I get all my medications from a company called PillPack. It's really handy; they mail all my prescriptions to me in a box that contains daily labeled packets, each with the medicines I need to take at the correct time of day. It was really useful when I was on a lot of anti-rejection medications for my transplant. My new box came recently, and for the first time in almost seven years, the packs do not have the anti-rejection medicines. They're noticeably smaller, and the amount of pills I take a day has been greatly reduced. This is like the last gasp of my transplant era - a reminder that it's truly over, and a dream has died. It is truly a loss that I am mourning. I am in stages of grief about this. My transplant was my miracle, my family's miracle. Getting that transplant kicked off a series of events which changed my life - there was so much riding on it. So many dreams - and my wife and I were lucky enough to accomplish many of them. The loss of this transplanted organ is huge, and I don't know if I've fully processed it. I probably never will - it's my second transplant, and I just turned 40. I've been dealing with this since I was 24, and frankly the fact that I am alive is a miracle. People die everyday from what I live with. I read about it often in many kidney disease support groups I am part of. I see it in my dialysis center when people I used to see everyday don't come in anymore. Sometimes it's because they got a transplant, but sadly the reason is more often that they have succumbed to the disease. My own mortality is more fragile than I probably let on in my day to day existence, but I am acutely aware of it. I am in a much more stable position now, being on dialysis for over three months. The new routine is difficult for me and my family, but we are managing. With a lot of help from family and friends, we are managing. But I am definitely dealing with my own personal sense of loss. Seven years was all I had with my miracle. The hope was that it'd last the rest of my life, and to only get seven years... when I was younger, seven years would have seemed like a long time. Now, though, even 10 years doesn't seem like enough time. There is never enough time, it's a truth we all know but hate to face. It affects me even more now though, especially when I spend time with my children. There is truly never enough time. I am glad I had the transplant for the time I did. But I want more, and I'm mourning my loss - the loss of my transplant and the loss of time. I have less and less every day. They say your life flashes before your eyes when you pass, and I know those moments will stretch into eternity for me and in that gulf of time I will miss everything and everyone so much. And for a moment, time will be all I have. For a moment. Thank you for letting me talk about such things and being supportive to me and my family. Events like this would be unbearable without the love and caring we're surrounded with.
Last Sunday, I woke up very early in the morning and went into the bathroom to do my usual business. I noticed, however, that I was breathing very rapidly and very shallowly. I went and told my wife - inititally we thought I was having a panic attack, but when my chest began to rattle and I spit up blood, we knew we had to call an ambulence.
I threw on some pants, a shirt, shoes, made sure I left my keys home, grabbed my wallet and insurance cards and waited for the EMTs. They showed up, and gracefully loaded me into the ambulance and took me off to the hospital.
I spent the next five days there. In that time, it was determined that I had pulmunary edema from excess fluid, congestive heart failure, and kidney failure and I'd need to go on dialysis. Good thing I didn't remove my fistula after my last kidney transplant. It worked like a charm. I did dialysis on Tuesday. It was rough, and I did not feel well afterwards. The whole day is a blur for me. Wednesday, another session - this time, much better. I tolerated the treatement, recovered much quicker and Thursday, we had a great session of dialysis. Friday, I did my last of the week, and I went home from the hospital.
I was hard being away from my wife and children this whole week; I can't even yet put it all into words, which is why I'm hastily writing this down. I'll go into it more later, I'm sure, but I know I'm lucky to be alive. So many people my age do just sadly die... but I don't want to yet. I've got so much to live for.
At the point I'm existing in now, I suppose I'm just trying to get by. I have good days and bad days; some days, I am so tired and beat it's amazing. Other days, I'm full of energy, optimism and go get 'em. But even on those days, I run out of steam pretty quick. I'm trying to conserve energy and put it where it belongs the most: into my wife and kids. It can get pretty hard out there, living with a chronic disease, so you have to pick and choose where you place your attention. Which can suck, because you can end up ignoring or putting other things you care about on a back burner. It's just the only way you can get by.
On my bad days, I fee like I'm walking around in a mental fog; I usually feel like I'm pretty sharp and aware of things, but when my mental fog is on, I have trouble recalling the simplest of facts... even words escape me, and sometimes I just blather nonsense words to fill in the gap. It drives my wife crazy sometimes, because I'll speak gibberish until my brain can find the right word it wants. It's a weird habit, I admit.
I've changed my diet a bit, and I've lost a bunch of weight - this has helped me, I think. I feel less slugish based on what I eat, and I'm trying to take any advantage I get.
I hope I can continue this line of self improvement after the transplant; I'd like to not gain weight again, like last time. I'd like to continue to lose weight and get into shape. I'd like to be able to play with my children more and do more active things with them.
Sometimes I worry that it's too late; maybe my cards are up. But at this point, I want to at least try - I want to live my life like I am going to live 30-40 more years, and I want those years to be well. I've spent most of my adult life sick and out of shape. It's time for that change.
So, I'm getting by now, but in the future, I don't want to just get by - I want to be living that old proverbial best life. Maybe I'm on the right path now. Maybe medical technology will improve by leaps and bounds in my life and someday I can regrow my own kidney. I have to have hope. I've lived and survived 15 years of this with my hope, and the love and support of my friends and family. I hope my hope lasts and their goodwill towards me endures.
It's funny how you can go on for a long time, believing something is one way while someone else thinks it is a completely different way. I guess our own personal thoughts can be something we get lost in at times; when you forget to share those and kind of coast on auto-pilot, problems can happen.
For as extroverted as I can appear, I am also often very introverted. I'll sometimes share just enough to make people think I'm being open, but I'm holding back. Either intentionally or unintentionally. Sometimes, though, when you've been coasting that way for too long, you look back and see how you've missed things or messed up certain situations.
I've been through a lot over the years, and I can become very "me" focused. I really try not to be - and I feel that I give a lot of myself, but I have faltered at times. Trying to keep my mind, eyes, ears and heart open is work - but I gladly undertake it. Re-evaluating your own behavior and how you act is so important - you can't just coast on through life, and sometimes it becomes so easy you don't realize you're doing it.
I've been living with End Stage Renal Disease for so long, sometimes even I forget the severity of my condition. It's been 15, almost 16 years since I was wheeled into an ER at age 24 and told that my kidneys were no longer functioning. I was basically a bewildered child at the time; unable to process the information that without dialysis or a transplant, I would surely and most definitely perish.
That's a lot to hit anyone in a moment. People grapple with this kind of info everyday, though. Sadly, I'm just another number in a population of people who are told they are chronically (and often fatally) ill.
I've managed to carve out a life for myself in the aftermath; I can tell you that my plans for myself were quite different before I became a kidney patient, but even I can't say what life would have been like. What happened to me defined the path I've gone on, and for better or for worse, it has been an adventure. I quite like a lot of my life; most of the things that I hate are related to my health problems. I've been blessed with a cadre of friends, the most wonderful family, and a spouse who is amazing in so many senses.
But it's all wearing on me. At 40, I'm feeling the weight of life a bit more heavy than I did at 24. I have responsibilities now; my kids and my wife. I think 90% of my day is spent thinking about how I can help and benefit them, at least for the time that I'm here. It's hard for someone who is chronically ill to not view themselves as a lodestone, dragging down everything good around them. It's also hard not to get in your own head about it.
I'm trying to get back in touch with the things I love about life: music, art, books, conversations, laughter, adventure... stepping outside of the comfortable places that we tend to cling to, especially when things get hard. It is difficult, though, as I have less and less to give of myself at this moment. I'm so tired all the time. My mind is... foggy. I used to think of myself as somewhat quick-witted and occasionally clever, but now I feel like my thoughts are dragged through a lake of molasses before they can even reach my vocal chords. I stumble over finding the right words to say. Living life in this manner is extremely difficult for me. I feel like I'm letting down the people in my world.
I think even I have a way of pretending that it's not as bad as it is. Death is an actual possible outcome here, and I can't pretend like it's not. I can't let others around me pretend it's not either. I read today about people who died because they couldn't get dialysis treatments in the aftermath of a hurricane. That could easily be me.
I know I'll be back on dialysis soon. Hopefully soon we also get results of the further testing on my wife. Maybe then we can set up a surgery for a transplant. If something happens that prevents her from donating for health reasons, I would never be mad at her. I'd do my best to go on, doing dialysis as long as I can until we can find another kidney or maybe I'd get another miracle call.
I've already received too many miracles for this lifetime. There's a part of me that feels like my ticket is all punched; I've run out of favor. But who knows? I want to be here longer - I've got too much love to give to my family yet.
As I write this, my son walked over to me, and asked to hold my hand. He wants to take me somewhere and show me something. I want to follow him for years; I know he's got a lot to teach me and I have so much to teach him.
Stay kind out there. I'm trying to learn from my mistakes and be better, not only for myself, but for the world too.
So much has happened, I really don't know where to start with this one. I started this blog years ago to chronicle my thoughts and experiences while on dialysis - I was lucky enough to get a transplant during that time, and after that I wrote for a while about living with the transplant.
Life is so complex; I'm not spinning anything new here with this kind of statement. The mystery of human existence has been expounded on by authors since written language was invented, but I can only express my experiences with it. It's complicated enough when you are a "normal" person without a chronic health issue; add in the things I've got going on inside my body, and it just changes the equation to something approaching befuddlement.
I've been feeling wan for the past couple years, but I figured that was due to the fact that we had two children in as many years, and suddenly I was a full-time parent to two children under the age of two! Add in work woes, declining health just seemed to be part of it all. But the biopsies they decided I needed on my transplanted kidney showed that it was starting to fail.... not reject, like they worry about, but fail. My body was killing this kidney, for some reason. The same unknown reason that my body killed my native kidneys. I'm still having tests done, but the answers aren't clear. What is clear is that this transplant is on its way out, I'm going to be going back on dialysis, I need a new transplant, I am father to two wonderful children, and husband to the most amazing woman in the world.
Years ago, when I was sick and on dialysis, my wife (knowing she matched my blood type), "knew" she was going to be a match and give me a kidney. I refused it at the time, citing the fact that I was young, strong and that we wanted to have children one day. So when this kidney began to fail, she immediately got tested. She ended up being a match. We're working up to scheduling a transplant, but there's still a bunch to do.
And it's a lot for her. I know it is; she is one of the strongest, most determined people in the world. She's held our world on her shoulders for years, like Atlas, she has carried us. She carried me, and now she had the kids... and I feel more like dead weight than ever. I worry about her mental well-being. This is all so much. She is strong, but she is not an endless wellspring of energy.
I wish that it wasn't this way. I wish I wasn't sick like this. But I am. And I'm here. And it's a weight on my family. A Transplant isn't even a cure - there's always the chance it will fail, as has happened to me already! We had seven years with this kidney. It gave us so much... and if I do take hers, will it work? Will things go well? Will my body try to kill this? There's so many factors here.
I don't want to die yet, I don't want to lose my family yet. I don't want to be a footnote in my children's wife. I don't want to be just a memory to my wife. But I have to face the fact that this may be my reality. So I want to leave a good legacy for them. I just hope they know how much I love them. More than any of my silly little words could ever convey.
It's going to be a hard and trying time for my family in the next few months. I hope I make it out clean on the other side, healthy and happy. Then I'm going to do my best to spoil my wife rotten and show her everything she deserves, the most of which is just peace of mind. Then I'm going to hug my children all the time.
It's been my honor to share my moments and thoughts with all you - if there are still readers out there. I hope that maybe something I've said has touched you, or helped you. I'd like to think something I did made a difference somewhere. I'm going to try to remember to live more in the moment, and do my best to be the best person I can be, always.