Hello from Washington State

[rfranzi]

Hi, I just found out a few weeks ago that I have Fibrillary Glomerulonephritis, a rare kidney disease that will lead to dialysis or a transplant. It all started with a routine physical at the end of July. It took a few months to get to the biopsy and to find out what was going on. Navigating the medical system has been a nightmare so far. I am told there is no support group for this disease. Then I realized that there are resources for people with chronic kidney disease, even if it is not my particular kind. Having been battling post traumatic stress disorder and depression and having gone through one of the toughest and most dismal years of my life, this news came like a kick in the head when I was already down. I am honestly concerned about having a heart attack first at this point before I get to dialysis, because I keep having heart palpitations and get dizzy occasionally and just do not feel well. The stress level is high. I am continuing to seek out new doctors and just hope I can find one who I feel has my best interests at heart. I am glad to have found this site and feel it will be helpful as I navigate the complex highway of new dietary requirements, medications, terms, lab results and so forth. A few weeks ago, I walked into the doctors office for my biopsy results and my whole life changed. I am still reeling from the news. I am glad this site is here, it will be nice to have someplace to share how I am feeling with people who will really understand.

[galvo]

G'day rfranzi and . You're going through the wars at the moment, but you've come to the best resource I've found. Stick with us. Ask questions. Rant beserkly. You'll find good company and good answers here. Once again  .

[cloud393]

Welcome.  Ask all the questions you have, I'm sure you'll get the answers you need.

[rfranzi]

Thank you, I much appreciate the welcome and kind words. I am off to the University of Washington to see a nephrologist there. Wish me luck! And thanks again, I will definitely be participating with this forum in the future.

[MooseMom]

I've said this before but I will say it again so that you'll know that you are normal...I have had more physical symptoms from stress and anxiety than I have had from my actual kidney disease (fsgs).  I don't think that most nephrologists address this aspect of kidney disease or of any chronic illness.

Here on IHD, we have people who have all kinds of rare and funky kidney diseases, but we are all in the same boat...on dialysis or facing dialysis or have been on dialysis or are supporting someone on dialysis and just generally hating dialysis.  It is a lonely thing.  It is important to get all kinds of support from all kinds of people.  Your family will love you but might not fully understand.  We on IHD will fully understand but don't have the opportunity to love you.  Use both resources to get informed and supported.  If you can manage the stress, you will find that the rest of it will fall into place at times.  But managing the stress is very hard.  You'll have good days, bad days and incoherent days.

I'm very glad you've joined and am looking forward to hear what the U of W neph has to say!

[VintageVera]

Whew, can I ever relate to what you're going through. I'm still very new myself (diagnosed end of March) and having problems with anxiety and depression. My diagnosis was glumorulonephritis but I'm not convinced that's correct as each of my 3 other direct cousins and one distant cousin with kidney failure each have a different diagnosis. My life has completely changed and I'm spending a lot of time trying to process that.  But I am grateful to have the support of my family -- especially my cousins, and for this site. Keep writing. VERA

[rfranzi]

Thanks, both to Moosemom and Vintagevera - I hesitated to mention the depression and anxiety on here, I have been isolated and shamed by it and my doctors almost seem to treat me worse because of it, like I am an alarmist or something. I am still reeling from the news even though it has been a few weeks, and I am trying to wrap my head around the fact that I am in this fight for the rest of my life. I cannot go back to a few months ago, when other than the ptsd and anxiety, I thought I was healthy. It was so packed in the doctors office today and I just thought, there are so many sick people here! And many of them seemed to be in better spirits than I was. It made me want to be a better person, but being ill is humbling that way. I met with my son after and really explained to him what was  going on. He is only 24 and I didn't think I would have to say something like this to hiim when I was just 50, I always imagined I wouldn't need to ask for help until well into my  70's at least. But he was wonderful and we held each other and cried. He twirled me around like he used to do (we used to dance in the parlor) and he asked me to let him know when I needed something, I was never a good one to ask for help, and I guess that needs to change. I didn't really get any new answers from the nephrologist at the UW, but they are considering an experimental drug called rituximab. We aren't doing anything yet, he wants to talk to other doctors there. We are going to wait for lab results and talk in a few weeks, but he explained my disease and its progression in a way I could better understand it. Anyways, thanks for your comments and support, your strength is helping me to be strong. I am going to try to take it one day at a time and work on my part in the meantime, diet, etc.

[MooseMom]

All of us on IHD have experienced depression and/or anxiety.  It's part of being normal.  I am really, really glad that you've explained everything to your son.  To try to play this down or to hide it just puts extra pressure on you, and you sure don't need that right now.  Sharing a burden can create a closeness and intimacy, while trying to protect someone from all of your fears creates distance.  Your son is old enough to be able to give you the sort of support that only he can give you, so take it and cherish it and revel in it.

When you've thought that you were healthy and it becomes clear that you are not, that is an extremely challening thing to cope with.  It makes your self-image seem out of focus.  It is just one more aspect of chronic illness that makes life more difficult for you.  Your view of yourself ends up having to change, but it doesn't mean that it has to change for the worst.  You may very well discover a strength and tenacity you never knew you had.  You may learn a lot of positive lessons about yourself.  You never know.

I've heard of rituximab...it has been used successfully in transplanted patients who have a recurrence of fsgs in their new kidney, I believe.  Please let us know if you start using it and how effective it is for you.  In the meantime, keep posting on IHD.  Your experiences will be very valuable to the next new member that comes along.

[Jean]

Hi and      to IHD. Glad you found us. There are lots of people here who are in the same boat you are. Maybe not the same type, but still with kidney disease of some sort or another. And, all of us have felt the same as you do, lost, confused and scared. They tell me it gets better and I hope it does for you soon. Keep on posting and reading.

[Desert Dancer]

Hi, rfranzi -

  You've definitely come to the right place. I can't really add to what's already been said except to say that if you're in the Seattle area I'm jealous. You've got access to Northwest Kidney Center and support for some of the best dialysis in the country when the time comes.

Just remember to accentuate the positive. And when there isn't any of that, come lose your mind here. We all understand.                 

[rfranzi]

Wow, I am floored (in a positive way) by all of your comments. It has helped me immensely already just to hear words like normal (something I haven't heard in a long time). What a difference it makes to communicate with people who really understand. I already feel a sense of relief and a maybe I can get through this after all. My heart goes out to each and every one of you, and your strength, kindness and courage have already done wonders for me. I sincerely wish you all the absolute best with your battles and thank you so much for your words of support and encouragement. I am off to see my counselor, who I see weekly for emotional support. She went to Ecuador for three weeks to see her family and just got back, so I have a bunch to tell her. I missed her very much and anyone who is suffering with anxiety and depression, I recommend getting specific help in dealing with it, because as we've said, nephrologists turn a blind eye to this aspect. You're right, it is important to have all the support I can get now. I have always been a "do it yourself-er", as an only child and a single parent, I was sometimes my own universe. It is humbling to ask for help, but such a relief when you get it. It doesn't make me a weak person, just not so alone anymore. You're right, there is a strength to be found in it I didn't know was there. Oddly, my son and I have committed  to more quality time and in a strange way it has enhanced our relationship as we don't take precious time for granted anymore. So, I am learning .......thanks again, your feedback means the world to me.

[RichardMEL]

Welcome rfranzi! You live in a lovely part of the world - I love Washington state, and I miss being able to visit there!!!!

Heavns, depression and anxiety is very common when you're in our "business" ! You're dealing with major stuff that DOES, IS and WILL affect your life. You just found out a relatively short time ago - Of course it is a lot to take in, to process, and to come to terms with. Sorry to break it to you but to me you sound pretty normal

I don't know much about your specific condition, even though having FSGS myself I feel there may be some relationship. Anyway what I *do* know is that what you're feeling is pretty normal, and it's great you've come here and sought us out - we even have quite a few members living in your part of the world.

Just on your point of nephrologists ignoring anxiety and depression - I don't know about that - I've heard a number comment that it's widely seen in renal patients. Perhaps the doctors you have been seeing have not felt comfortable discussing it - I perhaps would ask to be referred to a specialist (you are seeing a counsellor of course, who can help too).

Bottom line is try to not feel bad for how you feel - that will just stress you more. How you feel is normal. Hopefully in time it will get easier for you to get your head around everything going on and what it means for you - specially with support from your doctors, counsellor, family and of course our extended community.

Again, welcome!

 

RichardMEL, Moderator

[Rerun]

Hi Rfranzi, and welcome to IHD.  I live in Spokane.  You have found the right place for answers.  One of our other members Bill P. is a huge advocate on the West Side of the state and I'm sure can help you.  I'll point him to this introduction. 

I'm so gald you found us. 

Rerun, Moderator