They say things are sent to try us and believe me I am being severely tried at the moment. Once I'd got over the euphoria of being told they know what is wrong and how to fix it the reality check set in and I woke up this morning realising that in less than a month form now I'm going to be permanently attached to a machine. What a big step to take. I also came up with a load of questions that my mangled brain had failed to compute while actually sitting in front of the consultant. I've sent them off to my nurse specialist who hopefully will get back to me soon. The first batch are listed below. I will add more as I think of them and let you know the answers in future blogs. For those who are used to the cosy, 'nothing nasty or involving blood', atmosphere of the PHA website do be aware that on this blog I intend to tell it as it is.
How long does the procedure take?
Is it done under local or general?
How difficult would it be to accidentally pull the line out in your sleep?
Will I be able to move my arm and shoulder freely without fear of dislodging it?
How many types of Prostaglandines are there and which one will I be given?
Have also been weighing up the pro's and con's from my point of view. The obvious con is the fact that I'll be attached to something. Others include the risk of infection at the line site, the complicated mixing of the drug and the switching of the syringe(though that will get easier with practice) and the increased hospital visits at least for the first few months. On the plus side there will be no more clock watching to take meds 9 times a day or lugging around a bag full of stuff every time I go out. I'll be less tired as sucking away on a nebuliser for 10 - 15 minutes each dose is exhausting. And I'll be getting a constant dose of the drug rather than a high and a gradual fading away as I get now, so I should feel better and have more energy.
It has been a month since I applied for my DLA and as yet silence. I've been back onto the website where it says my claim is 'in progress'.
To save me from myself Peter and Andrew took me to Costco this afternoon to pick up a few supplies. Peter was in charge of the trolley and Andrew took charge of the wheelchair. Thankfully it was very quiet so we were in and out in just over an hour. It did cheer me up to be doing something 'normal' even if it was in a chair. Tomorrow, if it is nice, Peter says he's going to take me for a push along the Ouse to see the new Cygnets.
Peter cooked dinner today. I think some cooking lessons are in order, I fancied a light delicate pasta, I got pasty and beans. Am I grateful? Of course I am but I don't want it every day.
Laurence went paint balling with some work colleagues yesterday. It was a painful experience by all accounts but hugely enjoyable even if the marks left do make him look as though he has an alarming outbreak of ringworm.
24. Go rock climbing
25. Go paint balling
How long does the procedure take?
Is it done under local or general?
How difficult would it be to accidentally pull the line out in your sleep?
Will I be able to move my arm and shoulder freely without fear of dislodging it?
How many types of Prostaglandines are there and which one will I be given?
Have also been weighing up the pro's and con's from my point of view. The obvious con is the fact that I'll be attached to something. Others include the risk of infection at the line site, the complicated mixing of the drug and the switching of the syringe(though that will get easier with practice) and the increased hospital visits at least for the first few months. On the plus side there will be no more clock watching to take meds 9 times a day or lugging around a bag full of stuff every time I go out. I'll be less tired as sucking away on a nebuliser for 10 - 15 minutes each dose is exhausting. And I'll be getting a constant dose of the drug rather than a high and a gradual fading away as I get now, so I should feel better and have more energy.
It has been a month since I applied for my DLA and as yet silence. I've been back onto the website where it says my claim is 'in progress'.
To save me from myself Peter and Andrew took me to Costco this afternoon to pick up a few supplies. Peter was in charge of the trolley and Andrew took charge of the wheelchair. Thankfully it was very quiet so we were in and out in just over an hour. It did cheer me up to be doing something 'normal' even if it was in a chair. Tomorrow, if it is nice, Peter says he's going to take me for a push along the Ouse to see the new Cygnets.
Peter cooked dinner today. I think some cooking lessons are in order, I fancied a light delicate pasta, I got pasty and beans. Am I grateful? Of course I am but I don't want it every day.
Laurence went paint balling with some work colleagues yesterday. It was a painful experience by all accounts but hugely enjoyable even if the marks left do make him look as though he has an alarming outbreak of ringworm.
24. Go rock climbing
25. Go paint balling
Have you contacted Daniel Male of Joey Pouch fame. I think he has had a Hickman line for 5 years or more. Perhaps he could answer some of your questions.
ReplyDeleteI have been and looked at the little bags he makes but have not approached him directly. I did post a question on the PHA website but didn't get many answers back. Maybe I will send him and e-mail.
ReplyDelete