Chemotherapy, infertility, Ramipril, Doctor's visits and other stuff
G'day...Sorry for being away so long. Life has been rather busy and lets face it, I can be a tad lazy with updates too :-)
I have seen both the Immunologist and the Renal Specialist a couple of times since my last post. Both of them seem to be really happy with how I'm going. My blood test results are getting better all the time but my Creatinine levels are staying in about the same abnormal place as ever. This will probably be the 'normal' range for me in the future.
I had a couple of months or more with a horrible dry cough that wouldn't go away. At first it was thought that it could have been whooping cough but it didn't really sound or act that way and, after I finally got blood tests done, it was proven that it wasn't. My GP, God bless him, knew that the blood pressure medication called Ramipril can cause this cough. It can happen at any time while taking the drug, not necessarily when the patient first takes it. Lo and behold, when I stopped taking Ramipril, the cough stopped! Yeehah! Best of all, my blood pressure continues to be fine even though I'm off one of my blood pressure meds.
Just before I was admitted to hospital a few years ago, I had a Renal Ultrasound. Among other things, this turned up an enlarged Prostate. I'm finally getting my act together and having this checked - with ALOT of prodding from my loving wife too! Ohh...that reminds me, Valentines day is coming!!
Sadly, a couple of days ago, we found out that I'm definately, shall we say, "shooting blanks" and we won't be having any children. The Chemotherapy that I had to go through is the cause of this. While I'm happy to be alive and am thankful for all that I have been blessed with, it would have been really good to see someone that is half me, grow up. Oh well, it's up to God now I guess.
My hobby is designing websites. I very don't get paid and actually get more benefit out of doing work for free. It means that I can set my own schedule and it's easier to fit in to my life which is getting busier every day. I'm currently re-working one website which I hope to have finished by the end of Feb. '06. After that, it's directly on to another. This next one came via a referral from someone I have never heard of to an email address that they shouldn't have known about. Perhaps Gods hand at work? Combined with the other websites that I am mucking with just for myself, I have work coming out my ears. Complaining? Me? Nah - I wouldn't have it any other way - seriously!
I'll be back later - hopefully not TOO much later!
Andrew
posted by Andrew MacLean @ 2:16 PM
6 Comments:
Wanted to let you know that I put your link on my page. Yea... I relate with the chemotherapy and infertility... In my case, I am now in post-menopause. (sigh) :-)
Andrew
another friend of mine started her blog two days ago... she is into researching anti-inflammatory diets for WG patients.
Her site is http://cyndispage.blogspot.com/
Hope life is treating you well...
Hello i just stumbled across this blog site whilst looking for info about wegener's. I was properley diagnosed wg only about 2 weeks ago.
I had been refered to the reumotology consultant by my g/p, this hapened after i had been getting joint pains in my shoulders neck ect.I also told my g/p about Night sweats,always tired ect,,, u know you dont like to complain about to much do u.
As it hapened my g/p had a couple of student docs on hand and asked if i minded them sitting in,lucky for me i said ok because i still believe to this day i would not have got the full axamination,and referal,,had the doc not been out to impress the students,,lucky me..lol.
I was prescribed anti i,nflams and told i would get a letter from the Big Hospital....woooh i thought might get an appointement in 6 to 9 months.
the meds were really helping voltorol it was and i thought i was just getting a bit old,,ie athritic.
But i had just been to cyprus got married and had been diving of boats into the sea and having the time of my life 4 weeks prior to this,, anyhow i got that Big Hospital letter and an appointement within 6 weeks (lucky again i thought)
The Doc was a star he told me he thought i was a straightforward case as i have had colitis/bowel for about 20 years,but i have had no problems since diagnosis,,he thought the meds just needed to be increased.
Then he got the results of my routine urine sample back,and also inquired about my swolen feet ?? i had not realy noticed them before but the were a little puffy.
My protien levels were abnormally high,,told me i had to be admitted this week gulp i thought,,kidney,s he said.
Admitted kidney biopsy carried out,Diagnosed Nephrotic syndrome (minimal change) thats the bit i liked Kidney doc says steroids will sort me ....and they do all joint pains go kidney,s functioning well No/protien..
regular visits ect...for 5 weeks...then the phone call ahum mr cornfield had an interesting talk with Dr Tuck reumo/ Dr kardasz kidney man....he has had some results from a anca test...mm and we are quite sure you have w.g...you will need to go on a chemo drug as well as your steroids.. we will talk when you come in in 4 days...dont worry.
Straight on the internet..wegener's desease...gulp...phoned the wife cry...more internet...more crying her not me...lol.
I feel great i said i aint gonna die,,, they think they have caught it early i have no known lung problems kidney,s are doing there job joints are ok still working playing with the kids... every body is treating me as if i am on my last legs...lol.
I am lucky i always knew i was...i know a lot more about wg than i ever did and i hope all you sufferers out here take care. Some of you,no a lot of you aren't so lucky.
can you tell me does it cause your viens in your arms and legs to go lumpy mine have a bit and weren,t that bad before/and does anyone know what triggers w/g.
its just i have been working in an enviorment that is known to have (blue asbestos) within it could inhilation of particles have coused this reaction....once again take care all..last blood test white cells are still high but coming down ??? exactly...u know more than me......bye for now.
cornflakes
G'day 'cornflakes'...
I'd write back to you personally but you didn't leave your email address :-)
Yes, it's great that you got diagnosed early - a very good thing. It sounds like your doctors are right on top of it and that you're in good care. You have indeed been lucky!
The steroids should work wonders - they did for me!
I had swollen feet for ages up until I went to hospital - nothing would get rid of the swelling!
In ansewr to your question, your 'lumpy veins' don't ring a bell with me so it could be anything. This disease is weird in that it can affect different people in many different ways so it may be the WG and it may be something else - not very helpful huh?? :-)
No one knows what cause this disease - that's one of the biggest mysteries about it.
Stay in touch and let me know how you go with your tests!
Andrew MacLean
www.andrewmaclean.net
Hi andy wrote a long yarn yesterday,,but forgot my password hum so it was all a waste nice of you to get back.
Went ice skating with my 2 youngest girls on sun...now tues,,had a bit of a fall and ended up in casualty,,yep u could not make it up,could have been a lot worse bruised kidney,s could not walk for 2 days,jst pottering about now....as u might have guessed i,m not an expert ice skater..lol. i will have to pdate my profile so's u can see who u r talking to,,gotta dash hospital visit for bloods later mate ;-)..
...Flakes.
m.cornfield@btinternet.com
my email andy,,,, cornflakes.
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