Hi, I'm new here. Here's My Story.

[KtheC]

I’m new to the forum and here is my story with Wegener’s

In July of 2008 my wife and I were preparing for guests that were coming from Germany to stay with us. One of the chores was detailing the car. This was done by myself in what was 90° plus. This resulted in heat exhaustion. I had been on Singular and Allegra for allergy issues and these medicines can leave you prone to things.
Anyway it took 2 days to recover from this. Once I did my guests arrived and we started our vacation together. At this time my urine started to darken. I thought this was attributed to the dolculax that I was taking. This was done as well when my guests were here. At one point I started to have a pain on my left side, I attributed this to something I may have done in the gym, since I got there at least 3 times a week. I also started to gain weight (which ended being fluid retention). Over the next couple of days this pain moved from the left to right side. I also do kettle bell exercises on mornings that I don’t go to the gym. These were getting increasingly more difficult, so they were stopped. I also stopped going to the gym as it was getting my difficult. I had no idea what was happening. Gradually my appetite started to decrease.

Just after my guest departed, we got the house together and I returned to work for 2 days before the bottom started to fall out. I had to have some one drive me home from work. At this point my back pain was extremely uncomfortable. I had already been in contact with my doctor and he said that my creatin was around 3 and to stop taking any medicine for a few days and then take another blood and bun test. At this point breathing was getting more difficult and my muscles started aching and my appetite was almost non-exisitant.

The next blood test came back and my doctor called me on a Sunday night and said that I should get to the hospital, my creatin was now at 11.

Once there the procession of doctors was endless. It took 2 days but one doctor said that they thought they new what I had, Wegener’s, but couldn’t be sure until the biopsy was completed. She also said that they couldn’t wait for the biopsy, otherwise I would die, so they started a treatment, because if it wasn’t WG the treatment would most likely be the same. This decision making saved my life. I had lost kidney function, I couldn’t breath properly because my lungs were filling up with fluid, my sinisis were also very bad.

2 weeks later after being in ICU I was released and sent home. Many medicines to take each day as well. The medicines I was sent home with were cytoxin, prednisone, bactrim, folic acid, protenix, renal gel, along with getting dialysis 3 times a week.

I was able to walk out of the hospital even after losing all the muscle mass I had attained in working out. The doctors said that being as physically fit as I was saved my life as much as making the diagnosis and implamenting it.

So the strict renal diet was in effect. This was difficult. You have no idea how many things have potassium in them until you have to look. We already knew that salt content was high in most things and had way previously had mad life decisions to cut down on it.

Along with all this comes immune suppression. This is actually the most difficult thing to deal with out of the whole ordeal. As much as some one sneezing at you can lead to bad things. I started wearing a surgical mask during dialysis. About a month into this my doctor called and said that my kidneys started working again and that I might be able to stop the treatments, this was confirmed by the neffologist. A week later the portacap was removed.
I went back to the dialysis center to show off to the nurses I befriended, thank them and give them the good news of some one getting well and off dialysis.

Two days later I came down with the worst possible case of shingles in the worst possible places. With medicine and treatments it went away, but I am left with problems resulting from it. I have also fought off several other illnesses as well.

As of today I reached a milestone, completely off of prednisone! The cytoxin was changed over to methotrexate.

Though every day I wake hoping not to have to run to the doctor for some strange ailment. It is something I am starting to learn to live with. I can’t do any traveling because of this. Still a small price to pay.

I walk every day for 2 miles, do kettle bell swings 4 times a week and go to the gym at least 3 times for weight training. I am still 6 pounds over what I was before the sickness.
I can eat almost anything now, with the exception of blue cheese, sushi, brie, alcohol.

I am very interested in how others deal with not be afraid every day of coming down with something and having to run to the doctor because you have no idea whether it’s WG related or not.

[Doug]

For the time being, having a healthy concern- it's not a fear, let me assure you!- for infections is a wise approach for a Weggie just released to the world. You will be more vulnerable to infections now than later, once you get off immunosuppressant medication. The good habits you acquire during this vulnerable period will still serve you well once your body is at the next "new normal" stage (read through the other entries, and you will understand that concept). Washing your hands with hot soapy water probably is the best thing you can do after shaking hands, for example, or touching things that people with colds touched before you. Following reasonable hygiene practices will serve you well. I used to work in an office where the other three people spent the winter with colds. The last five years I worked with them, I had one cold, and I feel I picked it up at the care center where my mother is. Another infection, in my throat and brochial tubes, I feel I picked up at a 90th birthday party for my mother, where I stupidly (though with great pleasure!) hugged each of approximately 70 women. It doesn't hurt to carry a few antibacterial HandiWipes in your pocket, though they don't target virus (I don't think), just in case you aren't some place where you can wash your hands. Also, be conscious of where you put your hands or use your hands after shaking hands or touching things infected people may have touched. You can transfer disease agents by touching your eyes or "nasal insertion" (Haw!). I also stayed away from children and animals as much as possible, though I enjoy the antics of both. In time, you will become less paranoid about things, learn just what is and isn't necessary to assure your personal safety. P.S. Good for you, to start your exercise again! You do know that it increases your creatinine level temporarily, don't you? The exercise does you and your body good, within reason, but keep your doctor appointments in mind since you probably will have creatinine levels tested for some time. Your doctor may be able to give you a sense of whether or not you should exercise before a visit, or how long before a visit you should put between the visit and exercise. Welcome to the forum!

[KtheC]

All my doctors approved my return to the gym. My wife seems to think that the muscular build I have before "the dark time" was partially to blame. She thinks that people with heavy muscle mass are more subject to kidney issues. I didn't know that working out would change my creatin level. I always have my tests done in the mornings, sometimes the morning after a work out that was the night before.

[Doug]

YouTube - Take it where you will: Infection Control for Weggies

Double-left-click on the link above, and you will get to see me talking about infection control. As I have encouraged others in the forum, I hope the videos I did will inspire them, you to put their, your experiences with WG on YouTube or in a blog.

Sangye's blog has some personal experiences with WG in it, and I recommend going to it from time to time for that and for what I feel is a refreshing attitude on life. She attaches a link to her entries.

People like you, in particular, are at a stage of your treatment where things are fresh in your mind, so a YouTube diary might be one way to work through dealing with your new BBF, Wegener's granulomatosis.

Those of us using this forum for information, inspiration, comfort in the shared experiences of others have found the treatments and experiences of others are amazingly different, sometimes because of the doctor's specialty at time of diagnosis, sometimes because of the doctor's experience with WG patients, sometimes because of availability of recognized facilities for treatment where we live. I'd think in the Maryland area, you'd have world class treatment available- Johns Hopkins comes to mind.

[Doug]

I'm having problems entering responses today. Andrew must have made some changes so you can change things if you come in by a link, but not if you cruise around to read other links. I don't know! Regardless, if I am mistaken, there will be redundancies in my replies. Yes, yes, yes, I know- I mean more than usual!

Anyway, getting back to some level of exercise your weakened immune system and body can handle is an excellent start for your recovery! As far as creatinine levels or how much is too much, you are seeing your doctors enough at this point that I think they need to know exactly how much exercise you are taking on as part of the information they need to make a correct evaluation of the numbers. I bet they will be especially happy about the exercise as most of their patients (I bet) neglect this part of recovery. What your wife said about exercise and kidney damage makes some sense, now, and you have a way of tracking that through urine analyses ordered by your doctors.

[KtheC]

I could have went to Hopkins. It is close enough, but it is in a really bad neighborhood. I didn't want my wife having to worry about getting shot coming to see me. So I went to GBMC, they did send my kidney biopsy to Hopkins though.
I still do monthly blood tests and see 3 doctors every 3 months now.
One really cool benefit out of all this. My hair started to fall out from the medicine, so I shaved my head. I have gotten many compliments about it, wife loves and it and so do I.

[Doug]

Cool! Mine did too. The lady who cuts my hair finally convinced me to get it cut short, about a year ago. "Cut it as short as you think it should be." She did! The final result was a buzz cut, something I hadn't had since the early 1970's when I was in the US Army. No one ever said a thing about my haircuts until then. I didn't expect them for one thing, and I worked in a mostly guys department: you just don't tell a guy his hair looks nice today! Haw! Well, every one of the guys in my department said something positive about my hair. I looked in the mirror and I thought I looked like my father, which I told him, to his amusement. The lady who cuts my hair insists my hair is getting thicker, but I think it's still as thin as before, just shorter. I like it because I don't like messing with hair, and the short cut can look good with minimal effort. Sorry to hear Johns Hopkins is in a bad neighborhood. All of the hospitals I have been in in Denver are in rough neighborhoods, too.

[Sangye]

I live in Maryland and go to Hopkins. Bayview Campus is where the Wegs docs are, and it's not that bad an area. (I go alone and am not worried) I recommend the Wegs docs there a zillion times over.

I went to Mayo Clinic in Arizona for 1.5 yrs. They kept wanting to overmedicate me, and were fearful all the time. At JHU I can relax and let them run things. They've definitely got a better idea of what's going on than me. I have a huge ego, so for me to acknowledge that means they're really, really good!

[KtheC]

I live in Baltimore so I had a choice of where to go. I chose GBMC because of past experience. Bayview wasn't even a thought, probably because it is a good deal further away. GBMC did send my biopsies to Hopkins. It had to be done twice because the first one got screwed up. Just got home from the gym, good work out and treated myself to a Five Guys burger!

[coffeelover]

Welcome KtheC,

I have a quick comment regarding your statement about being afraid of something hitting you day by day. We probably all have a bit of that fear, but through this site have found comfort in each others wisdom and experiences and we know that this disease has a "mind oaf its own". If you read other threads you will see we have named it our new "BFF-best friend forever". We spend quite a bit of time trying to find a connection to WG with all of us, hence the rabbits, and we have watched the informative U tube videos by Doug and support each other in whatever happens with each day.
I just wanted to welcome you
Coffeelover (Lisa)