In at the Deep End.

 

Hi everyone. I have been thrown into this blogging world purely by chance. Which brings me to how I pretty much ended up being thrown into the renal world. Seven years ago I had a good job, I was a Nurse Practitioner, I had a young daughter and a partner. However my life was far from perfect. You see both my partner and I were battling a secret alcohol addiction. I recognised there was a problem and even though I still had strong feelings for my partner I decided to leave him and with the support of my father I had to move into rented accommodation. Anyhow, to cut a long story short I struggled with my inner demons for two years and had to move house three times, (due to my ESRD and financial circumstances). I couldn’t understand that when I wasn’t drinking I still felt unwell, drained and nauseous. I didn’t have any of the classic symptoms of renal failure such as ankle oedema. When I left my partner I was 18 stone and I lost 3 stone suddenly in 3 months. I put it down to stress. However, despite having routine blood tests through the GP and Occupational Health my renal failure wasn’t diagnosed until the end stages. I had two clinic appointments and following a biopsy was informed I would be commencing dialysis very soon.
I found it hard to grasp this information. I couldn’t believe after everything that this was happening. I had plenty of medical knowledge but this world of tessio lines, fistulas, target weights, renal diet, HDF and HD was completely alien to me. I had no previous experience of dialysis as it was not my specialty and a placement not covered during my nurse training.
During this period I decided to leave work and move closer to my parents for their support. I finally, after sheer willpower beat my addiction. However, prior to this, because I was still drinking from time to time I ended up quite ill and was admitted and had a tessio line put in my chest for urgent haemodialysis. I felt very alone and scared, worrying about how was I going to cope at the age of 42years, a nine year old, a life changing illness, a new house and no furniture? I was admitted for eight weeks and had a PD tube inserted to commence APD, overnight peritoneal dialysis, upon discharge. Whilst I was trying to absorb what was happening I kept trying to convince myself that the Drs had made a mistake, that I had been mixed up with another patient. As I had worked in the NHS I was aware that confusion with medical notes was a possibility.
As well as blaming myself for my ESRD my family also blamed my diagnosis on my alcohol abuse. As I am one of six, I have to say certain members of my family put two and two together and came up with ten. However, my renal failure had nothing to do with my history. I was diagnosed with an autoimmune condition. I have had six different Consultant Nephrologists tell me over the years that had I never drank, I would have become ill anyway. Following all the appropriate tests I was informed that my liver function was normal and also my CT scan. Two years ago, my daughter and I were lucky enough to move to a larger property. This was done through my own searching for appropriate accommodation and now I live in a property that is suitable for me to dialyse at home. That is where I am at now. Had it not been for the support of my daughter, parents and staff of Central Manchester Healthcare Trust I don’t think I could have got through the past few years. My daughter suffers with severe anxiety and depression. My siblings still blame this on the past. Yes, I’m not denying I’ve made mistakes but as well as having a mum with a chronic illness and all that entails to cope with, she unfortunately lost her dad to his alcohol addiction two years ago. I have struggled myself at times to accept this. I lost the father of my child, the man I spent twelve years of my life with. I feel at times that I haven’t been allowed to grieve. My daughter and I do have many happy memories that we share. I have found from my own experience that family have been very quick to focus on the negative aspects, but I don’t get any credit for eventually leaving that situation. Nobody can know how they would cope if they were in that situation. Sorry, if this blog has babbled.
So, that is how I was ‘thrown in at the deep end’, it was a case of sink or swim. I just hope I can stay afloat.

6 thoughts on “In at the Deep End.

  • Agree with the others Maggie….you are brave to pen this from your heart. I hope things are still ‘afloat’? Sometimes people are judgemental because they don’t know how to react. Sometimes they only see the more visible life events, maybe they just live their lives being judgemental to all humans around them. It needs a stronger person to try to find ‘positives’ to live alongside, even though all around them seems to be falling apart. You HAVE managed to chip away at some positives to help you survive with your daughter, even though you may not see them as positives. Some of us get dealt a hard hand in life, and we have to be almost superhuman to pick ourselves up and move on, especially when illness is all consuming. Well done. It is SO very hard. Remember this…..for every negative person in your life there are dozens outside here who admire you, SO KEEP your chin up and spend as much time with your daughter as you can. Keep telling her how she has helped you to get this far. My son was my rock through Rob’s long illness and eventual transplant, despite his young age. Unfortunately, he has inherited the ADPKD gene too. She needs to know her value and build on her self esteem, because she too has been through a lot with you. Take care.

  • Hi Maggie,
    Just a quick note toi commend you for your honesty and story/blog which must have been very difficult for you to write. This is a very difficult disease to manage on it’s own let alone other difficulties and issues which you have had to deal with. There is one thing for certain – these trials do make is stronger as a person, sometimes not by choice, but they still do. I understand your plight as I myself am a Home HaemoDialysis Patient with limited kidney function. I pray each night for a transplant to occur the following day, but the days do come and go – without having a successful outcome. Be strong, look forward, smile and know that behind your smile, the true feelings that you have are shared by other Patients in the same set of circumstances. It is no consolation I know, but please take my best wishes that with time, things will come good for you. Best Wishes,

  • Maggie, you have shown great courage in sharing your story with us. It is indeed an unfortunate state of affairs when people, I mean healthy people are quick to judge our condition by how we lived in the past. But some how nomatter how low we have been in life we have all managed through sheer willpower to overcome the many barriers we have had to face to get to where we are today.

    I take my hat off to you for not giving up on your goal. May I wish you well for your future and that a transplant is forthcoming so your mother-daughter quality time improves. Family is most important at this time and you are fortunate that you have had the support of your parents especially your daughter, so keep giving her hugs.

  • Thank you for what must of been a very hard and emotional story to write. I used to drink quite a bit but fortunately not to the point of addiction but I have seen it happen, my Mum was addicted and it eventually killed her. I have Chronic Pancreatitis and, as you say, people a quick to judge. Even medical staff tend to ask if I got it through drinking, when in fact it could of been caused by a number of things from medication to gall stones.
    Well done for getting through this and coming out the other end a stronger person by the sounds of it. You are under a great team at Manchester, I spent most of my adult life under there from 15 – 40 and now under Salford due to where I now live.
    Keep it up and things will carry on getting a little easier to cope with.

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