Wegener's Granulomatosis, Wegener's Disease Blog

Latest Immunologist Visit - 5 October 2007

2007-10-06T06:51:00.000+10:00

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

2007-05-19T10:22:00.000+10:00

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

2007-03-24T18:09:00.000+11:00

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.

2007-02-17T12:39:00.000+11:00

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

2006-12-24T10:18:00.000+11:00

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...

2006-12-09T17:35:00.000+11:00

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!

Latest Immunologist visit - 13 September

2006-09-17T09:40:00.000+10:00

No disasters to report. A fairly standard appointment. Creatinine down to 117 - cool! Blood pressure slightly high at 164/86 - still cool for me! Small traces of protein in urine - ho-hum :-) Doc said that he might put me on an additional med to combat the gout. Also might swap out one of my BP meds to remove one of the diuretics that are contributing to the problem. We'll see how the gout affects me over the next few months.

I've also changed my diet fairly drastically which seems (at this point) to be helping as well. The main thing is that I've compeltely eliminated caffeine from my diet - no more coffee - nada - zilch - bugger all. It REALLY hurt for the first few days but otherwise plain sailing after that. I'm not suggesting that coffee has anything to do with gout but ditching it has everything to do with making me feel better! I've also swapped white meat for red meat and am eating more legumes and vegies than I ever thought was possible :-) Seems to be helping for me so I'll see what happens in the long run.

Next appointment is in December - the day before my Doc's 60th birthday. Hmmmm....methinks Gorillagram!

ANCA level

2006-07-26T07:59:00.000+10:00

I just got word about my PR3 ANCA levels. Gone up a bit from 12 to 14 but essentially stable. Hopefully one day it'll go in the right direction!

Latest Immunologist visit - 12 July

2006-07-18T08:48:00.000+10:00

Not much to report really. Probably because my ANCA levels haven't come back yet :-) He seems generally happy with my progress despite my blood pressure being elevated last time I visited my GP. BP was 'normal' (and I use that term loosely) when tested today (169/80). It’s probably a tad high for normal people but 'normal' for special people like me.

My Creatinine was a little high at 124 but no dramas there. When I was in hospital I got the clue pretty quickly that my Creatinine level was important so I started writing it down every day as soon as I could hold a pen and focus my eyes. Upon admission to hospital my Creatinine was 636. My notes see it gradually (and happily) decreasing down through the 400's and 300's until my release. Next notes see it in the 150's so it has always been heading in the right direction since diagnosis.

Enough prattle. I'm goung to leave a message about my ANCA and that'll sort the sheat from the chaff :-)

Later peoples...I'll post again when the ANCA's through.

Some positive Renal-type news

2006-05-11T07:19:00.000+10:00

I had my appointment with my Renal doc yesterday afternoon (finally - since I forgot the first one and couldn't make the second re-scheduled one!). He's so happy with my kidneys that he doesn't want to see me for a whole year! Woohoo!!!

Now - if only I could get my Immunologist to say that :-) I'll work on it...

Information for those that are new to Wegener's Granulomatosis Disease

2006-04-19T08:17:00.000+10:00

This was posted in the WG-Discussion email group that I am a member of. I thought it worthy of posting here as it contains some great info! You can find the Discussion Group at www.weareb.org.

Andrew

---------------------------------------------------------

NEW TO WEGENER'S GRANULOMATOSIS OR TO THE WG-DISCUSSION EMAIL GROUP?

Hello, and welcome to the wg-discussion e-mail group. It's good you found this group as the many members have lots of support, information, and experience. Mike and Zandra Clay set it up about nine years ago, and keep it going for which we're all grateful. I'm glad you are already a member of the wg-discussion group so you are able to be in contact with other WG patients.

This "canned" email that I usually send to newly diagnosed WG patients is expanded in my web page on WG (See address at the end). Here I just try to hit the high points.

I address this directly to you because it's lengthy and because most other email members have already seen information such as below. I'm not medically trained, so NOTHING I say here or anywhere is to be taken as medical advice. All medical problems, symptoms, and questions should be referred to licensed medical professionals.

GETTING CONNECTED

If you haven't already, you can join the Vasculitis Foundation (VF) formerly the Wegener's Granulomatosis Association (WGA), for $25/yr in the U.S. (U.S. $30 to foreign addresses) and receive their bi-monthly newsletter. If you can't afford a membership, VF (WGA) will subscribe you to their newsletter at no cost.

You can get a "patient packet" by downloading from the WGA web page, the 150-page file in either Microsoft Word or Adobe Acrobat format, or by requesting a hard copy from the WGA.

Contact them regarding membership and the patient packet at their web page at http://www.wgassociation.org/ or phone 1800-277-9474. Outside the U.S. telephone 816-436-8211

There are some support groups around the U.S. that meet. A list of contacts for various states and countries is on the WGA web page at http://www.wgassociation.org/aboutwga/areacontacts.jsp The contact for your area or state or province can help you get in touch with other WG patients in your vicinity and tell you of any WG support groups near you.

Also, there's a Monday night live chat on Internet Relay Chat (IRC) at 9 PM EDT on Newnet, channel #wegener (note-- no 's). Instructions on downloading and installing a client IRC program are at http://www.weareb.org/WG/chat.jsp

Or one can use the "Chat" button on the Newnet web page at http://www.newnet.net/. You might have to type "/join #wegener" in the command line after connecting to Newnet, or ask an IRC operator (IRC OP) for assistance.

In July of 2006, there will be a WGA Vasculitis Symposium in Baltimore, Maryland. If you are able to attend, you'll have a chance to meet other WG patients, to hear and question leading WG experts, and eat and drink too much (a danger with all medical meetings).

WHAT ABOUT WEGENER'S?

As you may know, getting diagnosed is often the hardest part of having WG.

And as you may know, WG is chronic and incurable (excepting perhaps by a very risky and expensive process called stem cell transplant).
Consequently, a WG patient has to be followed the remainder of his/her life, with periodic blood, urine, and imaging tests.

As the details of the mechanisms of WG remain incompletely known, it's not possible to know exactly what triggers a relapse. Relapses are always possible, and often seem to be triggered by exceptional physical or emotional stress, or sometimes perhaps by infection. Remission of WG can last years, or months, or weeks. A few lucky ones never seem to have a relapse.

It's only natural to feel frightened and perhaps despondent because of the damage WG has done or might do. Over time WG, patients find that their spirits improve and the disease isn't so scary. Most WG patients get the disease into remission and go on to live satisfactory lives, even if not exactly as before.

A positive attitude can be a great help in adjusting to having a chronic
disease. Some patients find antidepressants to be useful.

WHAT'S THE FUTURE?

The outcome depends on how much damage the disease has done and whether early and aggressive treatment prevents further damage.

Every course one can imagine has happened to WG patients. Some adults take early retirement. Some get less demanding jobs or switch to part time. A few are able to continue working full time, but not many until after successful treatment. Some find their spouses leave. A few have gone to live with relatives to reduce costs. Etc., etc.

Children may have to be home schooled or receive specialized instruction and tutoring. College students may have to skip a term or reduce their workload, or drop out for a time.

CLINICAL TRIAL

WG patients can register at the Vasculitis Clinical Research Consortium
(VCRC) web page at http://www.rarediseasesnetwork.org/vcrc/ The VCRC is a project of the National Institutes of Health. The VCRC was formed in Jan. 2005 and has yet to engage in clinical trials regarding WG. In the future, they will be conducting long term "longitudinal" trials as well as gathering detailed information from patients to enable the researchers to develop better means of diagnosing and determining the level of WG activity.

As of May 3, 2005, there were 450 registrants representing each of the vasculitic conditions targeted. There are registrants from 47 US states and 15 countries. 293 (65%) are female; ages ranges from 80 yrs (median range 46-50 yrs).

GETTING DIAGNOSED

Unfortunately most physicians (including ENTs and rheumatologists) have never seen a case of WG so finding the right rheumatologist (or appropriate specialist) is vital.

It's best to be treated by a rheumatologist who has lots of experience treating autoimmune vasculitis. If you can't find such locally, try a major medical center or teaching hospital. The WGA consultants can consult (at no cost) with any physician treating WG, so your physician has more expertise available if needed at http://www.wgassociation.org/aboutwga/consultants.html

Given the seriousness of WG and the medications used to treat it, it is wise for WG patients to get a second opinion. Two excellent centers that specialize in the autoimmune vasculitides are:

Johns Hopkins Vasculitis Center
http://vasculitis.med.jhu.edu/
Cleveland Clinic Center for Vasculitis
http://www.clevelandclinic.org/arthritis/vasculitis/default.htm

Patients can ask their current physician for a referral for a second opinion at those Centers, or other places where the needed expertise can be found. Many health insurance packages cover second opinions

SOME THINGS TO KNOW

Before treatment for WG, patients should be tested for Alpha-1 Antitrypsin Deficiency (AATD) as it is found in about 8% of WG patients and may require Alpha1 replacement therapy to avoid liver and lung damage. If that hasn't been done, the patient should ask his/her physician about ordering the test.

As both lungs and kidneys can have significant damage without overt symptoms, it's necessary for WG patients to be closely monitored for changes in those organ functions. CT scans can pick up lung abnormalities that x-rays miss. MRIs are better for soft tissues than ct scans. The fifteen-slice MRI is preferable to one doing fewer slices.

Kidneys can fail rather quickly at times, so while WG is active, a frequent urinalysis including urine creatinine level is appropriate to make sure no kidney damage is occurring or to assess improvements in functions.

Weekly or bi-weekly blood and urine tests you may be receiving at the start of treatment should be frequent until your disease is in remission. It's generally recommended that a WG patient test their urine even after the disease is in remission to make sure that silent kidney damage isn't occurring. Inexpensive urine dipsticks are great for that,

You should know that WG can affect virtually any organ in the body. A significant percentage of WG patients have "silent" heart damage, so it's reasonable to have your heart checked for damage caused by WG.

SOME SUGGESTIONS

If you didn't already, I suggest you now start a journal, noting symptoms, medications, copies of lab and imaging test results, appointment schedules, questions for your physicians, and answers to those questions, etc. Over time this will be valuable to you as details
are easily forgotten. Write up a medical history that shows all major
illnesses and surgeries.

Always prepare for appointments by preparing a list of questions and concerns. Ask your physician for copies of his report after each appointment.

Every interaction with your physician(s) should have an advocate in attendance to take notes and ask questions not thought of earlier.
Physicians tend to spend more time and be more thorough when an advocate is present. Your advocate can be a family member or friend who helps you by discussions of treatment options and other aspects of your treatment.

TREATMENT

For rapid reduction of inflammation due to WG, very seriously ill WG patients may require plasmapheresis in one or more of a series of treatments. It's very important that a person be tested for Alpha1 Antitrypsin Deficiency (AATD) before receiving plasmapheresis. Some seriously ill WG patients have responded well to intravenous immunoglobulin G (IVIg).

Most WG patients are treated with Prednisone and Cytoxan (or other corticosteroids and immunosuppressives). Recently physicians have realized that vasculitis such as WG can cause blood clots so many patients are put on a permanent daily low dose 81 mg aspirin.

Usually a strong immunosuppressive such as Cytoxan is needed for some time. Prednisone alone rarely gets the disease into remission.
Alternative immunosuppressives may be effective. Sometimes only Cytoxan will be effective and must be used. Where major organs are threatened, Cytoxan is commonly required. If you are put on immunosuppressive meds, you'll need frequent blood tests to see that your white cell count hasn't dropped too low.

Unfortunately, used in the dosages and durations required, Cytoxan and alternative immunosuppressives may cause female infertility. Women may want to discuss ways of preserving fertility with their physician before starting treatment. Before starting Cytoxan, females can have eggs frozen, or a section of ovary tissue taken for later replacement or there may be other methods to guard against infertility. Male fertility may be affected, but may recover after Cytoxan is stopped.

Parents of children and also young adults may need to discuss possible infertility effects of medications used to treat WG with an endocrinologist.

There is a recent biological medication called Rituxan (Rituximab). It is expensive, but has proved effective where conventional therapies have failed. It probably doesn't affect fertility. There's a clinical trial, RAVE, using Rituxan to treat WG. Dr. Specks at Mayo Clinic, Rochester, Minnesota has treated some WG patients using Rituxan with good success.

THEY JUST DON'T UNDERSTAND

It's good if your family and friends are supportive. That makes the trip back to health so much easier. They may not understand you are ill because WG patients often don't appear ill. Patients on prednisone often gain considerable weight that can lead to awkward questions.

Persons on medications used to treat WG can be very moody or irritable.
It takes some time and learning on the part of friends and family to realize that you don't have complete control of your emotions while on WG medications.

Sleep aids sometimes help to get a good night's rest so one can not be completely worn down the next day.

WARNING IF ON PREDNISONE OR SIMILAR STEROID

If on Prednisone (or similar), then you probably should be on calcium supplement (1200-1500 mg/day), extra vitamin D (400-800 units/day), and an osteoporosis prevention biphosphonate such as Fosamax, Aldronate, or similar.

If you are not on those supplements but are taking Prednisone, ask your physician about the need for those. (Apparently, children should not be on a biphosphonate).

Prednisone can cause glaucoma, so periodic measurements of internal eye pressure are required to prevent that. Also, ask your physician about the use of Bactrim DS tablets for prevention of Pneumocystis pneumonia
(PCP) and because it may be helpful in preventing relapses. It is prescribed in dosages varying from 3 tablets per week up to two tablets per day.

MORE BUMPS IN THE ROAD

Some WG patients find they have little trouble with their sinuses. Some find they need to do nasal irrigation to keep things clear. If let go, sinus inflammation can do serious damage. Once the disease is in remission, surgery can correct the "saddle-nose deformity" if that occurs.

Most WG patients find they don't require pain control once the disease is under control, though if damage has been severe, then pain medications may be required.

An endoscopic exam by an ENT who knows what to look for can detect sub-glottal stenosis (narrowing of the trachea) or other throat abnormalities that might be involved in shortness of breath.

AND FINALLY

For over six years, I've compiled information on WG into an .html web page. It's now available at http://www.wegenersgranulomatosis.net/

Note again that I have no medical training, so anything said there or to this e-mail group may not be correct and may not be applicable to you.

Best wishes for effective treatment of your WG followed by remission of the disease.

Everything you wanted to know about my urinary tract but were afraid to ask...

2006-04-06T11:57:00.000+10:00

Had a scheduled visit with the Immunologist yesterday. My Creatinine is at normal level!! Yeehah!!! Go kidney's go!!!

He also told me that the prostate-related issues that have been dogging me are probably due to scarring left from the catheter that I had when I was in hospital. It was in for 5 weeks so I guess its no surprise that there's scarring of some sort. He told me there is a procedure that would remove scar tissue but it would likey come back anyway. It is a procedure using a small tool that is threaded through the urethra and scrapes away the scarring.

I deliberated for about 1/100th of a second before deciding I didn't want any surgery :-)

Apart from that, my blood pressure is up a bit as is my ANCA (from 8 to 12). The ANCA is nothing to worry about but he has changed my blood pressure medication to something that includes a diuretic (along with the diuretic that I'm alredy taking!).

That's it for now! Stay groovy!

Now that's just weird...

2006-03-29T08:54:00.000+11:00

Ok, I got my results back from my GP about my Pelvic Ultrasound (I won't bother you with a scanned image of my prostate!).

My prostate is completely normal. That's good news but the question still remains as to why it takes so long to take a tinkle :-) Anyway, nothing appears to be wrong so I'm not going to worry about it.

Ow! My Prostate!

2006-03-21T20:27:00.000+11:00

Had a pelvic ultrasound today so my GP can get a better look at my enlarged prostate. Interesting stuff! :-) I also had a scan back in March 2003 about a week before I originally went to hospital for WG. May be WG related - may be not. Will hopefully find out more on Friday when the GP gets the results.

Chemotherapy, infertility, Ramipril, Doctor's visits and other stuff

2006-02-10T14:16:00.000+11:00

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

Wegener's Granulomatosis FAQ

2005-10-24T12:44:00.000+10:00

Click here for a Frequently Asked Questions (FAQ) list about Wegener's Granulomatosis that may prove helpful.

Edit, 4 November: Ooops!!! I broke the link! Fixed now!

Long Time No Post :-)

2005-10-08T15:07:00.000+10:00

Well it has certainly been a while since I posted anything here.

Life has been good to me in the mean time. My health continues to improve and I appear to be on the brink of remission. How long that 'brink' is though just depends on...well...I don't know!

Both my Renal doc and my Immunologist are very pleased with my progress as is my cardiologist. My creatinine level stays pretty much around the 140 mark so that appears to be normal for me. Other blood measurements fluctuate slightly but are generally on the way to normal.

My wife and I bought a house in August as well. A big step certainly but one we're very happy with. Now, all we have to do is pay for the sucker!

I have had a fair few emails from people that have stumbled upon my site looking for information. I'm always jazzed to hear from you so don't hesitate to send me an email if you want any Wegener's information or just want to chat a bit. One can never have too many pen pals! There's a bunch of info on this site as well. I might put up some links on the right of the page to help you out a bit.

Work is getting busier by the day but I have a much better attitide towards it now. I am but one man and can only do so much in a day without exploding :-) One of the things a Wegener's sufferer needs to master is stress management. Stress can cause alot of complications including 'flares' where the disease that was dormant can come back. It's an ongoing effort for sure and I am by no means a master as my long-suffering wife will attest!

Right-o. I'd better get on with it. I'll see you later.

Take care!

Andrew

Burma Children

2005-07-21T15:06:00.000+10:00

Andrew's tip for today: visit this site and contribute to changing the lives of these children. www.burmachildren.org raises money to provide medical care for children affected by the conflict in Burma.

Visit www.burmachildren.org please!

Nephrologist Visit - 8 June

2005-06-09T15:05:00.000+10:00

I'm having issues with lethargy and extreme tiredness over the last few weeks. It turns out that the blood tests taken for this visit to the Nephro. tells him that I'm anaemic. He's also now testing my B12 and Folate levels.

He's going to get the tests back some time this week and will call me to let me know if there's anything to be done. If these tests come back ok, he's going to reduce the amount of Immuran and Bactrim that I take to see if that has any effect.

Apart from the above, all else if going well. I'm in great shape!!

Latest Nephrologist Visit - 23 April

2005-04-25T15:04:00.000+10:00

I see this guy every two or three months for checkups on my kidneys. Once again, although my creatinine is above normal, he's happy with my progress. What's more, my blood pressure is normal and stable as well. A good report!

How did I get here? There are so many people with this disease that can't even get out of bed. Life is a precious thing indeed - as precious as your health.

Immunologist Visit - 20 April 2005

2005-04-21T15:00:00.000+10:00

Well thankfully my ANCA level went down (from 29 to 12) so I don't have to have chemo again.

Creatinine is still high at 139 but that looks like about as low as it's ever going to go anyway so I'm not going to fret over it (and neither is my immunologist).

Overall he's very happy with how I'm going and I don't need to see him again for a couple of months.

These visits remind me how lucky I am to be living in a country where I can be continually and expertly monitored like this. There are thousands upon thousands of others who don't get the same kind of treatment.

Wegener's Granulomatosis Treatment and Infertility

2005-03-31T12:40:00.000+10:00

My last trip to the doctor resutled in some depressing news. It seems that the Chemotherapy treatment that saved my life has made me infertile. You see, the treatment also kills the cells that make sperm. With them being dead, I don't have any hope of having children. Still, when all is said and done, I'd rather be sitting here typing this blog than dead. If I have to be infertile as a price for life then so be it - small price to pay.

Still lovin' life! :-)

Installing Love

2005-03-30T12:41:00.000+10:00

Tech Support: Yes, ... how can I help you?

Customer: Well, after much consideration, I've decided to install Love.
Can you guide me though the process?

Tech Support: Yes. I can help you. Are you ready to proceed?

Customer: Well, I'm not very technical, but I think I'm ready. What do I
do first?

Tech Support: The first step is to open your Heart. Have you located
your Heart?

Customer: Yes, but there are several other programs running now. Is it
okay to install Love while they are running?

Tech Support: What programs are running ?

Customer: Let's see, I have Past Hurt, Low Self-Esteem, Grudge and
Resentment running right now.

Tech Support: No problem, Love will gradually erase Past Hurt from your
current operating system. It may remain in your permanent memory but it
will no longer disrupt other programs. Love will eventually override Low
Self-Esteem with a module of its own called High Self-Esteem. However,
you have to completely turn off Grudge and Resentment. Those programs
prevent Love from being properly installed. Can you turn those off ?

Customer: I don't know how to turn them off. Can you tell me how?

Tech Support: With pleasure. Go to your start menu and invoke Forgiveness. Do this as many times as necessary until Grudge and Resentment have been
completely erased. Customer: Okay, done! Love has started installing
itself. Is that normal?

Tech Support: Yes, but remember that you have only the base program. You
need to begin connecting to other Hearts in order to get the upgrades.

Customer: Oops! I have an error message already. It says, "Error -
Program not run on external components ." What should I do? Tech
Support: Don't worry. It means that the Love program is set up to run on
Internal Hearts, but has not yet been run on your Heart. In
non-technical terms, it simply means you have to Love yourself before
you can Love others.

Customer: So, what should I do?

Tech Support: Pull down Self-Acceptance; then click on the following
files: Forgive-Self; Realize Your Worth; and Acknowledge your
Limitations.

Customer: Okay, done.

Tech Support: Now, copy them to the "My Heart" directory. The system
will overwrite any conflicting files and begin patching faulty
programming. Also, you need to delete Verbose Self-Criticism from all
directories and empty your Recycle Bin to make sure it is completely
gone and never comes back.

Customer: Got it. Hey! My heart is filling up with new files. Smile is
playing on my monitor and Peace and Contentment are copying themselves
all over My Heart. Is this normal?

Tech Support: Sometimes. For others it takes awhile, but eventually
everything gets it at the proper time. So Love is installed and
running. One more thing before we hang up. Love is Freeware. Be sure to
give it and its various modules to everyone you meet. They will in turn
share it with others and return some cool modules back to you.

Customer: Thank you, God.

Wegener's Granulomatosis Fact Sheet

2005-03-03T16:59:00.000+11:00

Here's a great little fact sheet about Wegener's Granulomatosis that you may find interesting:

http://www.niaid.nih.gov/factsheets/wegeners.htm

Bone Scan - 2 March 2005

2005-03-03T16:58:00.000+11:00

Had a bone scan recently which indicated that my bone density is abnormal. I'm being treated with Fosamax, Caltrate so hopefully by the time I have my next scan in a couple of years, things will start to look better!

Problems with bone density are a common side-effect from the treatment of Wegener's. This is because treatment for Wegener's almost always involves long-term use of cortozone in the form of Prednisolone/Prednisone. The chemo treatments can also have an impact as well.