Hi fellow members

Its been a while since I have logged on as I have been offline since around August having my second hip totally replaced.. 

Its now been 4 months since my second replacement and WOW!!!  I have my mobility back and am able to do anything and everything which is GREAT.... 

HOWEVER, on the other hand I have endued multiple complications with my Lupus which the Drs think could be a result of the operation (Lupus has been stirred up and is out of remission and very active again) 

 Aftter having the THR in August in Cairns, Queensland I only went home at the end of October for 3 weeks and had an infection which reslted me being addmitted to hospital for IV ABs.  At day 3 on IV ABs I recieved a call from my Specialist in Cairns advising me they require me back in Cairns within 24hours as my Lupus is active and is attacking my Kidneys - LUPUS NEPHRITIS CLASS IV!!!

The hospital arranged my transfer from Thursday Is to Cairns however it took 3 day sto get me to specialist treatment as we had no available flights.... so another 3 days of pain and waiting.. Finally got to Cairns on the and spent 11 days in hospital - they found not only the Lupus was activiely attacking my Kidneys but my Gall Bladder inflamed and I have a few stones which they cannot do anything with as my immune system is compromised and it would be a high risk... so I have had to change my lifestyle and am now on a low fat diet and under close supervision of 4 specialist as I am starring down the barrel of renal failure with multiple manifestation of SLE...

To knock the Nephritis on the head I was given a 3 day pulse treatment of IV Methlprednisolone starting at 1000mg, 750 then 500 then on day 4 they popped my steriods up to 50mgs with a whole cocktail of other drugs to start treating the kidneys.

In the past I have had really bad reactions to high doses of IV Steriods which havent been confirmed whether its the sterios or cerebal Lupus....  I am in a catch 22 - high steriods arent good for me but I cant live without it.......to date I have had 2 major flare ups where heavy steriods have been used and have caused me to go into a deep depression and also caused steriod induced sychosis!!!  I am now living in Cairns temporarily while undergoing treatment which may take 3 - 6 months at this stage.  Hopefully my kidneys will respond with minimal damage.  Whilst having all the above going on I am now suffering with pain in my feet and ankles - we are quering Ruematoid Artiritis at this stage but I am concerned it could be AVN??? I have another appointment next week and am going to request the Dr to have a MRI onf my ankle as it is starting to become unberable as its the ankles and the mid section of the foot where the toes connect.  Hopefully its not AVN but with my history and steriod use I think it is as its now my usual arthiritic type of pain...

Well thats it for me today - I have to go and prepare to go into hospital for a iron transfusion as I am having problems with my blood counts whcih isnt clear if its due to the Nephritis or if it is the Lupus???

When I am out and have time I will return to read the rest of the blogs that I missed in the few months I was off line and make sure this time I stay in touch...

Good Health wishes to all and in case I dont post before Christmas - Merry X-mas and have a happy and healthly new year!!!!!!!!!!!!

Cheers

Takai

Hi

I think some Drs  understand the patients pain and experiences with AVN once diagnosed however some Drs need to listen more to their patients especially if they have history of a certain disease which the Dr is not familiar with as if any body is to know something is wrong the paitent would know  best especially if the patient has had  the other disease for many years and endued the many complications as I have.

I have had Systemic Lupus Erythamaetous commonly known as SLE or Lupus for 16 years now since I was 15 years old and have had many problems along the way which has resulted in many hospital addmissions therefore heaps of steriod therapy. 

Last July/August  I experienced pain in my inner right thigh which I thought was muscular as I was taking part in Island Dance practice as the Goverment Department I worked for was going to participate in the up coming Cultural Week - this went on for a month then one day whilst at work I felt something was wrong I could hardly get out of my chair and the pain became more intense.  As Thursday Island is a small place I managed to hop in my car and drive home, an hour later I was being slid onto an ambulance pat slide and into the back of an Ambulance and off to hospital.  The pain was so intense I was in tears and had to tighten my shorts around the mid area of my thigh before I would allow anyone to move me as any movement would send pain thought out the whole right side of my leg, hip and back...(I have had 3 children without pain relief BUT this pain I was enduring was worse than child birth x 10...)  I was demanding pain relief.

After presenting to Emergency and going through everything I explained to the Doctor that I had seen the visiting Orthorpedic Specialist from Cairns eariler that month and that an x-ray showed some signs of bone problems in my Knee as I was having problems with my knees for a while and that he was going to try and have me go to Cairns for other tests to check out the extent of the problems in my knee as I was a high risk patient and if they had to do anything to my knee it would need to be in Cairns in case of complications as Thursday Island is a 2 hour flight from Cairns.

The Doctor than gave me morphine continously until the pain had settled, I asked her to contact another Doctor who knew my history as on Thursday Island you do not have a specific Doctor you are treated by whoever in on duty on the day you present - however there are a few Doctors on TI that are aware of my SLE and history (this Dr didnt conatct the Dr I requested as they were not rostered on that day).  Later that night I was admitted to the ward over night for observation.  The next morning while the pain was at bay due to the medication I was discharged and sent home with NO x-ray nothing.... a week later I presented at the Health Centre only to see another Doctor (this Dr knows my history) after expaining that I was in pain and went to hospital only to be dischaged on Endone and Tramadol this Dr gave me a script for more pain relief and advised me that he would be at the Hospital the next day and advised that I need to go tot the Hospital the next day and he would arrange a x-ray and if that doesnt show anything he would arrange a ultrasound of my right leg to rule out possible DVT.  The xray didnt show anything however the ultrasound detected fluid or an infusion in the right hip - he than contacted the Ortho Specialist in Cairns who suspected AVN due to the signs in my knee.  I was put on crutches and advised not to weight bear whilst I waited for an appointment to go to Cairns and have an MRI.  This happened in September - the MRI confirmed that I had AVN and that the head of the Femur had collapsed therefore requiring a Total Hip Replacement at the age of 29.  This was carried out on the 30/09/08.  This operation has been successful to date however my left hip is now giving me greif.  I have had another MRI whcih has confirmed AVN in the Left Hip which the marks are more extensive however the head of the femur is only slightly collapsed therefore I have had a FORAGE (Bone Decompression) which was carried out on the 18/03/09.  Now its a waiting game I am at home on crutches once again and will return to Cairns in 6 weeks for review to see if the FORAGE has made any difference.

Now when ever I have complications and have a new diagnosis I usually resort to the internet to help me understand and to know what to expect with it as I have learnt in the past 16 years that knowledge is an important part of the healing process that is how I came to this site and I find it interesting listening to others stories as AVN is new to me and isnt common in the Torres Strait where I live.

Until next time

Takai

I was recently diagnosed with AVN. After my Spinal Dr ordered a CAT for my back and left hip since Ive been in so much pain for several months. It was found that I have advanced AVN in my left hip. I've already had two spinal fusions and was having the CAT for my back until I asked him to also include my hip. He told me I needed an Orthopedic who did Total Hip Replacement . I was not given anything other than Lortab for pain. I might as well be taking asprin. 

They did schedule me an appointment with a pain management Dr. who I see tomorrow.  I was told I probably have this in my left hip as well since I am also having pain on that side in the groin. They are doing an MRI of that hip in 3 weeks and then scheduling my surgery. I also have been having pain in my right shoulder for the last 9 months so an MRI for that will be next.

I do not believe any of the Drs I have seen to date realize how much pain I am in.  How much pain is one supposed to endure?  I already have chronic pain in my back. When I told my primary Dr I couldn't sleep because of the pain I was given Valium to help me sleep.

I am hoping the pain management Dr I'm seeing tomorrow will be able to give me something other than the Lortabs I am currently taking.

Donna

I have not met a doctor who understands the patient AVN experience, but I am still looking.

I have been to three doctors regarding the AVN in my left knee. The first doctor was my primary care physician, and I don't think he has much of an understanding of AVN. But he did immediately refer me to a specialist who is an orthopedic surgeon and, according to my primary care doctor, he is "one of the best".

My first (and only) visit with the  "one of the best" orthopedic specialist was quite negative. He confirmed that I have AVN in my left knee, and he basically told me that I should just do whatever I wanted because there was no treatment and when the pain became too much to handle and/or when my knee eventually collapsed I would have to have knee replacement surgery. I was so surprised by what he told me that I was basically speechless.

After talking with someone who has AVN and thinking about things for a few days, I asked my primary care physician for a different referral. The new orthopedic surgeon wanted a more recent MRI done before seeing me. He confirmed the AVN in my left knee and recommended that I use a cane for at least six months so that I would put less weight on my left knee. He was not very helpful regarding the issue of pain--basically telling me to talk with my primary care about that issue. He also didn't mention exercise or any treatment option.

I would like to change doctors, so I am trying to find out if there is a specialist in my area who is truely knowledgeable about AVN. Hopefully, that doctor will understand the "patient AVN experience" also.