New Challenges! (and that's just using the computer!)

[Jules]

Being a complete technophobe . . . wouldn't know how to even go about getting on Facebook. . . you'll have to bear with me. . . so, deep breath and here we go! Following a bad sinus episode last summer, in October I was admitted to hospital with suspected meningitis. . . after six weeks as an in-patient and to cut a very long story short. . . I was finally diagnosed with WG at the beginning of January this year, but just to make life even more interesting for myself (I'm always up for a challenge!!) a kidney biopsy also threw up Anti-GBM disease (Goodpastures Disease). The combination of the two has my consultants really quite interested as so rare - much plasma exchange has taken place and I was wondering if any other fellow sufferers have experienced the same as most of my questions remain unanswered due to the lack of clinical studies. Jules

[Jack]

Hi Jules, sorry you had to come to join us, but you will find this place a mine of information, support and understanding since everyone has been there!
The first obvious question to ask is about who is in charge of your treatment. You really need a specialist in vasculitis and preferably one with a lot of experience with the treatment of Wegener's. The bells immediately begin to sound for me when you say that you have been diagnosed as having two rare diseases. This is often the case with people when first diagnosed, but it usually turns out that the second disease is in fact just another aspect of Wegener's. It can present in so many different forms and mimic so many other conditions that it is easy to mistake. Wegener's can of course affect the kidneys.

It is also possible that you are incredibly unlucky!

Let us know how you are and what treatments you are on and feel free to ask any question at any time. There is usually someone with some experience to share.

[Jules]

Thanks for coming back Jack - it's really reassuring to find a forum like this to use at the start of this 'Incredible Journey'.

Having spent time in three different hospitals (I was on holiday when it all kicked off!) I have now been 'claimed' by Kings College Hospital in London and as the WG has affected the lungs and kidneys am three weeks into treatment with Cyclophosphamide, Septrin, Steroids, Omeprazole amongst others. The plasma exchange was carried out as the 'Goodpastures' was preventing the other 'goodies' above from doing their job properly.

I have always been a 'glass half full' type of person and live life at a hundred miles an hour, adrenaline junkie, working full time with two teenage sons . . . . so if anything the most I feel is frustrated that I can't keep up with my own lifestyle at the moment. This I am determined to rectify in time though!!!!

[Daggar]

Hey Jules,

Sounds like you've got your hands full... wish you all the best!

Your prelude to diagnosis is similar to my daughter Holly's and I came across a site that may be of help when trying to find out about auto-immune diseases and kidney disorders. The way that WG and Goodpasture hits the kidneys are so similar it is scary but it sounds like there are differences in the antibodies that do the damage. Here's the link... hope it helps you "confirm" your diagnosis as Jack mentioned.

Goodpasture Syndrome: eMedicine Pediatrics: General Medicine

[drz]

Thanks for coming back Jack - it's really reassuring to find a forum like this to use at the start of this 'Incredible Journey'.

Having spent time in three different hospitals (I was on holiday when it all kicked off!) I have now been 'claimed' by Kings College Hospital in London and as the WG has affected the lungs and kidneys am three weeks into treatment with Cyclophosphamide, Septrin, Steroids, Omeprazole amongst others. The plasma exchange was carried out as the 'Goodpastures' was preventing the other 'goodies' above from doing their job properly.

I have always been a 'glass half full' type of person and live life at a hundred miles an hour, adrenaline junkie, working full time with two teenage sons . . . . so if anything the most I feel is frustrated that I can't keep up with my own lifestyle at the moment. This I am determined to rectify in time though!!!!

Adjusting to the change in life style brought on by treatment regime and losses from the illness can be very stressful and frustrating. It is OK to vent these feelings here since everyone has shared them at times. Good luck in getting things sorted out and treated correctly.

[Jules]

Great link Daggar - really informative - my care at Kings College is amazing, but there's only so much you take in when face to face with your consultant - so many thanks! How's Holly doing now?

[Sangye]

Hi Jules, welcome to the group. Yes, Goodpasture's and Wegs can look alike but the biopsy can tell them apart very well. I'm sorry you have both. I hope you get the excellent care you deserve.

[Daggar]

Yes Jules, I must get that "glazed" over look in my face at times when talking to the team of doctors Holly has. I'm stuck on something they said 5 minutes ago that sounded "very" serious to me and want to hear more but they are trying to give me the "condensed" version.

I have taken some advice from people on this site (and others) to carry my binder with questions/concerns to "all" meetings. It works well most of the time but there are times they come up with something "new" to derail my "train of thought"! So that has become my symptom of being a Weggie parent.... a glazed over look with rapid aging!! lol

Holly was checked over by an ophthamologist yesterday and everything is normal with her eyes - that's a relief! Her kidneys are continuing to stumble along at the same rate so we're hoping that doesn't worsen. They are ordering new blood work next week to try and find out why her liver enzymes have increased - not sure if its the meds or an infection at this point.

I was asking her team about the chances of a WG - Goodpastures combo and although "rare" it does happen. There are complications with treating both simultaneously but it has been done. Keep your chin up!!

What is your current serum-creatinine level and what was it when you were admitted?

[Jules]

Hey Daggar, same here . . had to buy a bigger handbag to carry the notebook that goes everywhere with me!!! (My husband reckons that was just my very lame excuse for a new handbag!!!!). My Consultant and I toss a coin to see who goes first at each appointment!

Glad to hear Holly's eyes ok . . . we take every positive we can get! Hope the blood work goes well.

My creatinine level went from 90 to 190 over a two week period. . . that has come down slightly, but the 10 sessions of plasma exchange for the Goodpastures has temporarily falsified test results, so waiting for things to settle down and more bloods next week. The Cyclophoshamide is knocking out the white blood cells a bit too much, so we are now playing around with dosage. . . . just wish they'd get rid of the steriods so a good night's sleep can be had. . . . last one was 23rd October!!!

How is Holly coping mentally with diagnosis. . .it's an awfully big thing to deal with so young!?

[Daggar]

Be careful -- That creatinine number has a way of taking over your life!

Holly was admitted back in November at 145 and it dropped to 130 upon her release 3 weeks later. She was treated with iv cyclo and metylpred while hospitalized. Her creatinine spiked at 195 a week after her release while awaiting the decision to use iv cyclo or oral so they had me start her on the oral right away. The numbers have dropped since then to hang around 110 and they hope it may drop some more with the extra iv metylpred treatments each month until June. Although the creatinine level is a good indicator for the docs you should use the feeling well marker for yourself .... its hard but may help you in the long run. Also remember that the drugs themselves can cause an elevation at times.

As for Holly, she has shocked us all including the doctors and nurses who have treated her. I don't know where she gets the "mental toughness" or is it "innocence"?? Hopefully it continues.

BTW - I'm A MESS!!! lol