heart screening in Carney Complex

Heart Screening for Cardiac Myxomas

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Reg­u­lar heart screen­ing is part of life for peo­ple with Car­ney Com­plex. In this blog post I attempt to share with you the roller-coast­er of emo­tions involved. I’ve nev­er real­ly shared this with any­one as it’s kin­da ‘taboo’ and not some­thing you’d usu­al­ly talk about.
For any­one deal­ing with Car­ney Com­plex or a dis­ease affect­ing the heart: please be mind­ful of what state your mind is in before reading. ❤

Another six months were up. It was December 20th 2018 and I had to go in for my bi-annual heart screening, transesophageal echocardiography (TOE).

As the nurse read­ied me for the heart ckeck-up I caught myself wor­ry­ing. Short­ly after being hooked up to the echocar­dio­graph (EKG) and intra­venous access, the doc­tor entered the room. I quick­ly dis­persed of the anx­ious thoughts try­ing to creep up on me and focused on exchang­ing pleas­antries. Not recall­ing ever see­ing her before, I asked the doc­tor if she was new to the depart­ment – she was. 

That’s the answer I dread the most because I won­der how famil­iar new doc­tors are with my case. Appre­hen­sive they might miss some­thing because they could be over­worked or just not knowl­edgable on Car­ney Com­plex. Catch­ing myself, I pushed this thought aside acknowl­edg­ing this is my fear talk­ing and refo­cus­ing my atten­tion to being in the present, to trust this doc­tor and her skills and that she (quite lit­er­al­ly) has my best inter­est at heart. Most of all though to trust that I have the willpow­er to stay calm and lev­el head­ed and keep­ing my expec­ta­tions realistic.


source: wikipedia, by Fruehaufsteher2

To start off she decid­ed to do a quick transtho­racic echocar­dio­gram (TTE) and announced that all looked fine. A wave of relief washed over me but it was short-lived. My mom’s sec­ond car­diac myx­o­ma expe­ri­ence remind­ed me of the fact that they did­n’t find hers on the TTE. The remark made by an intern from a cou­ple years back came to mind too. He had to do a TTE on me right before my sec­ond car­diac surgery. I asked him what the chances of him locat­ing the myx­o­ma was with­out the pre­vi­ous images of TOE and MRI. His response: ‘If I had­n’t known where to look, I prob­a­bly would have missed it 8 out of 10 times.’ My sec­ond myx­o­ma was on the back wall of my left atri­um, tucked away.

Induced Euphoria

The doc­tor sig­nal­ing to the nurse that she was ready pulled me back to the present. A mouth guard was strapped on to me. This ensured that I did­n’t bite down on the tube she was about to insert into my esoph­a­gus. Then the doc­tor made sure I was posi­tioned cor­rect­ly for the TOE

Give her 20’ she advised the nurse. With­in sec­onds I could feel my body pleas­ant­ly relax­ing. As my vision blurred, I decid­ed to close my eyes and inhale and exhale deeply. ‘Anoth­er…’ I heard the doc­tor say. Her voice sound­ed muf­fled and I could­n’t make out the rest of what she was say­ing. Every­thing slowed down. I let out a sooth­ing and relax­ing sigh, allow­ing the feel­ing of eupho­ria to rush through me as I told myself all will be well. I was appre­cia­tive for Propo­fol’s side effects and the next few min­utes of peace of mind.

One more deep breath and…

… I opened my eyes, wak­ened by two nurs­es talk­ing to eachother while mov­ing my bed to a wake-up and sur­veil­lance booth. The heart screen­ing was over. Now I just had to give myself time to wake up and wait for the doc­tor to tell me I’m in the clear. With­in min­utes my part­ner walked in. Sur­prised at how quick­ly they let him see me but nonethe­less hap­py, I asked him to check the mon­i­tor. Curi­ous to know if the extra Hydro­cor­ti­son, I took ear­li­er, had helped with my blood pres­sure. It was still low but defin­i­tive­ly bet­ter than last time. We talked about what each of us had planned for the rest of the day. Most of the time we spent laugh­ing a lot. At some point I asked him what time it was. When he answered it was going on 10:45 am I was tak­en aback.

That’s when anx­i­ety entered the room again. My mind start­ed rac­ing: ‘The appoint­ment for the heart screen­ing was at 8:15 am. Usu­al­ly I’m up and out some­where between 9:30 and 10:00 am know­ing all was clear.’ It only took a split sec­ond for all the hap­pi­ness and the free­dom of a care­free exis­tence to be sucked out of me. Grasp­ing at a last shred of hope I tried to tell myself that there could have been an emer­gency and the doc­tor could have been pulled away. Des­per­ate­ly try­ing to mute the oth­er voice telling me: ‘You must have been in there longer because they need­ed to make sure they got good images. The new doc­tor more than like­ly asked anoth­er senior col­legue in to have a look at it too.’

What’s on the otherside of the curtain?

source: flickr, by prefei­turi­ade­bc,
cropped the image

The next 35 min­utes felt like being trapped in lim­bo. Minute by minute I could feel help­less­ness, hope­less­ness and despair spread­ing through my body. It took every­thing with­in me to not let it turn into frus­tra­tion and anger as time crept by. Then the cur­tain, seper­at­ing my lit­tle safe area from doom­ing real­i­ty, was drawn back. In came the new doc­tor fol­lowed by some­one I knew well. I went numb.

Doc­tor K., who has known me for more than a decade and per­formed a lot of my heart scans, walked in with a mod­el of a heart in his hands. Before he could say any­thing I just said: ‘Oh no, anoth­er one?’ Vis­i­bly sad­dend he noded.

Despite feel­ing numb I also felt grat­i­tude. Grat­i­tude that some­one I knew and who was famil­iar with my med­ical his­to­ry was telling me the bad news. I was so thank­ful to have my part­ner with me too. I felt safe despite all the doom that came crash­ing down on me. Dr. K. sat on the low­er end of the bed, heart mod­el opened, try­ing to explain the find­ings to me, want­i­ng to make sure he answered all my questions. 

Negative-Thought Spiral

I was­n’t there though; my mind was still numb and blank, think­ing this can’t be true. The thoughts that first start­ed to cir­cle in my head were: ‘Not again. I don’t want to have to face this so short­ly before Christ­mas and New Years. I don’t want to have to deal with telling every­one the news. I’m so tired that news about me always involves my health and surg­eries… I’m so over hav­ing to deal with all of this. Period.’

When Dr. K. said he want­ed me to have a car­diac MRI asap I man­aged to snap out of it. The urgency and con­cern were writ­ten all over his face. He knew the car­diac myx­o­ma had to come out. So did I. But then and there I was­n’t ready. I did­n’t want to have what would be my 3rd heart surgery. I knew of oth­ers in the Car­ney Com­plex Sup­port Group that did­n’t have to have surgery right away, as long as the tumor did­n’t grow anymore. 

Asking for a Second Opinion

So I asked him if he would be will­ing to con­tact the spe­cial­ists at the Nation­al Institue of Health (NIH) in the US and ask their opin­ion on how soon they thought the car­diac myx­o­ma had to be removed. I was so relieved when he agreed and said that he would, think­ing maybe… just maybe I would­n’t have to go in for surgery so soon. Every­thing in my body was scream­ing we need to get out of here, we need to move, to process and let every­thing sink in.

As I stepped out of the hos­pi­tal I fell into my part­ner’s arms and final­ly was able to cry. I faint­ly wished I could have my care­free exis­tence back and the free­dom that comes with not know­ing what I know but that is not the fate of those with a rare dis­ease. I knew the next cou­ple of days, weeks, months would be hard and just hoped I could keep myself from slip­ping into depression.

To be continued…

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