At my most recent appointment with one of my specialists, one of the issues we discussed is the continual postponement of booking a date for surgery.
My doctors are truly incredible, but it has been over 7 months since the decision was made to go ahead with surgery - and to do it quickly. The initial plan was to try and get this done and over with within the first 3-4 months of 2015.
I am not always great at pushing and reminding doctors of a promised plan, but I have finally started to be a bit of a 'squeaky wheel', just because of all of the unpleasant symptoms AND because it has already taken so long. In 7 months, my doctors and surgeons still haven't come to an agreement on:
1. How to perform the surgery - laparoscopically or open.
2. How many organs are to be removed - basically whether or not to remove both of my ovaries along with everything else.
3. WHO my lead surgeon is going to be.
There has been a lot of back and forth, a lot of new consultations and appointments and referrals, but after 7 months, there is still no concrete plan.
At this point, I just need someone to agree to take the lead and get this thing scheduled so that I can get on with my life.
I realize that my case is not straightforward or simple by ANY stretch of the imagination.
At this last appointment, I was reminded exactly why it is taking so long.
First of all, when a surgeon sees a lengthy list of allergies - particularly to antibiotics - they cringe and tend to shy away from the idea of surgery.
Secondly, when an anesthetist sees a diagnosis of Hereditary Angioedema, THEY tend to shy away from the idea of surgery due to the drastic increased risk of the airway swelling shut as well as other organs swelling from the trauma of surgery.
Thirdly, surgeons will shy away because of my previous abdominal surgeries. Not only have my digestive organs shifted because of the total colectomy, but there is bound to be major scar tissue.
Fourth, they will need extra surgeons and anesthetists to be involved in the surgery itself because of how many systems are affected by illness.
Fifth, there is no guarantee that it will improve the overall pain.
So, my intimidating & oversized medical history gets passed around like a hot potato.
No one wants to take the responsibility or the reliability of just grabbing hold of the reins and getting it done.
I understand, I really do.
I can handle a lot of pain. I can deal with just about anything. But I absolutely cannot continue feeling the way I am feeling right now. If there is a 5% chance that ONE of my excruciating symptoms MAY improve because of surgery, I want to take that chance. Of course I am terrified - I am well aware of the various and seriously dangerous risks - but there is a chance that this could turn my life around regarding that particular portion of my life.
If it doesn't help, then at least I will have peace of mind knowing that we tried every possible treatment. If it causes an increase in pain, then I can take more pain medication and start another physiotherapy program... But if it improves pain even slightly, that could mean the difference between truly unbearable pain and pain that I can actually tolerate.