Welcome Home Mr Hickman! January 2011

I cannot begin to describe how wonderful it was to come home on Christmas Eve, I had been in hospital since early December, I left for Papworth in heavy frost and frozen snow and the weather was the same coming home.  When I got to the house, Rob had lit up the house with Christmas lights and with the snow it looked beautiful. He had brought a picture into hospital of the house lit up and covered in snow and I had looked at it longingly every day, hoping I would get well enough to come home. I felt like a small child full of the excitement of Christmas seeing it for real. The photo will always be special. I walked through the house in wonder, Rob and the girls had decorated it all for Christmas and they had tried their best to do it how I would have usually done it. It will take a lot to beat those first few special moments that evening and it felt like the most magical of Christmases, the whole Christmas holiday.

We brought in the medication, there were box loads and we would need to find a home for this in due course. It would have been good to be coming home and to think I would be recovered in a few weeks, but instead we were completely daunted by the medication regime, having to do it for the first time - and probably the next 50 - without the nurses on hand was stressful. At first we were fraught with problems: bubbles in the syringe; bubbles in the line; getting those little bits of liquid out of the bottom of the bottles; epoprostrenol squirting all over the kitchen; screwing on and unscrewing lines and connectors; fixing the syringe onto the crono pump without losing all the drug; actually just using the syringes - it was hard pressure on your hand and fingers; changing the dressing without sticking it all back on itself and even just remembering to unclamp the clamps on the lines when all was swapped over.

Tarn Hows

We found our own little ways of dealing with things, some which the nurses might not approve of - propping up the syringe and crono pump with the cookery books until the bubble comes out and a few other little bad habits! We had to undertake the procedure twice a day and in time we both got more confident and it became second nature. At the beginning though we could not envisage this and it was a major stress. I always had to remember to take a whole set of spare kit with me wherever we went in case of emergency. This I still have to do.

We made the trip back to Papworth twice during the Christmas period, one to have my stitches removed around my Hickman Line and one to pick up even more drug supplies. We had to go to the ward and the doctors and nurses were pleased to see us, they said the ward had not been the same without us (and the few other patients who were with me up to Christmas) and they were delighted how well I looked. I had the chance to thank them and there was lots of hugs, it was all down to them I was well and truly back on my feet again. Papworth was beginning to feel like another home!  

Getting used to always wearing a catheter that delivers drugs twenty four seven and cannot be removed under any circumstances was difficult too at first. Daily bathing and showering became difficult as non of it can get wet, so no quick jumping in the shower or bath any more for me. Washing hair was difficult as I had to lean forward quite a way to avoid getting anything wet. A kind patient who had been on the ward with me at Papworth had given me lots of good advice on this, as she had had a Hickman Line for three years prior to her lung transplant and I will be forever grateful for her kindness towards me. She was very poorly following her transplant and I hoped she would manage to have a lovely Christmas before she came back to Papworth in the New Year as was planned. I rather hoped I'd bump into her again. As always you find ways around problems and with her advice, a bath step, safety mat, seat in the bath, bath chair by the bath and a helping hand from hubby life was made easier. For the first few months bathing was always the thing that nearly brought me to tears, I don't really know why, perhaps because it made me feel vulnerable and disabled. I used to get over it by thinking about people who really are disabled and the soldiers who had lost their limbs and what a struggle it must be, my problem was nothing compared to that, I just had Mr Hickman, my extra bit, I hadn't lost anything so I was lucky!

Sleeping was also a bit tricky as you do not really know what you may do in your sleep. I had to have enough leeway on the line for turning over when I didn't know, so I had to unravel the line and have it out with the pump on top of the bed covers. I had to make sure there was enough room on the bed so it would not slip off to the floor and cause an occlusion, as it had done in hospital. I felt I had to sleep as still as I could in one position so as not to roll on it.

My husband and I had three people in our marriage now, us and Mr Hickman! Mr Hickman is always a nuisance, needing his syringes to be changed every day, needing his line changing every other day, his connector and dressing changed every week and worst of all taking his bath with me and sleeping in the middle of me and my husband! Sometimes when he's being a real pest he can beep at us because we haven't cared for him properly and we have to put him right immediately and sometimes he's a real nuisance and insists on creating a little drama and making us transport him back to Papworth. We have a love/ hate relationship, but we are used to him now and at the end of the day he did and still does save my life!

Coniston from Brantwood

The medication was working well and Rob had taken a month off with me to help me recover and get back on my feet. We had some lovely time together, going to our cottage in the Lakes, seeing family and friends, entertaining and going out for meals and life felt pretty good again, within my limitations. I was still a little breathless and still got very tired and still had to cope with all the drugs, especially the diuretics and the intravenous drugs, but we were making plans. Rob planned to go back to work in early February. I got the good news that I could have an ill health retirement pension from both my teaching career and my banking career.  (Well if you can call retiring because you are ill good!) The doctor had said I needed to advise the DVLA about my condition and I had got the all clear to drive again. I was getting out and about on my own with more confidence than I'd had before. I began making some grand plans for our back garden. I had always wanted a summer house and had dreamed of having one when I retired, well I was retired now and I was going to have one and get it for spring so I could enjoy all spring and summer in it now I was going to be at home.  I began clearing my teaching equipment and resources I wouldn't be using again, but when it came down to it I couldn't bring myself to get rid of everything and I put some English and maths stuff back in the cupboard, it was still an emotional rollercoaster, the whole teaching thing.  

We went back to Papworth for a follow up check and I was delighted to bump into my friend who had had her Hickman Line fitted when I did. We had lots of news to catch up on and even the consultant requested jokingly if she could split us up so she could do her checks! At this point, I had noticed I was beginning to get a little breathless again and the consultant thought it may be a good idea to increase my epoprostenol before things deteriorated further. My friend had the same outcome and we wondered if we may end up together again.  


We reached the half term break in February and Rose went off on her skiing trip. I still hadn't heard anything from the hospital about being admitted for my drug increase. One morning I got out of bed and went downstairs for something . I ended up fainting again. Luckily Rob was in the house and was able to help me. I felt really upset, we both were, as this was not a good sign. Time to call Papworth again.