so my protein levels stayed at 3.7, even after I upped my cellcept to 1500 vs 1000. I am feeling very sad and disappointed, frustrated, and depressed. I want this over. I want to be healthy. I want my nephrologist to be completely honest with me, will I ever reach remission? will I need another biopsy? do I have fsgs?
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I think it's impossible to know if you will ever reach remission. There are other drugs that have been used to treat MCD. It's possible one of those other ones works better for you than CellCept. Perhaps, it is something you can discuss with your nephrologist.
Before I started the switch from prednisone to cyclosporine, my nephrologist mentioned sticking me again if I didn't respond well to any kind of treatment to look again for FSGS.
But if your protein levels were at 9g before and are now at 3.7 while on just CellCept, that is partial remission. What did your nephrologist say?
You have every right to be scared, depressed, sad and want to be well. These diseases truly sucks!
My kidneys shut down within four months due to FSGS so remission is something I'm not familiar with, though I know it can occur.
Remember that we are still at the beginning of the learning curve for FSGS and similar diseases.
Do not hesitate to get a second or third opinion from reputable nephrologists. If your nephrologist is not currently connected with a university medical center, you may want to seek one. Once you get the information you can always choose to stay with your current nephrologist. It may be comforting to ride the rollercoaster with someone you trust.
You very well may need another biopsy. You may never go into remission. You may have to go on dialysis at some point. You may want a kidney transplant.
All these things may or may not happen. No doctor will know for sure. Each of us is different and responds to treatment in unique ways.
You will most likely find a plateau that will become your new normal. You'll find that you will adjust. But, a valley may follow each plateau. You may feel worse, but you will need to find the resolve to deal with it. Climb out of the valley and reach for new heights.
It will feel like you can't do it. But you can. Remind yourself that you are reslient. Remember that the sun will shine tomorrow. It won't be easy, but the better you prepare yourself for a long and bumby ride the more manageable it will be.
Take time along the way to grieve. But take more time to live. You are not dead. You merely have a chronic illness. There is still much life to live. And it is up to you to live it fully, regardless of what comes your way.
Cheers! Erich
Thank you Erich. I too have been getting down in the dumps and know that I am very lucky it is a chronic illness not a killing illness. Simple process but it is what i have to get me through. My biggest worry is that soon i will run out of energy and need time off. Then I won't be able to take care of my bills or my house. It scares me. I don't want to go into that valley. alone.
Get more informative opinions vannessakb right away. if your not comfortable with the doctor, switch!
I just wanted to tell you that you should not be sad but be happy that GOD gave you another day to be alive. I have membranous GN and sure it sucks to have to go to the lab, the coumidin clinic and the Dr's office three to four times a month but I am happy to be alive another day. I am going to be happy until the day that I die and now that spring has sprung I am even happier now, no more cold lots of sun and the trees are in full bloom;) so turn that frown upside down and be glad that you get to see all the wonderful things that are happening in front of you. By the way I have delt with my problem for three years now and I am not even close to remission dont even know what it means. ;) Have a good day and GOD bless you.
Thank you ALL for your thoughts! It is a REALLY hard time of the year, my brother in law passed away a year ago on the 12th, and it is hard. We just wanted some good news. I am so THANKFUL for my life. We have had the worst year ever, but it has made my husband and I even closer. We will get through this. I do think I am going to go with another neprhologist here in Omaha. I visited with a doctor through Creighton University, he is the one who told me I may never reach remission (that would have been good to know a year ago) and that children are only a possibility. EVERYONE is encouraging me to go to Mayo, but I am teaching summer school till the end of June and I am going to a music festival with my friends in July. And then it is back to school mid August. I just don't want to ruin another summer with this. I have let it consume me too much.
I am BLESSED to be graduating on the 18th with my masters degree. I have a wonderful stepson Calvin, who I have been with since he was one (he's six now). But he treats me like I am his mother, he is such a good boy!
Again...Thank you for all of your thoughts, it is so nice to hear everyones different perspectives...
Enjoy your day...
vanessa
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