|January snow in the garden|
January was dotted with hospital appointments for this, that and another. A monitoring appointment and tests with the PH team; a monitoring appointment and tests with the Lung Transplant team; an appointment for the results for my Holter Monitor test at the local hospital; an appointment with a genetic consultant at Addenbrookes, as I had asked about risks for my children given that I had Idiopathic Pulmonary Arterial Hypertension and this can be caused by a muted gene; I also had an appointment for early February with the dermatologist at Addenbrookes for my problems that I was having with my dressings. Also I still had my usual two weekly warfarin clinic visits to check my INR range.
This barrage of doctor and hospital visits is probably quite typical for somebody with ongoing medical needs and probably it will be worse for some.
|Snowdrop week at Bennington Lordship|
|Sherrardspark Woods Welwyn|
|Duxford after a visit to Addenbrookes|
It would be helpful just for me mentally to identify where this awful disease came from, useful to find out for my girls sake, I was also happy for my blood to be used for their future research, as helping anyone in the fight against this disease will be a bonus.
|Rob performs in King lear at The Barn Theatre|
The following week, I had my visit to the Lung Transplant team. The usual routines followed: height and weight and blood pressure measuring, meeting with a consultant and then blood tests to finish. Yet again the Transplant Team had a little surprise hidden for me when it came to discussions. I saw a consultant from the surgical team, who I hadn't met before and we went through all the usual updating.
The consultant then paused and asked me if I had considered donating my heart to someone else once I got my new heart and lungs. I was a little taken aback, because I had thought that my heart was probably too damaged to be of use to anyone. He explained how they had a lot of data on my heart that they do not usually hold for a donor and that my heart may be relieved when it did not have the high pressures from my lungs to contend with and could possibly go back to a normal state. My heart could be a good donor heart, with its potential to beat normally again, the vast information they hold about it and the carefully controlled position they would be in if it was suitable to use.
|Rose celebrates being 18|
Next stop was back to Addenbrookes again, this time to see the dermatologist. In this waiting room they have a big screen, which tells you whether the consultants and doctors are running to time. My appointment was at nine thirty, so a difficult and early start for me to get myself to Cambridge this early. I reasoned we shouldn't have to wait too long seeing that it was quite early and they wouldn't have had a lot of time to get too behind. The big screen continually flashed up everyone was on time, it was about twenty past ten when I got to see someone. Why can't they just tell the truth? They are very clearly running over three quarters of an hour late. What is the point of winding up people even more while they sit there waiting? They are already wound up because they have been sat there for nearly an hour and they are stressed already because they are there because they have a problem they are stressed and worried about. What a waste of NHS cash on a machine just designed to wind people up!
It got even better, I am seen by a medical student to start with whose first question is, 'so when is your heart and lung transplant booked for?' After we go through my history, she omits to ask me one of the most important questions of her session and has to come rushing back in to do so, 'what is actually wrong with you?' Rob and I cannot look at each other as we will start laughing. Anyway I am not wanting to criticise this hospital, I don't mind having to wait for appointments at all, I am used to it and I know that some patients take longer than others, I just bring my kindle along and read and wait and sometimes enjoy the entertainment of the waiting room. The 'gem' questions by the red faced student doctor have given some good entertainment value for my friends too and she probably learned a lot that day!
|Wrest Park in January|
Although the doctor had marked my case urgent, I would have to wait until the end of April for the patch testing. I just hoped I could hang on long enough for this with the new dressing I had been given.
Next came the appointment at my local hospital for the Holter Monitor results - what a surprise - cancelled again. This time I lost my patience for the first time ever since first feeling ill. I told them I would be dead by now if I had to rely on them to help me. After my rant, I apologised to the girl as I know she was only the messenger. Surprise, surprise, I got an appointment for the next day.
Here I was told I shouldn't have had to come to outpatients for the results and they would send them on to Papworth, but it was their policy to see all patients. That is fine, but why did it take all this? Surely somebody, somewhere must have looked at my notes? Three hospital visits, three cancellation letters and two phone calls later I found out that the ECG had recorded a 'tachycardia' in my heart rhythm. Nothing of concern to them, but for my specialist hospital perhaps a piece of important information in the jigsaw of all the comings and goings of my condition. Anyway at least the incident back in October has been laid to rest.
March is hospital free and I only have two warfarin clinic appointments during this month. I feel free and steady and stable at last, the dressing allergy has also eased up with the new dressing.
|The Snowdrop Walk at Benington Lordship|