Sometimes, I compare myself to other patients.
Thanks to both my level of charity involvement and the wonders of social media, I am pretty well-connected to a very large number of other patients and transplant recipients. All of us have different situations and different experiences. Some are “much worse” than me. They have stories, from a health perspective, a personal one, or in many cases both, that I cannot imagine having lived through.
As the first anniversary of my transplant approached, I thought of a conversation I had with a friend while I was in hospital directly after surgery. I was still feeling pretty awful but was in a good enough frame of mind to start to think about being discharged and to consider what I might want to do with this new, healthier life that awaited me.
I’d seen the news articles that pop up every so often, featuring very accomplished transplant recipients. In many cases, they’ve recovered from near-death experiences and gone on to climb mountains, run marathons, fundraise thousands of pounds and achieve all kinds of exceptional things. They do this simply because they can, and want to show their donor families how incredibly grateful they are, and how fully they’re using the life-changing gift they’ve been given.
And then there’s me.
Where do I fit? Was I really “sick enough” before my transplant? Am I “lively enough” after it?
I was diagnosed in my mid-twenties, so I never had to deal with this illness during my childhood. I also managed to finish university before I became unwell. My family are largely supportive, with the time, resources and knowledge to back me up in virtually everything I do. These are huge advantages.
Because the early treatment I had was so effective, I was pretty symptom-free. That doesn’t mean I wasn’t sick, there were days when even the zombie apocalypse couldn’t have got me out of bed, let alone out of the house, but, compared to what other people have gone through, I feel like I have had a very easy ride.
I was assessed for transplantation with a pre-emptive transplant being the goal. While nobody could guarantee that this would happen, I knew that thanks to my age, ethnicity and otherwise excellent health, I had fairly good odds of receiving a transplant within a reasonably short timeframe. While this didn’t take away my anxiety over what was happening to me, it certainly made me aware that I was in a very good position compared to many other patients.
Even though I didn’t end up getting a pre-emptive transplant, I was still extremely lucky that beyond the initial adjustment period, I was never seriously ill on dialysis. I was healthy enough to apply for and be offered, a new full-time job just two months after starting PD. The same day I got my job offer, I also got my transplant call. You couldn’t make it up.
Uncanny circumstances aside, I often feel enormously guilty. Guilty because my “bad day” could be another patient’s goal, guilty because I can work, when so many other patients can’t, guilty because of how quickly I got a transplant, when I know how long others have waited. Sometimes I even feel guilty that I got the call at all. Because I did, somebody else didn’t. What would they have done with that chance?
So much of this is illogical. I understand how organ donation works. I know I didn’t “cheat”, and that if I hadn’t been the sickest potential recipient at the time, I would not have got this kidney, but still, over a year down the line, I’m still trying to get my head around it all.
Back to the list my friend and I made after my transplant. It was never a “reverse bucket list” of sorts, but it was a collection of things I felt like I should do now I was “healthy”. As if I had to prove how much my life had changed for the better. This list, and the things on it, seemed hugely symbolic and vitally important.
Eighteen months later, I can’t even remember what most of them were. I think that says a lot.
In the last year, I feel like I’ve done “everything and nothing”.
It’s not as if I’ve done nothing at all. I was eventually able to accept the job I was offered the day before my transplant, and I’ve been there full-time since January. I’m back volunteering with Girlguiding on a regular basis again, and I’ve taken on significant voluntary roles with several different kidney charities, as well as attending several events to speak, with sometimes painful levels of honesty, about my personal experience of kidney disease and transplantation. I do these things because they matter.
But there are no marathons here, no mountains being climbed or fortunes being raised. That’s not who I was before I got sick, and it isn’t who I am now.
Ultimately, this has to be ok. I have to get into a frame of mind where who I am, and what I do, is Enough. I have to stop feeling like I need to “be more” or “do more”, as if these things are required as some kind of proof of how ill I was, how life-changing my transplant is, and a yardstick with which to measure my worth and gratitude.
That isn’t how life works.
24 Comment
I thought I was the only one who felt this way. I was never on dialysis and only on the transplant list for 4 months when I got the call for a kidney. I told a friend who is a double organ transplant that I felt guilty that I hadn’t gone through what a lot of others have gone through and she told me had I. To been as sick as I was that I would never would have gotten the call.
Your friend is right. There’s no way someone would be listed for an organ transplant if they didn’t absolutely need one. I don’t think comparing ourselves to other patients, either favourably or unfavourably, ever really does us much good!
You are not alone… Everyone has their own way of feeling and dealing… You are warrior and don’t forget that…
Thank you! 🙂
Holly, you do more than enough, raising money isn’t the be all and end all, raising awareness as you do is much more important I think. Raising awareness let’s the general public know about Kidney Disease and how important Organ Donation is, but it also shows prospective employers that not all Renal patients are unsuitable candidates for employment. Doing what you do may let people see that not all of us are at deaths door, I myself am hoping to get back to work at some point after many year unable to, and not because of my Renal issues. X
Thanks Brian! I hope you do manage to find a suitable job at some point, if that’s what you’re hoping to do. 🙂
As the parent of a donor, all we have ever wanted is that Mandy’s recipients live life to the fullest, love themselves and those around them wholeheartedly, and to make a difference in their own little circle of influence. If that means raising awareness of organ donation, kidney disease, whatever it is, know that you’ve honored your donor by doing so. A life lived with love and respect for those around them is the most important thing my daughter’s recipients can do to honor her and her legacy.
I absolutely love this comment, thanks so much for writing it. I have exchanged letters with the mother of my donor, and in mine I wrote that I hoped I’d do something in my life that honoured the decision they made, and it looks like this sort of voluntary stuff is going to be my way of doing this.
You sound a lot like me. I got my 1st transplant in 1992 after being on PD for only 9 month and was still working full time, 3 months after my transplant I went back to work part time then back to full time, I used to go for my check ups and let every one one go in before me as they all looked ill and I felt fine, my transplant lasted 20 years and I was healthy the whole time, then in 2012 I was back on PD but this time it wasnt working for me, I went onto Hemo, 3 times a week still working full time but it all got to much so something had to go, so in 2015 I gave up my work after 33 years. I was lucky enough to recieve my 2nd transplant Oct 2017, and I cant believe how lucky I am to have two transplants whan some people die waiting for one,
I am also back helping with the Brownies which I love, and looking to help out in local charity shops
Wow that’s brilliant that your last transplant lasted you 20 years! I hope mine lasts that long! I’m a Brownie leader too (as you’ve maybe read, lol!), where in the UK are you? Lancashire North West (Preston) for me! 🙂
My first transplant lasted 6 years. I’m doing testing right now for 2nd transplant. Though I’m very angry that my first one failed so quickly, I am very grateful for those 6 years. And I do not feel any ill feelings toward others who have not been as ill as I was.
Hi I am 18mths pòst heart transplant and I made an Anne Marie’s Adventures list. And that’s about it. I really want to do more but still have trepidation about Actually doing any of them. Like you I was offered Full Time the Day I got my call. Choices choices!! I am cleared to work but haven’t heard from the school board. I just want to say Thank you I have a New Yard Stick????
Thanks so much for your comment, your Adventure List sounds great! I have done some of the things on mine, but not as many as I sometimes feel like I should have by now. But then again I’ve also done stuff that wasn’t on the list, so I suppose it all balances out eventually.
You have done more good with these words than you will ever know….thank you. I had my living donor transplant 15 months ago and the kidney is working really well. But I do wonder if I am good enough to receive such a precious gift from my best friend. Like you I do some awareness raising but I am never going to run the marathon that I once said I would. Your phrase ‘its not who I was before, and it’s not who I am now’ has given me the lightbulb moment I needed…… We all have our own story, our own outcomes. And perhaps that’s enough. Good luck to each and every transplant recipient…and as Tiny Tim said ‘God bless us, everyone’
Thanks so much for your comment, people like you are the whole reason I write this blog. I agree with you that every patient has a slightly different path, and yes, that has to be enough, otherwise we’d all drive ourselves crazy worrying I suppose.
I was fortunate to get a cadaver kidney 3 years ago at the age of 76. However I am disappointed to say that I haven’t felt “well” since then. My transplanted kidney is working at 15-18% but I am suffering badly from tremors throughout my body. I feel like a zombie most of the time. Does anybody else feel the same? Also would like to know at what percentage other kidneys are working ? Thanks
Hi Margaret, thanks for your comment. I’m sorry to read you still don’t feel that great afterwards. In terms of how well my kidney is working, I can’t comment for anybody else, but my eGFR at my last blood test was 45, and that’s the highest it’s ever been. From what I understand, there’s a huge variation in levels of transplant function. Have you asked this question on any of the Facebook groups for transplant recipients?
Holly, I, too, have been beset by sadness on each anniversary of my kidney, now 32 years old. It sort of creeps up on me and sometimes I don’t realize why until August starts to come around and I remember why. Is it “Survivor’s Guilt?’ I don’t know. But I am well aware each year that it is a sad anniversary for the family of the donor who saved my life. In the beginning, we were invited to write an anonymous letter to our unknown donor’s family. (This was before you were allowed to openly do it.) I never got a response so I concluded that it was just too painful a reminder. I’ll never know. So, each year, on August 5, II compose a letter to the family as a tribute to their loved one’s supreme sacrifice, and have it printed in a few local papers. Sometimes it goes to print, sometimes not. I always hope that somehow the family will recognize themselves as the recipients of my tribute . I also visit the prayer chapel of my church to express my thanks in the weekly intentions book and say a little prayer of thanks. These little acts help me acknowledge my gratitude, we well as commemorate a very special date in my life.
Thanks so much for your comment, I know what you mean about feeling strange on the anniversary of your transplant every year. Mine was 18 months ago (I hope it lasts 32 years like yours has!) so I’ve only had one anniversary so far, but I didn’t feel the way I thought I would, I was a lot sadder, because I thought about my donor’s family, particularly his two young daughters in their late teens and early 20s, who have now been one year without their dad. I wrote about it here, actually.
I have managed to get my head around it a bit now though, I’m not sure I’ll ever be one of those people who throws a big party every year, but I will definitely celebrate, or at least acknowledge, the 2nd anniversary of my transplant. I want it to be able to be a happy event, and I’d like to think that’s what my donor would want too.
I love that you still write to your donor’s family, even though they’ve never responded to you. This is amazing because not only has it let you find a way to “connect” with them every year, but when it does get printed in the paper, it also serves as good publicity for organ donation!
Yes hopefully, my biggest problem is my Chronic Pancreatitis. I can be fine but then be in agony, I take Oxycodone multiple times a day. If I can find something local I should be fine as if I have to take my higher dose I can’t drive, especially with the new prescription drug drive laws.
Thank you.
I have been like this for 14 years post transplant. Constantly trying to prove major goals. Some beyond belief. Second chances sometimes come with the thoughts of ‘ I need to prove to everyone and myself I have to be better.’ The new improved me’. Not sure why a transplant does this to so many I know.mamy be its the ‘ you’ve seen me at my lowest, so know your going to see me at my highest.’
I know exactly how you feel re your article about doing ‘enough’ following transplant, I had a double lung Tx 8.5 yrs ago and I’ve often thought I’ve not done enough to deserve this 2nd chance. My life improved so much from only having 17% lung function to now being 86% all I did was up my working hrs but not to full time as I didn’t want to work all hrs for them to become poorly and wish I’d done more, I did voluntary work too but I had started that before my Tx. Life just carried on but then my kidneys started failing due to the anti rejection tablets so I ended up requiring dialysis. Now being restricted to dialysis 3x week I realised I’d not done enough before, my mum luckily was a match and kindly donated me one of her kidneys so now I am back to the feeling of I need to do enough to prove I deserved this esp since it was my mum who donated! I do know that I’m booking weekends away and try do lots of new things not heroic things but just things I’d like to do and not put them off as you just never know. I’m also going to go back to volunteering but maybe in a different field to before. I only had my new kidney a week ago so I have a bit of time to decide. I know I’ll be going back to work but I’m still sticking to the same hrs as again I don’t want to work my whole time if I don’t need to. It’s about balance. You’re doing fine as you are and there’s nothing to prove. I believe as long as you’re happy and a nice person then that’s enough!!!
I too have this feeling of not giving enough back and a responsibility to the donors family to do well.
This year I have my 70 birthday and finding it hard to believe I have made it this far when I never believed I would. So not only to I have transplant guilt but disbelief and adjusting my mind to still being here!
My Tx was on my eldest child’s birthday so we never forget the day. It is mixed feelings re being grateful and concerned about my donors family who must be having a more sad anniversary.
It would be interesting to be able to get with other Tx people and compare notes.
I do my best to keep a balance with doing volunteer work and caring for my family but I agree it’s a feeling difficult to explain to anyone who has not been on the edge of life and then wake up feeling so much better.
Thank you every donor and their family.
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