I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: MandaMe1986 on May 04, 2009, 05:24:10 PM
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Well I went in today. I got some good news. Well first my kidneys are still there. I am dumping about 7 grams of protein. That was to be expected. I am still in state 4 kidney failure. But I was really scared to go to this apt because of what I was told last time I saw a Neph. I was told that we were stopping treatment because it wasn't working and at the rate I was going I was gonna need to start D within a year. But today I was told that my Lupus is in remission. So yey for that. And because my kidney problems are brought on by the Lupus. There is a good chance that as long as I keep my lupus under control I will be able to avoid D for a bit longer. I can't even explain how this makes me feel. I have gone through so much already with my health. And finally I fill like I am going to be able to take a brake for a bit. I know I am still sick and I still need to watch stuff. But for the first time in years my Lupus is in remission. And I am just so happy. One of the first things I wanted to do was come on here and share it with all of you guys. You guys have come to mean so much to me in such a short time. Thank you to all of you.
~Amanda Marie
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I am so glad for you MandaMe. :cuddle; Take a deep breath and enjoy the news. You do deserve a break :2thumbsup;
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:yahoo; :2thumbsup; :clap; I'm happy for you MandaMe!!
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Amanda,
That IS wonderful news. :clap; :cheer: :clap; :cheer: :clap; :cheer:
Here is a celebration cheer! :cheer: :cheer: :cheer:
And flowers! :flower; :flower; :flower;
Let's break out the tequila! :2thumbsup;
Hooray! Hooray! :bestwishes;
Aleta
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Thanks you guys. Yes yes tiquila for everyone!
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Amanda Marie
break out the Blue Bell :2thumbsup; :2thumbsup; :2thumbsup; :2thumbsup;
and who has a birthday is about a couple of weeks or 13 days
what a great birthday you will have
:cheer: :cheer: :cheer: :cheer: :cheer:
what would crawford say to freaking ice cream with a shot of tiquila
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Amanda Marie
break out the Blue Bell :2thumbsup; :2thumbsup; :2thumbsup; :2thumbsup;
and who has a birthday is about a couple of weeks or 13 days
what a great birthday you will have
:cheer: :cheer: :cheer: :cheer: :cheer:
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ps
I am so happy I seem to be repeating myself :cheer: :bandance; :cheer:
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Speaking of birthdays its the first one in 4 years I haven't not spent in the Hospital! Another YEY there!
Ice Cream and Tiquila now that is a party. Haha
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oh cool idea
any left over breakfast with that tequila cream soda
you will have the best birthday --------- do not kiss any swine stay well :beer1;
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:grouphug; :bandance;
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Great news, Manda!!! I am so happy for you.
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:thumbup; :yahoo;
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Hey ho the sun's shining for you Amanda.
:flower;
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Great news, thanks for sharing with us :flower;
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MandaMe, this is good to hear. I hope you can stay in remission a very long time and keep you kidneys even longer.
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:welcomesign; Great news! Please tell us,
how did your Lupus (SLE) go into remission?
Do they know?
Did you take any special
anti-inflammatories,
a special diet or anything else?
Or did your Lupus run its own course,
got "burned out" and you were lucky?
My own end-stage renal failure is also
due to a flare-up of MCTD/SLE and
your story certainly gives me hope again!
It is great news! Good luck!
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:thumbup; Good to hear MandaMe, thanks for sharing
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Great news manda :2thumbsup;
I am glad you are getting a break and have gottten such good news.
Whatever you are doing keep doing it.
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So glad to hear the good news, Manda! I think you deserve a lot of credit for educating yourself and taking such good care of yourself.
You rock! :2thumbsup;
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:yahoo; Manda, whatever you are doing, keep doing it. :yahoo;
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:welcomesign; Great news! Please tell us,
how did your Lupus (SLE) go into remission?
Do they know?
Did you take any special
anti-inflammatories,
a special diet or anything else?
Or did your Lupus run its own course,
got "burned out" and you were lucky?
My own end-stage renal failure is also
due to a flare-up of MCTD/SLE and
your story certainly gives me hope again!
It is great news! Good luck!
First let me say thank you to everyone. I am still very excited this morning.
Second, that is a very good question Kristina. They are not sure. When I stooped treatment, the treatments I had stopped were Cytoxan Chemotherapy and Rutoxin. And at that point I had been taking Cytoxan for almost a year. And before that I had taken Cyclorsporin and Cellcept. So I am not sure. It could very well be that all the treatments kicked in once they pulled out, or it could be that it ran its own course. I really don't know. We didn't expect it for sure. My Lupus has only been in remission once and that was when I was 18 and it soon came back full force when I had my kids. I have been working to get it just under control for a really long time now. So this really just came out of the blue, it went from kicking my butt to being in remission. I am just knocked on my butt with shock.
But yes don't ever give up hope. I would be one big blob of depression if I did. Maybe they can keep you where you are at for a long time. What course of treatment are you going through right now? And how long have you been doing it?
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:yahoo;
Good news from a doctor - are there pigs flying outside your window, too?
Stay well, amanda!
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Sensational news Amanda!!!! So happy for you!! :clap; :clap; :clap;
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:yahoo;
YIPPEEE!!!!!!!!!!!!!!!!!!!!
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"But yes don't ever give up hope. I would be one big blob of depression if I did. Maybe they can keep you where you are at for a long time. What course of treatment are you going through right now? And how long have you been doing it?"
Dear Manda thanks for your kind thoughts. I have been in a flare-up of MCTD/SLE for many years and through these years my Creatinine has gone up steadily (436) and my GFR has gone worse. I did have one course of Retuximab- and Metholprednisolone-Infusions which the Neph thought would stop my inflammation. This course of medication (infusions) did not stop my kidney decline and did not stop the flare-up dead in its trucks.
I wasn’t offered any more treatment and I still have flare-up symptoms and try very hard to find a specialist who might be able to bring the flare-up under control as I think this would stop my kidney deterioration. I find it impossible to find a doctor who can deal with the combination of my medical history and the complicated rare type of MCTD/SLE I suffer from and I was disappointed when the Mayo-Clinic declined to help me. This was quite a shock because I thought if there was some hope it might be with the Mayo-Clinic. I approached them even though I haven’t got any money but my hope was that they would take me on as they sometimes do with very rare cases using some philanthropic means. Thanks for your interest and good luck!! I do hope that you remain in remission for a very long time!!! Kind regards.
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It's always great to hear some good news! Enjoy it... :clap;
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Well I feel for you. For the longest time no one wanted to treat me because of the number of problems I have. But I was really lucky a couple years ago to get a really good neph who was willing to treat my kidney stuff, and a romatology doc who was willing to over see my lupus. My Lupus is rare too cause it doesn't show up in lab work. So it took them a really long time to even decide what it was I had that was killing off everything. So I do understand what you are going through.
Like I said just don't give up hope. If nothing else a little bit of faith makes going through all of this easier. I do wish you the best of luck Kristina.
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Dear Manda, it seems we are in the same boat with regard to the diseases.
It will be very interesting to see how your kidney-function goes!
As you are in remission I wonder if the Creatinine-GFR-Urea will either remain static, slow down or even get better!
I keep my fingers crossed!
The trend of my Creatinine and GFR shows it to be getting worse,
the Urea-level seems to get up and down a bit, between 16 and 20,
so I don’t know where this is going.
I haven’t got any disturbing symptoms yet like water-retention, sickness, itching,
sleep disturbance or going off my food, perhaps this comes later as the Urea creeps up.
How did you find your Neph and rheumatologist? Did you research? And if, how?
I have contacted many, many support groups for rare diseases and whilst they are very sympathetic,
they have no power or teeth to help/assist me find the type of neph and rheumatologist I need
who are familiar with MCTD/SLE/end-stage-renal failure.
Do you go to a special teaching hospital?
Twice I was sent abroad for diagnoses of MCTD/SLE
because it seems so complicated (1995-SLE-Lupus, 2003-MCTD etc.).
Like you nothing ever showed in the blood tests, so I had great difficulty.
Unfortunately, this option of being sent abroad does not exist any longer.
I feel strongly that I have a flare-up of MCTD/SLE destroying my kidneys and I
think that if it can be brought under control my kidney deterioration might be halted
or even get better again.
I agree with you, the people here at IHD are great and they support us
who are trying to stop the slide towards a dialysis.
I find this quite noble of them to be so honest!
If you can suggest anything further it would be very much appreciated.
All the best and keep flare-free!
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It dose sound like we are in the same boat. The fact that you still haven't gotten any symptoms is a good thing. I think water retention is the worst the itching isn't that much better though. You known I did end up switching hospitals. I wanted to go to a teaching hospital. And I made an apt with the head of Rheumatolgy. That was the first right move I made. I figured the head had to be the best the hospital had to offer. As for my Neph that was just luck. He turned out to be a grate doctor. But if you can I would research the theaching hospital near you, and find out who is the head of each department. Then get a primary to give you referrals. Once that is done call and make an apt with those docs. Tell them you don't want to see that doctor. Don't let them tell you they can't do it because of it being a teaching hospital. You can make an apt with them. If they give you to much trouble contact the hospitals patient advocate and let them know your situation. They should be able tot get you an apt. Best of luck to you sweetie. Keep me updated on how everything turns out.