Prolactinoma: a carer's story - review 11 years on

Looking back over the last 12 years, since Tony had his diagnosis, (pituitary Apoplexy from a macro prolactinoma,) we have at times, had quite a roller coaster of a ride!

The Endocrine Team at the Queen Elizabeth Hospital carefully monitored his condition in order to stabilise his medication, and he is now checked on an annual basis. 

It took two years for him to recover the confidence to drive again.  This seemed to me, to be a bleak time while I came to terms with Tony’s limitations and frustrations. 

I was finally able to persuade him to attend the Pituitary Foundation Birmingham and West Midlands Local Support Group.  For me it was a life saver!  Wayne, the Co-ordinator, ran the group with his mother as carer support.  She helped me by allowing me to voice my feelings of concern and inadequacy.  I looked forward to talking to her and others at the meetings, and was glad to see how it helped Tony too, to talk to others.

Our GP practice found the diagnosis very interesting, and a medical student who happened to be spending time with one of the doctors was told that she should feel very honoured to have met a pituitary patient, as most doctors never see one in the whole of their career!

We have a very supportive family who encouraged me to go back to doing some of my hobbies.  I was able to rejoin my dressmaking class and a fitness class, while Tony was kept an eye on.  We even ventured on holiday in our touring caravan, with our sons helping by towing us there and back.  The site managers were brilliant in placing us conveniently, so that Tony had as little distance as possible to walk. I found this holiday terrifying at first, as I felt isolated from the help we had got used to.  Being a retired Occupational Therapist didn’t help, as I felt inadequate.

I decided to become a volunteer at the Queen Elizabeth Hospital, Birmingham, when Tony was fit enough to be left, as a way of giving something back to the hospital that had saved his life.  I still do this and enjoy the work I do very much.

In 2008, our LSG Co-ordinator resigned as he was moving away, and so, that July we held our first meeting as Joint Area Co-ordinators to avoid its closure.  As a result of this, we have met some lovely, interesting people, and attended The Foundation Training Days and Conferences.

Our constant problem has been the fact that Tony was already an insulin dependent Diabetic type 2, as this can confuse symptoms at times.  For instance, he had an Adrenal Crisis in January 2012, which I mistook for a Hypo at first.  When the glucose failed to improve his condition, I realised that his condition had become serious and an ambulance was summoned.  During his admission, Sherwin, one of the Specialist Endocrine Nurses, came to demonstrate to Tony and I how to inject the emergency hydrocortisone.  We told him that we ran the Local Support Group, and he agreed to come to a meeting to show all the members.  Everyone was given an orange to practise on!

Tony has been a volunteer gardener at a nearby local hospital now for over two years.  This has been a relief for me and an outlet for him.  He has been able to start a new interest in a work environment, giving us both our own space.  He loves working again and the team have developed quite a status at the hospital for what they do.

At his annual review in the pituitary clinic in 2013, I mentioned that Tony still seemed very sleepy, as he kept dozing off when he sat down.  Arrangements were made for him to have testosterone levels checked, and to refer him to the Sleep Clinic as he may have sleep apnoea.  As it happened, both needed attention.  He was told that although the increase in testosterone may help, Tony was overweight and this causes fat to sit around the neck and press on the airway during sleep.  He was given a mask and machine to help, and was told that this had to be used every night.  Fortunately, his condition was considered to be mild, and, although he had to declare it to the D.V.L.A., he was still able to drive.  He was furious with me for telling the consultant that he fell asleep, and blamed me for him being expected to wear the mask!

For Tony this was the final spur to lose weight.  He spoke to his GP, who was pleased to refer him through the NHS scheme to lose weight at Weight Watchers. I am very proud of Tony’s commitment!  He has lost 27lbs, and achieved his goal, resulting in normal readings for his sleep and a reduced need for insulin.  The mask and machine went back, and now he very rarely needs to take insulin four times a day, as he did before. For the first time both he and I feel that at last he is in control of his wellbeing.

We have just celebrated our 50th Wedding Anniversary, and have several events planned over the year.  We have a wonderful, caring family, who still keep an eye on the “Old Chap”!  We both want people to know that, yes, for patients and their carers, there is a future!!