Our decision...

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As many of you know I recently had an appointment in Boston to discuss the options for my knee. My knee is no longer functional and I have not walked for the last 4 months. I also have been in constant pain with elevated pain anytime I move it slightly. Because of the damage to the joint, the knee has locked at a 90ish degree angle and I am unable to straighten it or bend it very much. I met with the orthopedic surgeon who specializes in orthopedic issues for people with vascular anomalies like myself. My knee is a mess. There is no cartilage in the joint and the tissue around the knee is full of venous malformations and it would be impossible to do any conventional treatment (i.e. knee replacement) because of my genetic condition. We were given a few options.

  1. First, I could live like it is now, unable to walk and on a pain management program, which means narcotics and possible steroid injections in the joint.
  2. Two, I could have the knee straightened under anesthesia and fused, meaning it would be in a constant straight position, able to walk, but unable to bend it to get into a car, plane, etc.
  3. Our last option is amputation. This was the recommendation of Dr. Spencer, the orthopedic doctor. She feels that the team of doctors at Boston Children’s Hospital could "get me through it", meaning that it will be an extensive, long and trying process but nothing that they could not manage.

So here’s what that looks like. According to Dr. Spencer, a typical amputee could spend several weeks in the hospital as the wound heals before they are ready to go home. For me, the recovery time (just in the hospital) could be months. The amputation surgery itself is relatively easy; the hard part is the healing after. Maintaining the balance between bleeding and clotting, which could involve several blood transfusions, is a big part of it. In a similar case, Dr. Spencer explained, the gentleman was in the hospital for 3 months. Once the limb heals, then I would be able to be fit with a prosthetic and start to learn how to walk and live with that. This whole process, she said, could take 6-12 months.

Because of how rare and complex my condition is, it would be very difficult and risky to return to Boise to recover. She recommended, and we agree, that moving to Boston for 6 months to a year is the best option if we were to go ahead with the amputation.

David and I took a couple of weeks, after we returned to Boise, to pray about our decision. We agreed to sit down and talk about it after this time and see what God had spoken to our hearts about if, when and how to move forward. We hoped that God would make his will clear to both of us and that our like-minded thinking would be confirmation that we were going the right direction.

So here is what God has lead us to decide. We have agreed that amputation is the best option. And after praying about it we both came together feeling like January was the right time to begin. So there it is, I will be scheduling my surgery to amputate my left leg above the knee for January 2017

There are few reasons we feel like January is best. First, we want to spend our first Christmas as a married couple in our home, here in Boise, not in a hospital room away from family. But second, and probably the biggest part of it, we need the next 5 months to get ready to move our lives to Boston. It has been very hard to begin the planning process for all of this. Just this week I made the call to the surgical scheduler for Dr. Spencer, to start the process of scheduling the amputation. And now finally, about a month after my doctor’s appointment with Dr. Spencer, I am updating everyone on our decision. I am at peace about the decision but its not like I’m planning a trip to Hawaii, I am planning and working towards doing something that will probably be one of the hardest things I have ever done in my life.

But here is my hope. The bible reminds me that whatever I go through God uses for my good (Romans 8:28). The bible also says that with the strength that Christ gives, I can do all things (Philippians 4:13) and that through it all Jesus is with me (Deuteronomy 31:6). There are moments where it is difficult to have hope, but I am so thankful that I am surrounded by people who remind me of hope and bring joy into my life.

My desire is that through this blog you will be able to join me in my adventures. I will be updating it frequently as we begin the process of moving to Boston. And regularly (or David will) when I am in the hospital. Subscribe below for email updates and don’t forget to like “the adventures of a one legged woman” on Facebook.

"And we know that in all things God works for the good of those who love him, who have been called according to his purpose." Romans 8:28

“I can do all things through Christ who gives me strength.” Philippians 4:!3

“Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you." Deuteronomy 31:6

 


Angela and family are raising support for her upcoming journey to Boston for her above the knee amputation. Please check out her fundraise.com page.

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