I had a slight set back about 2 weeks ago & I just felt like I was slowly being pulled down into my dark hole again. Rather than risk a huge setback, my doctor & I decided to tackle it early on & go through 5 sessions of plasmapheresis. All the arrangements were made, more time had to be taken off work & we set off for Durban bright & early on Monday to be admitted.
I went straight into ICU where I was welcomed back with open arms! The nurses know me by name now & have become like my second family. We even laughed because I went into the same bed I was in last time - they joked they were going to get a plaque installed that read "Megan Hunter's Bed". My doctor came to visit me, ordered blood to be taken & then I had to wait for the anesthetist to come to put my pipes in. The nurses battled to find a vein to put a drip in, so decided to wait for the doctor to do it when he came as well. I generally have very low blood pressure & my veins go into hiding the moment a needle is mentioned!
The anesthetist arrived & told me exactly what he would be doing...
Drip in, pain medication & something to make me "float" would be given through the drip. Then he would give me a few local anesthetic injections in the area & the the feeder wire would be fed through my jugular vein into my heart, before the CVP tubing would follow & then the wire pulled out, & the tube stitched in.
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| Me, miserable after having the CVP line inserted. |
It is painful. It is not pleasant. It is most certainly not the worst thing I have been through, but it is not a walk in the park! Plus these were put into my neck, so looked like an antennae that I was using to communicate with extraterrestrial life!
Desmond (the chap that does my plasmapheresis) arrived to start my first treatment & gave me some terrible news... The wrong pipes have been put in! Somehow there was miscommunication or a misunderstanding & the anesthetist had put in a CVP line, & this was meant to be a dialysis catheter. Very different. The CVP line is a lot smaller with 3 heads coming off it, whilst the dialysis catheter is thick with only 2 pipes showing. I was horrified!
2 hours later the anesthetist arrived back to insert the correct lines. He apologised profusely, held my hand & talked me through what was going to happen. A feeder wire was to be fed back through the CVP line, this was going to be removed, & then the thicker dialysis catheter would be pushed down. He explained this would be more painful as it is a much thicker tube, & my body is already injured from the first time around. He gave me more pain medicine, as well as something to help me relax; & then the correct line was inserted.
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| Me, tearful & fed up. |
We also discovered I am allergic to the OpSite plaster they had put over the previous pipe, as I had gone red & itchy with tiny pimple-like bumps forming just in that time.
The nurses held my hand through both procedures & cried along with me. They brought me cool drinks, spoke kindly to me & phoned my doctor as soon as everything was correct. The X-ray department came down to check the pipe was in the right place & then they left me to sleep. No plasma for me on this first day as they decided my body had been through enough & they just wanted me to relax & get over what had happened.
My sweet husband & mum came to visit me that day to cheer me up & keep me positive. They were there for me almost every day; taking it in turns to come visit. Unfortunately the hospital I go to is about an hour from home, & half an hour from mum so not close enough for anyone to just pop in anymore. Also I think friends & family no longer think me going to hospital is such a big deal. I have done it so often & am in every year at least once that I think it has become boring for them! I remember having masses of visitors when I first used to get admitted, as well as cards, toys & flowers galore. Now that I am a regular, this has tapered down a bit & some visiting hours it was just the nurses there keeping me company. It is understandable though & it doesn't upset me - it is simply the norm for some people that I am back in hospital. Almost like I am going to stay with a relative. I do appreciate those friends that could make it through to visit, as well as all the lovely messages & encouragement I received throughout this time.
They tried to give me pain tablets to take, but I battled to swallow them. This was especially difficult as I usually toss my head to get food etc down when I am battling, but now I couldn't move my neck properly given the position of the pipes. So it was kiddies syrup for me!
My first plasma treatment started early on Tuesday morning...
It is such a weird sensation, & I always get freezing whilst it is happening - hence why I am all bundled up under about 5 blankets! But these new machines are wonderful. It only takes about 1 & a half hours to complete it; compared to the old machine which used to take 4-5 hours. It isn't painful, but you can feel the vibrations of the machine - my lips feel like they are buzzing...
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| Midway through treatment, & after all 5. |
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| Last photo as an alien! |
I love how quickly I can see results with plasmapheresis. In the photos above, you can see how initially my smile was lopsided, & my one eye was more open than the other. The other 2 photos are after all 5 treatments & show both my eyes open properly & my normal smile! It is always so exciting to see these results; to hear myself talking clearly; to be able to brush my hair without having to support my one hand with the other; to lift my head off the pillow without having to physically lift it off using my hands. It is the small things that bring me so much joy, & the nurses & doctors celebrated along with me in every small victory!
The biggest concern was my blood pressure through this. I usually suffer with a low blood pressure, but it dropped right down to 80/40 (healthy BP is 120/80) & I often felt faint & dizzy; & the nurses had to help me to the bathroom. My doctor came to check on me at least once a day, & even came in on her weekend off to bring me a flower & show off her new haircut. She is my other mum & I am so grateful for all she does for me!
When you are in ICU it is not easy to escape. You are constantly connected to heart monitors, a blood pressure cuff & a thing that goes around your finger that measures oxygen saturation. I called this my ET finger as it glows & makes for good entertainment!
After all my treatments were completed, my pipe was removed & I was kept in for another day for observation. They always prefer to be safe with us snowflakes & ensure we are the best we can be. No chances can be taken!
Then I was transferred to my old home, Medical Ward 2. I have been coming to this ward since my diagnosis. The nurses know me, my family & my husband. The have seen me through my good & bad times. They have been there to help me bath when I am too weak, they have held back my hair when the chemo made me sick. They have fed me when I couldn't do it myself, & given me more hugs than I can even count! It was like seeing all my friends again. They made a plan to get me a private room (due to my lack of immune system I can pick up any illness very easily) & quickly settled me into a room fit for a queen!
I changed out of my hospital gown as soon as I could & put on my normal clothes! What a good feeling... I could now also wash my hair, which after a week of doing nothing was looking pretty grim! I had another reaction to the plaster that had been put on, so the nurses helped me change this to a smaller one & I was set to relax, sleep & recover.
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| Itchy itchy! The reaction to the plaster |
The lady who brings the meals around remembered me, & knows I like tea with no sugar throughout the day then a hot chocolate at night. She knows I don't have dessert, but do like yoghurt with my breakfast. She was so sweet & it was so lovely being able to catch up with her & learn how her family has grown since the last time I have seen her.
So although this was a horrible experience with the pain, low blood pressure & being in hospital longer than expected; it was lovely being able to see all my friends again & make some new ones. I hope I don't have to go back any time soon, but if I do I know I am in the best hands ever & will be looked after.
It was dreadful when the 12 year old boy next to me who was waiting for a heart transplant died in ICU, & it reminded me that life is short. We never know when it is out last day on earth. We need to live every day as if it is our last. Be kind to others. Smile as often as you can. Make friends. Never give up hope. And pray every day.
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| Little bit of a squiff eye - I hadn't had my morning nap yet! Otherwise all muscles working perfectly. |
I am home now, relaxing with my animals & my sweet husband is waiting on me hand & foot. I feel strong. I can talk well & even managed to do some loads of laundry this morning. I am going to cut my hair this afternoon (long hair with MG is not easy - there are times I cannot even brush my hair, let alone tie it up) & other than that I plan to take it very easy. Tomorrow I go back to work & hopefully can catch up on some of it that I have missed.
Thank you to everyone for your love, support & kindness through this awful time. May the next time I have to go into hospital be when I am giving birth to our miracle baby!
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