What kind of adjustment did you attain after diagnosis and initial treatment?

[drz]

I have spent the the last three months in inpatient settings, rehab hospitals, or nursing home rehab programs.
I have learned to walk three times so far and can again walk a few feet without assistance although my gait and balance is very unsteady so i generally use a cane or wheel chair when i have to go more than a few feet.

i dream of being more independent again and living outside of an in-patient facility but am wondering if this is realistic. I am in a very nice facility now and know that if I moved to a house or apartment setting that every thing in my daily and medical care routine will take three times more work and energy to carry out. i did try it once after one of my rehab hospital discharges but only last three days before going back to in patient care.
Here i can get my blood drawn in my room, walk twenty feet for my meals, or get pushed down the hall 100 feet to emergency room or hospital when I need transfusion, IV antibiotic or nebulizer treatment which is very convenient. Nurses check my BG hourly at night and as needed during day, contact my doctors, schedule appointments and staff transport me to local medical appointments when i need to leave facility.

I wonder if I can do all these arrangement myself or if it worth the effort. Yet, I dream about being able to travel again, go fishing, go on bird watching trips, go to photography classes and workshops, attend concerts and plays if I can find devices that allow me to hear enough, go visit family and friends, and do things outside of here like I used to do before WG. You know, like having a regular life again. Maybe even go dancing again?

I know some other people with WG who are able to resume a more normal life after treatment but they say it took a year or so to regain some normal life style because recovering is slow and it takes a while to regain strength and endurance, They also tell me that you can't expect to recover 100 % because the disease, damage to kidneys, lungs, loss of hearing, are going to require considerable accommodation to adjust to fatigue, lack of energy, and frequent increased medical treatment and monitoring. Trips to Antarctica or Greenland or Machu Piccu are NOT likely to happen in near future or maybe ever after WG unless I am lucky enough to get a very good long term remssion.

Hearing success stories in dealing with WG is encouraging but I also want to have some realistic expectations for my future.

[julia]

It has been just over 1 year since I was diagnosed.

My lowest points were a few months into taking the meds. If I look at my progress since then I am pleased.
At that time I could not have imagined feeling as well as I do.

If I compare myself to how I was before the disease I am sad. That is why I do not compare myself to how I was before the disease.

[Jack]

I was diagnosed at age 30 and for the first 5 years I had a fairly rocky journey with multiple relapses and the loss of my kidneys. However, I eventually gained a fairly stable remission and had a transplant. After that, I had many years of near normal life with just the odd infection or other minor problem.

[JanW]

drz: I think that you will find a wide range of experiences of people here with WG. Also, this is a self selected group in so many ways (like to communication via writing, internet access, etc., etc.) and I'm almost certain that for the most part people who are most active in support groups are also the ones who are most in need of/like to provide support, therefore some of them may be among the sickest among us. If WG is currently allowing one to lead a normal life that is what one probably does, rather than spend time on a forum to speak with people grappling with active disease.

My rheumy has seen everything from people with WG so mild that he has never had to treat it medically (yet), to cases so severe that the patient died. Many here have experienced remissions, and some never have. Stats seem to indicate that about 50 percent experience remission and some of them never have a second flare. I believe most of us here live at home, a good many work, some are raising young children. Some have annoying problems (like me and my ankle) some have debilitating problems.

Both of my primary docs (rheumy and ENT) says that the biggest problem with this disease is the randomness with which serious illness may strike. As my ENT says, "one day you're doing fine -- next day your kidneys have completely stopped working." Vigilance is the watchword.

[Sangye]

drz-- It's all over the map. Since I was dx'ed in 2006 I've been unable to work at all and still can't walk a grocery store. I've had tons of complications right from the start. I also had very poor care for the first 2.5 years, until I started at JHU.

Having said that, I've been surprised by how much my body is capable of bouncing back now that we're finally getting the Wegs under control. A few weeks ago when the pred taper was going well, I was truly shocked at how good I felt. The body has an amazing capacity to heal and adapt.

As far as your gait and balance, I highly recommend aquatic therapy. I was falling all the time and had extremely poor balance and strength. I was surprised at how much I could move in the water-- stretching, standing, etc.... I could do none of that on land and still can't. If my docs had told me about it sooner I never would have lost so much strength.

In terms of becoming a longer-term resident of an inpatient facility, it depends. I don't know your circumstances but in general I always think it's better to set the bar higher. You can take advantage of the time you're in there to set up the outside support you need. It'll still be a difficult transition. I've been hospitalized over 20 times in 4 years-- never longer than 8 days-- but the transition to home is still always tough. I'm the complete opposite of a "do it for me" kind of person, but I'm surprised at how comfortable I get in a hospital when it comes to things like meals being prepared.

[Jack]

I have recently spent a couple of months in hospital and a care home and it does you no good at all unless there is no alternative. I was always pushing to do as much for myself as possible and yet I still had problems when I returned home and found it a big step even though I have a family who help me.

I think the secret is to always be trying to reach the next stage on, but make sure the goals you set yourself are achievable. My first aim was to be able to manage stairs and I can now do this. My next target is to move on from using crutches to using only sticks. I can't manage it yet, but I'm putting more weight on my feet and I'll make it at some time.

[Sangye]

Glad to see you're progressing well, Jack. I'm impressed.

[Jack]

Thanks Sangye, but it is taking much longer than I would like. I'm going to have another go with some stronger pain killers. This time I will start on a low dose and try to build up to the full prescription. Everyone else seems to take Tramadol without problems and I can usually tolerate almost anything.

[Sangye]

I bet it feels like forever. Considering that you had prior severe muscle atrophy and continuing malnourishment, it's amazing progress. I hope Tramadol works for you. I can't take any of that stuff!

[Doug]

drz- I think you have a realistic sense of what's happening to your body and how long you may go before you stabilize at a "new normal". I think the word they call us by shouldn't be "patients", but "impatients"!

In my case, I was back to work in three long months, but I was so weak, still, my employer arranged for me to work downstairs in an office accessable to me at that time (I used a cane, and barely walked 100m or so/ 340-350 feet or so before I was done for the day!), and I wasn't able to fully do my job, with limitations, for roughly eight more months. There just are too many variable in each person's experience with WG, as others note above, to predict when you speciufically will be able to participate in things you enjoy.

I notice one activity, bird watching, in your list. In Nebraska, where distances between good spots for specific species are fairly spread out, we do a strange sort of birding by car.Drive to the spot, park where we might have a few short feet to go to the habitat of interest, then let the birds come to us! There's one stretch of countrry road between Nebraska Highway 2 and Crescent Lake National Wildlife Refuge that has so many different habitats abutting it, that a slow drive down this road, never leaving the car, you might spot 75 or so species of birds, birds largely unalarmed by you in a car "blind". I didn't realize how odd this form of birding is until a friend from California pointed out she'd never birded this way until she came to Nebraska! The point: as a weggie, you can adapt to new ways of doing things, and well may have to. I use a walking stick in the field. Call it a cane, because that's the function of it. Plus, out here in rattlesnake territory, erm, ick, but that's always an alternative use for it.