Keep a diary

[Carol]

In retrospect I wish I had kept a diary of what was happening, the dates and the drugs etc I was given. If you are newly diagnosed then I suggest you do this - because you are so sick your memory is not so good so it's good if it's written down. I suggest that if you have a partner then it is useful for them to be at appointments to begin with - you often hear different things from the Doc and it helps your partner to understand it all.

[andrew]

Agreed. That would have been a great thing for me to have done. I do have a little notebook that I had in hospital. I wrote down all my daily test results (as soon as I could write with any legibility) and all my 'ins and outs' (fluids) for the nurse's records. Pretty boring but it's interesting looking back. For example, my Creatinine level now is 116. When I started taking notes it was 360 and when I went into hospital it was 600.

[Sangye]

One thing I found very useful was bringing a small digital voice recorder to the hospital and to doctor visits when I was too worn out to remember what was said.

When I was first on prednisone, my hands shook so bad I couldn't write for months. And the first few times in the hospital, my mind was racing with things to do (eg. ask the doctor, tell my dogsitter, calls to make). Having to keep it all in my head was exhausting.

Sony makes a good one for about 35USD. It lets you push one button to record. And, it has "files." Whenever I thought of another question for my pulmonologist, I'd just click on that file, and hit Record. It's also great for making a shopping list. For a long time I never left home without it!

[rkm001]

Agreed. That would have been a great thing for me to have done. I do have a little notebook that I had in hospital. I wrote down all my daily test results (as soon as I could write with any legibility) and all my 'ins and outs' (fluids) for the nurse's records. Pretty boring but it's interesting looking back. For example, my Creatinine level now is 116. When I started taking notes it was 360 and when I went into hospital it was 600.

My Mothers creatinine level was at 15.8. I only pray there is hope for recovery.

[Doug]

Wow! What care has she had since diagnosis? Is she in hospital? Be prepared for lots of questions! We will seem nosey, but we have years of experience with this disease among us and lots of differences in treatment we've had. Bring us up to speed on what treatment your mother's had up to this point. I hope you've had a chance by now to read through the forum as it will give you a pretty good sense of how broad the question of treatment for this disease is, for example, and how we- family and weggie alike- have to come to grips with the fact that you can get better with proper treatment, but there is no cure. You can go into remission, but there is no guarantee you won't have a flare later down the road. While that sounds grim, I'd say we weggies on this forum have pretty good attitudes about our disease. Also, I hope we can help you formulate questions for you and your mother to pose to her doctors. We are in this together.

[rkm001]

I admitted my Mother on 3/26/09 to the hospital. There were several doctors invovled. She had 3 pints of blood given on the next day and several routine ultrasounds, cat scans, blood tests, etc... They informed us the blood tests could take up to a week for results. They started dialysis on Saturday 3/29. Finally on Thursday of next week they recieved the last blood test result and determined she had Wegeners. I was relieved because now we knew, but had hoped for some encouraging physical recovery. She left the hospital and went to skilled care and is still there. Dialysis 3 days a week, but her appetite is nothing and she just wants to be in bed. I have requested they take a look at her blood count again for the possibility of a another blood transfusion. They have been doing blood tests every week at dialysis.
Back to the beginning, she was diagnosed with Rheumatoid arthritis in July of 2007. Was taking Methotrexate until about 10/2008 then her symptoms went away so we stopped the meds. Late november to early December she went to the doctor for a ear infection and sinusitis. The doctor said it was the worst ear infection he had ever seen in an adult. We were in and out of the doctors office for this, taking several rounds of antibiotics, until March 2009. Then finally the urgent care clinic decided to draw blood.

I would appreciate maybe a timeline for the process after starting the drugs, prednisone, cytoxan and batrim. She just does not seem any better.

[Doug]

Where there is kidney involvement and dialysis after slow diagnosis of her true condition (not uncommon since WG mimics several other conditions, based on syptoms that develop), it sounds like your mother has the severe form of WG. The kidney involvement and late diagnosis complicate recovery, though, if you check Andrew's creatinine levels, above, it sounds like the kidney involvement is... I feel like I'm about to write things just to bouy your spirit, not tell you my own experience. The creatinine level is high, but, as long as it shows a trend down, it would indicate improved kidney function. That's where the notebook or recorder (great idea!) help. Each person comes back at a different rate. The transfusions suggest anaemia, or at least that is why I got them at different points. The immosuppressent drugs can bring that on. I also was on Procrit shots, once a week for about 1-1/2 years. They are to stimulate production of blood cells in the bone marrow. Has your mother's doctors indicate a reason for the transfusions and what they were doing for the root cause of her apparent anaemia? Don't hesitate to quiz her doctors on treatments and reasons for treatments, not to mention her responses to them, if she is unable to do this on her own or needs you for backup. Depending on where you live, privacy laws may come into effect. In the USA, for example, you may not be able to learn about her treatment specifics if you aren't her guardian or have her specific authorization to have that information. As her daughter, that may not come into play- I don't actually remember. It's been awhile since I was in hospital and that was a concern. (P.S. Andrew- your numbers sound off the chart to me. Does anyone know if maybe there are two units of measure in use, depending on where you live? )