Saturday, 25 August 2012

An Appointment with the Ear, Nose and Throat Consultant

Late August colour at Knebworth House 
After waiting three months, partly due to the fact that I had to cancel an appointment because we were away on holiday, my date with the ENT Consultant at the local hospital came round. It was a very busy department and despite there being signs to say there were hearing tests going on there were kids running riot and shouting and bawling at the top of their voices at one another and their parents just sat there watching or shouting at them as well to no avail. There was one very mean looking lady 'f'' ing and blinding at staff on reception and most strangely  for a hospital at least half a dozen various hospital staff standing around outside the consultant rooms chatting and making as much noise.

Golden yellow hues
I was whisked very promptly for a hearing test, something that I didn't expect, but was routine and appropriate so the consultant had information before I saw him. While waiting for the consultant we were approached by a very polite gentleman trying to get us to sign up for a regular hospital newsletter. Being a bit of a cynic about this hospital, I could only think, 'why on earth would I want to be reading about this hospital every month, when I spend most of my time trying to avoid having to go there'! However, much to the amusement of Rob, I was very polite to him. What made us laugh even more was that his title was 'Head of Engagement' and we were left wondering how many people actually worked in 'Engagement'. I had a bit of the feeling that this is what the 'overblown NHS' is about that is always being bandied around in the papers. What with that and all the staff hanging around doing absolutely nothing, I couldn't help but wonder that they should all be sent down to the A and E Department to help out there and see what the real world is like for some medical staff.

When I went into the consultant, I was accompanied by one of these staff who had been hanging out, who shunted Rob to a seat in the back of the room, while she took a place next to me. The consultant was very pleasant and immediately told me my hearing was fine as he believed I was worried about my hearing. Well, if you've read my earlier blogs, you will know that this is nothing of the case. I was worried about something being wrong with my ear as following my incident with frightening heart palpitations and dizziness back in last October, things had been put down to me perhaps having an inner ear disorder and never really got to the bottom off. I continued with dizziness for a while and was left with a fullness feeling in my ear and sometimes some light tinnitus when I am laid flat. I explained my worry had been that there was still something wrong with my ear, as I have other serious health problems and did not want it blowing up again if there was. He just seemed to do a token nod at this, gave a quick look in my ear, said everything looked ok and there was nothing to worry over, but he would keep me on his list and call me back in a few months time if it went on longer. Maybe then he might think of referring me for a scan. I was then dismissed. The lady who was supposedly helping him was given a piece of paper to hand to reception on our departure!

and pinks!
I don't know why, but somehow I didn't feel entirely happy with this, whether it is because I have been dismissed as not having something to worry about before and then it was too late for me when I did eventually find out I had been walking round with a deadly disease inside me for years or whether it was because I hadn't ever really had closure on this so called 'ear' incident, which had caused me much distress both at the time and afterwards in that I had completely missed my sister's wedding. Anyhow, I felt a bit upset when I got home, but reasoned if its still feeling like that when I go back in four months time I will go in with a bit more fight in me.

As I write this we should be on the road to the Lake District, but last night I started having pain inside near where my Hickman Line goes in. We decided to delay and as the pain has continued this morning and doesn't seem worse, but doesn't seem to be going away. I have phoned Papworth and am now awaiting their advice. I know it will probably be go to A and E and am not looking forward to this on a Bank Holiday weekend. I hope at best it will be to come into them and they will swab it and do blood cultures for me.


Friday, 24 August 2012

Just Like Old Times August 2012

St Annes on Sea - a childhood haunt of mine  
We went back to the Lake District for nearly two weeks after Rob and the girls had been to Lee Valley. The journey up was a good one and we were listening to the Olympics on the radio all the way up, getting a bit frustrated we couldn't see it on the TV as Team GB were winning yet more medals! As I said in my previous blog, I had some new places earmarked to go to and some old favourites I wanted to visit. I was feeling very well, the nausea amd stomach problems had subsided to an extent.

I had decided for this holiday, no posh hotels, no posh dinners, no changing medication times, no trying to go out earlier in the day that I can manage, no pressure to keep challenging myself. I would just do whatever I felt up to and no more.

The weather was managing to keep fine and we went out and about to places old and new, days went by and I realised I had been feeling pretty good as we kept getting out and about every day with no incidents, I was even suggesting calling at the pub for a glass of wine. I am allowed one glass of wine per day if I like, but to be honest for months and months I hadn't really felt like it. There may be an odd time when I fancy a glass and then by the time I've poured it I can't face it, so this was highly unusual for me.

The estuary near our cottage at Milnthorpe 
We were then extremely fortunate with the weather and by day three it had become glorious, blue skies, warm sunshine, big fluffy summer clouds. We had loads of picnics and outings and I have to say felt the best I've ever felt since finding out I was ill. I kept thinking it would stop and the next bad day would come, but no the good days just kept coming and coming.

We had a fabulous time, except for the restrictions I have such as walking too far and tiredness, life felt as close to old times as it had ever been.

The Olympics were still going on for some of the time while we were away and this provided second to none entertainment each night on TV and on the radio as we travelled about. We enjoyed the closing ceremony and afterwards felt like we were having withdrawal symptoms!

Holehird Gardens,  Nr Windermere
We came home for the A level results and Rose got her grades, A,B and a C, so got her place at university. She will be leaving home in September to go to Bournemouth. She had been really hoping to get that C for biology, so she could keep her total number of points high enough to get in university, but had felt a bit wobbly about it. One of the things that clinched this grade for her was her course work, which she got an A for. She had to do a report about a drug and she chose Epoprostrenol. I suppose PH has to have its uses, that and the examiner probably found it interesting as it is a rare drug for a rare condition!

Sarah, also, was on her second interview for a new job, so we were keeping fingers crossed for her too. She has also just completed her first year of her Sociology degree with the Open University.

I am so proud of how my girls have coped with my illness and poor prognosis and how they have just buckled down and got on with things through it all, they have been so strong through a lot of trauma, especially when they have both had to contend with exams.

I went to see the doctor about my skin problem as it just would not clear up. She thinks it may be a fugal infection and has prescribed me some anti fungal and steroid cream, so I will see how that goes.
It is a real nuisance as I'm still feeling pretty good within my limitations, there just always seems to be something. Of course my INR had also gone a bit haywire with my little wine tipples, but I think my nurse just thought 'good for you, enjoy while you can', she has just adjusted my warfarin to enable me to have a glass or two a week now if I'm still feeling like it!

You cannot get away with anything when you have PH and are on the Transplant List -  a little drink, putting on an extra pound or two, sneaking off somewhere further than an hour away - someone always has to know or finds out!

Coniston Water
Rob and I had discussed a month or two ago about him returning to work just on a part time basis. I feel it would be managable for me if he worked a couple of days a week and we can try and get some normality back during this long wait. We have had a year together now without any work comittments and had some really good times together, got ourselves back on track, taken stock and I'm sure this has contributed to me now being so stable. Funnily enough on our last day in The Lakes, he was contacted by his former boss to see if he would be interested in some part time work. This has come at just the right time and he is now pursuing it further and hopes to start in September. I am so proud of him too, what he has done for me and how bravely he has coped. I'm feeling we have all got through to to this stage somehow with some success and we are getting used to living with PH and being on the Transplant List.

Rose has gone off to Reading and we are going back to The Lakes for the August Bank Holiday and some of the following week. When we get back its going to be all change once more in our household, but change for the good I hope.

I miss swimming, but I can paddle!