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Hematologist appointment?
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I will be seeing my Hematologist for the first time in a couple of weeks from now and have been writing down questions to ask her because my PE's were unprovoked and the Internest thought at the time they were due to early stage cancer, but the majority of testing has come back negative for that too, which is good . So I was wondering if anyone had ideas on what I should be asking my hematologist at this appointment, any and all thoughts would be appreciated. From what I have been told by the nurses at the AC clinic not everyone gets in to see a hematologist here, they wrote to her with my file and the unprovoked PE's which they suspected came from DVT's in my legs but I never had a Doppler to confirm that, so I want to make this appointment count and I feel if we don't ask the "right" questions we are looked down upon and I am tired of that too. Thanks again
Posted on 01/01/14, 11:28 pm
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Reply #1 - 01/02/14  6:14am
" Hi,
The unprovoked PE's are scary, but as you said, thankfully it's not cancer! Your hematologist should test you for all the possible thrombophilic (clot loving) blood conditions, including genetic predispositions. If you are on Warafin, she won't be able to test you for protein C and S until you come off. You are right to be doing the research and making the appointment count. Clot Connect, if you haven't checked it out, has some great resource links.
Good luck and let us know how it goes. "
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Reply #2 - 01/02/14  2:25pm
" Thanks MI3752, I went on the clot connect website and saved it to go thru it further later on :).

Today I had my INR done and its gone down from 2.8 to 2.0 so warfarin was adjusted accordingly, drat lol. I also did a lot of thinking thru the holiday's and am not happy with my current care so I started the new year off right by going to the AC clinic and going over what exactly happened to me, they were finally awesome with me today or just wanting to get me off their back lol, but from what they showed me on my chart was I had massive bi-lateral saddle pe's ( hope I got that right) and I am only 3 months out from this happening, the ER dr did do a scan on my right leg and said the whole clot let loose and ended up mostly in my left lung and residual pieces went to the right lung. I also went over with them the symptoms I have been having since this happened, pale skin colour, dizziness, shortness of breath, heart palpitations, anxiety and just a feeling of being unwell most days, they said the hematologist is aware of my complaints on all of these and will be sending me to a cardiologist for further assessment, they said to still take it easy and not over due it as this is going to take a long time for the lungs to heal and if there is further damage to heart etc I don't want to be straining it more than I need to, short walks and limited housework is all they recommend for now. I am extremely thankful they told me all of this but still wonder why my regular dr didn't bring this up, I have asked many times and she has been my primary dr for 30 years so I am quite disappointed in her today, they also told me to utilize the walk-in clinic;s or ER when I do not feel well because it is not the warfarin doing this, so I need to be seen by a dr when I feel close to passing out or extreme dizziness.

I need to wrap my head around all this info and have had my cry over this, and now I pick up and move on, thanks for bearing with me and letting me vent. Any and all advice is extremely welcome today I am feeling really low but will not let it get me down too long :) "
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Reply #3 - 01/03/14  6:56pm
" Wow, I was told I was lucky not to have had a saddle clot like you are describing. I can only imagine how difficult it was to catch a breath with both of your lungs being occluded. definitely keep seeing additional doctors if you feel like you are not getting the care you need. I saw 5 doctors until they finally diagnosed my PE three months later. after it was initially thought to be Pneumonia. Your INR will eventually level out to where it needs to be. "

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