i will try to give here my account of this experience with Chronic Kidney Disease and subsequent transplant. hopefully it will be of help to someone suffering similar plight but from my side here's the only advice that i can give -- being a patient or transplant recipient does not make me or anyone else an expert in the field, it does not make them eligible for advice or suggestion. it is a complicated disease with different types of progressions and outcomes, and it is a must to find a trained expert in the field to guide you.
so this is not an attempt to educate anyone about the disease or its treatment, as frankly speaking i just do not have the required skill to do so. this will just be a personal account of how i am dealing with this disease.
a caveat. the write up is personal to the point of melodramatic and a tad morbid at times. so if you do not have a taste for those things, stop right here.
i needed transplant in about a year after i was diagnosed with IgaN - an autoimmune disorder. i was still struggling to believe that this was happening to me, that i have CKD - something that will stay with me and (potentially) mess with my mind for as long as i am there. i was doing everything in my power to make it progress slowly - almost banished salt from my diet etc, but though it worked initially, my kidney function suddenly went downhill. the talk of transplant and possibility of finding donors (non-related donation is allowed in kolkata) almost pushed me over the edge.
i was convinced that the donation will not have any long term implication for the donor, but i struggled (honestly speaking,still struggling) with the idea of putting someone healthy on operation table for my benefit. it was troubling me a lot. i tried to weigh the pros and cons of going for any treatment at all. mozart was younger than me when he died of kidney disease. so did swami vivekananda (apparently he fought 26 different kinds of diseases including kidney disease, source: sankar's ajana acena vivekanada). einstein refused his last operation saying 'it is distasteful to prolong life artificially'. how does my life measure up to these lives? so ridiculously trivial and insignificant! and i have to kick the bucket someday anyway. what's wrong with now? but in spite of all the death cliches like 'this is it',' time has come', 'let nature take its course', 'go gracefully' running wild in my head, i ended up giving 'going on' a try.
many in my family were willing to donate. those who are familiar with the process know that willingness of prospective donors plays a vital role but it is not sufficient for organ donation. there will be n number of examinations to ensure that the donor will be unaffected by the surgery and that it will well tolerated by the recipient. one of the primary criteria is to ensure is that both have compatible blood groups. almost everybody in my family has the same blood group- AB .... everybody except me, i have A, making me incompatible to those with AB.
transplant in such cases would have been impossible in the past, but with recent advancement it is possible. but it involves more treatment including plasmapheresis. i was advised it is better to go for a compatible blood group transplant. my sister and brother in law who lives in Noida insisted that i come and consult dr kher of medanta hospital where one of their close friends just went through a second transplant and it was an ABO incompatible transplant. we later found out that information was incorrect it was an O to AB transplant. nothing is incompatible for O as a donor and AB as a recipient.
in any case we came to delhi, with a lot of uncertainties, for a consultation and found out that there were no time left for dwelling on uncertainties. my creatinine and other parameters sky rocketed and we started the pre transplant investigations right away with my mother as prospective donor. after one month of grueling tests we were both okayed for transplant. one interesting find during the tests were that my anti-B titre was low and i do not require plasmapheresis. just before the transplant my symptoms were becoming a bit unmanageable, but i did not go for dialysis either. another interesting tit bit about my transplant is that medanta offered a robot (adorably named da vinci) assisted recipient surgery and we went for it...giving me smaller cuts, chance of quicker recovery and comparatively less pain--a little more than a month on, my scars are hardly visible.
anyway, going back to recording my experience. on the surgery day, when ma and i were being wheeled into the OT, strangely, i was neither philosophising nor thinking about life or anything. was worried about ma, but was still very calm. i just wanted to sleep.i was probably drugged already. ma was taken to a different operation theater. i was surprised that there were so many people in the OT that i was wheeled into. i think there were at least fifty people there. i could see da vinci in the corner with multiple arms. the table in which i was asked to move was really narrow. i suddenly remembered eliots's analogy of the evening and sky. all these made me want to sleep more. one doctor asked me my name etc, to check my consciousness i guess. in the next scene, the surgeon was informing me that the operation was successful. i think i enquired about my mother.
ma recovered quickly. she was on her feet the very next day. not before she went through tremendous pain and discomfort though. the pain and discomfort lasted for a while for her. but her recovery was smooth. i was also encouraged to try and walk the very next day. and i did. but that reminded me of how, years back, i used to make my dog, pamie, a large german shepherd, walk on her hind legs. the scenario was very similar. i was so weak and sick that it was almost funny. i was expecting pain but it did not came to my mind that i will not be able to take a sip of water without help. i was seeing four of one person (a la captain haddock, and i did not even get to drink). however, even though there were a few complications i was actually recovering reasonably well. ma's kidney started working right away. a few other organs kind of vied for attention. but were kept under control. i was in good care at the hospital and at home afterwards. only problem was getting used to immunosuppresives and steroids.
now about one and a half moth after the surgery (and more than three months after i came to delhi for a consultation), i am planning to go back to kolkata, i already took a two day trip to bharatpur bird sanctuary with doctor's approval. doc says i can join work right away. which is fantastic as i thought i would need to be confined in a room for five months or so, (to stay germ free after the transplant as any infections refuse to go when on immunosuppresives).
now trying my best to stay fit with walk and diet, cooked a lot these days...in short, all set to go on for a while longer. i know i will still go south once in while. get into a 'why me?' mode. but on a good day, i think i will be strangely grateful that all these happened. not just because of my mother's sacrifice,not just because of the trouble that my sisters entire family including my 6 year old niece went through for my sake, not just because the tremendous effort of the wonderful human beings who worked relentlessly for years for the advancement of science to at all make transplant possible, but also because i experienced all the physical and emotional pain .. makes me feel like Ulysses suffering and enjoying greatly both alone and with those who loved. after all what is life if not a series of experiences. and a life with all favourable experiences is a little uninspiring. isn't it?
post scriptum: kindly consider pledging your organs, be kind to them, keep them alive for longer.
so this is not an attempt to educate anyone about the disease or its treatment, as frankly speaking i just do not have the required skill to do so. this will just be a personal account of how i am dealing with this disease.
a caveat. the write up is personal to the point of melodramatic and a tad morbid at times. so if you do not have a taste for those things, stop right here.
i needed transplant in about a year after i was diagnosed with IgaN - an autoimmune disorder. i was still struggling to believe that this was happening to me, that i have CKD - something that will stay with me and (potentially) mess with my mind for as long as i am there. i was doing everything in my power to make it progress slowly - almost banished salt from my diet etc, but though it worked initially, my kidney function suddenly went downhill. the talk of transplant and possibility of finding donors (non-related donation is allowed in kolkata) almost pushed me over the edge.
i was convinced that the donation will not have any long term implication for the donor, but i struggled (honestly speaking,still struggling) with the idea of putting someone healthy on operation table for my benefit. it was troubling me a lot. i tried to weigh the pros and cons of going for any treatment at all. mozart was younger than me when he died of kidney disease. so did swami vivekananda (apparently he fought 26 different kinds of diseases including kidney disease, source: sankar's ajana acena vivekanada). einstein refused his last operation saying 'it is distasteful to prolong life artificially'. how does my life measure up to these lives? so ridiculously trivial and insignificant! and i have to kick the bucket someday anyway. what's wrong with now? but in spite of all the death cliches like 'this is it',' time has come', 'let nature take its course', 'go gracefully' running wild in my head, i ended up giving 'going on' a try.
many in my family were willing to donate. those who are familiar with the process know that willingness of prospective donors plays a vital role but it is not sufficient for organ donation. there will be n number of examinations to ensure that the donor will be unaffected by the surgery and that it will well tolerated by the recipient. one of the primary criteria is to ensure is that both have compatible blood groups. almost everybody in my family has the same blood group- AB .... everybody except me, i have A, making me incompatible to those with AB.
transplant in such cases would have been impossible in the past, but with recent advancement it is possible. but it involves more treatment including plasmapheresis. i was advised it is better to go for a compatible blood group transplant. my sister and brother in law who lives in Noida insisted that i come and consult dr kher of medanta hospital where one of their close friends just went through a second transplant and it was an ABO incompatible transplant. we later found out that information was incorrect it was an O to AB transplant. nothing is incompatible for O as a donor and AB as a recipient.
in any case we came to delhi, with a lot of uncertainties, for a consultation and found out that there were no time left for dwelling on uncertainties. my creatinine and other parameters sky rocketed and we started the pre transplant investigations right away with my mother as prospective donor. after one month of grueling tests we were both okayed for transplant. one interesting find during the tests were that my anti-B titre was low and i do not require plasmapheresis. just before the transplant my symptoms were becoming a bit unmanageable, but i did not go for dialysis either. another interesting tit bit about my transplant is that medanta offered a robot (adorably named da vinci) assisted recipient surgery and we went for it...giving me smaller cuts, chance of quicker recovery and comparatively less pain--a little more than a month on, my scars are hardly visible.
anyway, going back to recording my experience. on the surgery day, when ma and i were being wheeled into the OT, strangely, i was neither philosophising nor thinking about life or anything. was worried about ma, but was still very calm. i just wanted to sleep.i was probably drugged already. ma was taken to a different operation theater. i was surprised that there were so many people in the OT that i was wheeled into. i think there were at least fifty people there. i could see da vinci in the corner with multiple arms. the table in which i was asked to move was really narrow. i suddenly remembered eliots's analogy of the evening and sky. all these made me want to sleep more. one doctor asked me my name etc, to check my consciousness i guess. in the next scene, the surgeon was informing me that the operation was successful. i think i enquired about my mother.
ma recovered quickly. she was on her feet the very next day. not before she went through tremendous pain and discomfort though. the pain and discomfort lasted for a while for her. but her recovery was smooth. i was also encouraged to try and walk the very next day. and i did. but that reminded me of how, years back, i used to make my dog, pamie, a large german shepherd, walk on her hind legs. the scenario was very similar. i was so weak and sick that it was almost funny. i was expecting pain but it did not came to my mind that i will not be able to take a sip of water without help. i was seeing four of one person (a la captain haddock, and i did not even get to drink). however, even though there were a few complications i was actually recovering reasonably well. ma's kidney started working right away. a few other organs kind of vied for attention. but were kept under control. i was in good care at the hospital and at home afterwards. only problem was getting used to immunosuppresives and steroids.
now about one and a half moth after the surgery (and more than three months after i came to delhi for a consultation), i am planning to go back to kolkata, i already took a two day trip to bharatpur bird sanctuary with doctor's approval. doc says i can join work right away. which is fantastic as i thought i would need to be confined in a room for five months or so, (to stay germ free after the transplant as any infections refuse to go when on immunosuppresives).
now trying my best to stay fit with walk and diet, cooked a lot these days...in short, all set to go on for a while longer. i know i will still go south once in while. get into a 'why me?' mode. but on a good day, i think i will be strangely grateful that all these happened. not just because of my mother's sacrifice,not just because of the trouble that my sisters entire family including my 6 year old niece went through for my sake, not just because the tremendous effort of the wonderful human beings who worked relentlessly for years for the advancement of science to at all make transplant possible, but also because i experienced all the physical and emotional pain .. makes me feel like Ulysses suffering and enjoying greatly both alone and with those who loved. after all what is life if not a series of experiences. and a life with all favourable experiences is a little uninspiring. isn't it?
post scriptum: kindly consider pledging your organs, be kind to them, keep them alive for longer.
