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KtheC
04-23-2009, 01:34 AM
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
04-23-2009, 02:18 AM
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
04-23-2009, 02:25 AM
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
04-23-2009, 02:46 AM
YouTube - Take it where you will: Infection Control for Weggies (http://www.youtube.com/watch?v=bAh76XruiHA)

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
04-23-2009, 03:27 AM
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
04-23-2009, 03:41 AM
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
04-23-2009, 04:15 AM
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
04-23-2009, 08:18 AM
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
04-23-2009, 10:08 AM
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
04-23-2009, 12:34 PM
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)

andrew
04-23-2009, 08:28 PM
Hey there and welcome. Seems like you had a quick diagnosis which is great. Congrats on the kidney's coming back and coming off the Pred! Also sorry that you can't eat sushi. probably something I should steer clear of too but it's like a siren calling my name.

I'm constantly looking out for things that could give me a cold/make me sick. I'm totally paranoid. I know for a fact that my GP holds two appointments a day free for emergencies. They know I know too so now there are no arguements when I call up! I hear you with the renal diet. I was on it while in hospital and it gave me the irrits!!! Also, keep up the good work with the exercise!

Great to have you as part of our community!

Doug
04-24-2009, 02:53 AM
Here's another one of those mysteries about how different doctors approach things differently. My care at University Hospital-Denver was in four tiers: an intern who was assigned to me because I had an unusual disease; GPs responsible for general issues not related to WG; rheumatologists who were the people in charge of the direction my care took; nephrologists who managed dialysis and plasma pheresis treatments ordered by the rheumatologists. Again, I had the severe form of our BFF, with kidney involvement. Back in Nebraska, my primary care came/comes from a pulmonologist, with non-WG issues going to my GP. Among all of those doctors, not one indicated I should take parrticular precautions in what I ate! My pulmonologist did recommend maintaining a low fat, low sodium diet, eating in moderation, but isn't that pretty much what they all say? On the matter of cholesterol, which was in the high normal as I understood it at the time (148 whatever the measurement is of the "bad" stuff, whichever that is- perhaps Sangye or someone else can straighten me out!). My pulmonologist said "current thinking is that 100 or less" is the target to shoot for. I challenged that, and got one of those "I agree with the lower number, though other doctors may not" kinds of responses that show why we as Weggies need to be as informed as possible. Doctors are scientists who like a logical, fact-based presentations, something most of us aren't prepared to do. One thing I hope we do for each other is to open up questions for research so that we are informed when we see our doctors and they present us with treatments we don't see the point of, based on our understanding of the treatment. :cool: (sorry- couldn't resist a smiley)

jola57
04-26-2009, 01:40 PM
As to travel, I can tell you - it can be done. For over two years I stayed home because I didn't know how I would feel while away. Finaly last December I went on a holiday and in february. Now I am going to Europe for a month. Unless your have to stay close to the hospital, do not limit yourself and go on a holiday.

andrew
04-26-2009, 02:05 PM
Yup certainly. I was travelling alot in the job I had before this one. No real issues except I had to take things easily. Found out the hard way on my first trip. Stayed out at dinner with my colleagues until all hours and got virtually no sleep. Dear me. Never again!

Doug
04-26-2009, 11:09 PM
Nothing to say- accidentally hit "Quick" when I wanted to hit the page- numbness in the fingers sometimes drives me crazy!

coffeelover
04-27-2009, 05:35 AM
Thanks for encouraging the travel. I, too have dropped any travel for fear of my BFF working me over. I needed someone to tell me it is OK to go. Much appreciated!
Lisa (drinking coffee on a rainy MN day)

jola57
04-27-2009, 05:24 PM
Lisa, joining you with a nice hot cup of tea on a, finally, real spring day in BC

coffeelover
04-28-2009, 07:21 AM
Jolanta,
It is nice to have the company. Thanks for joining me

ian anderson
05-20-2010, 08:55 AM
hi there im new to the forum your story has some overtones of my own glad your back at the gym i miss the gym so much im freakin out was in training for a competition when i took a heart attack read my story we,ll speak agn no doubt all the best

elephant
05-20-2010, 11:39 AM
Ian when do the doctors think you can go back to exercising? Training?

ian anderson
05-20-2010, 11:46 AM
they told me to push myself 2 months after heart attack so i went back to gym but trachea stenosis occured and stopped me dead im my tracks you need your pipes in good order as i dont hang about in a gym hard core workouts but short 20 mins builds best muscle and tendon connective tissue strength helps when flare happens but when ts is sorted str8 back to gym thnx

Sangye
05-20-2010, 12:06 PM
Ian, I already forgot-- are you still on pred? If so, weight training is a bad idea. Pred makes it very easy to tear tendons and ligaments.

RPylican
05-24-2010, 01:12 PM
Doug ~ you mentioned in one of your posts in this thread as well as the one I did under New Members that you were seen by Dr's in Denver. I live in Denver and am being seen by Dr's near Rose Medical Center which is where the UCHSC used to ne located (they moved about a year ago to Aurora I think). What I wondered is, did you see Wegener's Specialist here in Denver and if so, I'd love to find out who you were seen by. I have a great Kidney Dr but really want to find someone who specializes in Wegener's and I'll travel if I have too but the closer to home the better. Thanks so much!

Doug
05-27-2010, 06:20 AM
Doug ~ you mentioned in one of your posts in this thread as well as the one I did under New Members that you were seen by Dr's in Denver. I live in Denver and am being seen by Dr's near Rose Medical Center which is where the UCHSC used to ne located (they moved about a year ago to Aurora I think). What I wondered is, did you see Wegener's Specialist here in Denver and if so, I'd love to find out who you were seen by. I have a great Kidney Dr but really want to find someone who specializes in Wegener's and I'll travel if I have too but the closer to home the better. Thanks so much!

The doctors' offices are out on East Colfax, the Anschutz something or other- the name escapes me. It's in an Hispanic part of town, which, as someone who likes Mexican food (especially homestyle!), suits me fine, though the guy who drove me over was a bit intimidated. Dang gingo! Ha! The doctor I had the most contact with set up a private practice in Huston, I think it was, but the head of the rheumatology department, Dr. West, is the specialist he consulted, and is the one my pulmonologist (actually the doctor most involved in my treatment since it was lung issues that brought me into the world of WG and medicine) consults. That isn't much help.

(Anschutz Medical Center- over by Fitzsimmons)

RPylican
05-27-2010, 11:49 AM
Thanks Doug! I'm going to see if Dr. West is still there. I know the area you are talking about. It can be pretty intimidating, especially if you don't know the area, and I certainly wouldn't walk around at night down there but it is a great Medical Center. Anschutz is part of the University of Colorado Health Science Center (UCHSC) and is a great research hospital, I just don't how much they deal with WG. I'll give them a call. Thanks again.