although my counts being so leant towards the three option (a larger amount to boost me immeadiately), my veins are moveable - something I would later painfully discover.
The doctor went through the whole process of anti-body harvesting from Euopean and American donors. I was then shown where the infusion takes place before my infusion nurse checked my understanding with a series of questions, which would later be repeated when I gave my consent to treatment some three weeks later.
One of the lighter moments in the run up to the start of my now life-long treatment, was having to have my veins examined!! Having a nurse gently rubbing your arm and hand is a stranegly pleasant feeling guys!! ;). However it is important for the nurse to establish the quality of the veins as they have to stand up to long term useage. However Im intrigued to find out what vein exercises are!!!
My diagnosis was confirmed in late March, after an attempt to stimulate my immune system using vaccinations had failed drastically. On top of that, despite daily antibiotic, I was still picking up infections. If anything my immunoglobulins had dropped even further. The appointment I thought would only last half an hour or so turned into several hours.
You kind of get a feeling things are not great when your doctor keeps re-checking your notes. Even though deep down I knew what was coming it was still a shock when the full scale of the issue was laid out to me. Ever since my low immunoglobulin counts had been discovered access to the internet and wikkipedia gave me an idea what to expect.
The only way for my condition to be controlled from this point was to be given replacement antibodies. However there were two possible methods - a three weekly IVIG drip, or a weekly 'sub-cut' method where a pump delivers the fluid into sites on the abodmen.Having only started a new job a few weeks earlier I was immediately drawn to the three weekly option (the sub-cut method required a hospital visit every week for at least 10 weeks). As usual things are not that simple. Although my counts being so leant towards the three option (a larger amount to boost me immeadiately), my veins are moveable - something I would later painfully discover.
The doctor went through the whole process of anti-body harvesting from Euopean and American donors. I was then shown where the infusion takes place before my infusion nurse checked my understanding with a series of questions, which would later be repeated when I gave my consent to treatment some three weeks later.
One of the lighter moments in the run up to the start of my now life-long treatment, was having to have my veins examined!! Having a nurse gently rubbing your arm and hand is a stranegly pleasant feeling guys!! ;). However it is important for the nurse to establish the quality of the veins as they have to stand up to long term useage. However Im intrigued to find out what vein exercises are!!!
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