Thank you all for taking the time to read Kevins story. We need to raise €10,500 to provide Kevin with a machine that will help improve his condition drastically so that we can help him come home where he belongs.
Kevin is 61 years old. 6Ft1inches tall. 15 and a half stone in weight. Always on the go. Up Monday – Friday, out for work from early. Loved to enjoy his weekends, being outdoors, going for a regular game of darts and spending time with his dogs. Loved his life and his family. Happy and always cracking a joke.
Couldn't envisage what was coming. Had never even heard of it. How naive to think that we were safe. Our lives changed drastically on the 25th February 2019 when we woke for work. Kevin had been unwell with a bug the week previous and was on meds from the GP to clear it. He didn't feel it was cleared and had intended to return to the doctor that morning. Once he woke he cried out in pain. He described it as though his arms and legs where being forced onto hot coals. “I'm on fire” he cried out. He wasn't able to walk and he couldn't move his hands. So extreme that he needed help to get dressed and to get out to his car. We went directly to our doctor who couldn't believe nor begin to understand the state that Kevin was in.
He rang an ambulance and from there we went to Blanchardstown Hospital. Kevin was diagnosed with GBS – Guillian Barre Syndrome. A disorder where your own bodys immune system attacks your nerves. Weakness, tingling pain in arms and legs is usually the first symptoms. These sensations can quickly spread through the whole body.
In order to diagnose they carried out two lumbar punctures. The second one confirmed the condition. During this time there were several other tests carried out. Through this further testing they found an 8cm tumor on Kevins left kidney. Something that had no prior indication or affect on Kevins health. Here we found ourselves with two major problems going on.
IVIG treatment commenced. There is no cure for GBS, but the intravenous immunoglobulins. Which is donated blood plasma that contains antibodies can help shorten the course of the illness. The cause of this illness is not known although it's reported that some have digestive tract infections prior to the onset.
Once thought to be a single disorder. GBS is now known to occur in several forms. The main types being AIDP, MFS, AMAN and AMSAN. AMAN is the type that Kevin was diagnosed with. Acute Motor Axonal Neuropathy. People with GBS usually experience their worst within the first 2-4 weeks after it begins. It can improve spontaneously. Some people improve in weeks, while other months and some, years.
Kevin was in a ward three days short of four weeks. We were confident that the GBS had reached its point. His arms and legs were now paralysed but Kevin was able to move his torso, head and eyes. He was able to talk, eat and drink though he needed to be fed. He was on a cathera, plenty of meds for the pain. It was four weeks of constant wake. He never slept a wink and his family took turns to stay with him night and day. He didn't even have the ability to ring the bell to call the nurses if he needed help. He required his legs and arms to be moved constantly due to the pain and cramping. He needed help with everything including emotional support.
On the 22nd of March 2019 Kevin had to be transferred to the Intensive Care Unit. He had caught Sepsis. There was weeks of him in a critical state. Watching him suffer hallucinations from fever and medication. Our world just falling apart.
During these weeks I have a note in a journal I am keeping, that reads:
Its pitch black as I leave the hospital tonight. Not allowed stay with Kevin now. I'm so lost and lonely. My life is in there and I'm here in the lashing rain. Wasn't sure whether rain or tears were running down my face. Maybe the heavens cried for us that night and I just felt them on my face.
It's been constant waiting and watching every day. He has been on life support machines and tracheostomy since first entering the ICU. Constant hospital super bugs which he has caught. He is prone to everything in this state. He has had eye ulcers which could have resulted in the loss of his sight. Still to this day he requires constant care to prevent return. Continous blood pressure and temperature changes. Nothing but medication, antibiotics and sedation. Over and over. For each and every time Kevin has improved it began to become a pattern. Everytime he got to eight days after a sign of improvement he went backwards.
By 20th April 2019 there were signs of improvement. No temperature and he was brighter. Still no movement had returned, only his eyes flickered. Had the paralysis spread through his whole body? This poor strong man. Reduced by this disease to a thin mite. My heart goes out to him as I watch the nurses turn him to prevent bed sores. Modesty now lost for him.
Towards the end of April Kevin had commenced his trials to come off the ventilator. Doctors were amazed at the turn around and commented on how strong of a man he was. Still no voice and lip reading had proved to be difficult. It is draining and frustrating for all involved. Next step arrives. The nurses start to hoist Kevin from bed to wheelchair. Short intervals of sitting, breathing trials lengthen. May arrives and with it, the tilt table. Kevin is strapped in and gradually tilted to an upright position. Building over time to get him use to standing again.
With Kevins improvement it was now time to discuss the kidney. The tumor had grown in size and was too big to simply keep an eye on. If it spread Kevin would not be strong enough to undergo chemo but if we removed it, it was possible he wouldn't make it through the surgery. He had a better chance to remove it. So that decision was made. It was a successful seven hour surgery carried out on 13th June and Kevin made it through. It wasn't long after the operation when Kevin started to complain about bowel cramping and pressure. His left lung was also not doing so well. On the 19th of June Kevins colon ruptured, he got peritonitis and required an emergency six hour surgery to remove the colon, replacing it with a stoma and bag. On the 24th of June only five days after Kevin is returned to the operating room again as his stoma is not working correctly. Thankfully he recovers from all of these set backs.
Shortly after all his operations his speaking valve is introduced and we get to hear his voice again for the first time in such a long time. He was introduced to food and drink again. Finally there is a light at the end of this dark tunnel. At least until July 13th when we discover that Kevin had an internal bleed. After a full week of bleeding and receiving blood Kevin is transferred to Beaumont hospital. After two attempts to locate the bleed they locate it in the abdominal aorta artery and manage to successfully block it with coils. Two steps forward and ten steps back every time.
On the 30th of July Kevin returns to Blanchardstown Hospitals ICU. All finally going well into August, which marks 6 months since Kevin initially went into hospital, 5 months of which and counting in the ICU. On the 15th of August Kevin had a complaint about not being able to breathe properly, his CO2 levels rose drastically and Kevin took a turn. He ended up back on all his machines and full ventilation. Back on the life support we believed we had finally escaped from. A scope was carried out into the lungs that showed mucous that required removal and Kevin was put into critical state again. He has pseudomonous. Three antibiotics fail to take affect. Finally on the 25th of August a 4th antibiotic is introduced and we finally see a response in Kevins condition.
Since the 29th of August Kevin has started to come around again. He is trialing off his full ventilation again, he has his speech valve back again. He is sitting out in his wheelchair and doing his tilt table again aswell. He was off all antibiotics by September 1st. He is now 11 stone. Has extreme muscle wastage. He still cant move. The time has now come to move him on to a form of gentle excercise. Unfortunately there is no way he can perform as movement is not an option for him. There is a machine that can help. The Motomed Letto2 is an automatic arm and leg trainer, with this machine excercise can be carried out from his bed or chair. This movement therapy will improve Kevins chances at gaining muscle tone, circulation, weaning him from the ventilation completely and improve any neuromuscular damage that has been caused. It will initiate his first chance at rehab. Kevin will need this machine for a long time and his come back, although slow can greatly be improved through the assistance of this machine. Eventually as Kevin improves and no longer requires the use of this machine we plan to donate it to Blanchardstown Hospital so that it can benefit others with the overall improvement this machine can grant them. Kevin has been through enough and now its time to get him back to his garden, his family and his dogs.
Kevin has asked for a navy pin stripe suit to wear for the day he goes home from the hospital. He is adament that this will happen. His greatest hope is that he can wear this while he WALKS out the hospitals front doors. With your help and support he may be able to achieve that. You can make his hope a reality.