Update on Rosy's meds
Last week I went to see a nephrologist for the first time in ten years. I had a kidney transplant seventeen years ago and attend clinic regularly (every year), but have not actually seen a specialist for a decade. I've also been experiencing fatigue, sore joints, anemia and a wobbly blood sugar. These are side effects of my meds.
It's taken me a week to be able to post, because I've needed to digest some things I was told. I also didn't realise how anxious I was about the visit, even though its aim was only to see if my meds could be changed. I thought I'd better post something brief now and then maybe later enlarge on things.
When the doctor was reading my previous sets of blood results, he seemed very cheerful, beaming into my documents and telling me that my creatinine was perfect and my blood count was perfect and so on. This went on for a while and I assumed he was simply a cheerful soul who enjoyed reading about blood results (probably why he became a doctor, I thought). At some stage, he realised that my response to his enthusiasm was not quite as excited, so he explained.
These days a kidney transplant has a 90% chance of lasting ten years. When I had mine, there was a 20% chance it would last a decade. I have had my kidney for nearly twice that and my results are all, well, perfect.
He continued to examine me and comment on my perfect lungs, perfect heart, perfect skin (he checked me for skin cancers), perfect foveas, etc. Even my scar was perfect. In fact, he finished with my blood pressure, which he announced to me with a flourish: "130 over... (he paused for dramatic effect and whispered)...66!" I was disturbed. It's usually 110 over 70. But he assured me 130 is quite all right. He ended up telling me that I was perfectly normal and, in fact, perfect.
Because my transplant has been stable for so long and I am on relatively little medicine, he doesn't want to change to another type of medicine. Instead he wants to reduce what I'm taking slowly, so that I will end up taking half the cortisone and two thirds of the azathioprine. So I am now taking a 5mg cortisone tablet two days out of three. Next week my bloods will be tested again and then, if all is well, I will take my cortisone every second day.
I can't tell you how worried I've been about lowering my immunosuppressant dose. These pills prevent my kidney from rejecting. I never miss my meds ever. I never skip a dose. Some people dislike taking pills, because it reminds them they have medical issues. Pill taking has never been a problem for me - I've been doing it all my life and I do it completely obsessively. This might be part of the reason my transplant has managed as well as it has.
The first two cortisone-free days were scary for me. I didn't know what to expect and became alarmed every time my heart pounded or I felt hot. I was minutely aware of every fluctuation in my body and read dreadful meanings into it. I took my temperature, my pulse, palpated my abdomen, tried to locate exactly where any discomfort was. I know organ failure. I've lived it and don't want to do it again. I also know rejection - I had two acute rejection episodes after my transplant and one chronic one.
Today is the third cortisone-free day and I feel pretty good - energetic, awake, no temperature, no palpitations, no mysterious, worrisome pains. In fact, I feel great. So next week it's the blood test and then I need to have a bone-density scan. Apparently bone-thinning can be reversed. Maybe we'll finally get rid of those joint pains!
I took a while to understand what I felt about it all, especially those stats. I eventually realised that I feel awe. My doctor told me that my kidney must have been a really fantastic match (he was amazed that my kidney was from a cadaver donor, not a related living donor). That really choked me up. It's a whole other story, but it was a long, hard path to receiving a kidney. I missed two kidneys when on the waiting list and the only relative who could donate to me chose not to. I nearly died. My donor and his family saved me. I am once again amazed at how wonderful a match it is. When I saw my kidney on the scan at the urologist in January, I was quite astonished at how big and healthy it is and moved by seeing it looking so well and settled. I was reminded of this last week. I got the right kidney and, despite everything, it turned out for the best. His kidney is perfect .
It's taken me a week to be able to post, because I've needed to digest some things I was told. I also didn't realise how anxious I was about the visit, even though its aim was only to see if my meds could be changed. I thought I'd better post something brief now and then maybe later enlarge on things.
When the doctor was reading my previous sets of blood results, he seemed very cheerful, beaming into my documents and telling me that my creatinine was perfect and my blood count was perfect and so on. This went on for a while and I assumed he was simply a cheerful soul who enjoyed reading about blood results (probably why he became a doctor, I thought). At some stage, he realised that my response to his enthusiasm was not quite as excited, so he explained.
These days a kidney transplant has a 90% chance of lasting ten years. When I had mine, there was a 20% chance it would last a decade. I have had my kidney for nearly twice that and my results are all, well, perfect.
He continued to examine me and comment on my perfect lungs, perfect heart, perfect skin (he checked me for skin cancers), perfect foveas, etc. Even my scar was perfect. In fact, he finished with my blood pressure, which he announced to me with a flourish: "130 over... (he paused for dramatic effect and whispered)...66!" I was disturbed. It's usually 110 over 70. But he assured me 130 is quite all right. He ended up telling me that I was perfectly normal and, in fact, perfect.
Because my transplant has been stable for so long and I am on relatively little medicine, he doesn't want to change to another type of medicine. Instead he wants to reduce what I'm taking slowly, so that I will end up taking half the cortisone and two thirds of the azathioprine. So I am now taking a 5mg cortisone tablet two days out of three. Next week my bloods will be tested again and then, if all is well, I will take my cortisone every second day.
I can't tell you how worried I've been about lowering my immunosuppressant dose. These pills prevent my kidney from rejecting. I never miss my meds ever. I never skip a dose. Some people dislike taking pills, because it reminds them they have medical issues. Pill taking has never been a problem for me - I've been doing it all my life and I do it completely obsessively. This might be part of the reason my transplant has managed as well as it has.
The first two cortisone-free days were scary for me. I didn't know what to expect and became alarmed every time my heart pounded or I felt hot. I was minutely aware of every fluctuation in my body and read dreadful meanings into it. I took my temperature, my pulse, palpated my abdomen, tried to locate exactly where any discomfort was. I know organ failure. I've lived it and don't want to do it again. I also know rejection - I had two acute rejection episodes after my transplant and one chronic one.
Today is the third cortisone-free day and I feel pretty good - energetic, awake, no temperature, no palpitations, no mysterious, worrisome pains. In fact, I feel great. So next week it's the blood test and then I need to have a bone-density scan. Apparently bone-thinning can be reversed. Maybe we'll finally get rid of those joint pains!
I took a while to understand what I felt about it all, especially those stats. I eventually realised that I feel awe. My doctor told me that my kidney must have been a really fantastic match (he was amazed that my kidney was from a cadaver donor, not a related living donor). That really choked me up. It's a whole other story, but it was a long, hard path to receiving a kidney. I missed two kidneys when on the waiting list and the only relative who could donate to me chose not to. I nearly died. My donor and his family saved me. I am once again amazed at how wonderful a match it is. When I saw my kidney on the scan at the urologist in January, I was quite astonished at how big and healthy it is and moved by seeing it looking so well and settled. I was reminded of this last week. I got the right kidney and, despite everything, it turned out for the best. His kidney is perfect .