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.

[pberggren1]

drz:

I was able to work a little after diagnosis and getting out of the hospital. It was about 2 months after getting out of the hospital that I returned to work but it was only part time. About 20 to 30 hours per week. I could leave early if I was not feeling well and could call in sick any time. I had that job for about 6 months and then quit because it was getting to be too much. I couldn't handle it physically any more.

I had my first flare in the summer/fall of 2004.

I was able to work again in 2007 almost full time for about 5 months.

I worked part time as a security guard from the fall of 2008 to early 2010. I had to quit this also because of sinus and lung infection.

So work is really non existent for me and most of us on the forum. I have never been able to find work that is non stressful and not physically or mentally taxing that would be considered gainful.

[Sean48]

thanks for the update JANW. This is the kind of info I am looking for. Very encouraging. Your right. Alot of people in the forum and having issues and I appreciate that. I hope you all feel better soon. Being new with WG I am still quite lost but learning more every day.

[drz]

I think the term impatient describes me well although I have worked very hard on becoming much more accepting of things I can't control, such as WG symptoms and reactions to its treatment. I have got accustomed to having frequent changes and new issues in my treatment every few days.

Thank everyone for sharing info on themselves and helping me work toward a more realistic expectation for myseelf and adjustment in near future. This forum is only place I have found people whose WG symptoms equal or exceed my own since i had a more serious case than others I know who also have or had WG disease. In that way I agree we are a somewhat skewed sample with more complications than some who are lucky to have rather mild forms of WG and easier treatment regimes.

[Jack]

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.
I've been taking Tramadol slow release at half the recommended dose for four days now and I think I'm walking a bit better with little in the way of side effects. I'll give it a full week and then try going up to the standard dose. In the meantime, I've asked for some sticks so that I can practice moving on from the crutches that I'm still having to use at present.

[Lola]

You go, Jack!

[elephant]

Great to hear Jack. Even my children like to use sticks!

[Sangye]

Yay, Jack! I knew you'd find the right combo. :)

[drz]

I've been taking Tramadol slow release at half the recommended dose for four days now and I think I'm walking a bit better with little in the way of side effects. I'll give it a full week and then try going up to the standard dose. In the meantime, I've asked for some sticks so that I can practice moving on from the crutches that I'm still having to use at present.

Some one sent me an email recommending walking sticks or staffs since they read they are better than cane for keeping you in better posture when walking. she said they worked much better than walker too when walking her dog.

[pberggren1]

That makes sense to me drz.

[DEE]

Im using a walking stick at the moment Go for it Jack but please be careful DEEx :)