True Warriors

This post is dedicated to some true warriors who exude strength and love...

As many of you know the creator of HipChicksUnite, Krystal Clausen, her boyfriend Joe and son, Dylan, have been going through some incredibly difficult times. Dylan was born on March 11th, 2011 and had his first heart surgery on March 15th, 2011. He was born with Hypoplastic Left Heart Syndrome and has been such a warrior, just like his parents.

I originally got to know Krystal through dealing with hip dysplasia and all that it involves. As a way to share information, promote support for others and raise awareness Krystal created HipChicksUnite. She led the way for awareness and creating a network for hippies with little information and support. It has now grown to over 600+ members from around the world!

I met Krystal, in person, August 2010 during Hippie Union. Dylan was just a tiny little peanut at the time! There was about 10 girls who came to share their experiences and stories, as well as information about our unique circumstances. Krystal was planning on her surgery until she found out she was preggos with lil Dylan. She was post-poning her PAO surgeries until after the birth of her little peanut. She still kept up with the site and supporting all of us. At 22 weeks, Krystal and Joe found out that Dylan had a congenital heart defect called Hypoplastic Left Heart Syndrome in which the heart anatomy is not correctly formed (simple version). Even though Krystal and her family were digesting the news and how it would affect Dylan's health, she still opened her heart to us by telling her story and documenting the highs and lows of her heart journey. Joe was there for her every step of the way, supporting and loving her and their lil peanut.

Krystal and Joe have been going through something that most people will never experience. I can not imagine what they are going through, but I know that they will be doing everything they can for Dylan. Krystal has been so strong and you can see that she has passed it along to Dylan because he is such a little fighter. I am so proud to say that I know such an amazing woman and hope and pray that Dylan gets stronger every day!

There are so many people that are thinking of this warrior family and praying, hoping and supporting them through this journey. Family and friends are those that are able to support you and be your strength when you don't feel strong and I know there is so much love surrounding Krystal, Joe and Dylan! They are TRUE WARRIORS!!!

Dylan - A Heart Warrior

Update!

These last couple weeks have been very difficult for me. I have had a lot of news to digest in regards to my health. Dr. Millis told me that I will need a femoral derotational osteotomy to fix my femoral retroversion. I did not even know that I had femoral retroversion until that point in time. I knew I had hip dysplasia and that my case was more difficult, but with the additional diagnosis it would only further complicate the surgeries and recoveries. He also spoke to me about getting a referral for genetic testing for a connective tissue problem because it is clear that something else is contributing to the problems. That was a very difficult phone conversation to have. By the end of the conversation I was speechless and in utter shock. Dr. Millis kept explaining different things, but I just couldn't believe that everything was happening. The tears just rolled down my face. Just thinking about going through a FO and it not being enough, then still having to do a RPAO for the second time. I knew this would take awhile to digest.

This past Monday, I followed-up with Dr. Maiers, my local OS per Dr. Millis's request. I wasn't expecting anything that I had not already heard from Dr. Millis. The appointment went as planned and he just reinforced what Dr. Millis said. He said that my problem was definitely very complicated and "way above his pay grade." However, unlike my bestie, Jess, I would not have the option of having the surgery here in Indy by Maiers, like she did because of the complexity and my routine post-op complications that I experience. He also agreed with Millis about a referral to a geneticist. There is clearly something else going on. Maiers did however approve of an alternative PT test for the Army. I would be allowed to do the bike event instead of running. This was a good part because at least I will be able to participate more in my unit and would allow for more job opportunities. I could definitely use a job with a decent income to help pay for all the medical and travel expenses.

Wednesday, I went to Meridian Health Group, the pain management clinic I am using, for a morning full of appointments. They had called me earlier in the week about my lab results and that I had a vitamin D deficiency. My day started with OT to help with different therapies and daily changes I could do to help with the pain and improve my daily functioning. Then I saw the nurse anesthetist for an injection consult. She suggested that I could get some different joint injections to help with the hip pain and nerve issues. I opted for a sympathetic nerve block under sedation. Later, I met with Dr. Wright, an interventional radiologist. He suggested to have a couple of nerve blocks first, then to do the sympathetic nerve block, because it would have a better result. I would do a block in the front of my hip first, then a week later a piriformis block in the back of the hip. I would allow my hip to rest for two weeks and then we would do the sedation and sympathetic nerve block. We got all of the injections set up to be done in the month of March. Next, I went to see the podiatrist to check on my gait, etc., to see if there were any adjustments to be made. My "bad" leg, or right leg was actually structurally longer in length. A temporary fix, was just to add a lift in my left shoe to help. It also is part of the reason I continue to get bursitis in my left hip from overuse. The final appointment of the day was a psych consult. I knew this part would be emotionally draining having to talk about everything that has happened, what I have lost, my stresses, fears, etc. My psychologist, Linda, and the head psychologist, Dr. Gleckman, couldn't believe how young I was and how many incredible things I have had to deal with already and what I would be continuing to face medically. It was definitely an emotional session. I try to put a happy face on, a cheerful façade, but it doesn't always work. They said that I am so strong and people tell me that a lot, but there are so many times I do not feel that way. It had been a long morning of appointments and I was spent by that point, so I headed home to finish homework before class.

I had only been home a couple of hours, when I got a phone call from my family doctor's office. The nurse had called to tell me that my Pap results came back abnormal and that I was being referred to a GYN to get a colposcopy and biopsies. I couldn't believe it! I almost immediately broke out in tears. I was so upset and had no idea how this could possibly happen. I am a health conscious person, had my Gardasil vaccine, yearly check-ups, etc., etc. Now, I have one more problem that I have to deal with. The nurse continued to explain what the abnormalities were. It is called low-grade squamous intraepitheleal lesions. LSIL are caused by the HPV virus, there are over 100 strains, and can also be referred as mild dysplasia. They are abnormal cells that are not cancerous, but can lead to cancer untreated. Some strains of HPV lead to plantar warts on the feet or hands. When I looked up the information it scared me because it was one of the groups of abnormalities that requires treatment and that can't just be watched carefully. Usually docs will run another regular Pap before referring to a specialist, but I was referred immediately, which completely freaked me out. I set up the specialist appointment yesterday and when the nurse asked for me to wait so she could check that the "procedure" room is available, I nearly lost it! She told me not to worry, that this happens a lot, but that was not reassuring at all. I just do not have that kind of luck, no matter how hard I try to take care of myself. When I got off the phone I broke down. I have been feeling so overwhelmed with just dealing with my hip & leg, but now I could be dealing with a potential serious and scary issue. I just don't know how much more I can take. I felt as if I was drowning with no way out. Just the words of "cancer" or "procedure" just sends me over the edge. I just think of all the procedure rooms I will be in, injections, testing, surgery, etc., has me so anxious and it makes me feel so anxious just thinking about it. I am so scared for what is to come and if I will be strong enough to handle it all...

Completely Unexpected!!!

About 5 weeks ago, I had my 4th hip surgery at Boston's Childrens Hospital with Dr. Millis. Dr. Millis performed a hardware removal and scar revision on my right hip. I stayed at Childrens overnight and was released the following evening after an MRI with contrast was performed. My hip was pretty swollen and bruised, but the incision looked a lot better than the first time around. The surgery did send my nerves into overdrive and I had intense burning sensations down my leg. The sensations would take my breath away and I could not touch my leg when the flares would occur. They have decreased with an increase in nerve meds and time. Dr. Millis told me that he would call me with the results, but he was "cautiously optimistic" that the screws were causing the problems and this would be very helpful. It was also necessary to remove the screws so that he could get useful imaging.

I got to keep my screws!!!

It took over 4 weeks for Dr. Millis to call with my results, despite numerous emails and many phone calls and messages. He called as I was getting dismissed from my drill weekend. He asked how my incision was healing because 3 weeks post-op it got infected. My incision is still healing, but is definitely better! This is when I got the curve-ball. Millis told me that my acetabulum didn't actually look too bad. It could use an adjustment, but he didn't think that was where a majority of the problem was coming from. He then told me that I had Femoral Retroversion, a twisted femur, and the femoral head was hitting against the hip socket, causing pain, bruising and tearing the labrum. When my knee is straight the femoral head hits the socket, but when my leg is twisted outward, like sitting indian style, its "normal," fitting how it should. He wants to do a Femoral Derotational Osteotomy, where the femur will be broken, realigned and plated back together. He thinks could eliminate the problem, but if I continue to have problems then a re-RPAO would be a last resort to readjust the acetabulum.

I was in SHOCK! After everything, now I find out that my femur is twisted! It is more rare than hip dysplasia. Hip dysplasia is 1 in 1000 and femoral retroversion or anteversion is like 1 in 5000. Also, because of my current issues and medical history, Dr. Millis wants me to get some genetic testing done for a connective tissue disorder such as, Ehlers Danlos Syndrome. It might explain a lot of the problems such as poor wound healing, the rare issues, etc. I am also going to a pain clinic to deal with the increased nerve problems, pain management and to see a pain psychologist. I got slammed with so much information to digest. I didn't even know what to say in response. Lastly, Dr. Millis wanted me to go back to Dr. Maiers for an extensive physical exam and to review the op notes from Jan, as well as the imaging. He wanted to see what he thought, if he agreed and then we would all get together to discuss the game plan.

I see Dr. Maiers tomorrow and will hopefully know more and be able to schedule my Femoral Osteotomy at CHB and be one step closer to a better hip/leg. Updates will follow!!!

Me, Dr. Maiers, Jess & Randy

A New Year and More Surgeries!?

I know it has been a long time since I have posted and A LOT has happened since then! 2010 was a long and hard year. Last year started off with a messy break-up and surgery in early February. I graduated in May with my Bachelor's of Arts in Political Science and ended the summer in August with yet another hip surgery. August, as well as February, were hip arthroscopic surgeries on both hips to fix torn labrums and impingements. My left hip has been doing quite well. The only surgery it has had was a left hip scope, no LPAO as of now. I get bouts of bursitis, but it is holding strong. Unfortunately, my right has not been doing so well. I have had a RPAO, then a right hip scope to fix a badly torn labrum, repair impingement, release the iliopsoas tendon, clean-up some tissue, etc. It was a lot more damage then expected, especially since my activity level is quite low, compared to prior to the RPAO.


1 Week Prior to Surgery-Eating dinner at The RAM with my bestie, Jessica!

My right has been a struggle. It bothers me on a daily basis and affects every aspect of my life. After my scope in August a few of the hippies got together for "Hippie Union 2010." We spoke about our stories, experiences and struggles. It was during this time that one of my fellow hippies, Marcie, was talking about some research studies that she had found about failed PAO's, complications, etc. It was eerily familiar because it was nearly identical to what I was experiencing. I then began to do some more research. I pulled up many articles, etc. Some of them stated not to be your doctors first group of PAO patients because the learning curve is very steep with many complications and 9/10 failures. I then spoke with my Dr. Scheid's nurse about this, because I was so upset that I was needing more surgeries to fix problems that should have been addressed at the time of the PAO. She told me that "I was waaay before 50 patients," putting me in that "test" group. "Great!" I was a guinea pig for my doc and did not even know about it. I then made an appointment to see Dr. Scheid and confront him myself. Not only did he side step every question and was very defensive, he told me I had a "reverse PAO preformed," but all I was ever told was a PAO, which are two separate procedures. All I was ever told I needed was a traditional PAO. He saw nothing wrong, but I pointed out the mal-formed femoral head/impingement on my original x-ray and he told me "that wasn't his job, Maiers did my scope." It was his job to make sure my femoral head fit back in my newly moved hip socket. Maiers had already performed the scope and Scheid followed. It was his job to check his work!!! I also asked if the PAO was suppose to prevent future labral tears? He told me "that it was suppose to slow down the process of arthritis, etc." I was confused as to slow down a process that never existed. I had no OA or degeneration prior to my RPAO, but did after. My labral tears were also more severe after my RPAO, despite the drastically lower activity level. Scheid originally told me that the RPAO would prevent future labral tears, which has not been the case. I couldn't believe that he had made my hip worse. Not only was I practice, he never told me of his experience, which doctors have to disclose, but that he couldn't even keep my history straight. He tells me one procedure was performed, but a separate procedure was actually done. I didn't even think he had a clue about who I even was. He didn't bring in my file and his notes were mediocre at best. I then told him that I was going to see another doctor because my hip was causing me more problems now then before my RPAO. I left, and have never gone back.

I continued my research and realized not only was I a "test patient," but that my hip was royally screwed up. In addition to the hip problems, I have developed nerve problems in my right hip and leg since the RPAO. I am on a lot of nerve medication daily to keep it in-check and have pain medicines and a TENS unit to help with pain management. I also pursued another doctor to fix what Dr. Scheid screwed up. I went back to Dr. Maiers to discuss options and things we could do while I waited for an appointment with Dr. Millis at Children's Hospital Boston. Maiers helped with referrals, as well as calling Millis to bring him up-to-date on my situation. Maiers told me that it doesn't get better than Millis and he knew him well from medical conferences. I saw Dr. Millis for a consult in November. He spent nearly 2 hours with me and went into every detail we could imagine. It was clear that I had a problem and things would need to be fixed. He told me at a minimum another scope and possibly a re-RPAO. But, he was also confident that he could fix it, to what level is unknown, but was positive that he could restore function, etc., and would do his best to make my hip as good as he could possibly get it. He also told me that my case is very complicated and would not be easy to fix. I could see his frustration with doctors like Scheid, who perform surgeries on patients when they are not fully and properly trained and the patients pay the price. On one hand, it was hard to hear that I am starting the process over, but on the other hand Millis was confident that he could fix it! The first step in the process would be the screw removal, which I scheduled for January 10th, 2011.

Waiting in the Pre-Op Clinic @ CHB

The surgery came and went...I am now about 2 weeks post-op from my screw removal. Dr. Millis preformed the screw removal at Children's Hospital Boston. It was not a typical hardware removal because of the pin positioning. Usually it is done outpatient, but I stayed for nearly two days because of the digging and extensive nature of my surgery. It took about 2 hours, almost 3x the typical case. Millis also performed a scar revision to fix the old scar and allow for the wound to heal better. I have nearly an 11 inch scar. Usually, I heal very poorly and have to do wound dressings for weeks, but not this time. Not only does my scar look amazing, it is healing great. Millis did internal sutures, then glue, then steri-strips and then packaged the wound. I woke up to a whole new scar which was completely unexpected. The care at Children's was amazing! It was the best hospital experience I had ever had...and everyone was so nice and caring. I can see why it is the #1 Children's Hospital as well as the #1 Orthopedic Hospital. Dr. Millis is also the Orthopedic Professor at Harvard Medical School and Director of Children's Adolescent and Young Adult Hip Program. Most of the research articles I have found have his name on it! I am now just in the recovery process and am waiting to hear back from Dr. Millis about my MRI results and what our next steps will be. I know it will be surgery, but not sure how it will be executed.

Recovering in my room @ CHB

I have also returned to IUPUI for further education. I decided against the Master's Certificate and went for a Paralegal Certificate instead. I thought it would be better prep for law school and give me an opportunity to work in the law field and get some hands-on experience. I took the LSAT in December and am applying to law school for the fall semester. My top pick is Indiana University - Indianapolis Law School in which it will be a dual program, J.D. and Master's of Philosophy with a concentration in Bioethics and Health Law. I have continued to stay busy with school, friends and family. Chloe, my aussie pup, has also had some training and earned her Canine Good Citizen in the Fall of 2010 and we will be pursuing Therapy Dog, in which we will be able to visit hospitals!

Surgery #3 and 2 Weeks Post-Op

Pre-Op w/ My bestie - Post-Op Right Scope

I am a little over 3 weeks post-op from my 3rd hip surgery. I had my right hip scoped, again, and the surgery was preformed on 10 Aug. 2010. Dr. Maiers preformed the surgery and the original plan was to do femoral head reshaping. During the surgery the plans changed because of the damage found. In addition to the femoral osteochondroplasty, I needed a labral repair and iliopsoas tendon release because the tendon was "snapping" over my hip joint, aggravating and worsening the labral tear. There was degeneration and arthritis. Dr. Maiers seemed very sombre when he gave me the news. The surgery lasted 2.5 hours, an hour longer than planned and my recovery is a lot different than anticipated. I am not allowed to bend past 90 degrees, bear more than 50% of my body weight and absolutely have no external rotation for a minimum of 4 weeks.

A week after surgery I participated in Hippie Union 2010! There was nearly half a dozen girls
involved all sharing stories, advice and new information we have found. It was a great weekend with some amazing women.

You Don't Get Use To It; You Just Get Through It...

Since my last entry and a lot of information has come my way. I am scheduled for a right hip arthroscopic procedure 10 August. It is for a femoral osteochondroplasty used to correct impingement. I developed the impingement after the RPAO because of bone overgrowth and new bone position. Hopefully, reshaping the femoral will provide some relief and restore some function. When we were discussing the level of function and pain relief I may get from the surgery will be at best 80%, but more realistically in the 70% range. I was afraid to ask, but I asked if it would never be realistic to run again. Dr. Maiers told me because of how my right hip healed after the PAO and the continued pain and problems it would only have a negative effect on the joint causing more problems in the future. It is unrealistic to think that I will be at the level of activity I was prior to the RPAO. It was heartbreaking because I was told all along that I would be able to run again and it would just be a long recovery process, but I would get back to it. After the latest appointment it just feels as if all hope has faded. I love running and its been a part of me for so long that I can't imagine my life without it. On the other end, I don't want to be crippled or have a THR when I am 30.

I have been stressed a lot lately with the upcoming surgery and the bills that don't seem to stop coming. I have been applying for jobs whenever I get a chance, even if it's a part time job, anything would be helpful right now. I also am pursuing a graduate degree or two! As of right now I will be doing a Masters of Public Health Certificate this next year and will be in law school the following fall. I am taking the LSAT this October and my top choices for law school are: Indiana University-Indianapolis and University of Arkansas-Fayetteville...Go Razorbacks! It would be nice to get my JD from the same place I grew up! I would also be able to watch Razorback football games on the weekend and enjoy the beautiful Ozark scenery. There is a different air to the south. Southern hospitality, cooking, football and southern accents...I miss it! Keeping my head up and trying to keeping searching for jobs! Keeping my fingers crossed!

What's Next...

Sorry for it being so long since the last post, but life has been a little crazy lately. I graduated with my Bachelors of Arts in Political Science in May. I have also applied to a graduate program at IU Medical school for a Masters of Public Health, which I found out was not accepted, but I will be in the certificate program and can reapply in 6 months. I will be doing a 15 credit hour certificate, which means I can transfer all the credits and will not have lost time. Basically, its almost like having a probationary period. That's what I get when competing for the same slots as doctors and lawyers! My older brother, Michael, is getting married in 3 weeks to his fiancée Danelle. I am so excited for them and wish them all the best.

I spent most of June at Camp Atterbury doing annual training with my National Guard Unit. It was a good time, I learned a lot, but the food sucked. It was so bad they even screwed up the fruit, which is sad because you don't do anything to fruit! I was able to train with the medics and keep up on my skills. It was really cool to put in IVs and draw blood. It pushed me outside my comfort zone and I learned a lot. I have been thinking about reclassing to medic for my Army job as well as patient administration. I am not sure what I am going to do, but I definitely have to take my hips into consideration and think about my physical limitations and long-term effects. I did get cortisone injections in both hips prior to my training and my left hip felt fantastic, but unfortunately my right hip did not get any relief. I will see my doc tomorrow and will find out if a scope will help clean it up and give me more function and relief.

I just spend Independence Day weekend in Wisconsin with family and friends and had a great time! I brought my pup Chloe with and she did great with all the new people, places, and things! She was a great travel buddy too! My parents celebrated their 30th wedding anniversary and they are going strong!

I have been training hard lately and have been getting stronger, but the hip pain is holding me back. I am proud of the fact that I was able to run 2 miles today coming in right under 22 minutes. It is about 6 minutes slower than my fastest time, but feels good to have the running shoes on!