newly diagnosed...

[marylz]

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!

[mishb]

Welcome Mary,
Gosh you have been through a bit.
As I mentioned in your other post, you will find some very knowledgeable people on here and you will also be able to help others with things that we have no idea about.....like your heart troubles.

I am glad you found this forum and I hope things look up for you quickly so that you can continue to get out and about and do all of those things that you have on your list.....and more.

[Jaha]

Mary,
Glad you found us, sorry you had to. I know it is a very scary disease, but it is great to come here and get answers and to have contact with the outside world, when your confined to 4 walls. I hope you have a great team of doctors,because of all your complications. You will be really exhausted off and on with this. I too have lung involvement along with other conditions and it is very hard to except this at age 54. Keep your chin up and know that we are here for you. Best of wishes for you on some improvement to your health. My dr told me right away "baby steps", but I sometimes have a hard time with patiences.

Jana

[Dirty Don]

Welcome to the site Mary...we're all here for you and each other. Please ask as many questions as possible and do share what you know already. There are many phases to this disease, and they vary between all of us. There are no guarantees as I'm sure your docs have told you. The main thing is to get docs who know and understand AND have experience with WG...they will be your best guides. Try to be patient, try to be upbeat...sighs...it's a long road and you've already traveled a longer one thus far. Hang tough...it's really all about you and how you handle it now...best of luck!

[annekat]

Welcome, Mary, to this great forum community. I think it has saved the sanity of many of us and perhaps even our lives. I look forward to hearing more from you, how things are going. My heart goes out to you, dealing with WG along with your other complications and issues..... many of us are lucky enough to have a simple case of WG, so far, without the serious extenuating circumstances that you have.

I was wondering, if they think you may have WG in your sinuses, why can't they do a biopsy there? It is much less invasive than doing one in your lungs or kidneys... unless possible bleeding from the nose would be an issue with your blood thinners? My nasal biopsy was done on the spur of the moment right in my ENT's office, with me fully awake, and that's how I was diagnosed. But I know every case is different, and it sounds like they have already decided you have Wegs, anyway.

Best of luck in dealing with all this and moving toward remission.

[Debbie C]

Hi Mary, glad you found our friendly group but sorry you had too ! You sure have been thru alot and I was surprised to read that thru everything you've been thru that they are just now realizing you have 1 kidney,you think they would have noticed that before. But like everyone is saying it is rough learning you have this disease and everything you read online scares the crap out of you. But just make sure you get a good wg dr. and kidney dr. and slowly things will get better. Keep us posted and take care of yourself....get some rest !!

[Marci]

Hi Mary, I'm glad you're here. I'm new here too and everyone has been so helpful. Sorry you've had to go through so much. Seems like there is no understanding why some people get more than their fair share of bad. Hang in there and from what I've seen here so far you can come here to get any question answered or just to vent. The members here sure have steered me in the right direction and I'll be forever grateful for the push they gave me.

[marylz]

Thanks everyone for the warm welcome! I am trying to look at this with a long view, but, as you know, in the beginning it can be difficult. I have been "lucky" in a way because medicine has been able to help me in the past and I put a lot of trust in doctors. I think I have found some good, caring drs and feel that they do have my best interests in heart.
Anne- I think they don't want to biopsy the sinus because of the bleeding issues.

Thanks again and I look forward to getting to know everyone.

[annekat]

Thanks everyone for the warm welcome! I am trying to look at this with a long view, but, as you know, in the beginning it can be difficult. I have been "lucky" in a way because medicine has been able to help me in the past and I put a lot of trust in doctors. I think I have found some good, caring drs and feel that they do have my best interests in heart.
Anne- I think they don't want to biopsy the sinus because of the bleeding issues.

Thanks again and I look forward to getting to know everyone.

The bleeding issue with the sinus makes sense as a reason not to biopsy there. I didn't get much bleeding, as they mainly biopsied the bony part of my septum, where there was already a hole from the effects of the disease. But every case is different, and since bleeding is a problem for you, sounds wise not to go that route.

Your doctors do sound very caring and like the types who will use whatever resources are available, and who will admit and get help if they feel they are in over their heads. They can consult with vasculitis specialists for free, which they may already know, and a list of these specialists is available on the Vasculitis Foundation website. If ever you feel that you know more than your doctors, for example, after reading this forum for awhile, or that they aren't listening to your concerns, then that would be a reason to look elsewhere. I am in a situation something like that.... my doc may know more than I think he does about Wegs, but he is not a specialist, and doesn't seem all that interested in consulting with one, nor does he respond very well when I voice my concerns about things I've learned about here. If I had a worse case of Wegs, I'd be in big trouble, and in any case, need to find a more suitable doc somewhere in my state who will establish a relationship with a specialist. There are people on here who will keep nagging me until I do it!

[Natalie]

Hi and Welcome Mary , what a story you have , you have been threw a hell of a lot in saying that you would be a strong lady , chin up and and hoping you start to feel better soon and able to manage xx