Getting Out With a Serious Illness

We enjoyed our bank holiday break in the Lake District. As I coped so well staying in a hotel on our last visit, we decide to give it another go this time. We booked into a hotel for an evening in the North Lakes, near Keswick and planned to spend an afternoon there and then drive to the Solway Coast the following day. We spent a lovely afternoon in Keswick and round about, then got to the hotel.

Fishing boat at Whitehaven

We were pleased with our room and we noticed there was a nice indoor swimming pool. I suggested to Rob that he may like to have a swim, although I can't because of my Hickman Line and pump, I went with him. I braved it in a t shirt covering my extra bits and my bikini bottoms and sit with my feet in the pool, and enjoyed watching Rob have a swim. It felt very relaxed and I felt like I was on a real holiday being by a pool. A lovely moment. A moment though unfortunately that I think was the trigger for a very irritating problem. It was very hot and humid in there to keep the pool temperature warm and inviting and of course I couldn't swim to cool off  like others were doing. Soon afterwards, I noticed my skin becoming red underneath my dressing, which covers my Hickman Line. This can signal life threatening problems if the entry site becomes inflamed it may be an infection. The line goes direct into my heart and blood stream and infection can cause septicaemia, which has a rapid onslaught and ends in death if not caught swiftly and treated promptly.

I needed to watch the site closely now, it was just a bit red under the dressing and the redness was not around the actual line entry site, so we were not too worried.  The dressings used are clear so that the site can be checked regularly for problems.

We enjoy our hotel stay and drive up to Cockermouth, I planned to take my diuretics when we got back to the cottage later, so the daily 'weeing for England' does not impact on our day out. At Cockermouth I had quite a  long walk and we manage to visit Wordsworth House, a National Trust place. I needed to rest with a cuppa  after this, because I had probably walked too far and my legs ached and I was tired. We headed up to the Solway Coast and had a picnic lunch next and a small walk. We were near the car and I felt my legs would not take my any further, I was exhausted.

The Gondola, Coniston

A busy day the day before, and quite a lot of walking that day, however I do like to test how far I can push myself. It is always in the back of my mind, do I really need a heart and lung transplant? I stumbled into the car, completely exhausted and fell asleep straight away for an hour. We needed to make sure we got back in good time for my medication too, I do carry spares all the time in the event of an emergency, but would choose to do the Epopostrenol in the clean conditions of my own home when possible. When we have stayed in hotels, we have managed to do it safely using a tray we have purely for this purpose, lots of Dettox wipes and sterile gloves, so we have found a way round it, so we can live life a little more to the full.

There are lots of extra challenges when you are sick and trying to live normally and go out for the day or go out at all, for me its things like: how far can you walk without dropping or your legs ache too much? How fast can you walk when there are people trying to get past you and pushing? Can you manage those unexpected stairs and still live to tell the tale when you get to the top of them? When you go for a walk, constantly checking how far you have walked as you need the energy to walk back. Fatigue is a major problem, even just having a conversation can wear me out at times. Remembering to take the tablets, I take eleven or twelve tablets in stages throughout the day, as well as twenty four seven IV drugs that are changed twice daily.

Warfarin thins my blood and I get cold easily, some of my other drugs make me flush and my heart just doesn't like extremes of cold and heat. I wear layers all the time, always taking an extra layer even if its hot and I have to take great care when sitting in sun, in fact its difficult to sit in sun, my Epoprostenol is light sensitive and my dressing on my Hickman Line tends to get sticky and cause a rash if I'm not careful.

The diuretics feel like a big bug bear, on a day when I actually might feel well, I still feel restricted on when I can go out, if I take them as normal in the morning, then its a struggle to go out before lunchtime; if I do go out before then, then I have to take them when I get back and suffer having to run to the loo all evening. On top of the diuretics side effects the nausea is often worse in the morning, so mornings are always difficult. My day in the real world usually starts at lunchtime.

Eating out is something I like to do, but is always challenging, will your tummy cope and the sickness and diarrhoea tablets work? Your tummy is somersaulting with nausea and cramps, will it go away or get worse? Will we have to leave the pub or restaurant when we have only just sat down. I struggle with food and what I can manage to eat as my Epoprostenol and Sildenafil upset my stomach. I also find it hard to go too long without food, I think its the drugs going straight to my stomach sometimes and this can sometimes pause a problem if we are out and about and I can feel very ill and feel light headed, then I worry I might faint and if I faint it will mean all sorts of problems. It is an achievement for me every time we eat out successfully.



Timing is of the essence, Epopostrenol cannot be made up late, PH symptoms can come back with a vengeance if there is a blip with timing or a blip on the line, it can be life threatening; it is always there in the back of my mind, have we got all the spare equipment should an emergency happen with the line? Are my emergency cards handy so medics would know there is an existing problem and my Epopostrenol supply must not be shut off at all costs. Time needs putting aside to change the dressing each week and change the line connector and extra time allowed in the daily process every other day to change the line.

A lot of these things are manageable when you are with your partner who knows all the ins and outs of the problems and lives with them everyday like you. When you are company of other people, then it becomes harder.

There is often an expectation that you are now feeling a lot better and that you are out and about, you can be how you always have been and unfortunately people are deceived by the situation, especially as this disease is invisible. Sometimes it can be a bonus that I do not look ill as it allows me to go about my business in a normal manner most of the time. The truth is though that it is an effort and a strain to be out and about, as we manage all the difficulties, but I love to get out and about if my illness allows. I want to be in the real world not laid on the settee or in bed feeling sorry for myself.

Luckily we have some brilliant friends, who do seem to understand and do make allowances for me without being patronising.

Anyway that is just a flavour of what it is like for me, for everyone with a chronic illness there is a lot to endure that others just do not see and I know for a lot of people things are a whole lot worse than what I have to endure, so I count my blessings for now.

Back to the Lake District now though and Rob and I are on our own, enjoying our own company and managing to work around this PH and its problems.