hot flashes -low hg

[skipper]

i was diagnosed three months ago after years of symptoms that were treated with antibiotics. My kidneys were failing and are now up to 25% which nephrologist thinks is plateau. I am not producing hg so have inection aranesp every two weeks. Following the infection i started having torso heat surges and weakness. I am also very hyper and depreseed. I just feel so hopeless. It seems I see a doctor every week. I have a bladder infection that won't give up and my ears were totally blocked. They are improving and at least I can hear my own voice clearly. I know everyone on this forum has a variety of problems - many worse than mine but I am in a very dark and lonely place right now. Just plain scared. I needed to vent here as I don't like complaining to family and friends. This feels safe and any response would be helpful. :confused1: Skipper in Canada

[pberggren1]

You vent all you want there Skip. We are here to listen.

[drz]

Yep, all sounds very familiar and it can take awhile to get better, but if you are getting correct treatment, things generally will improve once they get you correctly diagnosed. The bad year or two before diagnosis while chasing symptoms and trying to get things sorted out seems the norm for most of us. Recovery can also be a slow process for some of us. A lot depends upond severity of your case and state of general health before diagnosis.

It took me several months even after I was well enough to leave the hospital before my kidneys improved enough to stop getting regular transfusions every week or two due to low hemoglobin. Epogen shots to stimulate the kidneys can help with anemia. I still have anemia but only mild now and my kidneys actually improved slowly after several months to almost 50% normal function. The blocked eustachian tubes can fluctuate a lot but mine slowly improved in my ear with very limited hearing after a year and half but all the hearing and balance was lost in he other. I had surgery for BAHA hearing implant in March and will get hearing aid for implant in a couple weeks which should greatly improve my hearing. The recurrent bladder infections also took many months to get under some control but I haven't had any now for a year due to taking trimethoprime antibiotic on a preventative basis. Make sure they culture the infections to get right antibiotic for the infection as mine often varied and what worked one time often didn't work the next time. The pain and cramps though were extremely unpleasant during infections so sorry you have to deal with that stuff. Blocked ears also make it hard to converse so loneliness is hard to avoid. Nice thing about email and this forum is you can communicate without hearing. I remember the heat flashes and night sweats but don't remember the cause or treatment but they also eventually decreased some. i think mine were probably related to the pred meds and numerous hypoglycemic episodes caused by the high dosage of preds. I still have some night sweats on regular basis and often wake up with damp PJ's but no longer drenched to point i need to change bedding or PJ's like before. So like a colleague who was diagnosed before me with WEGS told me,"If you can survive the treatment, things do get better." So hang in there and hope the better days come soon.

For what it is worth many of us also needed psych help to deal with depression and stress of getting this diagnosis. I also found that very helpful. We all need help dealing with things at times and this Wegs stuff is nothing you want to take on all alone.

Sorry you need to be here but glad you found the best internet source of help around for dealing with GPA. Post away and we will respond as best we can.


i was diagnosed three months ago after years of symptoms that were treated with antibiotics. My kidneys were failing and are now up to 25% which nephrologist thinks is plateau. I am not producing hg so have inection aranesp every two weeks. Following the infection i started having torso heat surges and weakness. I am also very hyper and depreseed. I just feel so hopeless. It seems I see a doctor every week. I have a bladder infection that won't give up and my ears were totally blocked. They are improving and at least I can hear my own voice clearly. I know everyone on this forum has a variety of problems - many worse than mine but I am in a very dark and lonely place right now. Just plain scared. I needed to vent here as I don't like complaining to family and friends. This feels safe and any response would be helpful. :confused1: Skipper in Canada

[Dryhill]

Skipper, vent away all you want. That is the great thing about this forum, we have all been in that dark and lonely place, so know what you are going through. On the positive side your kidneys and hearing have improved since diagnosis, so fingers and toes crossed for more improvements.

Jim

[skipper]

you have no idea how helpful this was. I wake up every morning in a state of panic just wondering if things will get better or if new symptoms will arise. The doctors are so non commital about everything. I understand they don't want to take responsibility for prognosis but they don't understand that hope is all we have. Thank you for sharing. My kidney doctor thinks I have plateaued at 25% kidney function so getting the infection under control is paramount. Is there a time when we go back to "normal" living and this fear gets less. I always thought I was strong but this has shown me a much different skipper. One I don't like much. Heartfelt thanks for lifting my spirits today. Skipper in Canada

[drz]

I don't know if the fear goes away but I think after awhile most of us learn to live with it and manage things better. We also gradually learn to accept a new level of what is normal for us as we adjust to the changes we need to make to keep functioning. It doesn't happen quickly but things seem better as we get better and we learn to handle the roller coaster ride of ups and downs.


you have no idea how helpful this was. I wake up every morning in a state of panic just wondering if things will get better or if new symptoms will arise. The doctors are so non commital about everything. I understand they don't want to take responsibility for prognosis but they don't understand that hope is all we have. Thank you for sharing. My kidney doctor thinks I have plateaued at 25% kidney function so getting the infection under control is paramount. Is there a time when we go back to "normal" living and this fear gets less. I always thought I was strong but this has shown me a much different skipper. One I don't like much. Heartfelt thanks for lifting my spirits today. Skipper in Canada

[vdub]

Hey! How about that? I was able to connect to the forum today, so I better make the best of it. I haven't been able to connect for weeks.

Anyway, Skip, your question....

Is there a time when we go back to "normal" living and this fear gets less.
Not to sound gloomy, but my experience has been "no". But, that's just me. It's different for everyone. Some people go back to life pretty much as it always had been. But, others have the disease hanging around their neck like a lead weight. Either way, you adjust and life goes on.

I think all of us have probably become hyperparanoid about any ache and pain in our body. Some are associated with GPA and other's aren't.

Hang in there, things will get better, but you'll have your share of ups and downs.

[skipper]

I hope I do. My vision doesn't seem as good either and that really unnerves me. What a disease. I woke up this morning and planned to look at things differently. I went out for brunch but felt weak and tired very quickly. However I am keeping with my plan to be positive today and hope I will carry that over to the week. Thanks to everyone for the positive notes. Skipper

[Lightwarrior]

Skipper,
I am glad that you found us. The hardest thing for me to do has been to find my new "normal" and accept that. I hope you can feel the warmth that we all want to wrap you in. Most of us have experienced that hopeless, afraid feeling that you describe, I know that doesn't make it better for you, but at least you know you are not alone and the feelings you have are normal.

[pberggren1]

We are all weak and frail Skipper. That is just part of being a human. We sometimes like to think the opposite but of course something comes along like Wegs and severely grounds us back to reality. I'm glad you found the Forum. It is a good support line for many.

[skipper]

We are all weak and frail Skipper. That is just part of being a human. We sometimes like to think the opposite but of course something comes along like Wegs and severely grounds us back to reality. I'm glad you found the Forum. It is a good support line for many.

You are so right and I am hopeful I will adjust at some point. I try to put on a happy face but the words from old man river keep harping in the back of mind. Tired of living but scared of dying. Today was a lot better reading your comments. I accepted my weak spells much better and sat and lay down when I needed to do so. I can't thank you enough for welcoming this newbie. I will draw on you a lot and hope some day I can help others. Skipper

[Lightwarrior]

You are so right and I am hopeful I will adjust at some point. I try to put on a happy face but the words from old man river keep harping in the back of mind. Tired of living but scared of dying. Today was a lot better reading your comments. I accepted my weak spells much better and sat and lay down when I needed to do so. I can't thank you enough for welcoming this newbie. I will draw on you a lot and hope some day I can help others. Skipper



You already are helping others Skippy. I wonder how many people there are out there cruising this site who identify with the emotions you have so eloquently expressed? You have given them a voice and hope that someone understands.

[Dryhill]

Skipper, Lightwarrior is right, I am sure there are plenty reading your words and nodding their heads in agreement because that is how they feel.

Jim

[skipper]

I can't say it enough - how glad I am to have found you. I just read the story of the 16 year old who was recently diagnosed and my heart ached for him. However, early diagnosis is the key and perhaps research will bring a cure in his lifetime. The forum is my first touch in the morning and my last at night. I draw hope here. Skipper

[Al]

Skipper, you are very right about this "dark and lonely place" business. But there is a little light among friends going the same direction. We're here for each other.

Even with the best modern medicine (and this should get better over time), this disease is still a beast. It takes a while for the body to come to terms with the beast's taming and management. Of course, we all wish this process were swifter; yet that you are improving is a good sign. Hang in there!


Al