Blood clot in both lungs....now what?

[Sakura]

Well, it finally happend. I ended up with a DVT and a resulting blood clot in both lungs(because I missed the warning signs ) It is not entirely clear if HRT caused it. I have been out of work for nearly 5 moths with a severly sprained ankle ( tore a number of ligaments and tendons) which has greatly reduced my mobility. I have been mostly sitting(literally) waiting for my surgery date. Regardless of how it happened as of right now I have been ordered to stop taking hrt. I have yet to fallow up with my endo, I now have to see a hemotologist. I have been on Hrt for the better part of two decades, truthfully the thought of blood clots had passed far from my mind years ago and now I am scrambling to figure out what I can do. I am not asking for medical advice. But I can't seem to find info to pass on to my doctors when time comes about alternative treatment. I can still take anti andorgens but it is estrogen that is the magic component of Replacment therapy.....

 

Its wierd how it happened. I was expecting something more grandiose, A minor pain in my calf that felt more like a cramp after a little to long a walk. Then with in hours I was in the ER unable to breath coughing up blood in some of the worst pain I have ever experienced in my life. PSA always pay attention to the warning signs when on HRT. Sorry musing a bit.  

[VickySGV]

My experience from a DVT in my right leg in late 2015 was that I was off of hormones for 6 months taking an anticoagulant to get things stabilized and to prevent new ones from forming.  My PCP and Endo both got in on it, and I now can use the E patch but I have to be on the Warfarin while taking it, but both also want me to keep the E going even though I am in my 70's now.  Both Doc's and my surgeon (Marci) also agree that my DVT was probably not from the E itself, it was from sitting too long in an airplane and car before an infection/ injury had fully healed.  I did not lose anything during my 6 months off E. but I had been on it for 6 years at the time.  I hope you can find some stress relief in this if not some help. 

 

Being on the Warfarin is not really a big deal, but my purse first aid kit has some heavier gauze pads in it since I need to get direct pressure  on any wound pretty fast.  With the direct pressure, I have no real problems healing, I just don't get to clean wounds first like I used to.

[Jani]

I'm sorry to read this Sakura.  Healing from injury is never enjoyable and now this.  I hope the follow up with the specialists provide some positive news for you.   All my best to you.

 

Jani

[Cyndee]

Take care Sakura, hope you can get back on your feet soon

 

Cynthia -

[RithiaAllen]

Oh my goodness. My prayers are with you Sakura.

[Sakura]

Thank you all for the well wishing.

 

And thanks Vicky for the information.  I'm not overly concerned about having to be off HRT for 6 months or even a year, after 17 years I would imagine it would take a while for any reverse effects to start happening. My fear is never being able to take them again. On further diging I have found that transdermal patches are and option. Not one I am thrilled with. I tried patches years ago. I had trouble getting them to stay stuck.  I found some interesting info that maybe relevant to those taking HRT though. While not directed at transwomen it states that women who suffer a blood clot while taking HRT or birth control may still be able to take it if also taking a blood thinner. I am taking this new medication Eliquis I am new to blood thinners but it is supposedly less hands on than the older medicines I am not sure how different it is or how it pertains to HRT but something worth mentioning and looking into.

 

 

[Jani]

Hello Sakura.  I use patches and have had good experience.  Here's what I do. First, clean the area with witch hazel. (Alcohol may be too harsh.)  Place the patch(es) on your backside within the top and bottom bands of your underwear so there is minimal rubbing.  I have taken to covering then with a clear waterproof bandage (Opsite Flexifix or Tagamet).  Both are available on Amazon although the Opsite product is less expensive.  If you use this, round the corners before applying.   I alternate between left and right sides each week.  

 

Jani

[VickySGV]

Although the patches say they are for 7 days, after 6 months I told my Endo about them falling off, and she asked me how many days they usually lasted.  I told her "about 3" and she re--wrote my prescription for the 3 day use pattern, and now I am almost over supplied.  I don't like them but they beat not having it at all. 

[Carolyn Marie]

I'm sorry you're going though this ordeal, Sakura.  I hope that your blood clots are treated well and your lungs heal quickly.  It seems like you've gotten some really good advice.  Take care and best wishes.

 

HUGS

 

Carolyn Marie

[tracy_j]

Take care Sakura! You will find a way though the minefield.

 

Tracy

[Charlize]

I'm sorry you are going through this Sakurai.  I went through much the same issues with severer coronary artery disease.  I had a heart attack after stopping blood thinners in preparation for an orchiectomy.  My cardiologist insisted i could not had to stop HRT.  I did with tears and a sinking depression.  Dr. McGinn said i had to get the approval of a cardiologist prior to resuming.  Eventually i found a great Dr. at the University of Penn. Hospital in Philly.  Today i'm glad to say the post orchiectomy i'm on a topical E spray which i use once a day.   Years have passed now and my health has been as good as it could be given my history of heart damage caused by smoking and years of alcohol abuse.  If you are interested in a good accepting program i would recommend U of Penn.

 

Hugs,

 

Charlize

[KymmieL]

It was just over a year ago I have a DVT and PE, in both lungs. I caught it in time before it affected my breathing. Spent 4 days in the hospital (2 in ICU) I did my 6 month warfrin treatment and was told I was clear. I never knew how bad it really was until about a month out of the hospital I saw one of my counselors and she told me.

I had no disposition for blood clots, my DVT was in my right elbow. That is what was thought caused my PEs.

My blood clot history is the reason I am on Spriro only. I had blood work done today, I may talk to my provider when she calls tomorrow about maybe the E patch. But will follow her advice.

 

Kymmie

[Sakura]

Well I had my fallow up with my endo. He pulled me off of E annnnd Spiro... that was a few weeks ago and.... things are already starting to get weird. Hot flashing and severe mood swings that come out of nowhere restlessness I seriously feel like I am crawling out of my skin at times. I'm not sure how I am going to manage it til the end of July when I see the hematologist and then what if he wont clear me to go back on hrt ? I don't know if it is the sudden change in my hormones or what but it is the first time in a long time that I am feeling over whelmed by my situation by my condition by my emotional state. Sorry to dump this all on you. My long time therapist closed up shop about a year ago.... so I havn't got a lot of people to vent too.

[Charlize]

I'm sorry you are going through this Sakura.  Having been there i know the symptoms you describe.  The physical aspects and mood improved with time.  The emotional feelings of being upset lasted for a longer time.  I was amazed at how little my doctors seemed to care about my dysphoria.  I would certainly recommend looking for a new therapist.  

Please keeps in the loop.  With luck you will be able to get past this and accept the results.

 

Big Hugs,

 

Charlize

[Sakura]

Thank you Mary

 

I think that is what is aggravating me most, Charlize. The doctors don't seem to understand I have been on Hrt longer than I have been on my own natural testosterone. This isn't like turning a car on and off there are repercussions both physically and mentally to taking these medications specially long term and then just stopping.  I was prepared to stop the E since that is the primary cause of DVT( I still don't think it was caused by hrt but I am not a doctor so.) Anti androgens are not related to it. So I was shocked that they said no and I didn't even get any warning either. I got told no on the same day my scripts ran out so maybe I could have weened my self off, but no I just got stopped cold turkey.

[Jani]

Sakura it is certainly all right to vent and speak your mind here.  We are here to support each other the best we can, even if its just to lend an ear.   I am surprised your antigens were stopped as well as I wouldn't expect them to be an issue.  Is there any way to connect with a transgender specialist in hormone regimen to inquire and maybe have them talk to your doctor about this?  Cold turkey is not good. 

 

Hugs, Jani