So after several attempts they decided to give up and refer me to the line specialists. I had to be taken out of my isolation ward and taken downstairs to where she lives. Being taken out of the room isn't a problem at the moment as I haven't really started the serious stuff until after Thursday once I have had the Radio therapy and the new Stem Cells from Nigel. I have to go to a different hospital again (Clatterbridge) on Thursday where I will be mingling with others, so not really a risk. Although I will obviously avoid any real contact with people as they might be carrying some kind of bug.
There was another issue with my line as well. The fancy way the surgeon had fixed the line in was causing a bit of concern here as to how they were going to keep it clean. The surgeon had adapted a stoma ring (which are used for colostomy bags) and stuck it to my chest and then sutured the line to it. This works really well and is a good solution to stopping the line from moving while it heals in place, making sure that the collar doesn't move position. Ideal if I wasn't going to have a stem cell transplant that is where they need to keep a constant eye on the line for cleaning purposes in case I get any kind of infection. So now there was two reasons for seeing the the line specialist. The fixture needed looking at and to see if she could get the line working.
The porter took me down to the bowls of the hospital where the specialist, whose name is Helen has her office and staff of a couple of nurses. The office/examination room is based in part of the hospital that is no longer used. I think it is an old ward that is closed at the moment and they are just utilising the space. However I think the isolation for them has made them a bit crazy. For those that know Liverpool and the how people are here, you will know that some of them are the funniest and nicest people you could ever meet. I think these girls/nurse/specialists have these type of people but have been on there own down there for too long and it its sent them a bit doolally (crazy). They were great fun and we never stopped laughing. They had never seen a line fixed the way mine was and were so intrigued by it that they called the hospital photographer to catalogue it so they can use it for training purposes. Helen the specialist was wonderful and managed to remove the stoma rind and clean the line. She had to use steri strips to secure the line again fastened in a circular method that made sure it didn't move. It looks and feels a lot better now, as the stoma ring was irritating and we couldn't get to the dried blood to clean it up.
Now to the second problem, not being able to get any blood out. Helen tried the same methods first we tried upstairs on the ward, but a lot more vigorously. Lots of deep breathing methods and trying to get it to flow if I was flat on the bed or sitting bolt upright. She managed to get a few drops out, but it wasn't enough to say it was working. Helen explained it could be a couple of things; either the line needs cleaning, which they put some kind of fluid in the line and then leave it for a couple of hours and then flush it through, or it is in the wrong position. The position could be to close to one of the walls or lining and what is happening is that when putting fluids in, there isn't a problem as the pressure just pushes the wall away away and the fluid goes in ok. When trying to get something out the opposite happens and the wall or lining or whatever else it is up against, gets sucked into the line, hence causing a blockage. The only way to really find out is to take an x-ray and see where it is in relation to the heart and the surrounding area. Arrangement were made for me to have an X-Ray and I was taking back to my room and left the girls to calm down. If ever you need to cheer yourself up, just go and visit them I'm sure they could do with the company.
I had the X-Ray done later and as I mentioned in a previous post, I was looking out for Paula or Bernard, just in case they were around in the hospital, but I never saw them. The likelihood of seeing them was pretty slim anyway. Helen needs to review them and I think she is doing that today. The doctor was in before and said that he is waiting for Helen to review them. In the mean time though they still need to get some blood out of me, so the doctor has put a cannula in so that they have something to use.
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Just had a visit from Helen the specialist. She came to tell me what the issue is. After looking at the X-Ray they can see that the line is VERY short and only just in a vein. So I'm going to have to go down to theatre to have it fixed. I'm told they will use the current line to as a guide and somehow slide it down the same way, so they wont have to do a complete new hickman replacement. I just hope it isn't as uncomfortable to fit as normal. The reason I had this one fitted at Chester prior to coming to Liverpool was that I would be under sedation as I didn't want to go through the discomfort again. Oh well I should have known that it would have gone wrong, if it can go wrong it will go wrong with me, I always have to be a bit unusual. I've heard lots of people say .... 'That Sean ... oh year he's the unusual one isn't he.' ;)
So the problem is now when I'm going down to theatre! they are trying for today, but it depends on how busy it is to fit me in. If they can't do it today, then it will have to be tomorrow morning as that will be the only time I'm available, which will mean a very busy day tomorrow. First thing Hickan fixed, afternoon radio therapy and then late afternoon for my stem cells.
I just hope the Hickman line isn't uncomfortable too much as I will have enough to contend with already without additional pain from my line. It's a shame I can't have some wine, I could do with a glass or twenty now. .... sigh!