Sharon703's Journal

I almost don't know where to begin with this journal entry. I thought it might be helpful to write what I am thinking and feeling. I just re-read some of my previous journals and was able to remember a lot of what I've let slip from my memory these last several months.

I have had a lot on my mind the last week or so. I'm still experiencing a great deal of chest discomfort and pain - mostly now at night when I lie down to go to sleep. And the last few nights I've been running a fever. I had another echocardiogram on Christmas Eve and my hematology nurse said she could see the results in the hospital computer system and everything is fine. I have not yet heard this from my GP who ordered the test. So if that is true (my hematology nurse has been known to make mistakes), then that means I do not have pericarditis (inflammation of the membrane around my heart). Thats good news, but it still doesn't explain my pain and give me any indication on what to do about it. For now I am still taking dilaudid (morphine) when it hurts too much. And that is increasing. I'd been taking it once a week and now its almost every night. I am sometimes able to control the pain enough by using the heating pad on my chest, but many times that doesn't help.

It seems to make the most sense to go back to the pulmonologist who diagnosed me with Tietzie's syndrome, however his office has been awful to deal with and is the reason for my mid-December ER visit. So, I'm left wondering what to do and if I need to get a second opinion outside of this network of doctors that I have that are all tied in to one hospital system, using each others records to diagnose and treat me.

To complicate things even more, I went to lunch with a good friend last week and she shared with me that she ran all of my saga by her sister-in-law who is a doctor at the University of Virginia. According to the sister doctor, my whole situation was not handled properly and I have a case for negligence or malpractice. She says that I should have been handled as high risk for blood clots based on the type of surgery I was going to have, being on birth control pills and because my Dad had a DVT. She highly recommended that I seek legal counsel and rethink my doctors and hospital.

This should have come as no real surprise to me, however its really rocked me to my core. I can't stop thinking about this. I've suspected the last few months that my GP handled this wrong...she never, ever should have put me on birth control pills knowing that I had a history of large fibroids since estrogen feeds fibroids and makes them grow (of course I only know this now that I've done research and talked to more doctors). My GP also should have insisted when I complained of pain for 6 months that I go see an OBGYN instead of handling my gynecological concerns.

And I guess if I am really honest with myself, I've suspected that my OBGYN surgeon should have known to take me off the bc pills before surgery and she should have taken seriously my concerns about getting a blood clot. Yes, did I mention that my husband and I spent my entire pre-op appointment with my OBGYN surgeon talking about my concern that I have a family history of clotting and what we should do to prevent a blood clot? let alone a PE? Her response to me was my Dad had a DVT because of cancer surgery and she never told me that we could have done genetic testing for a predisposition. She also did not talk or plan to do anything other than the pumping cuffs for my legs post surgery. But here is the thing, I love my OBGYN. I really do. She has been my very favorite doctor these last several months and I am so sad to think that maybe she could have prevented this from happening to me and yet didn't.

It scares me because I still have health issues from all this and always will and so I really can't take the chance now that the OB and my GP might not be caring for me properly. I think it my heart I know that I need to change these doctors and get new ones, but its really scary to do that. And I don't quite know where to begin. I have a recommendation from a good friend, and my former boss has offered to get me into Johns Hopkins or NIH if i need it. I'll just need to spend some time figuring out where to go for care now and how to make the switch, and how to get some relief from this pain.

As for the negligence, I'm not interested in legal action for profit, but I really, really don't want what happened to me to happen to anyone else. It seems from what I have learned these last couple months, I really should not have gone through all this and it was preventable had I been given the correct medical treatment and advice. 

I just hope and pray that I can figure out what to do now to resolve my pain and to ensure the proper medical treatment for the future.