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.
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|
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.