I don't usually post too many rants, with me being a mod and all that. But I'm fuming, and need a good vent, and this is the only place I can vent.
I have a CF team, and Psychiatric team, a neurology team, and a neurology homecare team.
The CF team, is my main source of everything, and is the grounding center. All my other team's organise thorugh them. My CF team consists of 2 consultants-1 has been there since the unit opened and is the one who helped open the unit. He deals wth lots of other clinics though, so I never ever see him. The other is a new consultant, joined team this year, he's mainly a CF consultant, this is the consultant I mention. Everything is authorized by him usually. Then we have the registrar doctor. He's been with us nearly 2 years, it was through him that things got done really. Consultant's don't have ears apparently, so it was my doctor who did all the listening and pushing. He sorted it out so any worry at all, I only had too ring CF unit, and they'd do the rest. This is because I was never sure which team to ring, so in the end I just never rang any, and decided too leave it, until I got bad. IMHO my doctor is the best person ever, and I think I'd be in a lot worse a situation if it wasn't for him. He's leaving in December, and am worried what's going too happen.
Last lot of IV antibiotics I had was at the end of October. The ones before that were August July and April.
I am supposed too be having them every 3 months for 2 weeks at a time.
April and July-2 week courses. I had to go in early due too a cough starting.
August- Dragged in by the hospital, for the 4 days prior too my wedding.
October-Routine IV date, feeling icky and tired, had a weeks course.
When the 3 month routine was agreed, it was agreed with my doctor, nurses and dietician, it was towards the end of my July course. It was decided it was a good idea. I'd been stressing as I couldn't deal with letting people know I was ill. Been hiding my cough from Paul, put on a happy front whenever went upto hospital. I was getting really wound up, as I kept dropping hints all was not well, but noone was picking up on them. Eventually, my lung function dropped from 96% to 86% to 70%. IT was then I confronted my consultant, and had a big arguament with him, as he decided it was asthma not my CF that was causing my LF to drop. The same thing had happened the year before, when my LF dropped to 60%. It was a different doctor then, and he too had decided on asthma, until my LF dropped too 60%.
Anyway-after stating my case, it was agreed that if I did have asthma, it's only mild, and wouldn't have effected things so quickly. 3 monthly IV's agreed.
August comes along. I battle on for a couple of weeks, with occasional blue nails, and increasing tirdeness. I put it down too wedding stress. Came out in spots (these now seem to be definately infection related.) Again, thought they were most likely stress related. Also I was feeling run down as my friend had just died, the day after going upto see her, and the funeral had been organised for a day before wedding. Hospital appointment-5 days before wedding. Doctor keeps telling me I need to go in for IV's. I wasn't at all happy about it, but as soon as Paul found out that's what was wanted. I had no choice. So I went in on the Monday,I was suposed too be stopping in all week, going too funeral Friday, then home for weekend, then back for another week Monday.
Friday comes round, consultant comes round early in the morning. Says it's ridiculous I'm on IV's, and that they should cut short the course, and tels me I shouldn't have asked for them (yes, even though it was pestering from doctor that put me on them). I readily agree, I didn't want the darn things anyway.
Get through everything-honeymoon 2 weeks later, not many worries.
By the end of September I was coughing loads again. Consultant tells me that my lung function was normal. By end of October when my IV's were due again, I was exhausted, almost throwing up with coughing fits. In quite a state really. Speak to doctor again, he agree's too carry on with routine IV's. Consultant doesn't agree, even though he hadn't seen me himself, but stay's quiet till end of 1st week.
End of 1st week-in enters the consultant. I'm starting too feel better, but still not eating right, still tired and still got a bit of a cough, although almost dry, not having anymore coughing fits, and no longer looking pale. He sends me home, saying that the way Iv's have been going I'm going too become resistant. He also says that now, the gap between my routine IV's is going to be 4 monthly instead. I pointed out that was ridiculous. But he ignored me.
So, now we're towards the end of November. about a week after stoping IV's, I began to feel ill again.
Consultant has wrote a letter too all my team's. Went to see my psychaitrist the other day, and she mentioned a bit about letter. Basically it says that my LF, which I can't get about 86% now, is normal. I had a bit of a fit at hearing this. Told my psychiatrist that was rubbish, told her what my LF was at start of year. How can he say it's normal. Obviously though it's nothing too do with her, but he's going to pass it on.
2 weeks ago, I had a virus, came out in spots again. Was really unwell with it, but perked up quickly after a couple of days. Since then, I've been feeling worse and worse. All last week was spent trying not too be sick, while coughing up loads. This is the worst I've actualy ever been with this cough.
I can't lay flat to sleep, and have too prop up on 5 pillows, before my lungs will even settle. This has been killing my back and neck. But been sleeping realy well. The trouble is in the day.
I have 18 steps upto my house, and they are tiring me out whenever I use them. So been trying too stay in.
I've been in toruble yesterday with my Physio, as I'm menat too do a 20 min walk every day, without crutches, and I can't manage it. She dragged me on a 20 minute walk yesterday. By half way, I could hardley breathe. By the full distance, I was close too falling over, and couldn't do anything at all for the rest of the day. She says she expects me to do that walk every day. But, the thought is seriously upsetting me. I don't want to be in that state everyday. I do chest physio in morning and at night. I don't want too be too tired too do my evening session, because obviously, right now, I definately need it.
Anyway, I've not told the hospital I've not been feeling well. I was waiting for my appointment on Monday. Last night a nurse called me, to cancel my appointment. She said there was only one doctor on, and they were only having emergancy patients in. And they were reorganising my appointment to 10th December.
I got off the phone, and just immediatly broke down crying. I just seriously think they see me as a number. They didn't even ask if it was ok if they cancelled apointment, just said they were doing. I asked them if I could just have my port flushed, without seeing a doc. As when they flush, they also take bloods, and if it was an infection, they will have spotted it in my inflammation levels. 10 minutes later Paul got in, and rang the unit for an explanation. I was still crying my eyes out, had set off cough, was trying my hardest not too throw up, while coughing, then I couldn't breathe, which set off tears even worse.
They agreed to see me on Monday.
I've had about enough with the agro. A week of IV's, is enough too stop infection from afecting me, but 2 weeks are needed too keep it down for a couple of months.
The way the hospital are going. IF I do become resistant too antibiotics, it's because of them.
Along with all this, they are also going against what everyone else tells me, what the kids unit told me, and what my old doctor told me.
A lot of the arguaments are stemming from, I start too feel ill, before it effects me. My first symptom is I lack in energy. I don't feel sleepy though, I just feel drained of energy. I start too tire out on stairs. The next symptom is my appetite goes, I just no longer feel hungry, and after I week of this, I have too start foce-feeding everything.
These 2 signs, when I was at the children's hospital were generally enough for IV's too be started. Obviously coughing damages lungs, and infections harm them. They decided it was best to start them, before my LF got hit. When I got upto adult's there was a major disagreement about this. In some respects I agree. With just the little symptoms, it was decided oral antibiotics were a better start. This worked for a bit, but then it stopped. Even though I was having oral's, the symptom's got worse.
Now they will only treat an infection, when I'm coughing my head off, and weight starts too fall.
They say that my LF results play a significant part in deciding when I need IV's but I don't believe them. As I say, lost 10% lung function, and they have no decided too just class that number as normal, rather than trying too work out where it has gone.
I've been considering just moving unit's as soon as I learn too drive. I want too move to the best in the UK. Trouble is, it's at the other side of England.
I'm just so frustrated with it all. It would be fair enough, if I'd kept quiet about how much they wind me up. But I haven't, I've been vocal about my concern's. Noone seems too want too actually address them though. They're happier too just let me boil, than try too sort thngs out. That obviously makes me 1000 times more annoyed when they make the same mistake again, and again just ignore it.
I think a lot of it is a money problem, and more cuts too the NHS. But, To be hones,I don't think patients should be made too suffer, or even be aware of it. If I coulkd afford too go private-or if private wzs actually much better than the NHS. I'd do it.
Ok, whinge over-I needed that!