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Old 05-09-2012, 07:18 AM   #1
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davekothi HB User
Lupus/AVN of the HIPS

I need to get some stuff off my chest and thought this may be the right place.

My wife was diagnosed with Lupus when we first met, almost 5 years ago. Her symptoms were standard for the disorder; purple fingers, hair loss, bruises, random rashes, extreme fatigue. The doctor at the time suggested she starts to take Plaquenil, however, we wanted to have a child very early in our marriage and opted to wait until she gave birth. On Christmas Eve of 2011, she gave birth to our beautiful baby boy. That said, her pregnancy was tough, to say the least. Please allow me to explain:

During her second trimester, at a routine doctorís visit, they discovered her blood platelets were extremely low (around 23,000) and to avoid bleeding, they started her on a high dose of steroid (Prednisone). Her body responded well to the steroid and she went to the Hematologist every week to get her blood work done to determine her next dosage amount. During the end of her 2nd trimester and beginning of the 3rd, she was then diagnosed with Gestational Diabetes. She had to take insulin for the reminder of her pregnancy and managed her diet well. 30 days before her due date, her water breaks and we rush to the hospital only to discover she had Preeclampsia. She had a 19 hour delivery and towards the end, she was forced to have a C-Section. She recovered slowly but did and we came home 14 days later from the hospital (our son was born 4.4 pounds and didnít eat on his own/build her own blood sugar so they kept him at the NICU for 2 weeks and my wife refused to go home without her son).

A month after giving birth, while still on Prednisone (low dose at this time), her platelets dropped again (around 11,000) and they started her back on a high dose. During this time, she started complaining of pain around her groin area but we didnít see any doctorís right away and she managed the pain by taking a Tylenol, as necessary. A month later the pain got so bad, we saw an Orthopedic Surgeon who ordered an MRI and X-Rays. The MRI/X-Ray shows that she now has AVN of the HIPS. Her right hip as at stage 3 (out of 4, I believe) and her left hip is between stage1 and 2.

We now have to make a few decisions:
Left Hip Ė get a core decompression surgery
Right Hip Ė either a hip replacement or a bone graft

We have met with a few Ďtopí doctors in New York and the answer is pretty consistent for the left hip, go for a core decompression. We are still thinking about the right hip. We were introduced to a surgeon at Duke University who is an expert of AVN grafting and are thinking about making the flight/drive down south to meet with him. However, the few surgeons we have met to date all suggest that my wife cannot handle the long grafting surgery (estimated to last between 9 Ė 11 hours) due to her ongoing health issues (platelets, lupus).

One thing I forgot to mention during my entire rant; MY WIFE IS ONLY 30 YEARS OLD! If she gets a hip replacement now, sheíll probably need it again 20 years down the road. I also do not want to risk her life by going for a bone grafting surgery. My wifeís biggest fear is that she will not enjoy our sonís future because she will not be as active as she is now. She dreams of running after him in the back yard or all three of us playing some hoops in our driveway. Iím heartbroken to see my wife this way, so early in her life, so early in our sonís life, so early in our marriage.

I truly needed to get this off my chest but in doing so, I am hoping get some advice from anyone and everyone.

Thank you for your time.

 
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