JenG
12-23-2013, 03:26 PM
Hello All!
I have been directed to your site by a fellow Weggie family member who works with my sister. I've been perusing the forum now for a few months and decided today to finally join the fun!
A little about myself (I will be brief as my story, like others, could go on and on): I was dx with WG back in 2000 after 9+ months of doctors appointments and tests. I was finally diagnosed after suffering from complete renal failure. I was not treated with the standard treatment back then (cytoxin was the only serious treatment in 2000) as Mayo said the only reason to take the cytoxin would be to save my kidneys-which were already gone. I was on dialysis for 10 months being treated with Prednisone and immunosuppressives (preparing for transplant). My father gave me one of his kidneys on 12/12/2000--we just celebrated our 13 year transplant anniversary! I was not followed by a rheumatologist--just my transplant doctor and began to consider myself as a transplant patient, not a WG patient. My original WG involvement included kidneys, lungs, sinuses skin/joints. It never really occurred to me and no one ever mentioned that WG could flare or come out of remission or that I should be seeing a rheumatologist, strange, huh?
Over the past few years I have had my tonsils out and a sinus surgery. My ENT is very happy with the surgery results as now he can better see what he needs to as he scopes me and I can take topical treatments to my sinuses much more effectively. Late Winter 2013/Early Spring I started feeling pretty lousy so I went to my ENT. They cultured my sinuses and all came back clear. They assumed it may be allergies so gave me a week's dose of Prednisone. Things felt much better but after the week the old feelings came back...you can see where this is going, can't you?! Went to Transplant Dr for 6 month apt--kidney function is going down--probably because I am nearing the end of my transplanted kidney. We've had a good run but it is time to start thinking about getting ready for another transplant maybe a year, year and a half left. I still had a list of symptoms that were bothering me and I knew something wasn't right. I went to my GP and asked if this would be what I was to expect with a failing kidney--he said something else was going on and started running tests. My ANCAs were not out of range and I was having fevers so he was looking for more infectious things. When he ran out of ideas he contacted the transplant center who sent me to an infectious disease doctor (who is married to a rheumatologist!!). Anyway, it was determined over the course of five months that the Wegener's is flaring. So here I am!
I have learned that flares often times have different symptoms than the original onset of the disease. Most everything I should have been doing for my WG (other than seeing a rheumatologist) I believe I was pretty much doing due to the transplant. I think I pretty much know my body and can tell when something is amiss. My nephrologist still thinks that my kidney is not affected by the WG flare, but I am pretty certain that it has been. My rheumatologist also believes this. I have been on Prednisone for 2 months waiting for my first Rituximab infusion which will be this Thursday. I will be taking the 2 larger doses two weeks apart, not the 4 smaller weekly doses that many of you take. My kidney function looks much better than it has in years--I'm attributing this to the prednisone and probably won't know where I am function-wise until the steroid dose has been tapered down and the RTX injections are completed.
For those of you who have been newly diagnosed and have so many questions and worries:
At the beginning it is so easy to focus only on what you are going through in the moment. I wondered if I would ever feel normal or have a day go by that I didn't think about my disease or worry about losing my transplanted kidney. After a while, after meds start working, your body starts adjusting to what you are feeling. Your body is pretty miraculous and will make its own adjustments--yes you will have to relearn your physical limitations but once you get beyond that, life can be pretty normal. I was diagnosed at age 28, now I am 41. I am an immunosuppressed elementary school music teacher working in a germ cesspool and think I have done fairly well. My husband has been a fantastic caretaker when he needs to be but will not let me feel sorry for myself. I do what I can to help myself and the rest is out of my hands. I have a fantastic team of doctors (not from any of the vasculitis centers) who really do care for and about me. I have been off of work since my flare was diagnosed in October but think I need to be back in January while I am finishing my RTX infusions. Generally speaking, I would say that I had a good 12 years that I didn't feel "diseased" or "limited" by WG. Now that I know that I can flare and probably will flare with stress, I can hopefully keep a better eye on this. Also, I think I know when something isn't right with my body so now I can better attribute those symptoms to a flare rather than just "an old kidney."
Thanks for reading about me and thanks for all of your posts about you that I have been reading over the past few months. You all are such strong, caring and empathetic people--I am glad to have found you!
Jennifer
dx 2000
I have been directed to your site by a fellow Weggie family member who works with my sister. I've been perusing the forum now for a few months and decided today to finally join the fun!
A little about myself (I will be brief as my story, like others, could go on and on): I was dx with WG back in 2000 after 9+ months of doctors appointments and tests. I was finally diagnosed after suffering from complete renal failure. I was not treated with the standard treatment back then (cytoxin was the only serious treatment in 2000) as Mayo said the only reason to take the cytoxin would be to save my kidneys-which were already gone. I was on dialysis for 10 months being treated with Prednisone and immunosuppressives (preparing for transplant). My father gave me one of his kidneys on 12/12/2000--we just celebrated our 13 year transplant anniversary! I was not followed by a rheumatologist--just my transplant doctor and began to consider myself as a transplant patient, not a WG patient. My original WG involvement included kidneys, lungs, sinuses skin/joints. It never really occurred to me and no one ever mentioned that WG could flare or come out of remission or that I should be seeing a rheumatologist, strange, huh?
Over the past few years I have had my tonsils out and a sinus surgery. My ENT is very happy with the surgery results as now he can better see what he needs to as he scopes me and I can take topical treatments to my sinuses much more effectively. Late Winter 2013/Early Spring I started feeling pretty lousy so I went to my ENT. They cultured my sinuses and all came back clear. They assumed it may be allergies so gave me a week's dose of Prednisone. Things felt much better but after the week the old feelings came back...you can see where this is going, can't you?! Went to Transplant Dr for 6 month apt--kidney function is going down--probably because I am nearing the end of my transplanted kidney. We've had a good run but it is time to start thinking about getting ready for another transplant maybe a year, year and a half left. I still had a list of symptoms that were bothering me and I knew something wasn't right. I went to my GP and asked if this would be what I was to expect with a failing kidney--he said something else was going on and started running tests. My ANCAs were not out of range and I was having fevers so he was looking for more infectious things. When he ran out of ideas he contacted the transplant center who sent me to an infectious disease doctor (who is married to a rheumatologist!!). Anyway, it was determined over the course of five months that the Wegener's is flaring. So here I am!
I have learned that flares often times have different symptoms than the original onset of the disease. Most everything I should have been doing for my WG (other than seeing a rheumatologist) I believe I was pretty much doing due to the transplant. I think I pretty much know my body and can tell when something is amiss. My nephrologist still thinks that my kidney is not affected by the WG flare, but I am pretty certain that it has been. My rheumatologist also believes this. I have been on Prednisone for 2 months waiting for my first Rituximab infusion which will be this Thursday. I will be taking the 2 larger doses two weeks apart, not the 4 smaller weekly doses that many of you take. My kidney function looks much better than it has in years--I'm attributing this to the prednisone and probably won't know where I am function-wise until the steroid dose has been tapered down and the RTX injections are completed.
For those of you who have been newly diagnosed and have so many questions and worries:
At the beginning it is so easy to focus only on what you are going through in the moment. I wondered if I would ever feel normal or have a day go by that I didn't think about my disease or worry about losing my transplanted kidney. After a while, after meds start working, your body starts adjusting to what you are feeling. Your body is pretty miraculous and will make its own adjustments--yes you will have to relearn your physical limitations but once you get beyond that, life can be pretty normal. I was diagnosed at age 28, now I am 41. I am an immunosuppressed elementary school music teacher working in a germ cesspool and think I have done fairly well. My husband has been a fantastic caretaker when he needs to be but will not let me feel sorry for myself. I do what I can to help myself and the rest is out of my hands. I have a fantastic team of doctors (not from any of the vasculitis centers) who really do care for and about me. I have been off of work since my flare was diagnosed in October but think I need to be back in January while I am finishing my RTX infusions. Generally speaking, I would say that I had a good 12 years that I didn't feel "diseased" or "limited" by WG. Now that I know that I can flare and probably will flare with stress, I can hopefully keep a better eye on this. Also, I think I know when something isn't right with my body so now I can better attribute those symptoms to a flare rather than just "an old kidney."
Thanks for reading about me and thanks for all of your posts about you that I have been reading over the past few months. You all are such strong, caring and empathetic people--I am glad to have found you!
Jennifer
dx 2000