This won't mean much to those of you who don't have kidney disease, but for those who do I hope it will serve a purpose. In the conversations I have had with transplant recipients, I have noticed that a lot of people tend to forget the specifics of their illness and treatment prior to their surgery. Understandable. Nobody wants to dwell on the time in their life when they were most sick. The memory plays one of its helpful tricks and files such details away in that dusty cabinet where it sends the not-so-nice information it hopes it will never need again.
When I look back on the last two years, I too find myself starting to forget the finer details of what went on when I was first diagnosed. This is therefore intended as a record for myself, as well as an aide for anybody who might be starting on the road to dialysis and transplant.
So we return to that first evening in the consultant's office. The bad news has been delivered and now he switches into action mode. He is scribbling down my first prescription, issuing orders of when to take what. A list of names that mean nothing to me. I nod and take it and shake his hand. What am I thanking him for?
Then the surreal moments where you talk to his secretary. The matter of payment and a next appointment. What? Money? Of course. She sees tears and says it's grand, you can send a cheque in when you get the chance.
A silent car journey to the chemist. The phone is ringing. A mother frantic with worry, wanting to know, but terrified to hear it. I can't talk to her yet. Standing in line at the chemist, patiently waiting my turn, looking around at the others holding scripts at the counter, seeing myself now as part of this new club.
I step up and hand in my long list. I expect a reaction, for this pharmacist to look at me, all young and healthy and express surprise at this mass of medications I come in search of, but there's nothing. It may be new to me. It isn't to them.
Enough rambling. My initial treatment consisted of four Omacor fish oil tablets a day (two in the morning and two at night), two blood pressure tablets (Zanadip 20mgs and Coversyl 5mgs), Lipitor (10mgs), Aspirin (75mgs). I have a feeling I was on something else at this point, but I can't for the life of me remember what it was.
In the first year, I also received infusions of iron in the hospital every couple of months to help with my anaemia (my haemoglobin level went down to about 9...not too low, but low for me).
The Aspirin was reduced to one every other day in no time at all, due to the fact it was causing me to bruise very easily. I quickly started to look like someone was kicking me around the place every night. I can't entirely blame the Aspirin for this however. I do have a remarkable knack for failing to navigate around furniture and for misjudging my distance from immovable objects.
This was my regime for the first year after diagnosis. The only additions came when I was put on Furosemide 40mgs (to stop fluid retention and give my blood pressure a helping hand) as my kidney function worsened, and also Sodium Bicarb (the most horrible tablet ever because it does taste like salt and baking soda mixed together and it doesn't exactly slip down your throat so much as half-choke you).
When I had my surgery to implant the catheter in my tummy, everything went a bit haywire. First of all, it took them 2 hours to implant the tube - it should normally take about 45 minutes. They figure that was the reason why I got an infection from the surgery and why I was re-admitted to hospital two days after being discharged with vomiting and severe abdominal pain.
All that stress on my body made my blood pressure go crazy again. The Zanadip stopped working and in fact started to give me a racing heart and palpitations. There were times when I couldn't sit still or lie down or do anything for hours after taking it because I could feel my pulse hammering through my body. Very uncomfortable.
So that was changed, and I was put on a new regime with the commencement of dialysis and that has remained pretty much the same for the past 10 months:
Calcium Acetate - 3 times per day with meals to stop the body absorbing phosphate.
Cardura - for blood pressure, I was first on 8mgs a day when my bp was very high (it was an average of 170/125 in those days). It was then reduced to 4mgs and then stopped altogether when my bp stabilised with dialysis.
Rampiril - for blood pressure...initially on 5mgs per day, reduced to 2.5mgs per day now because my bp was dipping too low (down to 90/50 at times which led to a lot of dizziness and fainting).
Lipitor - 10 mgs
Vitamin B,C and D tablets
(The vitamins and folic acid are necessary because along with taking all the evil toxins out of your system, peritoneal dialysis also removes a lot of the good stuff)
I also give myself a 30mg injection of Arenesp every three weeks for energy...I was on NeoRecormon every two weeks but they stopped this because my haemoglobin jumped too high and this can put your heart at risk. The Arenesp is a poor comparison to the little kick I used to get off the pure stuff.
I wear sunscreen if I am going out in any kind of warm weather due to the risk of skin cancer post-transplant. The dermatologist advised that this would be a good move as I have fair skin and a lot of moles and would be deemed to be high risk.
Oh, and they stopped the Aspirin altogether cos even with taking it every other day, I continued to look like someone's punchbag. Any bruises I collect now I can only put down to my own, unfortunate clumsiness.