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Jan. 31st, 2016 02:53 pm
MS blogging - 5 days in hospital
Monday - It was about lunchtime when I arrived and then I was passed through the triage nurse and first ER doctor to the second ER doctor. It was he who first said MS to me.
As it turned out, I was very lucky to have chosen Box Hill Hospital to walk into. They have a top-notch MS clinic on site and all the diagnostic tools right there, as well as a high level of awareness of the condition. I was sent down the corridor for my first MRI and had blood taken for the relevant testing that afternoon. When I read other people's tales of diagnosis on the web I can see how lucky I really was!
My eldest came over to pick up the car and my SoonToBe-ex came by with flowers and chocolate, which was sweet but disconcerting. I gave him my credit card to go and buy the school books I'd been planning to pick up that morning, which were needed for the start of the new school year on Thursday. One hard thing this week has been relying on other people. I'm an independent person and it does not come naturally to ask for help.
After the MRI, very late, Felix, a young doctor from Neurology, came past to give me the bad news that there were lesions on my spine highly indicative (when combined with my patient history) of MS. He said that I would be started on a treatment consisting of 3 doses of intravenous steroids which should assist with my current symptoms, however later he came back to say that his supervisor wanted to do more tests before starting treatment. I found this distressing, but the nurse later clarified that the delay was so that the treatment would not muck up the signs they were looking for, which made sense.
Tuesday-: In the wee hours of Tuesday morning I was moved upstairs to a single room in the Renal ward, as there was no space in Neurology. I woke up with a horrible feeling as if both legs had been coated in thick mud knee-high boots which had semi-dried in position, with more mud spattered liberally up my legs. I was scheduled for a lumbar puncture, I was told, but as it was a public holiday (Australia Day) that didn't happen. I was terrified of it, but desperate to get to the steroid treatment.
It was a frustrating day.
A senior doctor, Dr Loh, came past with Felix and co. to ask more questions. Waiting, waiting.
Wednesday: My lumbar puncture was eventually cancelled when a different senior doctor came to visit with his entourage. He told Felix that the results of my scan were conclusive enough that putting me through the ordeal of a lumbar puncture was not justified, as it would not alter the treatment plan. Thank you, doctor!
After that a cannula was placed in my arm for the much-anticipated treatment and I was moved up to Neurology, where I was when my friends Dave, Lee and Adam came to visit. They're relatively new friends and I was very much touched and cheered by their effort. I have a lot of friends and family who are not local, so real faces in the room was a treat. My children and STB-ex were also popping in and out every day with necessities and keeping me up to date.
A physio came by with a walking frame for me. Huh. That's a different vision of my future.
They did start the treatment eventually. The nurses were running hard all afternoon and it kept getting pushed back, but an hour into the 3-hour drip, I was taken downstairs for a second MRI with dye contrast. Neither the nurses nor I knew that this was going to happen. They had to interrupt the drip to insert the dye into my cannula. Still, they were able to finish it later.
Unfortunately, having it that late in the day meant that I was hopped up on drugs for most of the night! I half-woke up about an hour after falling asleep when a nurse came by to check my reflexes. My feet felt like they were booted in stingers! In my half-awake state I fretted that the treatment wasn't working and had awful semi-dreams.
Thursday - I finally lurched properly awake in the wee hours to find that my feet now felt about the same as yesterday morning.
I cried. For the first time since Thursday last week, I hadn't woken up feeling worse. The treatment had started to work.
When I phoned the children bright and early to wish them well for the start of their 2016 school year, I had a sense of optimism, rather than fretting at missing the day.
That afternoon I had a visit from another friend, Matt. I had reached out to him the day before with questions about MS, as he is quite high-profile in his concern about this scourge, which runs in his family. As it happened, he was coming into the hospital today for his own MRI. It was just lovely to chat freely with someone optimistic and yet realistic, warmly supportive and informed.
The second treatment happened. During it, Felix came by to ask more questions and say that the second MRI showed fewer lesions in the brain than had been anticipated. From my pov this was a good thing - meaning that most of my marbles were in good order! But it obviously worried the docs if they sent Felix to interrogate me about ancient history again. I began to fret about what it meant. At shift changeover the nurse said that a lumbar puncture was on my chart as a current test. Accidentally overlooked? Reordered? Were they going to keep me in hospital for more tests? It was a nagging worry. They'd seemed sure it was MS, but... what could it be, if it wasn't?
After 6pm the second senior doctor came around again to give me the official word: a firm diagnosis of MS. It was a relief, at that point. I told everyone on FB and phoned my parents. Onwards and upwards!
Friday - Felix had said that they could start the final treatment as early as about 10am and I would be out of hospital as soon as it finished. I didn't believe him, luckily. There was paperwork, and the final treatment was late again, but by 6.30pm I was heading out the door for home.
Throughout this time I was so grateful for modern technology! With my mobile phone and the hotspot it generated I could do my banking, distract myself with duolingo french lessons, chat with family and friends, do research into MS, watch TV and download podcasts... Just marvellous! The support of my twitter sisters and my old parenting board friends (from the 90s!) kept me from wigging out at times. Love you lot!
As it turned out, I was very lucky to have chosen Box Hill Hospital to walk into. They have a top-notch MS clinic on site and all the diagnostic tools right there, as well as a high level of awareness of the condition. I was sent down the corridor for my first MRI and had blood taken for the relevant testing that afternoon. When I read other people's tales of diagnosis on the web I can see how lucky I really was!
My eldest came over to pick up the car and my SoonToBe-ex came by with flowers and chocolate, which was sweet but disconcerting. I gave him my credit card to go and buy the school books I'd been planning to pick up that morning, which were needed for the start of the new school year on Thursday. One hard thing this week has been relying on other people. I'm an independent person and it does not come naturally to ask for help.
After the MRI, very late, Felix, a young doctor from Neurology, came past to give me the bad news that there were lesions on my spine highly indicative (when combined with my patient history) of MS. He said that I would be started on a treatment consisting of 3 doses of intravenous steroids which should assist with my current symptoms, however later he came back to say that his supervisor wanted to do more tests before starting treatment. I found this distressing, but the nurse later clarified that the delay was so that the treatment would not muck up the signs they were looking for, which made sense.
Tuesday-: In the wee hours of Tuesday morning I was moved upstairs to a single room in the Renal ward, as there was no space in Neurology. I woke up with a horrible feeling as if both legs had been coated in thick mud knee-high boots which had semi-dried in position, with more mud spattered liberally up my legs. I was scheduled for a lumbar puncture, I was told, but as it was a public holiday (Australia Day) that didn't happen. I was terrified of it, but desperate to get to the steroid treatment.
It was a frustrating day.
A senior doctor, Dr Loh, came past with Felix and co. to ask more questions. Waiting, waiting.
Wednesday: My lumbar puncture was eventually cancelled when a different senior doctor came to visit with his entourage. He told Felix that the results of my scan were conclusive enough that putting me through the ordeal of a lumbar puncture was not justified, as it would not alter the treatment plan. Thank you, doctor!
After that a cannula was placed in my arm for the much-anticipated treatment and I was moved up to Neurology, where I was when my friends Dave, Lee and Adam came to visit. They're relatively new friends and I was very much touched and cheered by their effort. I have a lot of friends and family who are not local, so real faces in the room was a treat. My children and STB-ex were also popping in and out every day with necessities and keeping me up to date.
A physio came by with a walking frame for me. Huh. That's a different vision of my future.
They did start the treatment eventually. The nurses were running hard all afternoon and it kept getting pushed back, but an hour into the 3-hour drip, I was taken downstairs for a second MRI with dye contrast. Neither the nurses nor I knew that this was going to happen. They had to interrupt the drip to insert the dye into my cannula. Still, they were able to finish it later.
Unfortunately, having it that late in the day meant that I was hopped up on drugs for most of the night! I half-woke up about an hour after falling asleep when a nurse came by to check my reflexes. My feet felt like they were booted in stingers! In my half-awake state I fretted that the treatment wasn't working and had awful semi-dreams.
Thursday - I finally lurched properly awake in the wee hours to find that my feet now felt about the same as yesterday morning.
I cried. For the first time since Thursday last week, I hadn't woken up feeling worse. The treatment had started to work.
When I phoned the children bright and early to wish them well for the start of their 2016 school year, I had a sense of optimism, rather than fretting at missing the day.
That afternoon I had a visit from another friend, Matt. I had reached out to him the day before with questions about MS, as he is quite high-profile in his concern about this scourge, which runs in his family. As it happened, he was coming into the hospital today for his own MRI. It was just lovely to chat freely with someone optimistic and yet realistic, warmly supportive and informed.
The second treatment happened. During it, Felix came by to ask more questions and say that the second MRI showed fewer lesions in the brain than had been anticipated. From my pov this was a good thing - meaning that most of my marbles were in good order! But it obviously worried the docs if they sent Felix to interrogate me about ancient history again. I began to fret about what it meant. At shift changeover the nurse said that a lumbar puncture was on my chart as a current test. Accidentally overlooked? Reordered? Were they going to keep me in hospital for more tests? It was a nagging worry. They'd seemed sure it was MS, but... what could it be, if it wasn't?
After 6pm the second senior doctor came around again to give me the official word: a firm diagnosis of MS. It was a relief, at that point. I told everyone on FB and phoned my parents. Onwards and upwards!
Friday - Felix had said that they could start the final treatment as early as about 10am and I would be out of hospital as soon as it finished. I didn't believe him, luckily. There was paperwork, and the final treatment was late again, but by 6.30pm I was heading out the door for home.
Throughout this time I was so grateful for modern technology! With my mobile phone and the hotspot it generated I could do my banking, distract myself with duolingo french lessons, chat with family and friends, do research into MS, watch TV and download podcasts... Just marvellous! The support of my twitter sisters and my old parenting board friends (from the 90s!) kept me from wigging out at times. Love you lot!