In the last two months I’ve gone from not being able to walk after the nefrectomy to swimming like a mermaid! I have made such an improvement, even I am amazed. Everyone I see that knows me says ‘WOW, you look great!’ I’ve put on weight, I’ve got colour in my face but the main thing is, I’m happy. I feel like my life is back on track and my ultimate goal was to be able to swim by my birthday, and it happened! I am now swimming everyday and enjoying the water more than I did before. I have always loved the ocean but now, I am IN LOVE with it and have a new appreciation of the feeling of being smothered by water. Don’t forget I bathed in 5inches of water for 5 months. I washed my hair in a trough and over the Xmas heat wave while I watched my family dive into the ocean, I could only put my arms and legs in the water. Not anymore!
I am now well and truly on peritaneal dialysis and appreciating my new found freedom and independence, not to mention feeling prettying amazing. After each heamodialysis session, I would feel so washed out and drained that I would have to spend the rest of the day on the couch to recover. I would have to drive 30mins there, get plugged in by tubes in my neck, sit there for 4 hours then drive, completely knackered, 30 mins home again. My BP would drop to the point where I couldn’t even stand up, I was that dizzy. I still can’t believe I did it for 6 years before my first transplant. My poor heart.
Peritaneal dialysis is completely different. Yes, I have to put up with a tube, that drops down past my knee, but I feel the same every day. My daily routine consists of doing bags around 8, 12, 3, 6 then my last bag around 9pm. I wash my hands for two minutes, wipe down the equipment, set up a bag on the stand then plug myself in. I drain out the fluid that was ‘dwelling’ in my peritaneal cavity which takes around 20 minutes. In the fluid being drained out, an average of 250mls of extra fluid plus all the minerals that usually your kidney leaves the right amount of in your blood, comes out. Yes, the fluid is a little yellow which amazes me every time of how someone came up with the technique. This is the oldest form of dialysis and apparently in the old days, they used to put needles into the belly to inject the fluid in and out! Gross. I then use that fluid the water the lawn. I’ve never seen the lawn so green!
I miss my friends on dialysis and being able to console each other when were feeling down but I am seeing my ‘healthy’ friends so much more and they keep me going. Unfortunately, my BP is really high at the moment so I’m back on some meds for that but I think my body is just transitioning and it should mellow out soon. Theres always something going on but it reminds me to slow down and not get too excited. I’m not sure how I feel about my future and the ‘when’ I may get another transplant. It’s sometimes too hard to think about because it is well and truly out of my hands. Dan has had all the initial testing but because he is of different blood group, he will be the last resort. My sister sent off the referral letter two months ago, but hasn’t been allocated a specialist as yet, so hasn’t done any more testing. I have reminded them al, at the hospital but procedures have to be followed and so I just sit here and wait. I know for a fact I’m not even on the transplant list as my doc says its better to get a live donor and that we should exhaust all those avenues first. I just have to trust him and concentrate on the fact I feel good. I believe in destiny, god and the unknown. It’s nice that I do because not sure how I would be if I didn’t go with the flow.
My little body amazes me every day. I can feel the anchors in my belly of where my tube sits. Getting the Hickman line out was like, so my friend told me, having a Caesarian. I could feel the pulling but not the pain. My scars bear the past but are now tanned and faded. So much anticipation of what, when, who but for now I am grateful that I am alive and have come so far in the past few months. I’m back at work, doing my bags in the back room and wonder when I put a sign on the door, back in 20 mins, how many other people just get on with it like me. I get to start yoga next week and we are learning to mediate, all in the sake of getting ready for the next big operation, however long it will take.
Every decision we make now is based on the future. We have a mortgage which is not small enough that if we rented our house out, it was covered so we want to sell and build a smaller, cheaper home. We hope to put it on the market before Easter and if it sells quick, that’s our ticket for a caravan adventure up north as I can travel with the bags. We hope the timing will be right and once I get the transplant, our new house would have started being built then 6 months later, once I’m better, we move in. The reality is, we will have to relocate for at least 4 months as the initial few months, they test the kidney almost daily for signs of rejection. I’m excited about my future and that makes me happy. I’ve done it before and the key things for me to get through it are to stay positive, get fit and put my faith in my specialist oh, and also believe my family and friends when they tell me how strong I am because, believe me, I wish I didn’t have to be.
You wouldn’t believe where I am writing this right now. 10 minute drive from my home, I get to sit on an amazing beach,sheltered by a rock from the sun, with no one else around. I’m so blessed and although my life is a bit tough for now, its not forever and I will always be grateful for who I am.