Family Experience Stories

Gemma?s Mum Telling Their Story

Saturday 20th August 2005 was like any other day, apart from the fact that my husband and I were going on holiday to Spain. Our daughter Gemma had kindly offered to take us to the Airport. We were due to leave home around 6:15am and as usual it was a bit of a struggle getting a 23-year-old out of bed, but eventually she was up and dressed. Gemma started making a cup of tea, put the kettle on and then went to the bathroom. On the way back from the bathroom, her father noticed that she seemed to stumble crossing the stairs. She walked into the kitchen and then we heard this thump. We raced to the kitchen to find Gemma slumped over the sink, her left side was a lot lower than the right and she was desperately holding on trying not to fall completely on the floor. My husband grabbed her, and asked me to call an ambulance. We managed to get her into the sitting room and lay her on the settee.

She tried to talk ?telling us she was fine, just get a taxi to the Airport? but you could see that her face was drooping and the left side of her body was half on the settee and half off it. The ambulance arrived very quickly, obviously, the symptoms I had described were urgent. The ambulance men were calm, but you could see that there was an urgency with them, they stretchered Gemma to the ambulance but would not let me get in there until they had her in a stable condition. On arrival tot A& E there was an urgency to get Gemma seen to as soon as possible. I thanked the ambulance men and they tried to assure me that they hoped it was only a mini-stroke she had had and that she would recover over the next couple of days ? how wrong they were…

Gemma was given various medications and then transferred to the Accident and Emergency intensive care.By this time my husband and older daughter had arrived .  A Haematologist then came and spoke to us asking if there were any previous incidents leading to this one. We recalled that the previous Saturday while we were all at her grandparent, she stated she knew what she wanted to say but couldn?t get her words out. We thought this was strange but just put it down to her being tired. The next Tuesday she came home from work and had really bad pains in her lower back and blood in her urine. I immediately rang our GP and explained the Saturday incident and also the pain and blood in her urine.

He said it sounded like a nasty kidney infection which had affected her speech and prescribed some medication which Gemma immediately started taking. She knew we were going on holiday that Saturday, and did not tell us that  while at work on Wednesday she felt really unwell and then on Friday the pain had traveled to her chest. She was very tired that week, but we put it down to the kidney infection.

They did various blood tests at A&E and while we were waiting for the results, Gemma was semi-conscious. The Consultant then came and spoke to us and said he was certain that she had a serious problem with her blood and that she needed to be transferred to a specialist Hospital which he was trying to arrange; she would need urgent Plasma. The first thing that I thought of was that she had Leukaemia, but he corrected me and said that it wasn?t but that was all he would say. He arranged for her to be transferred to the UCLH at Euston Road, London. We were blue-lighted all the way and arrived there by lunchtime. We were met at the hospital by a number of nurses and doctors who rushed Gemma off to a room and I was left outside feeling numb. This just could not be happening. They returned Gemma about an hour later, they had had to input a line into the main artery in her groin. They then took her upstairs where they started plasma exchange.Very much like a kidney machine, but this removed all Gemma?s plasma from her blood and also all her red blood cells and then replaced her 8 pints of plasma with donated plasma then mixing it back with her red blood cells and then back into Gemma. No-one still had explained what was going on, but their first priority had to be Gemma. This procedure took about 5-6 hours, but eventually she was reunited with us on the ward. She was still semi-conscious, but no explanation had been given and wouldn?t be until the morning. The morning arrived, Gemma was still the same and there was no movement on her left side, even the left side of her face was still drooping.

They were injecting her and giving her fluids through a tube in her arm. The Consultant then came and spoke to us, the worse news anyone could ever hear, your daughter is very seriously ill, she has a condition called TTP which affects the platelets in the blood. The platelets start to chop up and start rushing around the body, they affect the major organs(this was why she had blood in her urine, her kidneys were being affected by the platelets) with the platelets rushing around some had obviously got joined together and had caused a blood clot which had gone through her body(why she had pains in her chest) and had gone to the brain and she had suffered a stroke. How severe no-one knew. The results of her platelets when she was admitted were 9 when they should be between 150-400. They would have to carry on the plasma exchange every day if not twice a day to try to get the platelets up. The plasma exchanges went on for three days and her platelets were not rising?.. they now were 6. The Consultant then asked to speak to my husband and I. Things were looking bleak. She was not responding to the plasma exchange and she was still semi-conscious. I don?t think there was a dry eye. What does one do apart from pray?

The Consultant suggested they start a course of Rituximab, which sometimes helps. Gemma had to have the line in her groin removed after about a week and one had to be inserted into the main artery in her neck. The plasma exchanges carried on every day for the next four weeks and the Rituximab was given once a week for four weeks, the Platelets were increasing and they were almost up to normal which was the best news that we had had in four weeks. Unfortunately, the stroke side had to take second place till the platelets were steady. They had managed to get Gemma bathed after about a week, but it had to be a hoist and then into a disability bath chair, strapped in and then taken for a shower. She was not allowed to drink or eat for the first couple of weeks as they were not sure if she would be able to swallow with the stroke. I keep saying the word Stroke, but all we kept saying was that people of Gemma?s age don?t have strokes ? do they??????

They worked wonders on Gemma over the next couple of weeks, she could walk a little with the aid of a leg brace and with the exercises we were doing with her most of the day, things started looking a bit more positive. It was explained to us a while later that TTP was an extremely rare blood condition affecting approximately 1 in 3-5 million. There was no reason Gemma got it, she was just extremely unlucky. There is no cure for TTP only remission. Two years previously 80% of TTP patients died, now 80% survive. Gemma was offered a place eventually at the Neurologic hospital at Queens Square, London to have some rehabilitation from the stroke. We had a Specialist who visited us at the UCLH and tried to explain that Gemma had had a very large stroke. Gemma and I went by ambulance to the Queens Square Hospital to have a look around, but she absolutely hated it, my daughter had basically changed completely, she was no longer the happy-go-lucky lady she used to be. Basically, we had to ask if there was somewhere nearer home that she could go to as we lived in Brighton and I was told there was a Rehabilitation Centre at Southlands Hospital which was only a couple of miles from our home. Luckily they said they would be happy to take Gemma for rehabilitation.

My husband and I decided it was best to take her home and do her physio at Southlands which was a couple of miles away from our home. After 5 weeks in London Gemma was transferred to Southlands by Ambulance. It was nothing like the London Hospital which was brand new with all the mod cons. Southlands was a very old hospital. Gemma did nothing but cry?. it was terrible. Basically, there was no medical reason she should be in the hospital, the TTP was under control, but she needed Physio to try to help her walk better and be more self-sufficient. The doctor came to see her and made her get out of the wheelchair and walk with a Zimmer frame, she was so determined she did it.

Gemma has now started driving to and from work, she works really long days, but she manages a busy day with driving to and from as well. They have made a few adjustments for her at work. She can only use her left hand on the keyboard for a couple of minutes at a time, the rest of the time she just uses her right hand to do her work. She gets extremely tired and is always in bed early. She won?t be beaten though and keeps going and going ? we really don?t know how she does it. Gemma has been given a letter from the Specialist in London, which we have had to photocopy and give to family and her work colleagues, in case at any time she feels unwell, it has to be taken with her to Accident and Emergency.

Two years on and Gemma?s platelets are still very good, she has three-monthly check-ups at London and Brighton. She pays privately to have physio once a week and she has acupuncture once a month.

All we can all do is hope and pray that when she has another episode, she will be near enough to a hospital to get urgent treatment.

We are a very close family, we are like the four musketeers, all for one and one for all, there is nothing any of us would do for each other. Whatever the future holds we are ready for it.