Update and Needing Advice (long)

klbowie

Hello Ladies,

I know I have been a bad bumpie the last month give or take.  Saturday is the big day for the benefit for Caleb.  We have so many awesome silent auction items and donations (including a special one from Smash).  It is amazing how willing people are to help others.  Helps me keep faith.  I am super excited for the event but I will be happy when it is done.  I'm tired!  Once this is over, I promise to be a better bumpie!

Update on me.  I have not heard back about the pathology report yet.  I am trying to stay positive but the more time goes on the more I doubt the news is good.  I started having a heavy menstrual like flow yesterday.  Every time I stand up I can feel a gush of blood.  At times, it is really heavy and other times there is almost nothing but when it is heavy I am changing my pad every two hours.  It is soaked through put only in the front of the pad.  Today is two weeks since my second D&C.  I am not sure what to do!  I am on estrogen to help my ute heal and it should stop all bleeding (from my understanding).

I e-mailed my doctor (well one of the three I have worked with the last five months.  The main one is on vacation, and the other still on maternity leave.)  The nurse called back asking the basic questions checking for a hemmorage but I wasn't concerned about that yesterday.  She said she would forward the e-mail to the doctor and have the doctor call.  I have not heard back yet.  I am worried this is too much blood, especially since its been two weeks.  I am bleeding more then after the initial procedure two weeks ago.

Also, I am contemplating seeking a second opinion from somewhere else.  I have Kaiser so all the doctors kind of back each other up so it is hard to get a second opinion in my insurance.  I am thinking about going outside of insurance but not sure where to even start.  And scared with how much it could cost in the long run!! I am tired of my doctors thinking am crazy and having to explain my story over and over because no one can be bothered to read my full chart.  And five months later with no real advances made.

Any advice on what to do with my doctors or with this bleeding is very much appreciated. TIA

larivierek

Oh KL. That is so worrisome. I am so so sorry. Here is what I would do:

1. Make a call to your current doctor. Ask the doctor specifically to review your chart. Explain the bleeding you are currently experiencing at its worst. Tell her that you think you may be hemorraging, or at least bleeding way too much. Push that doctor to do something.

2. Meanwhile, begin researching a second opinion. You might be able to find a doc at a pregnancy resource clinic who can help (I don't suggest Planned Parenthood). Even if the doc is in the same network, she might be more likely to take a thorough look at your chart. Explain everything to this doctor, and do not skip over anything that you think might not be a big deal. 

Don't give up. Don't wait any longer. You have all my hugs and support right now. Take care of yourself! 

BootsOrHearts

If your gut is saying something is wrong, I would get another opinion and figure out the financial implications later. You have been through so much and it seems like they took way too long to figure out something was wrong when your HCG wasn't dropping, it was obvious to you that something was not right, but they didn't do anything? Just my HO. I hope you can get some answers soon.

Smash2009

MrsErinH:

I don't really have any advice, I just wanted to give you (((hugs))).  It sounds like such a frustrating spot to be in.  I guess all I can say is that if it were me and my gut was telling me something was wrong I would absolutely try to get another opinion.  I think your idea of going to a doctor outside your network is a good idea - maybe could you try to talk to a trusted friend or family member who is on another insurance plan and get a recommendation?  That's probably what I would do.  I'm sorry you are stuck with all these doctors who don't seem that interested in healing you. 

ALL of this. I am beyond frustrated for you. I'm sending you big HUGS, and try your hardest not to speculate about any outcomes because there could very well be a more "simple" explanation for all of this. Hoping the news comes back very much in your favor. Stay strong, we are all thinking of you...I'll continue to pray for you.

And.....BEST of luck on Saturday!!! So exciting! You've done an incredible job, K!

{{HUGS}}

killian09

I would call the doctor back again today.  You might want to ask to speak to the on-call physician, since you're not getting a prompt callback from your doctor.  ETA: Don't be afraid to be the squeaky wheel here.  Your concerns are reasonable, so just keep calling!

 It is difficult to get a referral from within kaiser to an outside doctor, and I know from talking to a friend who is a doc for kaiser that he is required to "re-patriate" the patient as soon as possible back to a kaiser physician/hospital after any outside care.  I think there is considerable pressure on the docs not to refer out, if it's not totally necessary. But given your concerns, I might get on the phone and talk to Kaiser and to your OB about what is going on and if you get referred to someone more specialized.  It might not work though.

If you live near a big city and are willing to go out of pocket for a second opinion, I'd probably ask for a recommendation on a local board for an OB/GYN at the biggest/most prestigious academic hospital in your area.  That's where the complicated cases tend to be referred to, so that's where I'd turn for a second opinion when things get complicated.   They should be more familiar with it.

Also, if you know anyone who works at a hospital, you can try asking them if they know who to ask about who is a good OB/GYN.  I've seen my DH (who is a doc) make recommendations for friends-of-friends-of-friends or other loose ties, and we chose my OB through word-of-mouth recs from nurses who work closely with the OB service. 

larivierek

I totally agree with killian, btw. If you can, go to a teaching hospital. They have a reputation for dealing with difficult cases and getting results. This worked for my mother with her reoccurring cancer, and with my own issues as well.

April!

Oh, my goodness. That sounds awful. I'm sorry you're going through all this and having such a run around from your doctors. I definitely agree you shouldn't be shy about being the squeaky wheel. What you're going through can't be normal and they need to help you! I hope you're able to get some answers soon. (((HUGS)))

Laurakat81

I think if all the doctors you have seen are all saying the same thing and no progress is being made then yes, its time to find someone else, even if that means going out of your insurance. I know racking up medical debt is scary but you've been dealing with this for so long. I don't know much about the bleeding or the estrogen but I just hate that this journey has just lead you in circles. (((hugs)))

AudUy

I have nothing to add to the other suggestions about dealing with your bleeding. I do want to suggest, though, that you request an iron and hemoglobin level be drawn. I've had two separate bouts with anemia since my D&C and it has caused me a lot of extra grief.