Suzette's Journal

One more day to go.  I’m so excited to get this smelly thing off and get my monitor out of my pocket.  It caused me a serious rash can’t wait to get normal skin back.  I’m in a catch 22 moment hope they find something and hope they don’t.  I’ve slowed down so much I’m about 20% capacity of energy that I did have.  I sleep a-lot. I have great support but I’ve been disassociated mentally.  Seeing life but going through the motions  with what ever energy I have.  

Two more days and the heart monitor comes off.  I was going to get Turkey sandwich at the dinner when I open my door and saw this on my neighbors lawn .  Needless to say I changed my lunch menu.  

After everything the test couldn’t be done they blew out my veins. So I went home teary eye but now I’m like f it. I do heart monitor and if after meeting with doctor and discussing the monitoring results - if needed I let them take another stab at it

Ct angiography for brain without die is approved . Call again angiography with die is approved. Called again for authorization number the place is not approved . You need to call your doctor and have them explain why you need the test. Like falling down balance and ohs isn’t enough. Called the doctor can’t get through begged the insurance to call as well. 2 days I don’t know how many hours on phone I final got approved. So no eating or drinking 4 to 6 hours . All 18 vitals of blood are with in range. Passed stress test. Ekg looks normal. Mri of brain is good . Mra is good. Echocardiogram is good. If the event monitor does not find what’s wrong I will learn to live with this. I fist bumped a ninety year old woman who got up out of her chair fell back down. I said I do that.

I made a decision after Friday’s test, I will
 do the event monitor as they requested for a month.  Then im  done with testing.  I can’t take it anymore.

Stress test came back good although I was happy I’m frustrated no answer.  Ct angiography Friday morning .  Insurance approve test waiting on place to be approved another call on Thursday 

Never had stress test was ready to walk on treadmill was informed my doctor doesn’t want that so I’m sitting here waiting to go in and get my picture taken wore my sneakers for nothing. 

 They won’t do the pet scan insurance won’t cover it I don’t fit the criteria  which is you have to be really really really heavy and have Hugh in chest  like ddddddddd.  If I wasn’t upset I would have started laughing.    Shouldn’t it be about health for all. There was a cancellation in stress test so I’m scheduled for that tomorrow morning.  I don’t even think insurance has approved it yet so I’ll sit in doc office until they do.  Then Friday is the angiography I asked insurance about that and the without die was authorized but not with die.  After this then I get dessert - I can get the event monitor so they can finally figure it out or at least I hope so. 

Today // while working I get call from doctor  with instructions . echocardiogram Thursday.  Set appt asap for mra with contrast then we’ll set pet scan test so we then put monitor on for a month.  Then after that we will do stress test.  I have a bad attitude in my mind like who cares do whatever you want.  Have fun life is short 6 months post op.  I thought this is a one and done.  

Bugs bunny was making fun of Elmo Fudd. He kept singing a hunting we will go a hunting we will go .  I just made up my own song and changed the lyrics to a testing we will go a testing we will go . Hi ho the merry  another a testing I will go.  Cardiologist did a test last Thursday which cause him concern had to go straight for an X-ray. Came back good.  18 vials of blood came back In range ( Dracula will be happy)  without it being too long I now have 7 more test to between cardio and neuro.  

Although I don’t need my heart pillow anymore I keep it on my bed.  At night I’ve been holding it hoping some of the loved expressed on it helps finish some of my journey with answers.  I have a new appointment with my cardiologist next week for a new heart monitor this time for a month to test me for arrhythmia.  I also have a new mra with contrast scheduled and also the test with all the electrodes on my head.  Still going to work but this balancing act is getting tougher.

Back to the neurologist tomorrow, to find out about my findings. Just seems ironic to me I never had these issues before surgery. I’m trying to look at it as if I didn’t have the surgery and had problems healing they would have never found it. It’s easier to accept so I get out of my self pity party . ( party lasted for two days)

Going for brain mri tomorrow & mra    All my insurance and doctor phone calls for my mra authorization  ugh.  I’m feeling grateful just getting tire of the setbacks. If they find nothing wrong with brain then there’s more issues with my heart.  I’m having a hard time concentrating and living with grace.  

My Nobel neurologist.  My cardiologist sent me to a neurologist as an emergency patient. I went in opened minded scared and a list of questions being my own advocate.  She did test me and ruled orthostatic hypertension crossing out my Emergent Room diagnosis.  Walk on you heels walk on your tiptoes that was fine. walk on foot in front of the other. You can’t pass the dwi test I thought you said you don’t drink. Her face said it all. Brain scan / mra/ blood work  bunch of prescriptions of tests, I think it’s your heart and one day monitoring with a holter isn’t enough did you have an episode with the monitor on, I didn’t , but back to business I’ll do my job.  I think it’s your heart. I think your electrical pulses are short circuiting and are you still on this med which I answered no - well I’m glad that one is toxic and could have cause this.  She thinks I should get under the skin heart monitor and doesn’t want to upset the cardiologist but disagrees with him but will do her job ruling out things. Such a weird journey feeling hopeless helplessness and hopeful at the same time 

Had a slight pity party including tears, isolation flowed with frustration. Saw cardiologist wed who did ekg. This week holster monitor. Following Monday an echocardiogram. I held off because I wanted to celebrate another birthday. Very low key with car ride to Jackson pollocks studio and house. Very slow pace. My breathing still hurts as if a board is pushing on my chest. Still lightheaded and at time dizzy. I wanted to be normal for a day.
Cardiologist indicated keep hydrated, if we don’t find anything you are going to neurologist. Since Breathing still hurts on Friday even after doing nothing. I decided this is ridiculous, took control and played the game what we can rule out.
On sat I took a shower packed a book, phone, a protein bar, in my backpack. I drove myself to the ER. I didn’t want to explain anything to family friends. So I just went. They ruled out my lungs and ruled out no blood clot in legs, ruled out my brain with a ctscan, They did echocardiogram and it appeared normal for what my normal is. They did a position blood pressure test lay down, sit up then stand up and my blood pressure dropped. So they said I had to move slow with position change 1 minute in each change should help. (orthostatic hypertension). I still know there is something wrong. But I was able to rule out a few things instead of waiting weeks hoping things don’t get worse.I did ask about overdoing things. The cardiologist talked about commuting walk and he asked me about the time it took and it was double from what it was before ohs. He was okay with the mile walk. So even though I cut back 50% of my activity he doesn’t think I should cut back anymore because then there would be no activity. There seems to be a lot unknowns about side effects of OHs A lot of the doctors didn’t know about pump head. (So thanks to the person who mentioned that). Just doing my best to navigate through this. I got another pair of socks.

Dear journal last night was scary. Had did the city commute day got up at 5:00am was home 6:30pm. Rested on couch for Wednesday commute day. Breathing seemed off all day. I got up around 9pm to go to bed and my legs didn’t agree with my mind. (Like when your a kid got drunk and tried to get up and your legs don’t work) swayed into my table for balance waited to move and my legs and body was swaying. Sat down again . Finally made it into bed and stayed there. One of my girlfriends was up so we talked about going to er or doctor. I sent boss iChat not commuting today and I’m waiting for cardiologist office to open so I can get a sonogram to make sure nothings a miss. I can accept this is healing process just want to make sure nothing else is wrong. Time is standing still as I wait for office to open

Oops
3 months two week post op.
Went to shoe store with my boyfriend. Was looking at shoe sizes head slightly tilted and my body decided to follow and on the floor I was.  Balance is still off.  So I sat on the carpet and continued looking, as this lady asked me if I was okay.  I explained my surgery next thing we know we are sharing the top of our scars.  

Dear Journal

I have finally accepted that I am not the same and my expectations that I had set for myself was way to high.  I commuted to city to work tues  and wed .  When I came home 6:30 pm, I laid down to take a nap .  12 hours later  I was up.  

Dear journalAka amazing heart elite 
Sweating bullets to see the portal
My surgery was Feb 23 and I went back to commuting to work May 14.  Train and walking several blocks to work. I heard there was a portal to Dublin and decided to walk to it during lunch.  Basically Dublin can see people from nyc. and nyc can see people from Dublin.  I waved hello and got a wave back.  Did a peace a peace sign got one back.  It was fun and I laughed for the first time in awhile, was happy I pushed my self a bit. I walked back to office sat down and my co-worker friend said are you okay you look like you’re sweating bullets.  I said no, realizing I was sweating bullets got up from open floor( no cubicles ) sat in conference room for 10 minutes and went back.  My co-worker friend was the only person I told about OHS other than my boss.  It appears I over exerted myself and now have a problem with the heat.   I slowed down my pace and don’t walk in the heat.   Is the heat and issue that stays? 

My titanium twisty tale.
Dear journal, I opened my bread, and realized we have something in common twisty ties.  My diagnosis and surgery was done within 2 weeks. Didn’t know about robotic options.  They had to hold my sternum in place after OHS.  This protected my heart while my sternum healed.  It was done and I asked after if I could take a photo.  Here it is.  I added the photo of the bread for analogy and humor purposes.  I asked it does not set off alarms and they do not get removed unless there is a problem. 

Hi I had mitral valve regurgitation. Pretty severe according to the surgeon. Had surgery on 2.23. I’ve resumed or try to resume life and finding it hard to acclimate. When I speak , the wrong words come out. I don’t have the same stamina, have to constantly rest I’m always tired and I sometimes see stars. I’ve been checked and told all this is normal. I have such a disconnect from everyone and everything . I’m currently communicating and do work. The numb and shock is like a heavy weight of glass over my head. My humor comes out to keep the disassociation going. Has anyone experienced this?