A little reflection, plus it's time for me to talk transplantation......again. After reading a few posts from friends in our transplant family and my latest attendance run in with Eloise's college I thought I'd write a few words. I know that all my friends who have either received a transplant themselves or who have a transplanted child are thankful. We know we are lucky and blessed because of organ donation. We know that others aren't so lucky and they die waiting, we know because we have lost friends from our community. It's our reality.
The thing is transplantation isn't a cure and if you say we should be thankful when things are bloody tough mentally or physically for us or our loved one its not always helpful ! We are thankful, we are grateful but let us vent, let us rage, let us say what life can truly be like after a heart transplant. For the most part Eloise's journey has been smooth, one rough year out of 15 gives her a good percentage of "normal" life. I just wish we could forget about it. However this isn't the scenario for all our transplanted friends, some of them have complication, after complication and are constantly hospitalised others aren't the person they were before the transplant mentally. The mental health side of things affects the carers too.
Of course before I was thrust into the world of transplantation I was pretty uneducated in it even though I'd been a nurse for 10+ years at that point. So I think the easiest way to explain things is you change one terminal illness for another. So in Eloise's case she was in heart failure following a rare complication of hand, foot and mouth disease. Having a heart transplant saved her and has bought her extra time but no guarantees . Transplantation comes with so many what ifs , so many complications, medications that have side effects, side effects that need medicines. An immune system that is suppressed to stop the transplanted organ rejected. An immune system that cannot always fight off a common infection leading to hospitalisation, prolonged treatment and sadly sometimes even death. It's such a fine balancing act and simple parts of growing up can tip the balance as we found out to a cost when Eloise hit puberty. Her doses and types of anti rejection medication were no longer enough to stop rejection.
I guess we get through all of this because we have to, this is our reality. We can't change what's happened and maybe it's a good thing that we don't know what's ahead. I used to wish so hard that none of this nightmare had ever happened, I'd have traded almost anything to have Eloise whole again. Sadly, however much begging I'd do somethings cannot be changed, so no point in dwelling on it. This is why we live life in the moment and one moment at a time. I want Eloise to have a full life and so far because of transplantation that's happening so for that I am truly thankful. We don't really have any other choice, I just want Eloise to be the best she can be.
The transplant journey isn't easy, it involves decisions no one should ever have to make. It's so awful knowing your dying child (loved one or even you yourself) is lying their waiting for the right person to die, for an organ match and ultimately for a brave family to make that decision to donate organs. It's hideous and messes with your head, you feel like the grim reaper, you're desperate and clinging onto hope. I hoped Eloise's own heart would recover, with medication, time and mechanical support. I wanted her to keep her own heart but time ran out, medication and science could no longer sustain her fragile body.
It's now the Winter, so let's see how Eloise's immune suppressed body copes this year, she's only just received the flu vaccine and has already had five days off this term with a cough. Hence the bloody stupid attendance letter ! That has been dealt with and multiple apologies have been received but really that's not the point ! So please be mindful if you are unwell please keep your germs to yourself if you have a transplanted friend. Plus don't be offended or moan when we turn you away or cancel plans. Germs that do little to you could ultimately kill someone who is immune suppressed. They may need to be hospitalised and other organs maybe affected. So an illness that's an inconvenience to you could wipe a transplanted person out.
Long term complications , none of those lead to you being thankful either ! They can happen at any time sadly. The medications used to save a transplanted person and keep them alive have side effects that have a knock on effect with other organs etc. The anti rejection drugs are harsh on the kidneys leading to kidney damage which can progress to kidney failure which requires a transplant ultimately and dialysis in the interim. The drugs can also cause cancer. Basically it's fine tuning and it's a continuous thing which requires a battery of regular blood tests, echo's, ecg's and other more invasive investigations . It's just never ending and the fear of the Drs finding problems never goes away. Maybe it even intensifies the more years you are post transplant as it's a known fact that transplanted hearts develop coronary artery disease.
Initially I was very reluctant to even consider heart transplantation for Eloise, then she fought hard to stay alive during her transfer to the freeman by plane that I had to give her a chance. I continued to wonder if I'd done the right thing for some time, maybe years if I'm honest with you. But now I know I so did the right thing for Eloise. I'm just a mother desperate to give her the best life possible regardless of survival times. Being in the transplant world has changed me and my outlook on life, for the better I think. Saying yes to Eloise having a heart transplant will always be the biggest decision I ever make in life. Now though I can talk things through with her and know I did the right thing which eases my conscience and lifts my soul. If we ever have to consider re-transplantation the decision will be entirely Eloise's and I'll support her all the way.
So here we are facing a future of uncertainty for Eloise with medical dilemmas and health issues but a future that wouldn't be happening without organ donation. So I'm thankful that having a heart transplant was an option for Eloise. I'm thankful for the wonderful care she continues to receive from the NHS . I'm eternally thankful to her wonderful donor family without them......well without the gift of life I know for certain Eloise would have died a few days later. They've given me time, 15 precious extra years of it. I'm watching my toddler grow up into a strong woman. She's a very special person and I'm proud to be her mummy. Time is so precious, don't waste it by being negative and wishing time away. Live in the moment and enjoy all the little things. Eloise's transplant taught me that. None of us know when our time will be up anyway , it's in the future, so today just enjoy and keep breathing xxxx
