Ah-HAH!!!
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!
Latest Immunologist Visit
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!
Latest Immunologist visit and cutting the fat
Greetings...
I forgot to post about my last Immunologist visit. That is probably because there wasn't really anything to report. BP was fine as was Creatinine and other blood tests. Well, when I say 'fine', they were 'fine' for me. someone else may not consider an abnormal Creatinine reading to be ok but I do because it was the lower part of abnormal :-)
One of the problems I've been facing is my weight. When I left hospital in 2003 (admittedly I was still sick) I was 71kg. As of two weeks ago I had topped out at 112.1kg. Well, it is really starting to affect the way I think and, mainly, the way I feel. No one can feel healthy carrying that much pudding around least of all me.
I have resolved to make some changes. I started the Body For Life program (
www.bodyforlife.com) two weeks ago and have lost just on 6kg (not a common occurrence apparently). I'm being realistic though. Most of that was just water-weight that left me when I started exercising. I'm going to the gym three days per week for weights training and I'm doing my cardio at home on the once-dusty treadmill. I'm expecting slow but steady results of around a 1kg loss every week. I'm feeling a million bucks already and a lot more energetic and clearer in my head.
The next update will probably be in June when I've almost finished the program and had my next Immunologist visit.
Stay groovy.
Latest Immunologis Visit - 5 December 2007
***Marjorie***
You left a comment on this post but I can't get in touch with you. Please send me an email at andrew@andrewmaclean.net
**************
Me again...well...who else would it be? ;-)
Latest visit to the Immunologist was basically a standard one. Although being a little concerned about my BP, it seemed to be pretty much normal - a little high but nothing to worry about.
My Cholesterol is up so I'm on a double dose of Lipitor for a while and on a promise to actually exercise rather than just sit on my can and think about exercise!
Interestingly and perhaps slightly disturbingly, I have Cholinergic Urticaria (and no, before you ask, it has nothing to do with my Colon). It's a form of Hives. It's completely benign but darned annoying.
My liver function seems back to normal and my Creatinine has gone from a rather unsettling 150 down to a much more respectable 112. If my blood is happy then I'm happy. We make a good team, me and my blood. Yes, we're great bloodies. Bloodies, get it? Bloodies....buddies??? baddoom-tish. Thank you...thank you....try the Veal...I'll be here all week...
Latest Immunologist Visit - 5 October 2007
Almost your standard, vanilla, pedestrian Immunologist appointment save the fact that my Creatinine is up, my liver function is a little awry and my cholestorol is up despite me being on Lipitor.
Apparently the issue with liver function is a side-effect of Immuran (the Chemotherapy drug of champions) and apparently to be exptected so he's not fussed about the result.
Also, it seems I'm getting a reaction to the Bactrim in the form of itchy skin and some strange marks coming and going. Consequently, I'm off Bactrim now which is fine because it's one less pill to take and not so fine because I just bought a new batch :-)
Other than that, I'm fit enough to climb Mount Everest. Really. ;-)
Frustration: being unable to function as you once did
G'day all...This comment was posted recently and I thought I'd try and address is here. I don't know who posted it because you didn't leave a name or email address. Pity.Hi, my 43yr old husband was diagnosed with wegeners about a year ago. So far the symptoms have not been too bad. He seemed to be symptom free until recently. Its so hard to see a very athletic, physical man who, aside from a runny nose and eyes that look like cherry tomatoes sit around and be unable to do any thing. I know it bothers him to see me doing all of the yard work and stuff is there something that some one may have said to you to make it easier and less frustrating for you?
I can definitely understand that. It is incredibly frustrating being forced to sit and do nothing. I had exactly the same experience, having to watch my wife do much of the work and also pay other people to do the work that I should have been doing. I wasn't athletic by any means but I was leading your typical type-A existence doing everything at once then crunch, I hit the ol' WG brick wall.
There were two things that the nurses in the hospital (and a few other people) said to me that helped (not much but they helped all the same).
1. Three steps forward and two steps back
Sounds really positive doesn't it?? NOT! I thought that until I realised that the more I am aware that any progress I made would be tempered with a setback or two, the more realistic I became and the more I noticed that I was moving forward. The more time went on, the more it became 4 steps forward, two steps back, 5 steps forward, one step back etc.
2. Baby steps/Celebrate the positive
Relates closely to the first in that progress will be slow but it will still be progress. Make a fuss when something positive happens no matter how small. "Look! I managed to walk the length of the hallway today without stopping! Break out the party poppers!!! WOOHOO!!!
In the end though, no matter what you say to someone, it has to come from within, from a positive outlook and from an awareness of the progress (no matter how small) that is being made. Oh man, I sound like Dr. Phil.
On a more practical note, can you afford to pay someone to do the yard work? Then you could both sit an watch. It's not an ideal solution I know. I don't know how badly your husband is affected but perhaps there's stuff that he can be doing while he's recuperating e.g. folding clothes, peeling potatoes, helping kids with homework etc.
Cherish what you have, not what you don't have. Life is everything, the rest will come with a subtle blend of planning, patience and brute force :-)
Immunologist Visit 21 March
Nothing momentous to report. BP 147/80, Creatinine 142. All good. I told him about the loss of my sense of smell. Turns out that these kinds of things happen and there's not a lot (read nothing) can be done about it. My ANCA wasn't back so if that's elevated (which is doubtful), he'll book me in with an ENT who'll scope me for lesions. Zzzzzzzzz....boring :-)
Apart from the fact that I need to lose a couple dozen kilos, I'm doing well! I get to see him again around the end of June.
I almost wish I had something dramatic to report to make this worth reading!
Smell that? Nope.
Over the past several months I've come to notice that my sense of smell isn't what it used to be. Gradually over this time I've lost most of my sense of smell to the point where I have to smother my food in fish sauce, garlic and chili to get any flavour at all.
It's on top of my list of things to talk about when I see my Doc in March.
Latest Immunologist Visit - 20 Dec 2006
Hey hey :-)
Saw my Immunologist for the last time this year. He's very happy with my progress. In fact three of the blood results that were abnormal three months ago are normal now which is great!
Blood pressure was his only concern as it was 174/81 but it goes up and down like a yo-yo anyway so he (and I for that matter) aren't too concerned.
ANCA wasn't available at the time so I have to ring in the first week of January and find out what it is. It will give us the level of the disease activity and tell him whether or not he has to increase my Imuran dosage.
Pretty boring but it's an update all the same.
Wishing you and yours a very happy Christmas and a brilliant 2007!!
Its been a while...
Even though I'm going to the Immunologist next week, I'm going to write an update now just to prove to myself that I can be proactive if I want :-)
Just got over the worst case of the flu I've had for many a year. Had trouble breathing there for a while - was really nasty. It's taken almost three weeks to kick.
Other than that, I'm feeling great although I slipped back off the wagon as far as coffee is concerned. I was having a few cups a day when I was feeling crappy because it made me feel better. I'm basically off it again now but it tasted so good!
Ok there ya go - I finally updated my blog :-) good for me! See you next week!
