Tuesday, November 24, 2015

PAO'd and Pregnant


So, those who have read my blog may know that hubby and I have had our share of ups and downs over the past several years. There have been wonderfully happy times, as well as tragic and heartbreaking times; we’ve seen each other at our highest and lowest points. Together, we’ve helped each other through our most trying times, and we have become an even stronger pair because of it. While these times have been stressful, and overwhelming, and have often left us feeling a little despaired…we know that enduring these times has made us what we are today, and I’m thankful for that. Good and bad, we take it all as an opportunity to learn and grow together, and to be better partners for each other. So, after the things that we’ve weathered, you can imagine the overjoyed, jubilant, and complete euphoria experienced when we learned that we will be parents come April! It has been the most exciting and joyful time of our lives! We are over the moon and just loving every moment of this new experience.


Baby G at 8 Weeks


So far, the pregnancy has really been a dream. We have been so fortunate. I had minimal morning sickness, and hardly any real “pregnancy symptoms.” I’m just about 18 weeks now. We’ve been to several appointments (including two ultrasounds), and all of our appointments have shown a healthy and happy little Baby G! We are soaking up every moment of this, it’s been so fun!
On a more serious note: something we are trying to be cognizant of moving forward is how my pelvic history could affect this pregnancy and delivery of this little ray of sunshine. Since we’ve learned we’re expecting, we’ve visited both our OB and our surgeon. Due to my complicated pelvic history, we’ve had several conversations with both doctors regarding what to expect during and how to approach pregnancy and delivery. 

Baby G at 12 weeks


Here’s a quick summation of history/current conditions of my little hip-y’s:
Right hip is severely dysplastic (center edge angle less than 5). It was surgically adjusted with RPAO in October 2012. The PAO was followed by an arthroscopic surgery to fix a torn labrum with cartilage degeneration and cyst formation. The arthroscopic surgery fixed the labrum, cleaned up the joint, and micro-fractured to create “new cartilage.”
Left hip has Pincer FAI and some labrum pain. This is not terrible, but it’s enough to be annoying from time to time. Lots of “start-up” pain.
Due to years of misalignment, I deal with some sciatic and associated back pain (don’t we all?). I also have arthritis in both hips. Occasionally I still get some psoas tightness and cramping in my PAO’d hip, as well. Overall, though, I feel really great! Once I’m up and moving, I’m pain free the majority of the day.
After discussion with my doctors, there are just a couple of things I need to be careful for:
-          When you’re pregnant, your muscles and tendons tend to relax and stretch. This could be troublesome for me since I’ve still got some psoas tenderness and other weakness in the surgical hip. While it’s not an issue overall, it could make me more susceptible to injury. Because of this, I’ve been told that I should avoid field work. Also, I began showing very early in pregnancy and my center of balance has been all out of whack since about 8-9 weeks which is another reason I should avoid field work. 

-          As I grow along with the baby, the extra weight could put an unusual amount of stress on my hips. A concern that I have is how that will affect my cranky psoas. It’s got a short temper (although it is better than it used to be), so I’m hoping that this excess weight won’t cause it to spaz out. (Literally.) I’m thinking that if the weight gain is gradual enough, it won’t be so bad. I’ve already gained almost 10 pounds at 18 weeks, so I’m almost halfway to the total amount of weight I should gain during the pregnancy. My surgeon had mirrored my concern, elaborating that as I get farther along, the pelvis will start to widen to prepare for childbirth. This is another time of concern, where we see how all the muscles and tendons respond to being a bit stretched. To keep limber during this time, he recommended I continue doing yoga consistently. I haven’t been doing yoga at all since I found out I was pregnant, since the internet has a funny way of telling you about everything that could possibly hurt your baby. One of the pieces of fear-mongering I read was that some stretches can hurt the baby and cause contractions (or some craziness like that). So I skipped out on it until I could figure out a good prenatal yoga class to attend. Luckily, I have a wonderful friend who gave me a prenatal yoga DVD so that I can do these classes on my own time, in the comfort of my own home. The yoga should also help out with the sciatic pain, which has always been an issue and I’m sure will continue to be.

-          When delivery day (or night) comes, we’ll need to pay special attention to what my hips are telling me. Although no one expects an issue, if I’m having a hard time getting good comfortable birthing positions or if my hips just aren’t widening enough, we’ll need discuss a caesarian section. This is absolutely not wanted or expected at all, but it’s just something to be prepared for in case. Another scenario is if the baby is a big’un, and I’m a little one, it may be better for my hips to deliver by caesarian. All things that only time will tell.


Other than that, this is all just a “wait and see how it goes” kinda thing. I’m the first PAO’d patient of Dr. Schiller who’s had a pregnancy post-PAO, so he’s just as interested in seeing how it goes as I am. Hopefully if I can keep consistent with the yoga and just take it easy, I should be just fine!

I’m looking forward to what the next few months bring! 

Thanks all, hope you’re well and happy!,
D

Sunday, November 1, 2015

A Marrowing Experience


It’s been a long time since I’ve written, and it’s partially because I’ve been BUSY BUSY BUSY.

One of the last times I wrote, I explained the need for me to donate bone marrow to my brother. Well, my family did go through the donation process back on April 23rd.
That was an amazing day! It was exhausting and emotional, but amazing nonetheless. I think it would be good to summarize the process (in relation to my hips) in case it could be helpful for anyone else. So here you go:

To start, I’ll say that Dana Farber Cancer Institute, as well as Brigham and Women’s, are pretty spectacular places. I had an unbelievable experience with them, as did the rest of my family. I can’t thank them enough for all of their efforts and support throughout the process.

So I started working with my donation team in February/March to determine my validity as Jody’s donor. Even though I was a viable match, I still had a lot of prep work to do before I could be solidified as a healthy and worthwhile candidate. The first step was to determine if my previously performed osteotomy would pose any potential issues for the surgical team performing the harvest. Since I still have my surgical screws, they had to spend some time analyzing my screw placement.  It was determined that because my screw heads are all in the front my pelvis, and the harvest team harvests the marrow from the back of the pelvis, the screws would not be an issue. We could proceed with the rest of the screening process.

In addition to the pelvic analysis, I had to have a series of blood work (they took 29 vials of blood!), physical examinations, and a psychological exam to be sure that I am in both a good mental and physical condition.  Thankfully, I passed everything with flying colors and we went ahead with the donation.

Right side insertion points. 
The harvest procedure consisted of a large gauge needle inserted into the iliac crest of the pelvis, and into the spongy bone space inside my pelvis where the bone marrow is located. The needle is then used to extract a previously determined amount of marrow, based on your weight and the weight of the recipient. In my harvest they utilized four insertion points and extracted approximately 1150 mLs of marrow.




Harvested Marrow


The procedure itself was pretty short; I believe I was only in the operating room for about an hour, hour and a half. I woke up pretty uncomfortable, but mostly I was just exhausted from the anesthesia and blood loss. Because I woke up with some back pain, they gave me a dose of Dilaudid (my nemesis from PAO!). I actually tolerated it okay, but it made me extremely sleepy, just like the last time. So I slept most of the afternoon. Sometime later that afternoon I started to feel a bit more human and I think by evening I was up and chatting. I felt good enough to go home that night, so they discharged me sometime later that evening.



Post-op bandage.
The days that followed were a little tough, but it had nothing to do with my hips, which was great. It was just an intense stiffness in my back. There was some pain for a couple of days, but nothing that this old hip warrior couldn’t handle. Overall I’d say that it was a pretty great experience as far as my hips were concerned.







Hopefully no one out there will ever have the need to read this entry for reassurance, but if you do, note that my PAO had absolutely no impact on my ability to donate or in my recovery from the procedure.

Here’s hoping you all are healthy and happy, and that you are heading into the holiday season with love and good fortune!

-D

Wednesday, March 11, 2015

Disabling the Disability



You know, it’s funny. I commuted into Boston today to work out of our corporate headquarters. I took the train, and then walked from the train station about 10 blocks/a half mile to our office. As I got ready in the morning, I knew I had to wear sneakers because of this long walk. I put my sneakers on thinking “Will I ever be able to make a decision without weighing the effects it will have on my hips?” I thought that even though I’m surgically “fixed”…I’m not really, technically, fixed. I guess that even after a surgery like this, us hippies always have to worry about the fatigue, and the arthritis damage, and all of our little dings and dents we’ve gathered along the way. While I feel great (and I really do), I think everyone can admit that we still seem to have some minor limitations. And it got me to thinking, even after having a corrective surgery, do we still carry the burden of a “disability?”

Before surgery, it look me a long time to admit that I have a disability. It seems like a word that’s meant for people who are truly worse off than I am, or was. I always felt like saying that I have a disability was me trying to make excuses for myself. As my pain progressed, everyday things got harder and harder for me. I began to face that fact that admitting that I have a disability is not making excuses, it’s accepting myself and my limitations for who I am and what they are. And that is far more important than pride. Mentally and physically, that was the hardest thing for me to admit.

Then, I settled into that definition. I came to terms with it. And, as I planned out the surgery and recovery, it really came to be a part of me and I embraced it. I knew my limitations and I could accommodate them. It was certainly a hard pill to swallow, but I felt as though the best way to deal with the situation was to face it head on. And so I did. Throughout PAO and scope recovery, I pushed myself when I needed to, and I cut myself slack when it was necessary. I lived with the hope that with every passing day, I was leaving my “disability” a little farther behind. 

As time went on, I got stronger; I became mobile and agile, and I became essentially pain free. And after a long while, I really felt great. And I still do. I feel better than I EVER have in my life. But, the reality is, I will never, ever be 100%. None of us hippies will ever truly be 100%. I just don’t think it’s possible. 

We all have our creaks and our cracks, and we have our aches and our pains (some worse than others). I have “start-up” pain in my left hip, and I still have arthritis pain in both hips most days. It’s not terrible, and it’s not constant, but it’s there. I guess my question is, we can recover from surgery, but do we ever recover from our “disability?” I was probably insatiably optimistic to think that I would wake up one day and feel like I never ever had any hip problems at all. I’m learning more and more, as time passes, that I will never truly shake myself of this feeling of being “disabled.” Even on my good days, where I am predominantly pain free, I worry about my hip. Mostly unnecessarily, for sure, but the slightest bit of worry is there.

And what’s worse is that these are the best days for me and my hips. They are great days, and I am thankful for them. I am doing things every day that I wouldn’t have been able to do effortlessly pre-surgery. However, I can’t help but have this nagging feeling in the back of my mind that it’s really kind of all downhill from here. These blue skies and tranquil waters are available for a limited time only. It’s like a ticking time bomb.  When will the other shoe drop?

Anyway, I hate to sound dramatic. It’s certainly not like I’m feeling this way every day. This morning, as I planned to wear sneakers because of the long walk, it just kind of struck me that there really is no way around these hip thoughts. And even though I feel better, I will never feel totally “normal.” I won’t ever be able to be totally carefree about my hips and how I use them. This is a fact of life for us hippies. 

However, I insist to always look at the positive. I still am thankful, every day, for the PAO surgery and my recovery. I am thankful that I can walk pain free, every day. I’m thankful for Dr. Schiller, and University Orthopedics. I’m thankful for Rhode Island Hospital and their fabulous care. I am thankful for Lepre Physical Therapy, and for Tom Almeida, who was a Godsend to me during my recovery. Truly a friend and huge supporter. I’m thankful for a one-of-a-kind husband who is irreplaceable. I (literally) could not have done all of this without him. And I’m thankful for all of my family and my friends.

I have a good life, and there’s no disability that will ever change that.