The smile on her face and her bubbly nature does well to mask the pain and struggles that has become her everyday life.
Born with cystic fibrosis (CF) Sammie was given a life expectancy of 18. To make things worse at the age of 13 she developed CF related diabetes to add further complications to her life. Something as simple as a cold or a flu would see Sammie in hospital for weeks at a time.
Despite what the doctors said Sammie defied the odds and reached her 25th birthday. For Sammie and her loved ones this turned bitter sweet as a few months later she was told her kidneys were failing, after a one month stay in ICU her kidneys had completely shut down. She required Treatment (haemodialysis) but unfortunately the CF complicated the ability to receive treatment. Being in a hospital setting made it impossible to have the treatment necessary to keep her alive. That wasn’t going to stop her or me for that matter. We opted to have two months of specialist training that would enable us to take home a dialysis machine and all the equipment necessary to provide the treatment to ultimately keep her alive, and currently she is still smiling and battling on.
At first a typical day was 5 hours on the machine, in the afternoon, done every second day. The first 12 months of that went well, but unfortunately the amount of time on the machine was too short and this caused her blood pressure to drop. With weeks of tests we had to start doing up to 9 hour runs over night to help her body cope.
· The video below is of us putting her on the machine (Caution! Large needles are shown being put into her artery's (fistula).
I wish this was the end of her story but it’s only the beginning.
Recently Sammie developed nerve and muscle weakness which has caused her to have troubles living her everyday life and is causing her to have unexpected falls. Something as simple as bending down to pick up a jacket off the floor, or go to the kitchen to get a glass of water.
One night she went for a drink in the kitchen but her legs gave way going down the 3 stairs that we have and she fell onto her face, her jaw cutting through chin. Sammie held the tears and had a laugh with myself that is was time to go back to her second home.
So 4 o'clock in the morning we were sitting in emergency, she had 6 stitches in her chin and 4 broken bones in her legs. We didn’t know about the breaks yet though, and so we went home. Sammie was called into hospital for a few tests to work out where the nerve and muscular weakness was coming from. It wasn’t until then that they discovered the breaks in her legs. 6 more weeks in hospital, with constant testing and a lumbar puncture and the cause of the weakness is still unknown. The outcome was to come home and hope it gets better with time.
Today she is now back in hospital for a lung infection caused by the CF. Normally it would be okay for us to do her IV medication at home but her lung function is down to a critically low 28%, so she has to stay in hospital until it improves.
Her worry though is that they can’t accommodate for her 9 hour dialysis runs like we do at home. She says she feels like a burden on others, that she requires too much help. But we manage.
After all that, I haven't mentioned the blood clot in her heart or the calciphylaxis of her legs, the diabetic retinopathy in her eyes or her blood pressures of usually 200 over 120. The 9 hour dialysis runs overnight are often met with bed sheet changes from her needles leaking too much blood or her not making it to the toilet in time. She needs help to get to and off the toilet most nights. She feels terrible that I have to help her so much. She is only 27.
With all these complications I have slowly had to transition into her full time carer so I'm able to be there and help with most aspects of her life. From helping her down the stairs to pushing her in a wheelchair around the shops on her bad days. Sleeping at night when she is on dialysis is impossible, so I stay up and watch over her. This has made getting to work the next day challenging, I have started to lose jobs(as a plasterer) as I am only able to work about 4 hours before I have to head home to help my wife. Its the least I could do.
We got married just a few weeks ago at the registry office. We originally wanted a wedding with all the bells and whistles, and when my family asked my excuse was we wanted to have a cheap wedding and get it done. Reality was that she is getting sicker and I needed to be there as her husband in case her final days come to quick. We don’t know how long she has but I am hopefully my kidney will be a match for her and that it will extend her life.
Despite all of our day to day struggles normally we are the kind of people that don’t say no to anything, and put our hands out to help people in their times of need.
The reality is our bills have now piled up and we have no money left to pay them. Sammie’s medications for the CF and diabetes take almost all of our money at the moment. We are both starting to feel down on ourselves. After all she goes through I feel as though I can’t even keep the roof over her head. We are the last to want a hand out as everyone is struggling, but I don’t know what else to do.
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