My Stroke Story

I’m writing all of this down to get it out of my head and who knows maybe it will help someone else not to feel so alone one day. I've added some not so flattering photos.

On Monday the 15th of July 2019 I went to Blanchardstown hospital to beg the doctors to remove a stent I had in my ureter from my kidney to my bladder. I've had one since the 4th of April due to a large kidney stone, 2cm, and the fact my ureter is apparently the smallest they had ever seen. Lucky me! They have blasted the stone on May 25th and changed the stent but it was causing me so much pain I needed it out. I could barely walk or stand with the pain which we later found out was due to tiny bits of stone residue had coming down into the ureter beside the stent and were lodged there causing constant rubbing. That’s what had been causing all my pain.  

So, I went to outpatients and begged for surgery and the consultant agreed. They had a pretty full surgical schedule but were going to fit me in at the end of the day. All we could do was wait, so, we waited and waited and waited. They left us, Dave and I, in a random side room in outpatients and as we waited my blood pressure began to rise. I don't know if it was the lack of food, water or stress but it seemed to be climbing. A doctor came to put in a canula and was so bad at it that I almost passed out.  

Eventually they were ready for me. It was about 4-430 when I was wheeled up to the theatre suite from OPD in a wheelchair and transferred to a gurney when we got there. Due to my Reynaud's they wrapped me up like a Christmas turkey in silver foil booties, gloves and a hat. They also wrapped me in a Baire Hugger which is like a lido full of hot air. The previous surgeries were an hour or just over but this time I was under for over two hours due to the problems with the stent and stone residue. 

When I woke up, I had a bad cough suddenly which I hadn’t had before the surgery but other than that I felt how I usually feel, a bit nauseous and groggy. I used the bed pan because I was too unsteady to walk just yet. I lay there recovering and chatting to my husband.  

At about 9 pm I asked to use the bed pan again and my right leg wouldn't move. I could feel it but it wouldn't do what I wanted it too. I wasn’t too concerned at first thought it was a Reynaud’s thing but Dave was worried and called the nurse who in turn called the on-call doctor. By the time he arrived my arm was failing too I could barely move it and it was getting worse rapidly.  

At this stage things get a bit blurry for me. A F.A.S.T. call was put into the ambulance service, this F.A.S.T. call system is supposed to give you some sort of priority as you need to move fast to try save as much of a stroke sufferers brain as possible. Dave tells me we were told it would be there in 9 minutes. It took almost an hour and a half to come. Precious minutes ticking by with 1.2 million brain cells dying a minute.  

I remember part of the ambulance journey, blue lights flashing, Daves worried face looking down at me, the pressure in my head when the ambulance would brake hard. Then we finally made it to the Mater hospital and again it's all a blur. I had chest x-ray and a couple cat scans being injected with some radioactive dye which made me hot and put a funny taste in my mouth. They realised I had pneumonia which had come on suddenly probably due to an issue during intubation for the kidney surgery. The bigger issue was what was causing my inability to move my right limbs. They suspected a stroke but they can't give you a thrombectomy which is the medication to remove the blood clot unless they are sure that’s what’s happening AND they can't give it to you after 4.5 hours since the beginning of the stroke. I remember them saying they had ten minutes left and everyone look at me worried and looking at their watches. It was surreal to me. I wasn’t really sure what was happening but I knew it wasn’t good. Dave tells me the doctors told him to let my family know because it was not looking good for me. I have a very distinct memory of looking up at all these strangers standing over me, silent as could be, looking from the clock to their watches.  

Finally at 1.24am with six minutes to go they confirmed the stroke diagnoses and administered the medication.  

After observing me for a couple of hours they transferred me to the Special Care Unit, a step down from intensive care. Again, I don’t remember much of the first couple of days bar I was passing a lot of blood when I peed and helpfully my period arrived the day after the stroke too, countless blood tests, infusions of blood thinners, steroids and antibiotics, oxygen and nebulisers to fight the pneumonia. could barely breath my chest was so tight and I was coughing up blood. I’d lost all control of my bladder which was embarrassing but in those first couple of days I didn't even realise. I remember the nurses were so kind and patient. I have tiny veins and they, and I, were driven to distraction trying to get any blood out of me and they had to get a lot. 14 vials at once at one point. 

I had so many different teams and doctors coming to see me because they really couldn’t figure out why I had the stroke so “young”. At 41 I haven't been called young in a while. 😊  

Me three days after the stroke

It was Thursday the 18th before I really came back to myself in any real way. I was still on lots of oxygen and infusions of antibiotics etc and had no appetite. I’d lie in bed staring out the window at the sun shining outside, it was the hottest weather we’d had all summer. I named the seagull and pigeon who’d come sit on the window sill looking in Derek and Sue wishing away the time between visits from my family and Dave but when they’d come, I would find it hard to communicate with them as I was so exhausted. 

While my pneumonia was finally clearing up, I was still passing a lot of blood when I peed which was leaving me weak. I was also in a lot of pain in my kidney. they tried many different drugs but the only thing that helped was intravenous paracetamol. I spent many nights crying with the pain waiting for the time i could get more. I had more cat scans and X-rays over those days too. Surely I’m radioactive by now! 

Weird air filled leg thingys to keep my blood moving they were soooooo warm

On the 19th the physio came to see me and hoisted me out of the bed. I hated it. I hated feeling so useless, so reliant on others and so vulnerable. Sitting out for an hour in the chair exhausted me and to be honest sent me back into myself. I didnt see how I’d ever get better. My right hand had come back a little but that was it the rest of my arm and leg was paralysed.  

Swollen from meds and hoisted into a weird wheelchair trying not to cry

 Later that day I was told I needed a blood transfusion as my levels were dropping. I've had them before many moons ago but they creep me out. 

As the days passed, I gradually got more use of my arm back but it was very weak, I couldn’t use it to move myself in the bed even. Nurses needed to do everything for me, toileting, bathing and so on. The toileting was very stressful for me throughout the whole ordeal. With my Crohns Disease I have issues with urgency and this didn't get better and caused me a lot of panic attacks but the nurses were so kind and understanding and worked with me to try make it less stressful for me.  

                                                                       Pale as hell and needing blood

During all this time I was somewhat numb when it came to what was happening. Just getting through it but a week after the stroke it all hit me when I was alone and I cried and cried. I couldn’t stop. The sun was shining the seagulls screeching and here I was stuck in a hospital bed unable to do anything for myself on top of everything else I deal with, Crohns, Fibromyalgia, Reynauds and chronic migraine. I had an “its not fair” cry and got it out of my system; for now. 

Complete meltdown

By the Sunday evening my blood levels had dropped even lower so I needed two more blood transfusions because i was still passing so much blood my pee was black. 

On Monday I had another cat scan and several ultrasounds but my big problem for these couple of days was blood tests. I have as I said I have tiny veins and they had pretty much all collapsed at this point. It took a nurse thirty minutes to get 9mls at one point. It was causing me so much pain but doctors don’t care about that kind of thing they just order more tests. They took me off the infusions of blood thinner and replaced them with injections into my stomach. Boy did they smart, as of now I’m done with them and on to tablets for over a week and the bruises are still covering my belly.  

By now my arm was getting stronger and I had regained bladder control but my leg was still paralysed. I did feel I was getting back some muscle control in my right butt cheek though which was a start. 

On Wednesday the 24th of July I had one of the hardest days in the whole crappy time. Firstly, I had a test in the morning called a TEE, Transesophageal echocardiography. They “sedate” you and shove a tube down your throat and use an ultrasound wand to get a better look at your heart. It was hell. Sedation doesn’t work on me ever; I dry wretched even bringing up some gastric juices while they tried to get me to stay still pinning me to the bed. It took only about ten minutes but it felt like forever. The test revealed I have a hole in my heart I didn’t know about and the doctors think it might be part of the reason I had the stroke. I thought this day can’t get worse now that’s over with WRONG. 

Waiting on the TEE

Next about twenty minutes after my folks and hubby arrived to visit me I was told I needed to go to MRI for a brain scan. So I was wheeled down by a porter and a nurse and they did a hand over with the MRI staff but suddenly I found myself alone in a hall way on one of the hottest days of the year. I was within arm's reach of a water cooler but unable to move in the bed I was left in, leg still paralysed. Time ticked by five minutes, ten, twenty. Finally, a doctor was walking by and I asked her to get me some water. She was pretty much the only person to walk by in the fifty minutes I was left alone, immobile and nervous. After fifty minutes I was wheeled into the MRI machine and had the head cage put on that they use for brain scans. I closed my eyes and tried to think of anything else. If you’ve never had an MRI it's like being in a coffin inside a washing machine inside a cement mixer. Its claustrophobic and loud, so loud it shakes you. After about ten minutes they took me out, there was some problem with the alignment and they needed to start again. Unlike MRIs I’ve had before where the staff have been talking to me throughout but no one spoke to me this time not even to tell me they were about to inject dye. I finally could take no more. I was panicking and unbearably hot so I pressed the buzzer. As I was taken out they told me the test was finished anyway. I was so relieved. I had been in the machine almost an hour. They put me back into the bed and wheeled me out to the nurse who was waiting for me but we were another thirty minutes waiting for a porter to take me back to the ward. I was exhausted after it all and just wanted to sleep but was told I was being moved to the stroke unit. 

At the time I was nervous but excited to be well enough to move. My arm was working at about 75% my leg moving a tiny bit from left to right now as my hip came back.  They wheeled me out the door and down into a place that set me on my second meltdown. The stroke ward was a sauna. Within two minutes my gown was wet from sweat, the 5 other patients were all old and bar one were all bed bound. I will admit I completely lost it. I phoned Dave and I’m sure I was unintelligible with my weeping. I still feel bad for calling him so upset but I was crashing completely. Dave called the hospital and asked could I be moved to a single room. They weren’t too happy about moving me and he really had to fight but he got me moved to room on my own later that night. I’m so grateful he went to bat for me like that. It stopped me losing any hope I had built over the previous week and a half that things would get better. 

Complete meltdown number two face

  

The next two days were just spent getting more blood tests, seeing lots of doctors and a little physio. I was now able to stand for maybe 30 seconds assisted before I had to sit down and even then that caused massive and painful cramps in my calf. My foot and toes were still not moving. Day by day my leg started to improve but much slower than my arm had but any improvement was much lauded by my family.  

On Friday the 25th of July, ten days post stroke, I was told I was well enough to be moved to Blanchardstown hospital to begin rehab. I was very nervous about the journey. Firstly, I never grew out of travel sickness and sitting backwards on a stretcher in the back of an ambulance was something I didn't relish never mind the problems I have in relation to my Crohns. The ambulance men were so lovely and kind. I was giving an anti-sickness med and having spoken about my worries one of the paramedics told me his wife also has Crohns. They wheeled me into the ambulance as an old man in a wheelchair wheeled himself out the door they had opened to go for a cigarette. We were almost ready to go when we heard an almighty crash. The man had fallen out of his wheelchair so they went to help him. I couldn’t help but think, typical. 

Once they had him sorted, they delivered me to Blanch and I was wheeled into a private room with one of the most comfortable beds I have ever slept on! Lethal Weapon was on the TV and the nurses were so welcoming (one introduced me to my first Krispy Kreme donut and it was delicious) unlike the ward I had just come from. I got a commode right beside my bed which helped me immensely.  By now I could pull myself out of bed and onto the commode when I needed to and then call a nurse to help me back into bed Coping with my Crohns urgency and bed pans had been my biggest issue until this point.  

As it was Friday night the MRSA swabs they took didn't come back until the Tuesday morning at which point I was moved to a small ward.

Managed to wash my own hair for the first time in a couple weeks and shower sitting down  but no straightner makes for messiness

However, before that I was told I needed another brain MRI. Well I burst into tears when the doctor left the room. When the porter came to wheel me down, he saw I was upset and was very kind when I explained about the MRI in the Mater. He went to get a nurse who gave me Xanax and called the doctor back. In the meantime, the porter came back and said the test would be 20 minutes max. When the doctor came, I explained my reaction and she was very understanding She gave me Diazepam and she went with me to the MRI.  She and everyone were so kind and patient with me. No one ever made me feel like I was overreacting etc. The staff in the MRI were so nice and understanding. The machine had an extra 10cm clearance which helped but what helped more was the fact they talked to me throughout the test and before I knew it, I was done!  Never was I so relieved. 

Next physio began in earnest. It was and is still exhausting. They got me moving with a Zimmer Frame and I was told I wasn’t to use it alone however when the nurses didn’t come quickly enough to help me to the loo, I just went for it and I was so freeing. Hard as it was and unsteady as it was, I felt I was getting some sort of independence back. 

Zimmy

Gradually I got stronger and finally a bed opened up for me on the stroke ward. As I was wheeled up panic over took me again. These wards had no toilet in them and I was panicking I was also being pushed towards where I was in intensive care 24 years ago when I had my emergency resection which holds some awful memories for me. Thankfully I was in a ward just off that wing, in a small ward with three older ladies, much older, one was 91.  

The 1st weekend in August was a bank holiday and I was allowed home on a weekend pass.  Three glorious days and nights at home! I was so excited that even the Zimmer frame, wheelchair and toilet aid we had to bring home with us couldn't get me down. Time flew but it was lovely. I’d missed simple things like snuggling up on the couch to watch a movie and the dog who went bananas when she saw me. Monday evening came too quickly and I cried as we drove out of the estate.  

Over the following week it was all about physio. I was improving every day getting around with a stick having graduated from the Zimmer and a splint on my ankle. It was tiring but worth it as I could see my strength growing. By the Thursday of that week I managed to walk a short distance no stick no splint but boy was that hard. 

They let me home again at the weekend and this time I only had a stick and night splint. My heart again broke when I had to leave. I didn't want to go back to hospital.  

On Monday the 12th of august, four weeks to the day the doctors, physio and occupational therapist agreed that it was time to send me home! 

I was scared to get excited until I was driving out the gate.  

Packed and waiting to leave

I’ve been home two weeks now and I’m getting a little stronger every day. My arm is 100% back but gets tired easily for now, my leg and foot are about 80%. There are somethings I still can't do especially if I'm tired but I’m coping. Stairs and steps take concentration. 

Mentally and emotionally I feel drained and close to tears pretty much 24-7. Fellow stroke suffers I've spoken to on facebook tell me that will pass in time.  

My brain is busy rewiring itself, it leaves you tired and emotional but isn't it an amazing organ?? 

I’m so grateful to be the other side of this even if parts of me are still in that hospital bed staring at my arm and leg willing them to move even a fraction. I will need surgery for this stent I still have in me and probably to close the hole in my heart. This fills me with dread but I’m trying to push it out of my head and enjoy the now because it was hard fought and won. 

Thanks for reading this!