Disclaimer: The following relates to my own personal experience, and is intended to encourage you to think about broader issues of how you run your life and how you relate to those around you (including health professionals). It is not intended as professional medical advice (I am not a medical practitioner). You should always consult your health professional for advice.
In today's Sydney Morning Herald I noticed an interview with the author of Sick girl by Amy Silverstein.
The article piqued my interest. I had simply never heard of this person before, yet apparently she is something of a cause celebre in the USA.
Plainly I cannot make any comment on this book until I read it. (And I will be doing this after the book is published in Australia on this coming Thursday.)
And may I also point out that whilst failed kidneys are as serious as a failed heart, at least in the case of a renal transplant
- the kidney is not a "muscle" in the way the heart is (so there isn't that wiring problem referred to in the Herald article)
- if worst comes to worst I can go back to dialysis (which is horrifying, and terrible and tedious, but at leats that option exists - whereas a heart transplant patient can only hope for another transplant).
But I must say that from time to time I have harboured a tiny, sneaking, lurking thought that I was getting a little bit of a rough deal. But I would immediately banish these thoughts as sheer ingratitude on my part.
There is no doubt that the anti-rejection medications are rather rough on most people. But we (renal transplant patients) were warned about this at the numerous training workshops on these topics that we attend before our number comes up.
Mycophenolate mofetil (CellCept) [PDF version of previous link] gave me an initial huge dose of facial pimples, that would have done your average 15-year-old boy proud. And it initially defied all attempts at fixing, including (in desparation) a blowtorch. But these eventually subsided.
Cyclosporin was revolting. It smells appalling and at first made me retch as I took it. But I got used to it. Its either this or no kidney.
Last year cyclosporin was, for me, replaced by everolimus [stub article in Wikipedia]. Again, I was warned of the possible short- and long-term side effects but still gladly signed up.
And the side effects did and do try one's patience. In my case they produced a rather uncomfortable rash on my legs (which went away after a few weeks) and a rather overly active bowel in the morning (which causes me from time to time to have to call 5-to-10-minute periods of time-out in my morning classes at my adult-education colleges).
Fortunately my students and my bosses know about this little tummy problem and understand it. This is probably one of the keys to managing an organ transplant of any type - being able to communicate your needs and requirements to those around you who are affected, and being able to actively propose ways around this.
In my case, I ask my bosses up front to try to avoid scheduling my classes on the one morning of the week when my hospital has its renal patient clinics. I also mention this problem and assure them that my students and I can usually work around this (eg moving the class break forward).
No need for further detail here - people usually run screaming from the room if I try to give more detail about this. (On the up side, I no longer have haemorrhoid problems!)
As to her alleged criticisms of health professionals - well, we all make mistakes. I've made some doozies in my lifetime.
But what can you do? Short of wilful negligence, you just have to shrog your shoulders and at least try to communicate with your health professionals that you are expecting better of them.
Last Boxing Day (day after Christmas Day) I was called in at short notice to hospital (100km each way) to re-do a blood test after the one of 8 days previous had gone awry.
Pathology tests go awry; and my wife and I didn't really mind cancelling Boxing Day celebrations with friends for this; and blood tests really have to be AOK, as this can be the 1st sign of rejection.
But I was rather disppointed in the 8-day delay, and told them - politely but firmly. Since then, they lifted their game in communicating with me.
So all in all I am at least glad Ms Silverstein has aired an area of concern for transplant patients. I do not think that one should be guilty about harbouring doubts or reservations. You have to test these thoughts to make your positive resolutions even stronger.
- The picture of Amy Silverstein was published in The Sydney Morning Herald.
