Tuesday, 18 October 2011

Pre-Assessment for Gastric Neurostimulator

Tuesday 28th October 2011

Ok now back to the future guys, got to keep strong and live for the living. I am still in a sense of total despair but I can't afford to loose my head now. I have a family to think about and that's all that keeps me going these days. Yesterday was my pre-assessment for my surgery. It brought it home to me just how much I need to get on top of things.

For those of you who are new to the page, I am having  a surgical jejunostomy (feeding tube), full thickness biopsies and a gastric neurostimulator. You can view information about the device at: www.medtronic.com/health-consumers/gastroparesis/device/index.htm.

The surgery is scheduled for this Friday (21st oct). My appointment went as expected, there were lots of questions about my general health, body weight, height, blood pressure etc and a blood test. I didn't need an ECG this time, as I had a cardiac echo in June this year. The nurse was lovely and again, genuinely interested in my condition. She couldn't tell me much about the operation because she hadn't come across the neurostimulator before, so my mother and I explained it to her. She told me to expect to be in roughly 7 to 10 days due to the fact that it involves a laparotomy (the type of incision). I also presume that it will be a slow process getting the feed up and running again.

I am getting really nervous and have had lots of moments where I have nearly called it off, but then I look at myself in the mirror and see a shadow of what I used to be. I look around the house and it's filled with medical kit, boxes of feed, tubes and syringes. I live in hope that this is not the way it will always be and that is why I can't change my mind... although I'm sure I'll change my mind a thousand times between now and Friday!

Wednesday, 12 October 2011

Just one more day

Wednesday 12th October 2011

So far this week I've managed to stay away from doctors and hospitals... an achievement in itself these days. I have just about managed to balance myself out enough to do what needs to be done.

It dawned on me this weekend that I did not have anything smart to wear to the funeral, all my clothes are far too big for me these days. So my mum and I went out to try and find something that fits. Surprisingly I managed to find the perfect dress in the first shop we went to...how often does that happen? So thankfully I didn't have to expend as much energy as expected. Although it has been a struggle to get through this last few days, I feel that grandad is there making sure it all goes well. Tomorrow is the day of the funeral and I have GOT to keep going for that, I am just hoping that life is kind for a change and allows me just one pain free day. I am resting today in the hope that I will be able to stand up for all the necessary parts of the service, I want to be able to stand tall and honor him as I should.

I had a letter last week for an outpatients appointment with my surgeon on the 1st of November. So there I was thinking I would be waiting at least a month for the operation. However today I got a letter with my pre-assessment date as this Monday 17th October and and admission date for Thursday 20th October. That's next week... scared, yes!!!!

For now though, I am concentrating on just one day. The rest can wait.

Sunday, 9 October 2011

Belated Diary entries

The following journal entries are from my written journal. I keep one when I'm too ill or tired to use the computer. Those of you who follow my diary will understand my current situation and I just hope you can bear with me through this roller coaster ride I'm getting right now. I hope to get back to my usual chirpy self some time soon but for now...things are going from bad to worse.

Thursday 6th October 2011

Following my recent bereavement, my own health has decided to take a nose dive too. By Monday morning I was getting the palpitations and nausea in a big way. My hubby dragged me to the doctors and she was not too pleased with my overall condition. She rang through to my consultant in Durham who arranged for me to be admitted the next day, after my botox injections (which were scheduled for Tuesday anyway).

So... here I am again, the last place you want to be following a bereavement. I know I need some rest now as my weight has plummeted from 46.3kg to 42.5kg today. I have promised the family that this time I won't come home without some form of nutrition  to keep me going.

My consultant popped by to see me and said they would keep a close eye on me and if the weight loss continues we may need to change the plan.

I also met my surgeon for the first time today. He was very understanding and promised that I could attend the funeral next week. He initially offered to put the PEJ tube in for me tomorrow, given my nutritional status, but then he went away and read through my notes. He came back to say that they wanted to do all the surgery in one go so I would still have to wait a few weeks for the tube. He was keen for me to have a new NJ in the mean time to keep me going. He told me that we are looking at the end of October or beginning of November for my operation.

I then saw the physician who does all my gastroscopies and NJ placements but he said that he would not be able to do the procedure until Wednesday. He told me to speak to my consultant about it and get back to him asap to book the space.

Friday 7th October 2011

Today is my 30th Birthday.

What a way to spend it. I'm going through moments of shear exhaustion to floods of tears and pain. I've seen my consultant this afternoon and we decided that there is little point in going through another invasive NJ placement only to have it removed after a couple of weeks. So I'm back to going solo. I guess the good news is, that I can go home this afternoon and spend what's left of my birthday with my loved ones.

Perhaps I can have permission to postpone the big "30" until I'm well enough to party a little! So let's just say I'm still 29...just for a little while longer!