Teressa's Journal

November 2024 Update - It has been a year since my life turned upside down. Last November I went to the hospital for a simple outpatient D&C. I ended up in the hospital for 3 days, leaving with O2 and a list of diagnoses, the most severe of which was Aortic Stenosis.

My surgery was January 4, 2024, so I'm at at 10.5 months out. It has been a wild journey. I've been a bit in my feels as I remember myself a year ago. It didn't help that I had another simple outpatient procedure on Halloween, so I was more than nervous about something going wrong. Fortunately, the upper endoscopy on Halloween went very well and my nurse anesthetist was AMAZING. She helped me calm down and whispered encouragements to me before and while she was putting me under. Her kindness is so different from some of my other medical experiences.

Here is the best news, I'm no longer nauseous all day every day. 
I've been dealing with nausea and vomiting constantly since my surgery in January. I am also unable to eat beef, chicken, or pork. My GI doctor walked into the OR and said, "After reviewing everything again, I think you are Celiac." Boom, there you have it. I went gluten free on Nov 1, and now I'm no longer sick all the time. I'm still waiting on the biopsy results, but I don't really care, if not eating gluten makes my life liveable, gluten free it is. Apparently Celiac Disease can be triggered by major stress and/or surgery if you have the underlying genetics for it.

I saw my GP last week for a 6 month check up. My bloodwork looked almost perfect. My liver and kidneys are working well. My A1C is in the normal range.

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The 4th of July was 6 months post surgery for me. I feel like that is a milestone worth noting. In general I'm still improving. The chest pain comes and goes, but isn't bad at all, just there. Where they disarticulated my rib is the worst spot, with my heart being a distant second. I'm still getting sick a couple of times a month and feeling nauseous multiple times a week, but it isn't as bad as it was. The GI doctor never followed up with me post tests, so I've reached out to his office. I truly hope this isn't just my life now.

My weight loss has plateaued, but I think part of it is rebuilding muscle. I've only lost a couple of pounds over the last month, but I have continued to get smaller and stronger. This tells me I'm adding muscle, which is denser than fat. I had the holiday off, so I tackled cleaning my clothes closet, dresser, and purging my clothes that are too large. I still had a hard time parting with some tops that are okay with a jacket, but otherwise, I was ruthless. I took 5 bags to the local charity thrift store! This might not sound noteworthy, but I worked hard physically all day. I did take a few breaks, but I was up on my feet sorting, trying on, and hanging clothes for hours. I walked over 11K steps, mostly in sets of 3-10 as I moved clothes from the bed to the closet. I expected yesterday to be a challenge because I had pushed myself on Thursday, but surprisingly, I was fine. This is probably my biggest recent success physically.

Mentally I'm doing okay too. I took an online seminar and have some creative ideas brewing. Before my father's cancer surgery and my illnesses, I was looking at grad school for an MFA. I put in an application last week. I figure I can try a couple of classes and see how it goes. If it is too much or I'm not ready, I can always become a "college dropout." I haven't had anymore dark days, but I have had a few dark moments. Fortunately, I quickly acknowledge them and dismiss them. Meditation techniques work well even when not meditating.

Next week will be 5 months since my surgery. All in all I'm doing much better. Here are some details in case it helps anyone to know for their journey.

I finally saw the new cardiologist this week. I am so glad I changed doctors. It is making a world of difference having someone who seems interested in my health. This is the same doctor who did my heart cath pre surgery, my old cardiologist doesn't do any interventions. He at least reviewed his notes thoroughly because when I mentioned that I chose him because he handled my panic attack on his operating table well, he told me I also had a spasm at the same time. He said normally when a patient has a spasm he switches to the groin, but he only needed 1 more image and felt it would be worse on me to go in a second time. I agreed and told him he did a great job of getting me through the panic. He told me to remind him if I ever need another one so he can pre-treat my anxiety.
We talked about my blood pressure and how things are going since starting back on BP meds. He explained why my diastolic pressure was still high and that my range was going to be normal for me. He wrote me a prescription for 90 days worth of Warfarin instead of 30 days. I still need to do checks, but I will not have to be rushing to get the new prescription approved in time to not miss any doses. (I missed 1 dose last week because of this issue.
He is very pleased with my recovery. His advice was walk, walk, walk. Since he was the one that did my heart cath he had the best knowledge of what my arteries, etc. look like and thinks my systems are in great shape now that I have the new valve. He also found the results of my heart monitor I had heard nothing about from months ago. Apparently the things that it measured are excellent: less than 1% early or late beats (PVCs, etc.), no AFIB, no high or low heart rates.

I also finally saw the GI specialist last week. I'm still vomiting about once every week and a half, but that is manageable. I'm also having some nausea, but it isn't constant 24/7. He is proceeding cautiously, which is the right thing to do, but also frustrating. No scope yet because of my Warfarin and not wanting to use anesthesia on me right now. He wanted to do a test for gallbladder function, but it requires contrast dye. I'm allergic to contrast dye and he can't pre-treat for that because it interferes with the gallbladder function. For now he did a ton of bloodwork and a poop sample. I see him in another month.

I'm no longer having nightmares and PTSD symptoms about my first night. Most of the time I'm in good spirits, but manage the less good times okay. I'm learning my new limits, but constantly pushing them to continue my improvement. Things that require bending and stretching, especially combined, like loading and unloading the dishwasher are still too much. I'm fine with the laundry though. My weightloss is still progressing, but at a normal/healthy rate now. When I reach the next "milestone" weight, I'm planning a huge purge of my wardrobe because most of my clothes don't fit anymore and have gone from loose and flowy to just too big. I know, a great problem to have! I'm still having some pain, mostly where my rib was disarticulated, but my new cardiologist felt this was normal recovery. My hair loss continues, but I cut it all off a few weeks ago.

Let's talk hair loss. Has anyone else experienced significant hair loss before or after surgery?

I had very thick, relatively coarse, naturally wavy hair. Based on the handfuls of hair and the size of my braid, I would estimate that I've lost about half of my hair. Fortunately it has been all over, so I don't have any bald spots. I noticed an increase in hair loss after I started this journey in November. It continued through surgery and ramped up even more a few weeks ago. I know it isn't abnormal between the stress, the healing process, and nutrition issues, but it's still frustrating.

 If you had hair loss, when did it level out and start to come back? I'm thinking of cutting a lot of mine off so the regrowth will blend better. I cut 6-8 inches a few weeks before my surgery, but I think it's time for another short cut.

At 14 weeks post surgery my emotions are mostly back to normal, but sometimes, out of the blue, it all feels overwhelming. Last night in I rolled over and could hear my valve clicking. Normally this doesn't bother me at all, in fact, I usually view it as reassuring when I notice it. Last night that wasn't the case. I felt so overwhelmed with feelings about having a foreign valve in my body and having gone through surgery with all of its emotions and physical pain. Will I ever fully recover? Will I be healthy again? I have to live the rest of my life altered. Fortunately, my husband was still up and sat with me until I calmed back down and started drifting off to sleep again. 

Today I'm not in the same heightened state of emotion, but I feel blue. It doesn't help that outside is wet, windy, and dark. I think I need some tomato soup, a toasted cheese sandwich, and some hot chocolate.

Wishing everyone an untroubled day.

I'm at 11.5 weeks and 5 weeks back at work. I'm still recovering, but I'm feeling better than I did after my problems began.

I saw my GP and my Pulmonologist last week. Both appointments went well and I got good news.

The GP is pleased with everything except for my BP and my vomiting. My BP was great right after surgery then went to 200/100 at about 4 weeks. It has stayed that high despite going back on BP meds. She made an adjustment and added back the BP pill with the diuretic. There isn't anything wrong with my gallbladder, as a matter of fact, it looks beautiful. She made a referral to a GI doctor. Finally! In the meantime, she started me on an acid reducer. Many of you mentioned having or needing acid reducers post surgery. I have to say my nausea seems to be better, but my aversion to meat is still here. Hopefully that is all that was needed. Of course, why didn't we do this sooner?

My pulmonologist compared my previous CT with the recent one. She has ruled out Interstitial lung disease, which is fantastic news. She thinks the majority if not all of my lung issues were caused by the Aortic Stenosis and I just need time to heal completely. I'm scheduled to see her in a year unless I have an issue.

I haven't written here about my first night post surgery because it was so traumatic. I'm having to deal with some of that trauma today because my father had carotid artery surgery today, and I'm fighting with the hospital to stay with him overnight. I refuse to let anyone stay without an advocate after what happened to me. I'm supposed to have a conversation with the CVICU/ICU manager this afternoon to discuss what happened to me back in January. I'm going to go ahead and write it here so I have a record and to help me get my thoughts clear for the conversation.

Things post surgery started okay. When I woke up my husband and father were there, but I was still intubated. I was in severe pain in my back and in my right breast where they put the camera through. For clarity, I'm very large breasted, so this was a deep puncture wound. I continued to stay in severe pain all night long. They refused to allow my husband to stay with me that night, so I was without an advocate. I knew it was not going to be puppies and rainbows, but the level of pain I experienced was extreme. 

After being in pain from the moment I woke up, they moved me to the chair and made me stay there until I was moved to normal room the next afternoon. I was never allowed back in the bed during that whole time in CVICU. At 4:00 AM they decided it was time for me to walk. I was still in severe pain. I was literally balling my eyes out and stumbling along with the walker. The nurse in front of me started yelling at me. Yep, yelling at me. She was saying things like "You're never going to get out of here if you don't walk right now. Open your eyes. No you can't stop." I was a checkbox that come hell or high water they were going to mark as completed. Now I get they they have certain milestones that should be met, but I am a person, not a number. Writing it out, it doesn't seem that bad, pain after heart surgery and a rough first walk. The reality is I have never felt so helpless, dehumanized, hopeless, or vulnerable  in my entire life. That was literally the worst thing that has ever happened to me, including watching my mother die, twice.

The emotional impact is way worse than the physical pain was. I know this is more about me and my anxiety, but I'm still having nightmares and panic attacks about that night at nine weeks out.

The first thing my nurse did the next morning was look at me and say, "let's get your pain under control." She was amazing. Possibly the best nurse I've ever encountered. After that I was walking all they wanted and more. I was asking for extra walks, etc. Because of my lung issue, I only spent one night in a regular room, then went back to CVICU. (Sleeping with 15L of O2 was a bit too extreme for a regular room.) The remainder of my time was normal recovery. My recovery post hospital has been fine except for the continuing nausea and vomiting. 

I truly hope no one ever has to go through what I went through that first night. One of the salt in the wound things is I expressed to my surgeon's NP in my pre-op appointment that my two biggest concerns were my pain not being managed and being forced to do things before I was ready to do them because of how my mother was treated. It's like a had a premonition of things to come.

Tomorrow will be 8 weeks since my minimally invasive aortic valve replacement with an On-X 23mm mechanical valve. My question is how long did it take for you to be pain free? I've been in the tolerable level without medication since a week or so after surgery, but I'm curious when does it really stop?

I have my additional problem of nausea and vomiting that causes its own set of pain, i.e. my ribs are very sore, but I'm still experiencing quite a bit of pain and discomfort.

Yesterday marks 7 weeks since my surgery. Right after 6 weeks I started feeling like myself again. I returned to work on Monday at 6.5 weeks.

I'm still experiencing nausea and vomiting multiple times a week. My cardiologist thought it would be fine for me to wait a couple of additional months then maybe see a GI specialist. (I've requested to change cardiologist.) My GP did bloodwork and scheduled an ultrasound of my gallbladder for next week. I know my gallbladder is of no interest or concern for my cardiologist, but the fact that he though a few more months of constant nausea and throwing up was acceptable means he is not the right Dr. for me.