I’m sure that since my last post you’ve all been on pins and needles to hear what the Orthopedic Specialist said about the MRI of my hips. OK, maybe not, but I sure have been… sort of. Actually I had convinced myself that it was nothing out of the ordinary. Well, out of the ordinary for me anyway. I figured it had something to do with my old friend Ankylosing Spondylitis. I was absolutely sure that the Dr would recommend cortisone shots and physical therapy. Hmmm, I know you’re going to be shocked when I say, “Not even close… not even close people.”
Instead I was told that I have something called Bilateral Avascular Necrosis of the hip. Um, yep, another mouthful; go ahead and chew on that one for a moment. I have been for almost a week now and I still can’t wrap my tongue around it let alone my head. If you think it is hard to say, you can only imagine what might be coming next. Maybe you can, I sure wasn’t prepared. In a nut shell this means that for some reason the blood supply to my hip-joint has diminished and my bone at the ball of my hip-joint is dead or necrotic. I was told that this problem had nothing to do with my AS, RA, Crohn’s or any one of the other conditions I have. You would think, right? The doctor mentioned that it can be connected to heavy steroid use but he felt that my use of Prednisone was a low enough dose and had not been taken long enough to cause the kind of damage he was seeing. “Sigh”, here we go, yet a new problem.
He kept looking at me like I was an idiot, too slow to comprehend what he was saying but I kept asking, “Are you sure this has nothing to do with any of my existing conditions?” I couldn’t wrap my mind around yet another problem. This is probably going to sound funny but it almost wouldn’t have been so bad had the Dr stated it was related to an existing illness. Instead I experienced a severe blow to my psyche as the realization dawned that this was a brand new hurdle to overcome. If this wasn’t bad enough, he suggested that surgery was the best course of action. Huh? Wait… let’s recap last week for you. On Monday morning I have an MRI of my hips. By Monday afternoon the Dr is calling me to say that there is damage to my hips that he would really like an Orthopedic Specialist to see as soon as possible. On Wednesday morning I go to the Ortho who blows me over with a new diagnosis and suggests that on the following Monday, Aug 12, I have surgery.
To say that my head was spinning would be the understatement of the century. I kept thinking, “Are we sure this is the right thing to do?” To his credit this doctor allowed me to mull it over with him for almost an hour. He looked up several articles published in medical journals and let me read over his shoulder about the disease and the surgery that he was proposing. Much to his credit, he allowed me to hem and ha over it while I attempted to catch up to myself. I kept closing my eyes and saying a silent prayer, reaching heavenward for some type of answer. I was raised with the idea that when faced with a problem you think it through and then go to Heavenly Father in prayer with your solution to see if he agrees. Things were happening so fast I wasn’t sure how to approach this in prayer. The doctor had brought a Resident and his PA in with him and they were talking amongst themselves about the risks and benefits of operating on someone with my history. Finally, when I figured that I wasn’t going to get a clear answer and I would need to tell them I’d think about it, the room went still all around me. I could hear the others conversing but I closed my eyes and for the briefest of moments I felt calm and peaceful. The answer was clear and my heart was full as I realized that Heavenly Father knows and loves me enough to guide me through this next challenge. I opened my eyes and surprised them all as I burst out, “This feels right, let’s do it.”
Originally the surgery was scheduled for August 12, however; they couldn’t get the equipment needed to the hospital in time so it has been pushed back to August 19. Here is what is being done. It is called a bilateral core decompression. Essentially they will make a small incision in each thigh and drill a hole up through my femur and out the other side at the head of the bone (the ball of my hips.) And you thought the dentist’s drill was bad. Typically they leave it at that because this causes the body to stimulate new bone and vascular growth at the site. In my case, because my body is SO good at behaving itself (she says dripping with sarcasm) they will harvest fresh bone marrow and insert it into the drill site. The idea behind this is to expose that area to healthy cells and, as my Dr put it, “Give your body every fighting chance to do the right thing.” I’m sure he didn’t quite understand my sardonic smile at that statement. I mean really, when does MY body do what it’s supposed to? Oh well, one can hope.
What does this mean? Well, first of all I was told in no uncertain terms that this would not alleviate the pain that I’m currently feeling in my hips. The goal of the surgery is not to make the pain go away; it is to save my hip joints for as long as possible. I’m told that hip replacement surgery is inevitable but that they would like to hold off on doing that until I am much older. If this surgery doesn’t work, well… I get brand new hip joints. I’ve gotta find a silver lining somewhere right?
The recovery is not going to be pretty. I find it hilarious when a surgeon calls it a minimally invasive surgery because the incisions are small but neglects to take into consideration that the recovery is so invasive it involves a three-month long process. Yes you read that right. My joints should only be exposed to partial weight-bearing activity. Easily managed if you’re doing one leg at a time, when you’re doing two? I’m having a difficult time wrapping my head around how this is all going to work. They said I can do it with crutches and that a therapist would be coming to make sure I knew how to use them but when I got home the magnitude of what that meant started to sink in. I have stairs, not quite sure how that’s going to work. What about standing in the shower, doing my hair, taking care of kids, going to school… Ah, going to school.
Let’s stop there for a moment shall we? I was worried about starting school again this fall. The fatigue has been getting worse and obviously my pain is increasing as well. However, I mentioned in my last post that my Rheumy was going to start me on a new drug therapy that I had high hopes for. This surgery means that I will need to wait to start that therapy for the three months of recovery time. Both my Rheumy and Ortho agree that the drugs they wanted me to start, while helping with the Crohn’s, RA, and AS, would significantly slow if not compromise my body’s ability to heal the bones properly. Additionally, I must never use Prednisone, Cortisone, or any other steroid therapy to hold the Crohn’s at bay again because they can aggravate this new condition. Ugh! Still despite all of this, I was sitting in the Dr’s office thinking that I could somehow manage to make it on campus for my courses anyway. It took several hours for it to sink in to my stubborn brain that school would have to go for now. I’m heart-broken. This is how I distract myself from the fact that my body and I don’t get along. It was one of the last things that I had left that I felt my illness could not take away from me. Oh how wrong I was!
Getting back to the recovery… I’ve had several people ask why do both hips at once seeing as this will make the recovery more difficult; here’s why. I’ve had a pulmonary embolism that began as a deep vein thrombosis. You can imagine that every surgeon is now a little hesitant to touch me considering the added risk. Two separate surgeries mean twice the risk. This also halts my ability to take the necessary medications for my autoimmune diseases for three months and doing this twice would put me out six months all together. No, we decided that one surgery would actually be less complicated in many ways.
As of now there are still a few questions I need answered. I feel kind of silly having left the doctor’s office without addressing all of my concerns. The problem was that the mental shock I was in was so great that I hadn’t realized they were concerns until I’d finally had a moment to myself to really think it through. For instance, not to be too personal but, how in the world am I going to go to the bathroom? Not to mention, I have Crohn’s which, during this time is going to be untreated, so when I’m having a flare up I’m going to need to get to the bathroom faster than Mr. Roger’s speedy delivery mail man. Just how am I going to manage that? The doctor impressed upon me in vehement tones the importance of my NOT falling and injuring my hips which would be catastrophic to my healing. Bwahahahahaha…. Clearly he has no clue who he is talking to. Remind me later to blog about how I fell down my stairs, broke my foot, and then everything that could go wrong with that, of course, did. He doesn’t know me yet, but he will.
So that’s it for now. I feel like I’m in the boxing ring with my body and, for now, it is trying to kill me. Well I’m tougher than I look! I’ll be spending this week getting ready, talking to the doctor, and arranging for my convalescence. I’m doing my best to keep busy and make irreverent jokes about it with my friends and family because if I stop to think about it I want to just sit and cry. Oh, don’t worry I’ve shed a few tears… I take that back, I’ve shed a large lake of tears already. Some have been in anger and frustration while others have been in sadness and worry. The sweetest tears of all have been in gratitude as friends and family have jumped willingly to my aid. I am overwhelmed by the outpouring of love I have felt. I was in church today and one of the teachers shared a quote about how Heavenly Father would one day dry our tears. I experienced a tender moment as I thought of my Father in Heaven and my Savior reaching toward me to dry every last drop from my tear-stained face. Only he knows how many I’ve shed and how I long to be done toiling through life in this sad, mixed up body. Until that day he has sent me all of you to dry them for me and I thank you for it from the bottom of my heart!
This is probably the last post I’ll be able to do until after my surgery, wish me luck, keep me in your prayers (if you wouldn’t mind) and I’ll see you on the other side.