Avoiding Bloody Situations

July 25, 2008 at 2:43 am (blogging, myself & I, rambling, real life, story telling, worries/concerns) ()

My appointment yesterday with the hematology department at the hospital went well. They didn’t even have to prick me! Basically, they just asked me a bunch of questions and introduced themselves, since they would be administering the medicine that I take before each and every surgery to avoid bleeding issues. My first ever surgery didn’t go as my doctors had anticipated, and I started bleeding from the bone of the surgery site. They had to cut me open again to drain the bleeding, and before I was able to go home they had to stitch me back up.

They never could find a reason for my bones bleeding. Numerous tests showed that I didn’t have any of the major common bleeding disorders, so they assumed it was a result of my MHE and as a precaution I would be administered DDAVP before each surgery to avoid “bloody situations”.

My new “blood team” suggested I take a trip to another town and hospital for them to do a bunch of other tests to see if they can actually diagnose my bleeding problem – which, as of right now, is referred to as my bleeding problem. The head of the hematology department said that she would probably find what causes my bleeding problem because they actually have a very good, huge blood lab. So I’m thinking I might do that, just because it would probably be a good thing to know. Or interesting to find out, at least.

After we met with the “blood team”, we headed over to my hospital (which is actually across the street) to see if we could meet with my doctor (whom we shall refer to as Dr. Wonder), or at least his secretary. But I guess that his secretary was out for lunch or something. In any case, I didn’t get to meet with him – or anybody really. We had my handicapped parking forms with us so he could fill out the information to renew it since it expires on the 31st, but I guess I have to wait for my surgery for that.

It sort of frustrates me that I’ve yet to actually meet with Dr. Wonder about this whole surgery business. I mean, I met him once. I’ve spoken with him once. The appointment I had a couple months ago was with one of his teammates. I was sort of put out that Dr. Wonder didn’t even come in to talk to me about the surgery, since, well, he’s going to be the one operating on me. Did I mention it’s my first surgery with this hospital and with this team? Excuse me if I’m feeling a tad bit nervous about it, and truthfully I’m missing my childhood team. Course they’ve been with me from the get go and my old doctors bedside manor was beyond amazing, he was definitely a rare doctor.

I don’t yet have an opinion about Dr. Wonder. I mean I hear he’s the best in the area, and my old doctor really wouldn’t have referred me to anyone less than that…but it would be nice to have an actual conversation with the guy before I go under the knife, ya know? And I was really hoping I could talk to him about adding that one bone growth on my left hip into the mix…

Today I actually went to get an ultrasound and x-ray of that bone growth. I was hoping that if I could get the ball rolling, Dr. Wonder might be able to add that to the surgery list after seeing the results [if it causes alarm that is]. But actually, this is one of the more painful bone growths at this time (along with the ankle bone growth they are already planning on removing). I guess it’s just causing me a lot of pain because it’s in the most inconvenient of places and it makes sitting and laying down on my left side and back more difficult, uncomfortable, and painful than it should be.

I’ll try calling the office on Monday again.

“Authors” Note: I apologize for not giving out much information and therefore making this post sound a little bit on the boring side but I’m not comfortable with giving out location/name information. I hope you all understand!

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These Shoes

July 21, 2008 at 3:31 pm (blogging, myself & I, opinions, rambling, real life, reflecting)

I know it’s been forever since I last updated, and I apologize. It’s summer time, and I tend to get lost in this season of freedom and relaxation. I have not been around to update you all on how my first doctors appointment went, and for this I am deeply sorry. I know you have been awaiting a response, and next time I fall off the face of the earth please feel free to email me and yell at me.

Anyways, the appointment ended up with me waiting for a surgery date – which I’m still waiting for. They are operating on my left ankle and left ring finger. Since having the appointment, other issues and concerns have come up; like the tumour on the underside of my left hip. It’s getting larger and causing more discomfort and pain. I’ve called my doctor and left a message about possibly including that in the operation, but unfortunately the lady behind the desk told me I would have to have an appointment with him so he could check it out. He can’t just add things to his list because he has other patients. It makes sense, I guess. So ya, I’m just waiting on a surgery date.

Other than the wait, not much has happened in my medical life. So I can get on to the “dirty” part of this post.

I received an email that someone had commented a post in my old MHE blog Bumpy Bones. Here is the comment they left (that I haven’t approved because I no longer log in to Bumpy Bones):

Author : anonymus
E-mail : nzundel@weber.edu
URL :
Comment:
-As a survivor of cancer, mulitiple surgeries, scars and lifetime effects of REAL medical conditions. . .All I can say is- get over yourself- Life is too short to get that worked up over a miniscule “reminder” that you are human- and life happens- Everyone had little odd things about them- and if attention to them brings you that much distress- you should be seeing a shrink=- not a surgeon! My praises to the surgeon that had enough perspective to tell you the truth in todays world of scalpel happy nuts.

Personally, I thought this to be very harsh so I decided to email this person a reply, only apparently the email they gave doesn’t exist, so I decided to post it here in case they still happen to be reading. Here is my reply:

Dear “Anonymous”;
In regards to the comment you left on my Bumpy Bones Website, I would just like to take the time to say that while I do respect you for being a cancer survivor, but would like to remind you that there are other people in the world who go through medical conditions every day for all of their lives. My MHE is something that I have to live with every day of my life, and there is no beating it. Before you wrote that comment, you should have looked into my medical condition; all of my bone tumours are inactive cancer, they can become active at any given moment. Consider I have these growths ALL OVER MY BODY, that makes my risk higher than people who don’t have this disorder. All of my scars have a great risk of getting skin cancer, which is why I wanted to get the bigger ones removed. I did NOT want my scars removed for purely cosmetic reasons, which is why I took offence to the doctors words. I merely wanted them removed to lessen the risk of cancer and because a lot of those scars cause pain.
My medical conditions are just as REAL as yours were, and I find it extremely rude of you to accuse me of other wise. You of all people should realize that you can NEVER see how hard a person has it or doesn’t have it until you’ve walked a mile in their shoes. You haven’t walked a mile in mind, so please keep your petty comments to yourself. Yes, I do have some body issues but I do not need a shrink to tell me that, I’m fully aware it could be worse and I don’t sulk about my medical issues. I live with them them. I battle the depression that walks hand in hand with having a chronic illness.
I hope you feel good about yourself for this comment, I hope you got out all your angst in this comment.
Truthfully, I was and am upset about this anonymous person’s comment. I know I shouldn’t let one person’s opinion bother me, but it hurts that most people think that just because your disorder/illness doesn’t have a gigantic charity or a ribbon, it makes it less real than say cancer. My MHE may not have a gigantic, world known charity to raise awareness and money for research, and nor does it have a ribbon (at least as far as I know), but that doesn’t mean my medical condition is any less real than anyone else’s. It’s chronic, it causes a lot of pain and other conditions, and its a part of my life. No, it does not define me, but it is a part of me.
So, anonymous commenter…I hope you read my response to your comment and I hope in the future you think twice before saying something like that to someone else.

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