Specialist Hospital: The First Visit - October 2010

The months leading up to this visit in October 2010 from first finding out were like a roller coaster for all the family, test after test; hospital visit after hospital visit; blood test after blood test; doctor's surgery over and over and in the middle of all this what I remember as a terrible whirlwind of emotions. Questions in my head: what is going to happen to me? What might happen next? What about us? What about the girls? Great sadness: cancelled future; cancelled dreams; cancelled plans; cancelled holidays..... On top of all this my health was not improving, apart from not having swollen ankles, I was fainting randomly, ok one minute, collapsing the next. I looked well - and everyone commented and on how well I looked and still do - it seemed a knife edge situation I was treading on: ok one minute, blacking out the next. I felt anxious about going out, driving my car, bathing, being on my own and so did Rob and the girls. Once we had been referred to Papworth, we were counting the hours not weeks to get there, checking the post every five minutes for the appointment letter - nothing has come again - we knew I needed this specialist treatment quickly.

Monday 18th October: I arrived on Duchess Ward, the Pulmonary Vascular Disease Unit at Papworth Hospital late, we had had a bad journey and the two main roads into Papworth were blocked, just our luck as if we were not stressed enough! I hadn't actually been admitted into hospital for an overnight stay since Rose was born sixteen years ago and in between worrying about everything, I was bothered about when to take the diuretics. If you are a PH patient you will know these make you 'wee for England' and it is not really a good plan to be either travelling too far or roaming around a hospital having numerous tests when you need to go every two minutes!

We set off for Papworth Hospital at Papworth Everard, in Cambridgeshire early on a Monday morning, arriving late because of the road accident. We signed in at reception and were directed to Duchess Ward. The ward was small, but spacious, I was shown to my bed and then immediately whisked off for my first round of tests, all was extremely organised to precision. They took me off in a wheelchair, which felt odd as I thought I should be able to walk around, they were concerned about the fainting.

The plan was supposed to be: here for three days then home on Wednesday afternoon. I had to be transported to various other parts of the hospital for some of the tests they needed to do and for this I was transported by wheelchair into the back of my own personal ambulance and then strapped in and driven. I remember on the first occasion this happened thinking, 'what has happened to me? Here I am sat on my own in the back of an ambulance, being driven around a strange hospital by a porter! It all felt very unreal, as though it shouldn't be really happening, little did I know that this would soon become a normal experience for me! On one of these occasions Rob came with me and we opened the case notes we had been given to carry round to try and see how bad the situation was, the consultant had underlined parts of my cardiologist's referring letter and written on there to get me seen quickly. It all pointed to things not being so good. On the evening they offered me the use of a commode because of my fainting, I was horrified about this and flatly refused. Again, little did I know this will become a normality at times in my life!  

By Tuesday lunchtime, the PH team had gathered enough information on me to let me know that I had 'Idiopathic Pulmonary Hypertension' and that it was severe, classed as WHO class IV, the highest category.  It was not the news I had hoped for, but deep down I did know that things had been bad, so it was probably not a surprise. They wanted to start me on a medication called Iloprost and recommended that I try it via a nebuliser, although it can also be administered intravenously. Again, I was disappointed at this, I really hoped I would just be given some tablets which would make me better, although I wasn't shocked really as I had prepared myself this may happen and that they may even talk of intravenous drugs, at least I was being given the option of a nebuliser!

Obviously by this time it is sinking in all over again that I am not in a very good state, we were being given time with specialist PH nurses, a specialist pharmacist, palliative care nurses and the hospital social worker. It was clear you do not get all this should you have something that can be sorted and done with and that with all this, things must be bad. At the same time, at long last we were being given the support we really could have done with at the outset and that was such a relief. I was also given all the PHA UK information again, thank goodness I had already read all this and been a little prepared at least.


I had to stay on the ward for a couple of extra days while they trained Rob and I how to administer the new drug I was going to have. During this stay I met some lovely patients and we exchanged some email addresses  and phone numbers. I was discharged on the Friday and given a folder on PH provided by the hospital, together with a card, which gave a twenty four hour telephone number that I could use and ring the specialist nurse or ward if I needed help or was worried about any aspect of my condition. It was lovely to come home, wash hospital out of my hair, start my new treatment and feel full of hope and well supported at long last.