marylz
02-24-2013, 07:55 PM
Hi all. My name is Mary, living in Northern Virginia, and found out I have Wegener's about 3 weeks ago.
Let me preface that with the fact that I am 54, was born with congenital heart problems, had 3 open heart surgeries by the time I was 24 and now have an artificial aeortic heart valve that requires me to be on a relatively high dose of blood thinners. To add to this about 3 years ago, during a ct scan of my belly they found that I have only 1 kidney (enlarged, but only 1.)
Fast forward to 5 and 1/2 weeks ago. I had a painful rash on my legs, went to an urgent care doctor and she prescribed an antibiotic and an anti-inflammatory to take. I did so when I got home in the morning and again at bedtime. While trying to go to sleep I noticed by heart was beating fast and irregularly. I thought maybe I was having a reaction to the new meds I was taking and went to the local ER. Here they discovered I was in affribullation and started having difficulty breathing. So I was admitted to the hospital, where I stayed for about 2 weeks while they tried to figure out what was wrong. My lungs looked like they were filled with cotton balls on the xrays and I was still having a lot of trouble breathing. (Luckily, my heart went back into sinus rhythm by itself.) So by asking lots of questions and running all sorts of tests, the doc narrowed it down to Wegeners and wanted to do a V.AT.S. on my lungs but wanted me to go to a different hospital that had docs more experienced with it. So I was transferred to the better hospital, where they asked me the same questions and ran a lot of the same tests and came up with the same diagnosis. The problem was the risk of doing a biopsy of my kidney, where there was involvement, was risky because of the fact that I have only 1, and the rash on my legs was now gone,and the lung biopsy was questioned because that was the area that had the most bleeding and they didn't want to take me of the blood thinners to do the procedure, because it would increase the danger to my valve. By doing any of the biopsies, they risked greater harm than good for me.
So, I now have wegeners and was put on prednisone and had my 1st infusion of cytoxan as well as a bunch of other drugs 3 weeks ago. It took them another week to get my blood thinners therapeutic and so I came home on Valentine's Day. I was in the 2 hospitals for a total of 4 1/2 weeks. I spent a lot of that time being scared and looking up wegeners on my smart phone. My doctors were all very caring and matter of fact with me and I agreed with their assessments and plan for treatment.
My mom (age 81) came up from Florida to help care for me and my husband hovers. I have a daughter in grad school in Michigan and a son who is a high school senior at home as well as my beloved cavalier king charles spaniel. I feel very isolated in the fact that I came home at my suppressed immunity and can't really have visitors. I have gone out to various doctor appts (with my mask) and a couple of odd errands with my mom. I was pretty weak after being in the hospital for so long, but am getting stronger. My breathing doesn't hurt any more and I don't get as winded as I did unless I really push it. I am also pretty fatigued and take a nap in the afternoon. So all is stable. I do have involvement in my lungs and kidneys and it is probably in my sinus now too-having ct scan this week. I don't want to seem as though I am complaining as you all have experienced a lot of the ups and downs of this disease, but I feel it is so unfair to me (and all of us!) I have had my share of medical problems and when is enough enough? I never thought I would live past 50 because of my heart and so have lived a full life, having married and having and raising children, so in some ways I feel lucky to have been able to do these things, but there are lots of other things I want to do as well and as of right now with the trearments I am stuck here til I go into remission and then still have this hanging over my head. It is overwhelming to me.
The stories and experiences I have read on this forum do give me some hope and I thank you all for that. I keep telling myself that I just have to get through with this first part and then it will be easier to deal with. I am so happy to have found this forum and look forward to getting to know you all better!
Let me preface that with the fact that I am 54, was born with congenital heart problems, had 3 open heart surgeries by the time I was 24 and now have an artificial aeortic heart valve that requires me to be on a relatively high dose of blood thinners. To add to this about 3 years ago, during a ct scan of my belly they found that I have only 1 kidney (enlarged, but only 1.)
Fast forward to 5 and 1/2 weeks ago. I had a painful rash on my legs, went to an urgent care doctor and she prescribed an antibiotic and an anti-inflammatory to take. I did so when I got home in the morning and again at bedtime. While trying to go to sleep I noticed by heart was beating fast and irregularly. I thought maybe I was having a reaction to the new meds I was taking and went to the local ER. Here they discovered I was in affribullation and started having difficulty breathing. So I was admitted to the hospital, where I stayed for about 2 weeks while they tried to figure out what was wrong. My lungs looked like they were filled with cotton balls on the xrays and I was still having a lot of trouble breathing. (Luckily, my heart went back into sinus rhythm by itself.) So by asking lots of questions and running all sorts of tests, the doc narrowed it down to Wegeners and wanted to do a V.AT.S. on my lungs but wanted me to go to a different hospital that had docs more experienced with it. So I was transferred to the better hospital, where they asked me the same questions and ran a lot of the same tests and came up with the same diagnosis. The problem was the risk of doing a biopsy of my kidney, where there was involvement, was risky because of the fact that I have only 1, and the rash on my legs was now gone,and the lung biopsy was questioned because that was the area that had the most bleeding and they didn't want to take me of the blood thinners to do the procedure, because it would increase the danger to my valve. By doing any of the biopsies, they risked greater harm than good for me.
So, I now have wegeners and was put on prednisone and had my 1st infusion of cytoxan as well as a bunch of other drugs 3 weeks ago. It took them another week to get my blood thinners therapeutic and so I came home on Valentine's Day. I was in the 2 hospitals for a total of 4 1/2 weeks. I spent a lot of that time being scared and looking up wegeners on my smart phone. My doctors were all very caring and matter of fact with me and I agreed with their assessments and plan for treatment.
My mom (age 81) came up from Florida to help care for me and my husband hovers. I have a daughter in grad school in Michigan and a son who is a high school senior at home as well as my beloved cavalier king charles spaniel. I feel very isolated in the fact that I came home at my suppressed immunity and can't really have visitors. I have gone out to various doctor appts (with my mask) and a couple of odd errands with my mom. I was pretty weak after being in the hospital for so long, but am getting stronger. My breathing doesn't hurt any more and I don't get as winded as I did unless I really push it. I am also pretty fatigued and take a nap in the afternoon. So all is stable. I do have involvement in my lungs and kidneys and it is probably in my sinus now too-having ct scan this week. I don't want to seem as though I am complaining as you all have experienced a lot of the ups and downs of this disease, but I feel it is so unfair to me (and all of us!) I have had my share of medical problems and when is enough enough? I never thought I would live past 50 because of my heart and so have lived a full life, having married and having and raising children, so in some ways I feel lucky to have been able to do these things, but there are lots of other things I want to do as well and as of right now with the trearments I am stuck here til I go into remission and then still have this hanging over my head. It is overwhelming to me.
The stories and experiences I have read on this forum do give me some hope and I thank you all for that. I keep telling myself that I just have to get through with this first part and then it will be easier to deal with. I am so happy to have found this forum and look forward to getting to know you all better!