Just had my Immunologist appointment

[andrew]

Hi hi...
Just had my quarterly Immunologist appointment. The results:

• BP is actually LOW for the first time in my life (104/80).
• Creatinine is 116 which is normal for me
• Other bloods are in normal range....for me
• I'm being booked in for a lung function test

I explained how I can't get a lungfull of air when I exercise or walk up several flights of stairs. This isn't normal 'running out of breath', it's something else. It's like one of my lungs is taken away and I have to try and survive on one. It's quite scary actually when it gets severe. I'm calling to book the test tomorrow. They should be able to fit me in in about two or three weeks.

I'm staggered about my BP being low. I reckon his machine was broken I have my own so I'm going to keep an eye on it myself. If it continues to be low then he's going to adjust my BP meds a bit.

My ANCA level wasn't in. it takes about a week and I only got my bloods done on Monday. What can I say? I'm disorganised

Other than that, I'm fit and healthy and will live until I'm 100 at least. I hope I do. Maybe that'll give me enough time to do all the things I want to do!

[capabayan]

The whole lung thing... that's what it felt like when my trachea started closing up. Have you had any sort of stenosis problems before?

[andrew]

Nope - no stenosis issues previously. Interesting point though. Might discuss this with the doc. He's going to call next week with my ANCA results.

[andrew]

I just realised why my BP was so low. The doc tested my BP on my left arm. For some reason, that has always been dodgy when it comes to getting Blood Pressure checked or getting blood tests.

I tested myself with the kit I have at home last night and it's back to a more respectable 154/81. Heh Now I feel better!

[RCOSSIO]

whoa 154...is that normal for U! seems somewhat high is that due to your meds?

122/78 for me hopefully it does not rise!

by the way! do they use a big cuff when checking your BP...i know the small cuff gives me a higher reading!!!

[andrew]

Yeah it's about normal. My aim is 140/70. Despite my BP meds it remains a tad high though. I must admit that I need to look after myself more and get more exercise. I need to stay sharp these days with working and running a business at the same time

[Trish]

Hi Andrew
I havent been on site for a while, hope things are better for you. Like you I was running our of air and went on like this for a year, the last couple of months were the worse. Eventually having to have a tracheotomy. My lungs as far as I know from my last CT scan are fine, my blood pressure was always excellent but just couldnt breath. I used to complain to the doctor on his rounds when I was having my IV cyclo but by the time he came round to see me I had been lying on a bed for 4 hours with my IV so I think he must have thought I was over exagerating. I was always seen by an intern prior to being pluged in, who would ask me the same questions every month but they never seemed to be worried about the breathing. I used to wish they would walk with me up the corridor to see just how bad I was. Im not copeing with the trachey very well, I hate it, so hope things dont progress as badly for you. If anyone else has a trachey Id love to hear if there have any tips on making it better. Presently I cough consantly and have to clean the tube around 20 to 30 times a day, depending on how physical I am. It doesnt take much just a quick step from the car to the office and I have to clean it. Sleeping, lying down siting in some positions are all difficult and have to be done cautiously as it can get knocked and starts bleeding which means more cleaning. Its been 2 months now and I keep thinking its got to get better as I have another 10 months at least!!!!
Sorry for being such a moaner today. I know there are a lot of people worse off than me, but sometimes you just need to be able to moan about it to someone who knows what its like. I guess I put a brave face on to friends as I know having someone moaning and complaining all the time can bring others down so I tend to keep it all bottled up.

Regards
Trish