Sunday, February 8, 2015

The Core of the Issue


Hello!
It’s been forever since I’ve written! As far as my hip goes, things have been really great and there hasn’t been much change. I’m still feeling great and doing really well.

I’m writing today because I’ve been going through some rather heavy family stuff, and I’m dealing with a situation that may affect my hip. 

The short version of a long story is as follows: My youngest brother, Jody, was diagnosed with Chronic Myelogenous Leukemia (CML) in late September. He's 34 and expecting his first baby in a few weeks. It's been a tough time for everybody, needless to say. However, he’s since been through intense chemotherapy, and he’s now in remission, thanks to all the amazing people at Bay State Medical Center and Dana Farber Cancer Institute (DFCI). It’s been an extremely stressful, exhausting, emotional time for all of our family. He’s in a better place now and we are all thankful for that. He’s an amazing guy, that Jody!

Unfortunately, even though he’s in remission, he’s got a tricky type of leukemia. His team at DFCI is afraid that if they don’t do something to try to cure his CML, he will relapse within a year or two. So, in order to ensure he doesn’t relapse, he needs to have a bone marrow transplant. This bone marrow transplant, if successful, will actually cure his CML. DFCI tested family members and scouted the donor list to determine the situation with possible matches. After all their research, it looks like I am the best candidate to donate bone marrow to my brother. Obviously, I am honored and thankful that I am a viable match and I will be able to help him in such an amazing way!  It’s an amazing thing, and the sense of responsibility is like nothing I’ve ever felt before. I’m just so thankful that he has a match, and that, if all is successful, he can be cured. This whole process has been so stressful, I just want the donation and transplantation to be smooth and easy for him. I feel like he deserves that! We are looking at an early April donation and transplantation process. 

I am writing this entry because this process will be a bone marrow harvest procedure. They will need to core into my pelvis and aspirate and collect the marrow from inside my pelvis. This would normally not be a big deal, however, as well documented here, my pelvis is not my strong suit. The biggest concern is that I still have my surgical screws from my RPAO in October of 2012. I’m working with my donor team at DFCI to figure out if this is a problem, and how we will address it if it is.

There are two reasons for this post:
  1. I’d like to know if any other PAO’ed people have had to go through this; and 
  2. I’d like to document how this affects me (if at all), for others who may have this same situation someday. (Though I hope you don’t).

A few things:
  • Here are my latest x-rays:






  • My donor coordinator at Dana Farber asked me specifically about my iliac crest, and if any of the screws were interfering with that area. This is where your iliac crest is located:


http://www.rst-art.com/ana-t61.jpg

  • I’d also like to note that this harvest occurs on the backside of the pelvis, so I would be lying on my stomach during the procedure. I think this is important because my screw heads are all in the front of my pelvis.
  • I’ve spoken with Dr. Schiller and he is perfectly fine with me going forward with this process. He said I could take new x-rays any time if Dana Farber needs a different angle to determine screw placement. He also stated that he would work his schedule around to take my screws out if that is something that Dana Farber is worried about. The recovery for screw removal is about 4-5 weeks (non-weight baring)…so that is something that we’d need to figure out sooner rather than later.


So, right now, I am in a waiting game. I have sent my latest images to my donor coordinator at DFCI who will pass them on to my DFCI clinician for analysis. I’m hoping to hear from them this week regarding their initial thoughts.

In the meantime, please pipe up if you’ve had this harvest procedure before. Even if you haven’t been PAO’d. I’d love some donor insight in general, someone who’s had pelvic surgery would be a plus, but not a prerequisite!

Thanks all, I hope you’re all well and everyone is hip-happy.

D

2 comments:

  1. Hi
    My daughter will be having pao surgery soon. So thanks for blog.
    I have had a bone harvest done on iliac. Honestly it hurt and took some time to walk again. This was for spine surgery and use that bone in my spine.
    On leukemia, there was a great show on HBO series called Vice. Which is a news documentary type show. They have a cure for many types of leukemia coming out soon. They use modified diseases to target cancer cells. It's amazing and you should watch it

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  2. Hello!,
    Thanks for reading, and thanks for commenting. I always look forward to hearing from others who are dealing with similar hip issues. Support from one another is so important through this all. I hope that you can find some good thoughts, information, and support here. I'm always willing to lend an ear, so feel free to contact me any time if you have any questions, comments, or just need to vent. I wish your daughter so much luck with her PAO. It's been a life-changer for me.

    As far as Vice, I will definitely look into that! Thank you for your thoughts on the bone marrow harvest. I do feel like it will be a bit a of recovery, I'm hoping it's not too bad. You are the first person that I have spoke with who's had the harvest! So thank you for reaching out! I really appreciate it!

    Please keep in touch!
    Danielle

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