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Hope things go good for your son and you. How old is he if you don't mind me asking
A couple of you know that my son has been dealing with a kidney issue since May. He's been doing well, but not getting better like the doctor had hoped, so last Thursday he had a biopsy. The results we received were not very positive. He has a condition called Membranoproliferative Glomerulonephritis, Type I. In short, it is a Immune disease that is affecting and attacking his kidney's.
I have looked up many websites and it's just all too complex for me to completely understand or try to explain. His nephrologist has started him on a regamine of Prednisone and CellCept but she warned us that if this does not improve his condition, he will go into renal failure and need dialysis and a kidney transplant. Not today, not tomorrow, not even next year....we're talking about 6-8 years down the road IF the meds don't slow down the progression. But barring a miracle (and I DO believe in miracles) the bottom line is that he will have a kidney transplant one day.
He's been in good spirits, but I'm sure he's just as scared as I am.
I will keep you updated as things progress and appreciate all of your prayers and positive thoughts. As it stands right now, he will visit the nephrologist on a monthly basis and take the Prednisone every other day and the CeptCell daily for a minimum of two years. Even if the condition goes into remission, she wants to keep him on the therapy to keep the disease at bay.
I wish the news was better. This is all in God's hands and I have asked Him to take control and relieve us of all of our worries. I have to admit, that it's not working yet, but He will eventually relieve me of my worries.
Hope things go good for your son and you. How old is he if you don't mind me asking
I pray things will improve.
Our thoughts and prayers are with your family Sunshine. I hope your son can keep his spirits up. Stay strong.
My thoughts and prayers are with you and your son.
My grandfather had to go through dialysis for the last years of his life and it is not a fun experience.
he just turned 14.
Thats hard, anything with our childern is the hardest. What symptoms was he having to know there was a problem? He's in my prayers.
My thoughts and prayers are with you and your son.
I'm pretty sure you will find a solution
Just prayed for you and yours. Good luck and keep your head up.
Sunshine & Sack,
I will say extra prayers for your son. My heart goes out to you.
You and your son are in my prayers. Just think positive and trust in Him.
Oh my, Sara. I will be thinking of you all for as long as you need it.
My prayers are with you and your family.
God bless you and your Son stay strong.
kidneys are so damn complicated and fragile and hard-working, it's wonder they even manage to work for 70 or so years. There's a lot of ways for them to go wrong.
best of luck to your son.
Stay strong and hang in there guys! You and your son will be in my thoughts!
Looking back we now know he was showing symptons maybe as early November. They were vague and nothing you'd immediately associate with kidneys. During basketball season he complained that his joints were stiff and he'd get winded easy. He was sick 3 or 4 times from mid December to late January with fevers, sore throats etc. (which may or may not be related) then around Spring Break, he started waking up with puffy eyes and face but we attributed it to allergies and started giving him Zyrtek before bed thinking it would calm the symptons down. About 2 weeks before school was out, he told me his lower left leg was swollen and he thought it was from falling weird playing basketball at school. He showed me that when he pushed on the skin, it stayed indented for a long time. I knew then that something weird was going on.
I made him an appointment with his pedi for the following Monday and when they did his vitals, his BP was 168/116 and when the doctor saw his legs he called it "pitting edema" and noticed that it was also present on his chest. He immediately sent us to Kids Xpress at Methodist to have blood cultures run and to have a kidney scan and warned us that they might do a biopsy. His fear was that he was going into renal failure. The scan showed that his kidneys looked fine and he wasn't going into failure so they stepped back a notch and cancelled the biopsy and instead focused on causes for the blood and protein in his urine.
The pedi nephrologist thought he had something called post-infectious glomerulonephritis caused from a strep infection and put him on sodium and fluid restriction and said that should take care of it. At the time the doc said there were three things this could be: post-infectious glomerulonephritis, lupus or membranoproliferative glomerulonephritis but also said that his "complements" were way to low to be lupus or the MPGN. His BP went down in just a couple of days and he lost 8 pounds, so we were hopeful.
Fast forward 6 weeks and a round of antibiotics and still blood and protein in the urine and swelling in his legs. A biopsy would give us a difinitive answer so we had it done last week and here's where we are now.
Sorry...you asked for a slice and I gave you the whole loaf!
Last edited by Sunshine; 07-18-2008 at 09:04 AM.
One of the things she (the doctor) told my son was that when it come time for dialysis (hopefully many years down the road) he'll be able to do it at home, overnight while he sleeps. She says that now days that's done more and more and she would only see him in the dialysis clinic maybe once a month. That was a relief since I had these vision of machines and blood in the clinic.
Scary stuff Sunshine. I can't imagine your fear. I'm glad they got him diagnosed, you know what you're dealing with.
Please keep us updated as you can. Our hearts are with you.
I'm still in shock. Not sure the full impact has hit me yet. But he's really upbeat right now and thinking of the positives: they got it early, there's very little scarring and the meds MIGHT be able to put it into remission.
Thanks to everyone for all their expressions and concerns. It's appreciate more than you know.
I'm confident your child will become a healthy active adult.
Your family is in my prayers.
Sara, you know how much I care about you and your family. We are all praying for him and I hope he takes to treatment well and won't need a transplant. But even if he does, things are going to be alright. You are strong and I'm sure he is too. Let us know if you need anything. You have a lot of people who care for you, so lean on them if you need to do so.
I just sent you a PM that might be helpful.
I am so sorry to hear this. I will say a prayer for your son right now. I hope everything goes as well as possible.
sorry to hear that , hope all goes well
one question ? if he has to take meds, then maybe dialisys and all that he has to endure, is it possible for him to just receive a kidney now ? from one of his family members such as yourself or it´s too early ?
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