July 03, 2004
Day 1 Introduction
It all seems like a blur now, that day back in October of 2002. I had had severe groin pain for about 8 months. I think the doctors thought I was crazy. I had x-rays and MRIs and nothing showed, yet the pain got worse. The first MRI was in March of 2002. I thought I had pulled a muscle in my groin. The doctor called and said nothing was wrong. I continued to complain to no avail. Finally in October of 2002 my husband went to the doctor with me and we said you have to do something. Walking was becoming harder and harder. The doctor sent me for another MRI and not 8 hours after having the MRI the phone rang and it was the doctor saying we needed to talk. He said you have Avascular Necrosis (AVN). I said what, I had never heard of such a thing. He said that my hip had a crack in it and he had already set up an appointment with a specialist in the morning.
I saw the specialist who explained this disease to us and said at this point my hip was so advanced my only choice was a hip replacement. I cried. I was only 42 years old. How did I get this disease, I asked? He went over a list of possible causes and the only one that fit me was steroid use. I was on prednisone for asthma for quite a long time. In a matter of 3 weeks I had donated blood and was having my left hip replaced. I still knew nothing of the road and pain that was ahead of me.
Since November 18, 2002, my first operation for Avascular Necrosis (AVN), which was my hip replacement, I have had 7 operations and am facing many more. I have since had MRIs on most of my joints and have found that I have AVN in both hips, both knees, both ankles, both shoulders and my left femur. Talk about changing a person's life overnight. My husband's and my world has changed emotionally and financially. It had taken a toll on our children and our families. I will tell you that the pain that goes with this disease is unbearable most of the time.
To date I have had Core Decompressions (CD) on both knees, the right hip, and twice to the left femur. A CD is where they drill holes in the diseased bone with hopes of starting new blood flow to that bone.
Well this is my introduction. I will go into daily life and each operation in a later post.
Posted by Karen at 02:43 AM | Comments (1)
July 04, 2004
My first operation (THR) Nov. 2002
My first operation for AVN was a Total Hip Replacement (THR). My husband and I went to a class about a week before to watch a movie and learn the do's and don'ts after a THR. I do recommend anyone facing replacement surgery go to one of these classes. I spend a total of 5 days in the hospital.
I remember waking up in the recovery room not being able to feel my legs and thought hey this isn't too bad. Once I was taken to my room the real horror started. Once all the medicines had worn off it was the most horrible pain I had ever felt. I laid there in the bed with a pizza wedge between my legs, ringing for the nurse and no one came. I could not walk and that is when panic sank in. They had forgotten to put the medicine in the morphine pump. Once we had that all straightened out they tried to start therapy on day 2. My blood pressure dropped so low they had to put me back in bed. Needless to say that by the 5th day and time for me to go home, I had little to no therapy.
When I got home my living room was set up like a hospital room. There was a hospital bed, potty chair, grabber, a little thing to help put socks on and a bed pan. You will need everyone of these things. My home therapy was 3 times a week. This was a real slow process also because the pain was so bad. I had to go to the ER twice for what they thought were blood clots, but that proved not to be the case. I had such horrible leg spasms where my leg would draw up and sometimes these would last for an hour or more. I would scream and cry in pain. I felt so bad for my husband who felt so helpless not knowing what to do for me. My self esteem was also shot, since now my mother or mother in-law would have to stay with me, bath me, put me on the bed pan or potty chair. I felt like nothing. I had lost so much weight. The pain made me sick, the pain medicine made me sick and the medicine they gave me so I would not get sick made me sick. One day my husband yelled at me and said you have to eat. I don't care if you throw up you have to get something in you, and he started forcing food. I finally did get enough therapy that I was walking with a walker pretty good. My operation was in Nov. and I really did not start feeling like myself until Feb. when I started walking with just a quad cane.
Once I was getting around a little better and getting my strength back I started searching the internet for AVN. I found a wonderful on-line support group. http://health.groups.yahoo.com/group/avnsupportgroupinternational/
This group has been my life saver. It is full of so much imformation on just about every subject and question you could have about AVN. The people are the greatest. You can cry, vent, scream or share something positive. I have learned so much from other people's experiences in the group. I do recommend this site for anyone that has AVN or has a family memeber or friend with AVN.
To sum this all up knowledge is power so have all the knowledge you can before any replacement surgery. I am facing another THR on the right side and don't know how I will handle that one. They say you forget the pain but so far that is just not the case. I cry just thinking about having it done again. This was just the 1st operation of the seven I have had so far.
Posted by Karen at 07:48 PM | Comments (0)
July 05, 2004
It's going to be a bad day
I had about 40 people over yesterday for the 4th. I really was on my feet too long so I had no sleep last night. The pain and spasms just would not let up. With two bad knees, a bad hip and the ankles acting up standing for any length of time is not a good idea. This disease has robbed me of so many things that I use to do. This is one reason I went ahead with the cookout yesterday, I wanted to feel normal. The only thing is the cookout made me feel worse in more than one way. I can no longer play games, shoot baskets and I guess I get jealous when everyone else is doing it.
Now today I am so down. It is going to be 90 degrees today and the sun is shining. We have a boat and I love the water and I love to fish. I have only been able to go out in the boat 1 time since I was diagnosed with AVN, and that proved to be a big mistake. My husband and some family members are taking the boat out today and I feel sad. I try not to show my husband how upset I am, because I want him to be able to enjoy life, but in the back of my mind I am crying out WHY ME? We have sold the camper and boy I love to camp. Can you tell I am a real outdoors person? So you can see my life really has changed. While everyone else is out doing what they love I am writing in a journal and crying.
I have tried to find other things to take up my time, but it is just not the same. Some days I am so depressed I just lay on the sofa feeling sorry for myself. So unless I can snap out of it, this morning it is going to be a bad day.
Posted by Karen at 04:59 AM | Comments (0)
July 06, 2004
5 months after my THR
Well finally by March I was really feeling like myself after having the THR in Nov. I was getting out more but still had a lot of pain in the right hip and both knees. My Othro. ordered MRIs and lo and behold I was scheduled for surgery again in April.
The pain in my right groin and both knees was becoming almost unbearable when the Othro. said let's try Core Decompressions. I had always heard this was not the way to go, because rarely did they work. The doctor that I see is world known for AVN so I thought I would try it. He decided to do both knees and the right hip all at the same time. This scared me to death since I had heard what pain you were in after CD'S and I was still recovering from my THR. Just 5 months to the day after my THR, I went in for bilateral knee and right hip CD'S. I spent the night in the hospital and was released the next morning once they saw that I could bend my knees and I could walk with a walker. The holes were small that were drilled in my knees and hip, but still caused a lot of pain. The gases that build up when a bone is dying is what causes so much pain and a CD is supposed to relieve that pressure, with hopes that new blood flow will start.
Once home the therapy started again and I was right, the pain was almost as bad as my THR. It only took about 4 weeks before I realized that that the AVN pain was back and it was not pain from the operation. I cried thinking why did I go through all of this for nothing. Now a new problem started, my left leg started having spasms. From the hip to the knee, the femur would freeze and I could not move my leg until this let up. When I went back for my 6 week check up, we discussed this and a new set of MRIs was ordered for the left femur. It showed dead bone and a build up of pressure in the bone. We decided to watch this for a while to see what would happen.
In July my family took a trip to Disney. I don't know what I was thinking, but we had promised our granddaughter and I didn't want to disappoint her. I tried walking the first day we were there in one of the parks with just my cane and quickly learned this was not going to work. We had to get a wheelchair for the rest of our 9 days there. The pain in my left leg continued to get worse and at one point the leg swelled so bad we had to go to emergency station. Soon everytime I would put any weight on that left leg these spasms would start.
By the end of summer I could not take the pain and depression had really set in. I spend a lot of time on the sofa, crying and sleeping. This disease robs us everyday of something and the pain never seems to be under control. My husband did not know what to do for me or how to help. I started staying in the house, not getting dressed and really had no interest in anything. I just wanted one day of NO pain. I wanted my life back, I wanted to be normal again. I knew by the way that my femur, hip and knees were acting that I had more surgeries ahead of me.
Posted by Karen at 04:59 PM | Comments (0)
July 09, 2004
VACATION July 9 - July 18th
I will be leaving on vacation in a couple of hours and will return on July 19th. I will continue with the rest of the story then. Love and Peace to all.
Posted by Karen at 05:18 AM | Comments (0)
July 20, 2004
I am back
Well my vacation is over and I am not sure that is a good thing. My first day back was filled with my oldest daughter going into the hospital with pneumonia and viral meningitis. I had my follow up with my Othro. And so on. Why did I come back?
I saw my Othro. yesterday for a follow up from my last operation which was May 6th, a CD on the left femur. I told him I am still having the same problems and the leg is still freezing up. Also a new pain has started and that is below the knee and ends right at the ankle. We did some x-rays and decided we are going to wait for about 3 months to let my body build up some before we proceed with anymore operations. I am in constant pain on the left side and now the right hip has decided to join in. I had a CD done on the right about a year ago and now the same AVN pain is back along with the groin pain. It is hard to walk when the left and right are both in so much pain. The Othro. said stay on the pain regiment that have been on. That is MS Cotin 30 mg every 12 hours and Morphine Sulfate 15mg 1 to 2 pills every 3 or 4 hours. I am back to not being able to sleep. The pain wakes me after about 2 hours and then I am up.
While on vacation my legs were killing me. I guess walking in the sand was too much. They hurt so bad one day that I didn't think I was going to make it. I have just lost so much since being diagnosed with this horrible disease. I feel so cheated and robbed of all the things I use to do and want to do. I guess now that I am back home I am starting to feel depressed again. I was hoping for a good report from the doctor but I guess I should have known better.
Well off for a nap.
Posted by Karen at 04:10 AM | Comments (0)
July 23, 2004
5 months is the magic number
OK so far we have talked about the total hip replacement (THR) in Nov. 2002, 5 month later I had the core decompressions (CD'S) on both knees and the right hip that was April 2003.
Now 5 months later Sept. 2003 I am going back into surgery. The left femur that we had been watching is finally shot. The pain has been off the charts. The leg has been freezing up with spasms and when this happens all I can do is scream. This is happening more and more and lasting longer each time. I got to the hospital and back into pre-op where the doctor talked to me about all the possible things he could find. The next thing I knew I was waking up in the recovery room. This was scheduled as an out patient, so in about 2 hours time I was getting ready to go home. My leg was bandaged from toe to hip, and I was instructed only 30% weight bearing for 6 weeks. The pain was there but it was 100% better than the AVN pain. About a week after I was home therapy started again. I did well but was having problems with the crutches since my shoulders are in stage 1 of AVN/ON. We switched to the forearm crutches, but believe me they are tricky when getting used to them.
I kid you not about 4 weeks after the operation the AVN/ON pain was back and full force. I cried the entire day and just asked why? I had gone through all of this for nothing. I got very depressed. I called the doctor and he said it was still to soon to know if the CD had worked, we would just have to watch and wait and stay on the pain medicine.
There is no way I can explain to anyone what it is like to wake up in pain everyday. You start not wanting to go to sleep at night, because you know what the morning will bring. Well this is what happened to me. I stopped sleeping and cried all the time. I just wanted one day with no pain. Remember not only is this femur hurting but so are both knees and the right hip. I can take the achey ankles and shoulders. Depression really set in, my parents and husband became wrorried. First I will tell you like I told them. I am not shelfish enough to hurt myself. I love my family way too much for that, but wanted to be out of pain. Through the help of my husband, family and Pastor we worked through this and I started coming around. Knowing I still had many operations ahead of me. What a life, waiting to heal to be cut on again.
Posted by Karen at 08:27 PM | Comments (0)
This time was only 4 months
The strangest thing happened. I happened to get a copy of my last right hip MRI. While reading the report I saw where the radiologist talked about the necrosis in the hip and also there was a 4cm pelvic mass. This MRI was taken back in June and not one person had talked to me about this mass. I called my Othro. and he said he didn't even look at the report just the films and he thought it was just bowel backup. I called my GYN who got me in to see him in 2 days.
My GYN ordered an ultrasound and this thing had really grown in all that time. He set up the surgery date for the following week. He talked to my husband and I about all the things this mass could be. He said if it was cancer then all this wasted time could mean a big difference. I cried and cried, not again and why me. I am tired of getting cut on and now something that had nothing to do with AVN/ON. He told us the incisions would be small and I could go home the same day. Well you all know me by now, nothing is easy. This mass was so big and hard they had to cut in 2 places and through the muscles. It would not break up and they had to end up taking both ovaries and my tubes. When I awoke in the recovery room they had a morphine pact in my back. I knew this was not a good sign.
I was admitted to the hospital since the operation was more detailed than expected. I had a very bad night. Along around midnight I called the nurse. I told her I felt like I was slipping away, everything sounded like it was under water and I could feel my heart beating through my ears. She called in a doctor right away, my blood pressure had gone way too low. They started pumping me full of IV'S and taking my blood pressure every 10 minutes. This went on all night. They thought I was having a reaction to the pain medicine. Morning came and believe it or not they released me to go home.
I had been home for about 2 hours when I told my parents I just didn't feel right. I felt my heart in my head and ears. This was on a Thursday. I felt like I was getting weaker and weaker and I was scared to death. Finally at 5am on Friday my husband and I called the doctors emergency # and they called back a little before 8 am. They asked me to come into the office. By this time I could not walk I was so weak. My husband put me in my wheelchair and off to the doctor we went. Once back in the examing room, I let out a loud scream. When they went to remove my clothes I saw that my entire middle section and up both sides to my breast were a dark purple. The doctor told the nurse to do a finger stick. He called the hospital ER and said I was on my way. I was bleeding internally.
Talk about being scared to death. I thought I was going to die. My husband called my parents who arrived very quickly. They took me in for a CT scan that showed where I was bleeding from. They started pumping me full of IV'S again and waited for the doctor to get there. Once the doctor got there I was admitted again and needed a blood transfusion. I told them this is what was happening during the night and no one would listen to me. They just kept saying it was the pain medicine. Well after 3 pints of blood I started to feel like myself again, just terribly weak. I stayed another 2 days in the hospital then was released to go home.
The pain was off the charts from all the muscles that had to be cut to get this thing out. The brusing continued until there was not one place on the trunk of my body that was not purple or black. Later at my 4 week checkup, it was determined that the reason I had bled out, was I had no more blood clotting factors left in my body, since I had had so many surgeries in such a short time. I was advised not to have anymore operations for quite some time. This was going to be OK with me. It took some time to get over this one and about 6 weeks before all the bruising was gone. I will never forget when I went back to see my GYN, the one who did the operation. He hugged and kissed me and told me he was so glad I was still here. I told him I was too.
Posted by Karen at 08:52 PM | Comments (0)
