MichiganGeorge new member introduction

[MichiganGeorge]

On August 10th 2014 I came in from haying with a sore throat and very red red eyes. We believed I was suffering allergies due to the extreme ragweed this season. The next morning I lost my voice for two days. I saw my local physician whom gave me an antibiotic and referred me to an ear, nose & throat doctor. I had been doctoring some for soreness in my wrists which was diagnosed as hyperextended. The ear nose and throat doctor told me to see my eye doctor. I saw my optician whom on learning I was a vet; told us to see the VA hospital's opthamologist. We could not get an appointment for six weeks. Meanwhile, on August 21st my foot became completely numb whereas I could barely walk on it. The pain was extreme in the form of burning and stinging. I began taking large doses of ibprophen for the pain. Nothing touched it. I lost sleep. I lost my appetite. I went to the emergency room for an x-ray thinking I had sprained it or something worse. The x-ray was clear. Within a week I went into the VA for another x-ray. The vet doctor said there were some hairline fractures. He would not give me anything for the pain. Remember, my eyes are bloody red; and we think it is an eye infection. We got into a local opthamologist referred to us by the first emergency room visit. He diagnosed it as iridis. Meanwhile I had developed a huge cold sore on my mouth. The opthamologist also gave me a strong prescription to clear this up. The first emergency room doc also gave me a prescription for the cough I have always had. Do note that early this year I had an lung x-ray that showed my lungs to be clear. So again we think the cough is due to allergies and the work I do haying and mowing. I am not eating. I am staying off my foot which is killing me. I am weak. We make a decision to try one more emergency room to try and get a pain pill for the foot pain. I cannot bring my foot back toward my shin. We later learn this is peripheral neurapathy and it was my major symptom to renal failure. The third emergency room hospital gives me a pain prescription of hydrocodone/aceteminaphin and refers us to the sports medicine doctor. We miraculously get in to see him the next day. He looks at me and says readily that this dropped foot has absolutely nothing to do with a broken or sprained foot. He believes I have had a stroke and sends me into the emergency room for tests. These test determine my heart and lungs are very healthy; but I only have 7% kidney function and need immediate dialysis. After an ambulance ride to the nearest kidney dialysis hospital we are told I have Wegeners disease. This was determined through a kidney biopsy. I have been getting dialysis now for six months. I originally had a port into my neck. That was exchanged out for one in my chest. That had to be surgically moved over after six weeks because, it too, was not allowing my blood to clean well. Then I undergo a temporary tubular graft fistula. The idea is to remove the chest port a.s.a.p. Then once the temporary fistula in my left arm is working well; a permanent fistula in my right arm can be put in and allowed the two month maturation. But the temporary tubular graft keeps clogging up. The surgeon opens it twice more going way up under my arm pit and into my neck and chest area. It is extremely painful. It too clogs up. We ask for a new doctor. April 3rd we see a private practice surgeon for an mri to determine what to do next. Six months of dialysis without a good clean reading. I am so depressed and tired of all of this. Prior to last August I was physically working in a grain mill and ranching. I have always been known for my physical strength in working and sports. I cannot continue like this. It is truly killing my spirit. I am so use to being so physically capable and active. I don't know how to cope with this crippled me. The peripheral neuropathy in my right leg makes walking difficult without my brace. I am not in a good place.

[annekat]

Welcome to the forum, George. Your problems with WG are completely different than mine, except that I've had some peripheral neuropathy, but not as severe as yours. But I know there are some on here with severe kidney issues, more severe neuropathy, dropped foot, and some of the other things you mention. Many of us know the frustration of delayed diagnosis, and we are all familiar with the fatigue, depression, weakness, and loss of the stamina we once had. There are some encouraging stories on here of people who've been in very bad shape and come around very nicely with treatment. You will find a wealth of information here on all aspects of WG, the different symptoms and involvements, the different treatments, and the various ways people deal with its effect on their lives. You are not alone here, we understand, and we are here whenever you need to get some support, share something, or blow off some steam. I don't know where everyone is right NOW.... but they will appear, and since this is a world wide forum, there are generally people here 24/7. This forum is the greatest, and I hope you will find to be as helpful as it has been to me the last three years. I hope you are getting some treatment with the standard WG drugs in addition to the dialysis. Best of luck to you.

[renidrag]

I have had to deal with the Neuropathy in both feet and lower legs. Walking was a chore to say the least, let me also say I worked every day of my life and I worked hard and long hours until four years ago, so I know what it is like to be in your situation and believe me I know how you feel. Anne raises some good questions, are you seeing a Rheumatologist? What is your treatment protocol? I did not have kidney involvement so I can't address that issue however there are others on here that have been through what you have. I'm sure you will gain invaluable knowledge from this site and the wonderful people here. Is there any other treatment besides dialysis?
Dale

[mishb]

Hi George and welcome.
Gosh I am glad you found us

I am probably your late night stalker, as being from Australia, we are awake when you guys are supposed to be sleeping. This of course I am presuming that you are from the USA.

The blood eyes (uveitis and scleritis) were one of my first symptoms together with the joint pain and sinus issues and blocked/deafness in one ear.
Medication thankfully has, mostly, cleared all of this up. My last kidney test they were at 75% so no issues here. I'm sorry about the dialysis and the tube that keeps blocking.
I sure hope they have proper specialists within your VA hospital, you really need one with Wegener's experience.

Take care George and I'm sure you will back to working the ranch in no time.

[windchime]

Welcome to the forum George and thank you for sharing your story. Wow you've been through a lot in a short period of time. I can't speak to the kidneys as I have lung involvement, but I do have neuropathy in my feet and legs. If you haven't already tried it Lyrica helps a great deal for the nerve pain. I also take Mirapex which is for restless legs, but seems to help with the neuropathy which gets worse in the PM.

You don't mention what type of docs you are seeing other than the surgeon and eye doc. Sounds like a good nephrologist and Rheumatologist are in order for you. Preferably ones with Wegs experience. My Wegs is service connected oddly enough and my PCP at the VA has been unhelpful, so I keep using my outside docs. If you can swing a visit to Mayo in Minnesota or Cleveland Clinic in Ohio they both have excellent wegs docs and will consult with your local docs.

You don't mention if you are on any wegs meds. If you aren't it is important that you start them as this disease can progress quickly. This disease leaves most of us without energy to do much, but without good dialysis I imagine that is not helping your situation either.

I hope that you start feeling better and like everyone else said there is usually someone on here 24/7. It's a great support group with kind, loving people. If you haven't had the chance to check the archives please do so as you will find a lot of information and many of your question will be answered or you will think of new ones.

Again welcome to the forum and please keep us updated. Hugs to you. :hug2:

[Alysia]

welcome George :hug1:
I am sorry for the tough time you are going through. I believe that in time you will feel better. please share with us as much as you feel like. it helps.
I wouldn't have survived without this forum. mentally and physically.

[vdub]

I am so depressed and tired of all of this.
Quite a PITA isn't it? We totally understand since most of us have been through or are dealing with the same thing. It's been 4 years for me since I was dx'ed and I still haven't fully come to grips with it. Some days I think I'll be able to continue with those things I had planned for retirement and other days I recognize that things have dramatically changed and are going to stay that way. One of your next hurdles will most likely be weight gain. Most of us have gained weight from the drugs (pred) and lack of exercise. Of course, that's not true for everyone, but certainly a lot of us. Hang in there!

[MikeG-2012]

One of your next hurdles will most likely be weight gain. Most of us have gained weight from the drugs (pred) and lack of exercise.

Been there, done that, bought MORE than the T-Shirt! Any magic answer you discover vdub, let me know, will ya? (-8 LOL! I could sure use the tip!

[JenG]

Welcome George!
I'm sorry to hear that you have been going through so much these past six months or so. I too, wasn't diagnosed until I was in complete renal failure. I was much younger than you (27) and had an easier time with dialysis. Have you spoken with your doctors about possible peritoneal dialysis until you can get a decent graft/fistula? I'm hoping that you are on a renal diet and strictly adhering to it, it will make a huge difference during your dialysis sessions once your doctors can get all of that figured out. Are you on Prednisone for the Wegener's? It will help you with alot of other things right now too. Are you getting Heparin injected into your port during dialysis to help keep clogging at a minimum? I think I remember this as part of my treatment. (I was on dialysis for 10 months--switching back and forth between both hemo dialysis and peritoneal before I was cleared for a transplant.) Your skin is also an organ used in body cleansing, soooo, my thought has been that if you can sweat ALOT, you will be eliminating body toxins. Obviously not nearly enough to stop feeling uremic, but every little bit can help those 7% functioning kidneys, right?! Are you receiving Epotin shots to help increase your hemoglobin levels? This is a great medication (incidentally, it was what Lance Armstrong and many other pro athletes use when they are accused of "doping") and is usually given at dialysis sessions. You had mentioned that you are "not in a good place"....I'm not surprised you feel this way as your body is suffering a huge toxic overload as well as anemia (I imagine) and Wegener's symptoms. Hang in there and ask your doctors ALOT of questions--it took me several months to realize that the doctors that the hospital assigned me to weren't helping me like they could. They kept putting me on more medications to "treat" or "cover up" symptoms rather than fixing the underlying issues. You are a strong man--I know this because you are a "farmer." In my opinion, no one works as hard as farmers. I worry that because you are a farmer/rancher you are probably in a rural area and the hospitals/doctors that are treating you are really not who/what you need. You need to advocate for yourself because no one else will do that for you. Please also don't think that because your doctors are doctors you have to completely trust them. Yes, they are doctors, but you are a patient who needs extremely specialized care that they are not really trained in. So, remain strong even though you feel like crap and can't see beyond this right now! You can do this!

Please keep us posted on how things are going and ask any questions that you may have. We are here to support you and cheer you on, especially when things are tough!

Jennifer
dx 2000

[Jaha]

Welcome to the best info that you will find out there about wegs. I'm so sorry that you're going
Thru so much. The acceptance of this disease is one of the hardest things to do mentally. As you
Read some of the post on this forum, you will find that some of the stories are like looking in the
Mirror,one thing that I always see as being common in all of us,is what hard working strong people
We were. I'm wishing all the best and please take care of yourself, don't beat yourself up just concentrate
On your recovery.

[tankerB25]

Sorry to hear you are in a bad place but I can relate. August of 2012 I went into the V.A. hospital here in Denver with drop foot in both legs. I was in a wheelchair and using a walker and braces on both feet. Miserable is a good word for it, I too was healthy and recently retired when diagonised with WG. What a change from hiking in the beautifu mountains of Colorado, going to the gym and playing golf. I couldn't even drive myself to the store or the many doctor visits I had. Now I am walking without braces, I use a cane to be stable. I still have no feeling in my feet but the muscle is coming back. I have done accupuncture (private practice) and Physical therapy at the V.A. It seems to help with recovery of function and feeling. Keep the faith brother, I just joined this website and have found it to be reasuring to read other peoples stories. This is a great support group.

Steve

[tankerB25]

Sorry to hear you are in a bad place but I can relate. August of 2012 I went into the V.A. hospital here in Denver with drop foot in both legs. I was in a wheelchair and using a walker and braces on both feet. Miserable is a good word for it, I too was healthy and recently retired when diagonised with WG. What a change from hiking in the beautifu mountains of Colorado, going to the gym and playing golf. I couldn't even drive myself to the store or the many doctor visits I had. Now I am walking without braces, I use a cane to be stable. I still have no feeling in my feet but the muscle is coming back. I have done accupuncture (private practice) and Physical therapy at the V.A. It seems to help with recovery of function and feeling. Keep the faith brother, I just joined this website and have found it to be reasuring to read other peoples stories. This is a great support group.

Steve