Just go with it.

On the 5th December, I had my transplanted kidney removed and a pd tube inserted into my belly……I’ve experienced pain, and I would consider myself pretty tough. I have never been one to pop a pill for a minor ache so to rely on hardcore pain relief to even talk, scared the shit out of me. This has been so hard for me to overcome, physically more than emotionally and I thank god in a way that I’ve been medicated up to my eyeballs for days, that I didn’t have time to comprehend how sad I felt for losing my mums kidney.

My mum has a cut from here to eternity and gave me life twice. I lived it well. Travelled, laughed, fell in love but most importantly……..took dialysis free breaths. Just thinking about it now makes me smile. To breath in and out with only that breath to worry about is simply beautiful. Now, I take a breath and know the only reason I can, is because this machine, these tubes help me. Grateful much???

I was in hospital a week post op and was discharged still in a huge amount of pain. To be expected as apparently nefrectomies are one of the most painful recoveries there are, as told by the ward physio and they have seen a lot of post op patients!! I slowing walked out of the ward, licking my wounds. I was told I had to get out of bed at least three times a day to go for a little walk and that the pain WILL get better. It didn’t. It got worse and as the swelling around my tummy subsided, I was left looking at a massive alien looking bulge at the top of my nefrectomy scar. At first I thought it was the way I was stitched up and it will go down over time. I was desperately trying to remember my recovery and wounds from the transplant. It just didn’t seem as bad as this, even when I had to get my kidney scar opened up again after three months. Is is because I’m of the ripe old age of 37?

With my beloved hubby coming back from the chain gang on Thursday night, the next day we decided we better go and get this ‘thing’ checked out as I could hardly walk because of it. This can’t be normal. The last words from my surgeon were, if you have any problems you know where to find me. If was off to Emergency. To describe what it was like to have, what turned out to be a surgical heamotoma, growing on my wound, I can only imagine would be like to have a pregnant belly. Tight, hard to stretch your shoulders back and stand straight up but with pain associated to having a wound that spans your pinky to thumb, that starts to the left of your belly button down to your groin. All this plus a fresh pd tube line inserted which I haven’t even come to terms with yet. I look like a robot. I honestly do. I am now part machine and get plugged in via a tube in my neck, for now, until I get plugged in via a tube in my belly.

I was never shy of my naked self, proud of my battle scars, but my body scares me now and A full frontal glimpse, is quickly followed by my mantra, ‘strong mind, strong body’ with an added, ‘this is only temporary’. I somehow know, deep down I will get through this. For now, its hard and the events of the last few days has tested me. I was sent home from ED and told this heamotoma should eventually find its way back in my body. Really? The surgeon knew I wasn’t convinced so he gave me his mobile number and reassured me to call if i was worried about anything over the weekend. I called him Sunday morning as it started bleeding just a little bit and walking was becoming even more difficult. He mentioned if I get a temp, it doubles in size or changes colour then its serious, but for now it was better to leave it alone. Putting a needle in it to drain it is just increases a chance of infection. I wish he would of mentioned that any extra pressure, like a slight cough, could open the wound and blood would start pouring out. And that’s what happened with my six year old niece sitting next to in the back of a car.

Blood soaked through my dress, down my undies all over the cardigan I used to put pressure on it. I looked into my 6 year old nieces eyes and said, ‘I’ll be ok’, and she believed me. I was scared but the relief I felt with this thing deflating before my eyes was amazing. I was bleeding uncontrollably, but it felt good. How the hell do I process this? I was rushed through ED and was seen to by a doc and gave him the low down in 30 secs. Kidney failure at 9 months old but 25% of one held on until I was 18 where I waited 6 long years for a kidney on the donor list. Nothing, so my mum came to the rescue with the delay in her donating due to her own medial issues. Fast forward 13 years and the kidney was killed by a rare stomach bug that took two years to diagnose. Having heamo dialysis through a Hickman line for the last three months and had a nefrectomy of the transplanted kidney plus a peritaneal tube (pd) tube inserted at the same time. Pd tube not in use until it heals and was in ED Friday to figure out what lump was.

He said I speak like a doctor. Would you believe he had to express the rest of the heamotoma like a pimple. Bearing in mind how tender and fresh the wound was, pressing down all around it. Heamotoma’s are apparently very painful. Well at least now I know I’m not a complete wuss and what was stopping my recovery. I went to see the surgeon today and upon examining it, to his surprise and more to mine, I had blood spattered all over my face. He said, ‘well that was the last 20mls of it.’



7 thoughts on “Just go with it.

  1. Living in constant agony with severe degenerative arthritis and constant trips to Emergency and doctors and having contracted every known disease of illness over the years I could relate perfectly to your day, week or month. Reading your story has put my life back back in perspective again which I am grateful for. I forget in the midst of my pain that others are suffering too! I have to admit I have goosebumps from head to toe as I can feel your pain. I have prosthetic knees, implants to override my nerve system and battle scars from head to toe and I can feel everything you wrote about BUT, but how brave are you for sharing how your day really is. I love that your hubby is as loving and perfect as mine is. God Bless!

  2. Hi Beautiful…still thinking of you and praying always. Lots of love Silv, Andrew and the girls..love you more…

  3. I admire your courage (not that you have much choice). Thanks for the blog, it acts as a heads up for me in my journey. Good luck with the recovery and I’ll check in here in the future. Merry Christmas

  4. Dear Maria, You are amazing…Hang in there we love you dearly little cousin. I remember the early days when I was with your beautiful Mum…it seems like yesterday. But time moves on and we all face our battles and challenges in life some like you more than others. It seems so unfair ! But one thing is certain what counts most is love, family and a strong will and determination to …Just get on with it as you say. Lots of Love Caterina and all the family xx

  5. Hello Maria, It was a pleasure meeting the two of you in ED recently. Chelle was very excited that we had met. What a coincidence that was! I’ve just ready your story above and it made me smile. I don’t think you look like a robot, I think you look like someone who has a visible lifeline attached. I’m very grateful that we have the medical technology to keep wonderful people like you in our lives. Best wishes for your upcoming PD training. You will meet some lovely caring nurses at the centre. Love from Jennifer

  6. Hi. This is the first blog which I can totally relate to. I started my blog in Nov 2012, I’m on PD, wouldnt be a huge fan of the cathether, cant go on hols, dont know when I’ll get called for a transplant. And may never have children. Im 35. Your right in that it can be very frustrating. But I tell myself i have to be positive. My webpage is http://www.kidneyfailuremystory.com
    I wish you the best and Im going to follow your blog.

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