New Member Intro

[Erin2014]

Hi everyone,

My name is Erin, and I was diagnosed in October 2014 at age 55 (do you celebrate your diagnosis anniversary - the new normal??)

From what I've read so far, my story is similar to many others; never sick, an avid cyclist, tennis player and active mother of 3 and working full-time, and then boom. Sick as a dog, after several round of antibiotics for different illnesses (ear infection, double pneumonia, sinus infection, cough...) no change. Returned to my general physician, who was a fairly new grad and didn't know me well, and explained that there was something seriously wrong with me. She listen and sent me directly to a lab for blood work, urinalysis and chest x-ray. The same day I was admitted to the hospital as my anemia was so severe that I needed a blood transfusion. 3 weeks later I had been tested for everything (in every orifice!!) and finally had a positive ANCA marker and later had a kidney biopsy to confirm the diagnosis of Wegener's. I had kidney, lung, respiratory tract and hearing involvement. I also had neuropathy in my feet and cramping in my fingers and lower legs. I was put on high doses of Prednisone and Cyclophosphamide along with Nasonex, Symbacort, Septra, Amlodepine, etc.

3 months after diagnosis, I stopped Cyclophosphamide and started Azathioprine and started reducing my dose of Prednisone.

11 months since my diagnosis, I am no longer on Prednisone and stopped all medication for my respiratory tract (Symbacort, Nasonex). I continue to take Azathioprine, and I now take CoverSyl for BP and to protect my kidneys. My neuropathy has improved significantly and my cramping of fingers and lower legs is resolved (taking extra calcium and magnesium). I have some permanent hearing loss in one ear but since treatment my hearing is now stable. My sinus issues have also taken a back seat. My major problems seem to be kidney function, anemia and I'm also prone to respiratory infections. I'm also having dental issues and joint pain. I have good days and bad like I'm sure you all do.

Luckily, Canada has great health care and I have good health benefits at work and a supportive boss. I'm doing a gradual return to work but can't seem to work more that three days per week due to fatigue and the situation with my kidney function.

I've gained a lot of weight (20 kg) due to the Prednisone and don't seem to have enough energy to get back on my bike. Walking is what I do but would like to do more!!!

It's sometimes very hard to accept the life change this disease has caused! My children (13, 14 and 19) and husband (who also has a kidney disease) are all getting use to the new normal. As I wrap my head around this disease I worry about what the future holds and whether I will be able to enjoy retirement, grandchildren, etc.

I'm really glad I found this forum and look forward to reading and learning more about Wegener's.

[Pete]

Hi Erin,

Welcome to the forum. It seems like you have competent care. Given the number of organs involved, it seems you're making slow, but steady, progress. It took me about 18 months to consistently feel well and resume most pre-wegs activities.

The weight loss was pretty tough. I made some progress (about .25 kg/month) with portion control. I lost about 5 kg in two months once my wife and I started eating healthier. We eat quite a bit of fresh produce, almost no processed foods, and cut out wheat and corn. Snacks now consist of nuts (almonds and cashews) and fresh fruit. We cheat a bit when we eat out, but there are several restaurants where we can eat pretty healthily.

Physically, I'm pretty close to where I was pre-wegs. I walk 3 miles (5 km) 4-5 times a week. I walk the occasional 9 holes of golf, do my own landscaping, and chase my grandkids around once or twice a week. Life is good.

Some advice I got from the doc who diagnosed me: Take your meds as directed and live your life as fully as you can. I'll add: Be actively involved in your care, make sure your docs fully explain their treatments, expected outcomes, and possible side effects. Learn as much as you can about the disease and use your knowledge to your advantage.

Good luck and keep us posted on your progress!

[woz]

Hi Erin, happy anniversary, I hope you spoil yourself sometime this month, yeah the weight gain is not the best, but with out pred where would we all be??????
I'm a bit like Pete, I eat quite healthy these days, nuts, seeds, fruit, tin fish, yogurt, every one at work always asks me when am I going to eat real food.

Regards woz....

[drz]

Hi everyone,

My name is Erin, and I was diagnosed in October 2014 at age 55 (do you celebrate your diagnosis anniversary - the new normal??)

I'm really glad I found this forum and look forward to reading and learning more about Wegener's.

Many of us celebrate that we are still around to enjoy our life however it may be now. Some of our best members can't do that anymore so we celebrate our life cause they can't.

Welcome to our special group. Sorry you had to find us but glad you did.

Your symptoms are fairly typical of many of us and it sounds like you got good treatment and had good results.

PS My kidney function and lung function slowly improved after a few years but did not recover to normal limits. My hearing loss was permanent but a BAHA and regular hearing aid really help with that. My neuropathy continues to get worse since i also have diabetes and the neuropathy began long before the Wegs as did the kidney damage due to diabetes. I had no luck with weight loss caused from the PREGNANTZONE meds as i am still on a maintenance dosage of 5 mg but my weight gain has been minimal since my release from the rehab help at the nursing home five years ago. Insulin also causes weight gain and I take 160 units every day so gaining only a few pounds is consider pretty good by my doctors.

You should have better luck with any weight loss effort since you are off the pred and younger with a more active life style.

How are you adjusting or handling acceptance of your "new normal"? That is often the big issue after you know you are going to survive. Your husband should understand your lack of energy since he also has kidney damage and most likely shares a low energy level too.

[annekat]

Welcome, Erin! I'm glad you found us. This is a great group of people who have saved my sanity and kept me from feeling alone, since my diagnosis. I have the same involvements as you do except for the kidney stuff. It sounds like you are doing well. It's great that you were only on CTX for 3 months, have gotten off the prednisone, and are continuing to keep things under control with the AZA and other meds. It has taken many of us a lot longer to see that kind of improvement and get off the meds that we hate the most (CTX and pred, in my case. Now on MTX and lower pred doses.) I hope you continue to be active on the forum and let us know how things are going!

[Erin2014]

Thank you all for your kinds words of support and great advice on diet and exercise. I really needed a kick in the butt so THANKS!

I mentioned to a few people at work that I was going to celebrate my "diagnosis day" and they looked at me like I was crazy! Glad to hear some of you feel that this is an important milestone. After all, if I hadn't been diagnosed so quickly I would have been in serious trouble. I think I will celebrate with a new pair of shoes and a hike in the beautiful Gatineau hills (not in the new shoes though)! If you were in Ottawa, I would invite you to join me...

As for how I'm coping with the "new normal" - my mind is still pre-Weg (I think I can do everything I did before) but my body is in the "new normal" and constantly reminds me of my limitations. I am slowly learning how to manage my expectations and also enjoying what I can do.

Love this supportive group!

Erin

[drz]

It can take awhile to get over those delusions of adequacy, but your body will generally remind you of reality, and sometimes very forcefully.

[mishb]

Hi Erin and welcome to the forum.

Everyone above, have already said how great this place is, so I will just say, Happy Anniversary/Survival day

[Birdie]

Happy Anniversary/Survival day

We have:

Mothers day
Fathers day
Thanksgiving day
Labor day
Veterans day
Independence day
Memorial day
We even have National Kazoo day

kazoo.jpg

How come no Survival day?