Blood Transfusions & Titanium Confusions

05.29.12

I survived my 4th surgery since February. It's been a long 4 months.

Now that it's over and my "game face" has worn off, I have to admit, I was so scared.

On Thursday, May 24, I reported to the hospital at 5 a.m. My past surgeries have all been later in the afternoon, leaving me to recover well through the early evening. But with this surgery, I was rolled out of the recovery unit and into my hospital room by noon.

I knew the hospital routine, from arrival to recovery, all too well. I was prepped for surgery and reunited with the most wonderful heated gown, which inflates with hot air from a tube on the wall. Man, I really love that gown. It's the only thing I loved about being at the hospital for surgery. And prep time is also time that I get to spend with my husband. We joke around and say lovey dovey things to each other. The nurses in prep are great. Most recognized me, which was sad and fun at the same time. Most of them shouted "What are you doing here again?" and I did my best to follow up with a new, comical response each time.

After about 2 hours, I was sent to the anesthesiology room and had to part ways with my husband and mom (but not my warm, inflatable gown). The anesthesiologist started to talk to me and asked me why this all happened to me. I told him that I didn't have any direct answers from any doctors and I shared my theory about my birth control. He looked down at me and patted me on the shoulder and said, "I think you are right. Keep with it." I smiled and got a little teary-eyed. The surgeon came in to go over things and I started to feel a bit "loopy."

They rolled me into the surgical room. I laid there on the surgical table and stared up at the large lights, which glowed in purple and blue tints. I remember thinking that they resembled jellyfish.

The nurse leaned over and told me she was going to put me to rest. I immediately started to cry. She asked me if I was OK and I nodded yes and wiped my tears away. I had so many things going through my mind. What if something goes wrong? What if this surgery isn't successful? With this surgery, there was even some anger involved. Why me? Why again?

But as usual, without remembering a thing, I woke up in the recovery unit and was offered something to drink and something for the pain. I asked for some chapstick as I usually do. I also asked when I would get to see my family. It couldn't have been more than 30 minutes later when I went upstairs to my room and was reunited with my husband, my mom, my in-laws and my stuffed surgery buddy, Scottie.

If you didn't read my post from my first surgery, Scottie was purchased in Scotland and brought back to me by my dad. When I was young, I had a cyst removed and took Scottie along for surgery. He had a hole in his head where the stuffing was coming out and they stitched him up, too. We had our first surgery together and he's been there with me for every surgery since. (though they won't let me take him in the operating room anymore).

I tried eating french fries almost right away, but I couldn't swallow because of the breathing tube that was down my throat during the 3-hour surgery.

After core decompression surgery didn't work on my left hip, I decided to try a full anterior hip replacement made of a titanium "hip" and a ceramic "head." In this photo, you can see that the head of my hip before the replacement surgery was deteriorating and a large chunk of bone was missing from the bottom, left corner of the head. The white line on the left x-ray is an excess bone formation or hip impingement, which causes loss of motion and pain. A protective cartilage layer covering the hip joint had worn away and small changes began to occur within the hip joint capsule and in the surrounding soft tissues.

When my surgeon came in to talk to me at the hospital, he explained that he tried using a size 3 piece of titanium, but when he did, my legs were still uneven. Then, he switched to a size 4, but when it was put in, it was too large for my bone and it created a small crack. He placed a stainless steel wire around the crack, which will take about 6 weeks to heal. That means I'll have restricted motion for another 6 weeks. I'll either be using a walker, cane or wheelchair for yet another 6 weeks. I really hadn't expected that.

But on the other hand, I was beyond grateful that he chose the size 4 in order to make my legs even. There was nothing I wanted more out of this surgery than to be even again. I wanted so badly for a nurse or doctor to come into the room and to tell me that I could stand or try walking. Later that night, a nurse finally told me that I could stand.

This was it. It was my moment of truth. I stood up and placed both heels firmly onto the ground. I looked down and neither knee was bent.

I sat back down on the bed and cried into my hands. It was the happiest cry that I've experienced with exception of the births of my three children. I might have a longer recovery than most who receive an anterior hip replacement, but at least I know I have a chance at "normal" again.

My 2nd and 3rd days in the hospital were rough. My hemoglobin and blood pressure levels dropped pretty low. I had to have 2 units of blood given to me. My doctor warned me of a blood transfusion, but I really didn't want one. Only 15% of the world has my blood type and if it mixes with any other blood type, I'll pretty much die. I was worried that I would get the wrong type of blood or that they wouldn't have it in supply. Every time I saw a nurse (I LOVED the nurses!!), I asked, "That's Rh-negative, right?" They assured me that it was, but I still worried. But 2 units later, I was actually feeling better.

I not only survived another surgery, but I had survived my first (and hopefully last) blood transfusion. I ended up staying an extra night in the hospital to be sure I didn't "crash" again. I was so upset when they told me I had to stay an extra night. I wanted to come home and shower and sit on my couch or recliner and have access to my own food, toiletries and television stations. I was so ready to bust out of that joint after seeing everyone post photos about their fun memorial day weekend adventures online. I couldn't wait to feel the outdoors again ... even if it did just involve sitting on our patio.

The following afternoon, 4 days after I had checked into the prep room at 5 a.m., I was finally heading home sweet home. There are still moments when I worry about blood clotting, infection or low blood levels. I don't feel totally in the clear yet.

Yesterday was Memorial Day and I was determined to spend some time with my husband since he had off work and our children were with his parents. We managed to visit the fabric store, Target and the furniture store. I had to be pushed around in my wheelchair, but it was still so nice to be out and about. At home, I use my walker. I've been doing a lot of sewing in the last week to keep my mind off of things and I plan to do a lot more since I have the rest of this week off from work.

I promise, one of these days/weeks I am going to actually use my vacation time for something other than surgery or childbirth ... you know, an actual vacation! I'm taking my husband to Atlantis in the Bahamas to swim with the dolphins as soon as the opportunity arises. We desperately need a real vacation together.

But for now, I'll focus on getting better.

I thank God for getting me through this. No doubt, he's been right there by my side since this all began. My strength comes from Him. I don't deserve any praise. He does.

"Look to the LORD and his strength; seek his face always." -- 1 Chronicles 16:11

P.S. Happy birthday shot-out to my bestie, Felicia! I miss her lots (she lives in FL, which seems really far away at this point in my life).

Chances Are ...

05.21.12

I decided to create my will today. Not because I think I am going to die soon, but because it is something every parent should do.

I'd like to believe that I would live long enough to watch my children raise children of their own. I'd like to believe that I'd have enough time to do everything that I ever wanted to do here on Earth and that I said all the things that I needed to say to the people I love. Most of all, I'd like for every person that I love to experience all of that and more. But I've lived long enough to know that life and death doesn't always work out that way.

Death is not just a possibility, it's a certainty. Knowing that -- I try to live this life for the next, which I believe to be eternal life with God in Heaven. And like most people, I don't think of myself when I think about death ... I think about my family and my friends, especially my children. That is why I created a will.

Again, I'm not dying. But I have been hit hard by a fast lesson in declining health. Turns out, I'm actually not going to be healthy forever. (bummer)

Earlier this week, I was watching United Stats of America (Stats, not States). It is a really great show on the History Channel and the hosts (the Sklar brothers) are hilarious. I'd definitely recommend it. Each episode features a different set of statistics related to a specific topic.

One that I watched was about death. It's the most feared thing in the U.S., but the interesting part was the actual statistics about causes of death. They started by interviewing people about how they feared their own causes. The responses were all over the place: bacteria, meteorite, accident, insect bites.

I know this all sounds a bit morbid, but they deliver it in a very comical, non-morbid way on the show.

The bit they did on bacteria was pretty eye opening. They did some different experiments to demonstrate how quickly salmonella spreads throughout the kitchen after cooking chicken. They also showed the number of bacteria present on different household items. Surprisingly, the toilet was not #1. Actually, the kitchen sink typically has more bacteria on it than a toilet. The kitchen sponge was a major culprit.

But the top, most bacterialized (I just made that word up) item in a household is ... (drumroll, please)

THE TELEVISION REMOTE!

They explained that everyone touches it and that most people don't clean it. The chances that there is poop (uh huh, poop) on your remote were almost 100 percent!!! I definitely got right up and grabbed a Clorox wipe and cleaned off every nook and cranny of our poopy remote.

After they narrowed down the top 16 causes of death in the U.S., they did a sweet 16 bracket until it was narrowed down to two causes. The top two causes of death in the U.S. are pedestrian accidents and heart disease. Heart disease was the "tournament champion."

I've always been a sucker for a good statistic. I don't always trust how accurate they are, but they pack a good punch. I like to use them in my writing to show how relevant (or irrelevant) something is.

When my doctor first told me about core decompression surgery, he explained that it had a 73 percent success rate. But when it comes to my left hip, I am in the 27th, less fortunate percentile. But as I've said before, it was worth a shot. I had to take a chance. I didn't want to jump right into a hip replacement if core decompression was going to do the trick. And for my right hip and right shoulder, it did.

On Thursday, I'll have a full hip replacement on my left hip. It is my fourth surgery in the past four months. I have to admit, I'm more nervous about this one than any of the others. This surgery has more potential for complications -- possible blood transfusion because of the amount of blood loss and possible infection or blood clotting after surgery.

The type of replacement I am having is called an Anterior Hip Replacement. It pretty much means that the surgery will be done from the front of my hip, instead of from the back. Below, you can see how this type of approach seems like the better option.

And of course I had to look up a few statistics. After a total hip replacement, 90 to 95 percent of patients achieve good to excellent results with relief of discomfort and significantly increased activity and mobility. And as for the possible complications I mentioned earlier, the chances are less than one percent. (phew)

Those statistics make me feel better.

The only other reason I am nervous about this surgery is because I have such high hopes for it. I honestly can't remember what it's like to just get up and walk normally and without pain. I want SO badly to be reminded of that. I do believe that this surgery will improve things ... but sometimes, doubt creeps in.

When it does, I pray about it and I feel better. I know that worrying is completely unproductive. I'm only human so I dodge it as best as I can.

Chances are ... that I will come out of surgery and be closer to better than I have been in 8 months.

The stats are in my favor. But more importantly, my family, friends and a healing God is on my side. With that type of support, there is really very little to worry about. Prayers (happy thoughts, positive vibes, whatever floats your personal faith boat) are sincerely appreciated.

"For everything there is a season, and a time for every matter under heaven: a time to be born, and a time to die; a time to plant, and a time to pluck up what is planted; a time to kill, and a time to heal; a time to break down, and a time to build up ..." -- Ecclesiastes 3:1-2

Mirena: Writings on the Wall

05.12.12

I have done a ton of online research about the links between Mirena, silicone and autoimmune diseases and I intend to hit the books soon. I'm amazed at some of the information that I have come across on the web. Some of that information comes directly from the FDA and Bayer (the maker of Mirena) websites. I have saved page upon page of information that only fuels the idea that my quickly deteriorated health is a result of Mirena.

Of course, there was always the obvious -- the symptoms (debilitating hip and shoulder pain) began about 4 months after I had Mirena inserted. And when I had it removed in November the bone deterioration halted. Both hips and my right shoulder were already affected, but upon removal, my left shoulder didn't deteriorate. It was starting to, as an MRI revealed. But it seemed that my blood flow had all of sudden restored itself after Mirena was removed. My left shoulder was saved.

Could that have been a coincidence? Sure. Seemed unlikely, but it could have been. Even through today, I've tried to keep an open mind about things. But as I read more, my mind starts to close in a bit.

Here is some information that I want to share (I'll share more at later a date - in an effort not to overload you or myself):

IF YOU ARE A WOMAN BETWEEN 82.5 - 121 POUNDS (and of reproductive age) ...

"Body weight and serum SHBG concentration have been shown to affect systemic LNG concentration, i.e. low body weight and/or high SHBG (Sex hormone-binding globulin) levels increase LNG concentration. In women of reproductive age with a low body weight (37 to 55 kg) the median serum concentration of LNG is about 1.5-fold higher than in those weighing above 55 kg."
(source: http://www.mirena.com/en/professional/contraception/pharmacokinetics/index.php / sourced via: Mirena Extended CCDS 2011 Bayer HealthCare Pharmaceuticals, Berlin, Germany, 22nd March 2011.)

This is a clear warning that should be provided to women who are between 82.5 - 121 pounds and are interested in using Mirena as birth control. Low body weight is shown to "affect systemic LNG concentration." Mirena is promoted as a "remote" concentration -- meaning that it only affects a SINGLE area of the body (the cervix). But this clearly says "systemic," which means the ENTIRE body. "LNG concentration" is the amount of levonorgestrel (LNG) released by Mirena. And the excerpt from above clearly states that the concentration is 1.5 times higher in women who weigh less than 121 pounds.

Why wasn't I, as a women within this "low body weight, reproductive age" range, not warned that the LNG could possibly spread throughout my ENTIRE body OR that the levels of LNG being released would be 1.5-fold HIGHER? Women who fall into this category need to be told this BEFORE Mirena is inserted. This information should be made known by Bayer, the FDA and the doctors who support it and provide it to their patients.

FYI - Levonorgestrel was also the active ingredient in Norplant and Norplant II (Norplant distribution in the US ended in 2002 and it resulted in more than 50,000 lawsuits, including 70 class actions. Norplant II has never been promoted in the US)

Mirena works as a birth control because the LNG, which is released daily into the uterine cavity, thickens the cervical mucus and inhibits sperm motility and function.

But if it the concentration is systemic instead of remote, could that mean that the uterine cavity wouldn't be the only place where thickening would occur? Perhaps the blood in my arteries and veins have thickened, causing blood clotting ... which causes Avascular Necrosis.

I've seen where many women have reported difficulty breathing. And others, including myself, experienced heart palpitations. Are we "thickening" in all the wrong places?

And perhaps there is some silicone mixed in with what is being released. Is silicone roaming all around my body causing autoimmune issues? I've previously shared that many women who use Mirena have developed autoimmune symptoms and diseases. I shared a video that I found on "My Life After Mirena" here. I have also discussed some of the links between Mirena and my own autoimmune issues here.

Here is an excerpt from a Mirena description:
"The reservoir consists of a white or almost white cylinder, made of a mixture of levonorgestrel and silicone (polydimethylsiloxane), containing a total of 52 mg levonorgestrel. The reservoir is covered by a semi-opaque silicone (polydimethylsiloxane) membrane."

I'm having a hard time understanding this. Is this reservoir a tiny medical genius? How does it know to release LNG and not silicone? It's already been shared that the daily release amount of LNG differs in body types and at different ages and for women with high SHBG levels. And it was also shared that it could become systemic and not remote. My guess is that this contraption is far from genius. In fact, it seems to be getting it all wrong for many of us.

I've virtually connected with hundreds of women who have had bad experiences with Mirena. Some will never be able to have children again (since Mirena is recommended to women who already have at least one child). Some fight off horrible autoimmune symptoms every day of their life. Some have isolated themselves, because no one seems to care what is happening to them and they aren't receiving proper care. Some, like me, will have to have surgery in an attempt to restore their bodies back to normal.

I am not a doctor. I have no interest in becoming one. I may not have credentials, but I do have a brain. Sometimes, all you have to do is read between the lines. This is where we need doctors to step in. Do some actual research and report ALL of your findings. Provide some proof. I'm a willing test participant! Step out of the box and listen to your patients. Stop listening to companies who need you to push their product. Make a difference.

If you have had a bad experience with Mirena, or any other drug, I urge you to share that information with the FDA through MedWatch, the FDA Safety Information and Adverse Event Reporting Program @ http://www.fda.gov/Safety/MedWatch/default.htm

They will never know what is happening to us if we don't report it. I have no idea what they actually do with it when they receive it, but I have shared this information with them in the hopes that they would make Mirena provide this warning (among others). I'd like to believe that they actually read the reports and that they take their jobs seriously. (sigh)

Please read, sign and share this petition for more testing on Mirena IUD/Skyla IUD:
http://petitions.moveon.org/sign/mirena-iudskyla-iud-clotting/

Future Bionic Woman

05.08.12

If you've been reading my blog, then you know that I've had three surgeries in the past few months. On February 1, I had core decompression surgery on my left hip and right shoulder. On March 15, I had core decompression on my right hip.

Last week, I started walking again. It was sort of the grand finale' of it all and it was amazing to get to that point after being in a wheelchair for 3 months. But within one week of walking, it was very clear to me that things weren't much better. My left hip hurts and my walk isn't improving.

I'm not trying to stroke my ego, but I do have a high tolerance for pain. With my doctors and physical therapists, I am always asked to rate my pain from 1-10. Today, at a follow up appointment, I rated the pain in my left hip as a "4." I rated the pain in my right hips a a "2." And I rated the pain in my right shoulder as a "0."

The highest pain rate I've ever given was a "7" and that was when I was minutes away from giving birth to my daughter, with no epidural to subdue the pain. I hid the pain so well that they didn't even realize I was about to have her. It was a hurried delivery once I told them "it's time to push." Usually, the doctors and nurses are the ones who say that.

When it comes to sickness, I'm a huge baby. For me, being nauseous is the worst. I'd choose pain over sickness any day. And at this point in my life, I couldn't be more thankful for being gifted that type of tolerance.

Still, the pain in my left hip was enough to frustrate me and keep me from moving around as much as I would like. And often times, there was a fear that I would fall or that my hip would break. And in the last week, it's felt like it was on the verge of doing just that.

Still, I kept on trucking - picking up my children from school, decorating my children's daycare for Teacher Appreciation Week and covering events for work. I even went shopping this weekend got a pair of coral pants that I've been drooling over for a few weeks.

Each day, instead of feeling improvement, I was feeling more pain. And instead of my walk getting closer to normal, it was becoming more abnormal. I felt more fragile and unstable than before my first surgery.

At my doctor's appointment today, I had x-rays done on my hips.

The doctor came into the room and told me that my left hip has collapsed and that it is beyond repair. He told me that I would need a full hip replacement.

He explained that I could keep going on my hip and tolerate it as long as I wanted, but before too long, I'd need a new hip. It wasn't going to get better. It would only get worse.

I let that sink in and then I told him that I was ready for the surgery as soon as he could do it.

I saw the x-ray. My left hip looks horrible compared to my right. Since my left hip is where the pain first began in September of last year, I'm sure it's been deteriorating for a longer period of time. I had hoped (prayed & wished) that the core decompression surgery would give my hip new life ... but it didn't.

I thought that my surgeries had come to an end, but they haven't. My grand finale' lasted all of one week. It was a premature flop. Still, it was worth a shot.

Though it has been nice to be on my feet again, it's simply not the way I want to live my life. I don't want to walk like a zombie. I don't want to be lop-sided and pay $100 per shoe that would need to raised an inch to even out my legs. I don't want to stay on the couch, because I feel so fragile.

I want my life back.

I want to take dance lessons with my husband. I still want to run the Color Run(5K) in D.C. in September. I would love to return to coaching one day if my daughter ever decides to cheer. I want to be able to take my children out to the ball field to watch my oldest son play. I want to play on the playground with them. I want to travel.

There are just too many things that I still want to do.

I wouldn't be happy continuing to live the way I live right now. If that means that I have to have another surgery and have my hip completely replaced, then that is what I will do.

My doctor says that a new hip will correct the length discrepancy that is now in my legs, because one hip collapsed. Hip replacements have come so far these days. They are practically indestructible.

I have too much life ahead of me to always be as limited as I have been for the past 8 months of my life.

And I never want to give my family less than all of me -- even if part of me is going to be metal and ceramic.

I'm ready to become a bionic woman and show them my "card" when I set off a metal detector. I'm just ready to be me again.

"Your father knows what you need before you ask him. So do not worry, saying 'What shall we eat?' or 'What shall we wear?' For the pagans run after all these things, and your heavenly Father knows that you need them. But seek first his kingdom and his righteousness, and all these things will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Today's trouble is enough for today." -- Matthew 6:8b, 31-34