Life Via a Line

On the 14th of May 2016, I married my long term partner Kim after many and I mean many years together. That was us back in August 2011 getting on the London Eye, at this point I believe we had been together 11yrs... I may be wrong..... Our wedding was a family affair, we were married at Canterbury Registry Office in front of select friends and family, my brother CJ and my close friend Sandra gave a reading and after many photos, some ruined by me we left the registry office in a white BMW onto our 'do' at the White Cliffs in St Margaret's. Our Wedding Day was a beautiful day and many tears were shed,  by my dad mainly while my sister proudly had a photo board full of photos of Kim and I from our former years.  I gave a long speech, akin to my former Golf Speeches as Lady Captain.  The cake was cut and wine was drunk and some steadily left while others were happy to stay the night and drink on till the early hours with Kim and I.  I wore a dress which wa...

Today we attended our local haemodialysis unit at Kent & Canterbury on Marlowe Ward to have my chest line flushed and locked. This past week, I have had a few issues with the skin around my line, the Tegaderm dressings have irritated my skin causing it to break down and inside the dressing I have a couple of sore areas this does not happen to everyone with a chest line, it happens to me due to my extreme body temperatures especially during the night.  I am struggling also to still lie on my back or on my left side as this is still so alien to me. Kim is still in her training phase and today was given her plastic replacement wife and underwent a fake flush and lock with the Nurse in charge of the ward.  She is doing exceptional to be honest but I haven't told her as do not want her getting a big head!! She has concerns about the flush and the 5ml drawbacks so also has some syringes to practice with - I dare not go to sleep!! Next week hopefully my plasma exchanges will...

Elliott Charles Pluck is my sister's son and currently my only little nephew, I am lucky enough to also be his Godmother. I can remember the day my sister told me she was pregnant, I was dumbstruck as I never actually thought I would hear those words, I am not someone who expresses emotion easily and I really didn't know what to say or do.  During, this time my sister was being investigated at Kings and I prayed and prayed that she and her baby would be free of my condition. Countless trips to baby shops and buggy chat still didn't make this seem real. Stacey got the all clear and saw a different Consultant and 7 months later when Elliott was born something happened to the bond between my sister Stacey and I, it grew stronger as she could see the love pouring out of me onto her little boy.  Stacey and I are not only sisters but she was born on my second birthday at home in the bathroom while I was waiting for my birthday cake.  Over the years we have shared man...

My central line was inserted on the 16th June at Kings, central lines can also be called a skin-tunnelled central venous catheter or Hickman or even a Groshong Line. The lines are long, hollow tubes made from silicone rubber. My neck was checked several times for a suitable vein using ultrasound technology, this areas was then cleaned thoroughly with antiseptic solution.  They used a local anaesthetic to numb the area and then made a small cut in my skin near my collarbone on my right side, this is the Insertion Site.  This site was secured by stitches. The tip of the line was then gently threaded into the large vein above my heart. The other end of the line was then tunnelled under the skin and an exit area was made in my chest and secured via stitches, I was then x-rayed to ensure the line was in the correct position.  The lines (I have 2) are sealed with a bung and the lines have been heplocked to avoid clotting and are clamped during non use. This exit are...

Plasma exchange (PEX or Plasmapheresis) is the treatment that works for me and is the reason why I have the permanent chest line.  Plasma is the liquid part of the blood. Plasma cells make proteins called antibodies (immunoglobulins). In some conditions, abnormal plasma cells make large amounts of immunoglobulin. Plasma exchange can reduce the amount of abnormal protein in the blood. However, it does not stop the protein being produced.  During a plasma exchange, blood is extracted through a cannula in a vein in your arm. The abnormal plasma is then separated out by a machine and replaced with a plasma substitute. The blood is then returned to your body through a cannula in a vein in your other arm. The treatment has few side effects, but I do often feel light-headed and have a little tingling or numbness in my fingers, mouth or nose. These symptoms are treated easily with calcium in large doses such as Adcal D3. 

On Friday, I had some extra stitches placed in my chest and it's very painful. My chest is bruised and extremely tender. At the moment I feel apprehensive about the future, about always having this chest line, about what my life will bring, the changes that we will need to make. Watching Glastonbury knowing that I cannot really go for hygiene reasons even though my wife absolutely loves it. Never before in shops have I been so cautious about people knocking into me, we went to the Outlet yesterday and some of the stores I waited outside as being jostled and knocked is not really something anyone relishes but right now I cannot take that.  We noticed yesterday the amount of people staring as the line is visible over the top of my vest, I suppose though I may have stared. All I know is my life has changed and I am dependent on my wife, I hope going forward the dependency reduces because I feel like a burden.

After several stays in hospital and new medications I had started swimming again and weighed in at around 62kg. I decided I needed something to help reduce the lactic acid build up and the pain my legs were in, along with this I also needed a new focus once I said goodbye temporarily to Golf, so my wife bought me my first Road Bike - a beauty infact, a Scott Contessa in an XS.   I peddled away for 20/25 mins everyday, singing badly without fail and it gave me my focus, gave me drive and gave me ambition, along with swimming around 40 lengths every morning this was keeping my mind active. In 2013, 2014 and 2015, I kept the cycling up and changed to a specialized bike and got a new Turbo trainer while my wife moved into Rollers.  2016 saw a massive decline in my health and from March onwards I didn't touch my bike.   In December 2016, my wife bought me a new Ruby to match her Roubaix hoping that one day once the line was settled I would ge...

In 2012, August 17th if we need precision, I found myself desperately poorly and was given a bed in Kent & Canterbury with High CK, oedema, rash and unfortunately I could not pass urine and was running a fever. On 20th August I was moved via Ambulance to Kings as I needed further treatment and help from my team at Kings.  I encountered my first walking aid during this period and even left hospital with it 5 days later and remained using it for 2 weeks afterwards.  I started steroids after this hospital stay and didn't get off them till 2016. 

Often, like everyone I drift off during the day thinking about my life before this condition, it was very different made up of gym, work and golf with my family wrapped around all three. 2010, was also an incredibly important year for me, I became Lady Captain at Hythe Imperial Golf Club at 30yrs old, to date one of the youngest Lady Captains in the UK.  I played off of scratch on signing my captaincy and ended it on +2. During this period I became poorly with what felt like a fever in the beginning, this fever never left and soon changed into the life altering condition I have today. I don't hate what has happened but several times have questioned why me and I have come to the conclusion that it's maybe because I am a strong proud individual so I am able to deal with how this condition treats me and how often it completely envelopes me.

Saturday 24th June, 2017 catch up in Dover with my sister Stacey and brother CJ and his wife Jo.  Coffee and a little cake, chats concerning the baby due in Winter to my brother and his wife, chats concerning maternity clothes and eventually chats regarding my permanent line. It was the first time my brother and his wife have seen the line and had put off for over 1hr and 40minutes mentioning the line but I decided it needed to be discussed to allow any questions, Stacey assured them it looks so much better than a week ago.  My brother and Jo, decided that it is better to have me well and for me to have longer periods of pain free life than to worry about the line + the line is not that noticeable. We discussed upcoming plasma and how Kim will do the majority of the looking after of Ode and eventually we got back to a less somber subject - little Elliott who is growing up very fast.

It has already been a week since the line was put into my chest in Kings College Hospital in London and this morning we took a trip to the local Haemodialysis Unit at Kent & Canterbury Hospital, Canterbury. I will be spending the foreseeable future under the Haemodialysis Team at Canterbury so today was on my best behaviour. £2 charge for blue badge holders is fairly new, got to feel for the hospital car park as it must be losing money if it needs to charge disabled people. The Nurse in charge was lovely and extremely approachable which helps in situations like this. An educational session on flushing and locking the line for my wife and I and in a couple of weeks we will be doing it all alone. Next week Kim will come away with homework in the form of an old line to practice on, I have a funny feeling when I sleep I may be a dummy patient aswell... During the show and tell she noticed the line was a little loose so offered to put in a stitch or three!! A little finger and all ...

On the 16th June, my life changed when I had a Hemostar tunnelled permanently into my chest. After waiting months for this day, it finally came and at just gone 2pm I went down to theatre to have the line inserted.  A touch of Local anasthetic and a couple of stitches later and the Little Terminator (my new name on the ward) was created. Life has changed since the line was inserted, after spending 30+ years sleeping on my front or on my side, sleeping on my back feels odd to me and currently no amount of silent night pillows and mattress toppers will make up for this fact!