Back to Hospital Again! October 2011

I was pleased to be going to back Papworth again, this time we felt we had had a real scare and it would be a relief to get some reassurance or get to the bottom of what had happened.  I was put in a room by myself because I had recently been in another hospital.

I had used this room before, but since then much had happened. This was the room where my friend had spent her last few weeks before losing her battle with PH. It made me feel sad, I would always see this as being her room now,  my thoughts were on her and her brave family. I know I have try and put my sad thoughts of this wonderful lady out of my mind for now, so I can remain positive. Sometimes you have to think of yourself and nothing else so you can stay focussed to be able to muster up your strength to face what is going to be ahead, this can feel hard and selfish and an unnatural thing to do; but I have to stay positive and bright and clear my sad thoughts so as not to bring myself down. My friend had been brave, dignified and courageous in her last weeks and this will always be a real inspiration to me, so I inspired by her, instead of feeling sorry, I was able to put my fears to one side and put a smile back on my face and find my own courage again.

Here, it was a very different story to my visit to A &E, firstly I know everybody and everybody there has some expertise on Pulmonary Hypertension, then the atmosphere is always calm and efficient giving me a great sense of security and trust that what can possibly be done for me will be done and done at its best. Its as though worry and the weight of what has happened to me is lifted from my shoulders for a while. I am back in a five star hotel compared to having just come out of a squat.

There is some hustle and bustle while I am admitted and blood tests and chest  x-rays are done. I was in a room on my own and I cannot see what is going on outside of it. By late afternoon I have the full attention of two doctors and a consultant, who go through absolutely everything that has happened and are determined to eliminate various possibilities. In the meantime I am wired up to a heart monitor. I mention in passing the idea of an ear disorder, which had been flagged during my time at the last hospital. I'm to be kept in overnight for observation and to wait for test results to come back. I'm still having the dizziness when I move my head.

After the doctors had gone, I realise that all the patients have been discharged home on both the men's and women's wards and I am on my own. This is a highly unusual event and unheard of normally, it just so happened, tests had been completed, patients had been treated and been able to go home early, a random, one off situation. So I wasn't getting five star treatment anymore, it became seven star! I remember thinking of the hotel in Dubai, Burj AL Arab, which claims to be the world's only seven star hotel, I'm now having one to one attention from the experts and I've now been upgraded to a seven star hospital compared to where I had just been.

I know I am one of the lucky ones compared to other very sick people in having this specialist centre to support me. Sometimes it feels like I've drawn  the short straw in having a rare lung disorder that people do not generally understand, even people in the medical profession, but somehow there are enough of us PH patients and the expertise available to merit having the nine Specialist Centres that we have in the UK. And for that I am eternally grateful. Our country is world renowned for its PH care, so in this respect I have got lucky.

Many people are terminally and chronically sick with even rarer diseases where there are no specialist places to go to and they are literally passed from pillar to post without any focused support. Many have more common diseases that are so prevalent that they are dealt with as a job lot at their local hospitals, which are usually much bigger and busier with longer waiting lists and longer waiting times at clinic appointments. All these patients have much to contend with and challenges to face before they even get in front of a doctor, then the doctor knows nothing of your history and is reading the notes as they deal with you. The hospitals have bigger overwhelming buildings to find your way around and its a battle of wills to land yourself a car parking space and major achievement if you do. Car parking costs are double or more than the going rate for town centre car parks, another pleasure of being sick, that is on top of you and your partner having to abandon any hopes of working for the future through no fault of your own.

All of this can add dearly to the stress of being chronically or terminally unwell as you face hospital visit, after hospital visit, relentlessly with no respite. It can make patients want to give up in the end and make them more ill, because they have resolutely just had enough of it all. I can say this with first hand experience, some from my own visits to hospital and while this is all happening to me, my father is terminally ill with COPD, a more common form of lung disease and is now at complete breaking point and ready to give up. He just cannot face yet more of this outpatient business, getting himself to appointments on time and finding his way to yet another clinic with yet another medic who knows nothing about him. All this when he cannot even walk anymore from one room to another, not only housebound, but room bound, but he has to face the overwhelming contest of just getting himself in front of a doctor or nurse, just to be told there is nothing more that can be done for him anyway.
I count myself lucky indeed when I consider the plight of others.

Most things are eliminated such as infection and deterioration in my condition. They try and test out whether it is an inner ear thing, by putting my bed in the middle of a room and tipping my head down the back of it, they are trying to bring on the dizziness and watch the heart monitor at the same time. I am surrounded by the whole team during this exercise, the consultant, three doctors, the specialist pharmacist and a nurse. I could not help feeling that this was a bit unreal and I must look funny. I thought my friend, whose room I was borrowing, would be looking down having a real laugh at this one! I do get some dizziness and fortunatley nothing untoward happens on the heart monitor.
It is thought most likely that I may have some viral infection or inner ear disorder, although infection cannot be traced. It is explained to me that as my heart is weak, it may have struggled to cope when the virus first hit me, hence the strong palpitations, the dizziness may be an inner ear disorder. Obviously if I have further problems, I can phone up the ward or the specialist nurse immediately, which is always of great comfort to me.

I was discharged after a comfortable night and back home feeling more assured. Before I am discharged one of the nurses and I have a laugh, there are not many people who are absolutely delighted that they have an inner ear disorder! But for me it is good news; if it was my heart and lungs deteriorating that may spell removal from the Transplant List or increasing my medication. Increasing my medication is a big worry to me, I know I will lose the balance I have now with my illness and my drug side effects. I will probably spend weeks in hospital being sick and unable to tolerate food and drink and the balance I have now will be lost forever, the side effects overriding the quality of life I have established for myself now and the disease reaching new heights.  Removal from the Transplant List, tells me there is no hope left and the doors back to possible good health are firmly shut.

I have managed to stay where I am, for now.