Hey Friends! It’s been a minute since my last update! It’s been wild y’all. Today I am 7 Weeks post op from my Illiofemoral Bypass surgery in September! Whoop!
Long story short, I had a stent in my external iliac from an occlusion in 2016 that was collapsing and creating clots. I had my surgery here in Houston, TX under the care of Dr. Jayer Chung of Baylor College of Medicine @ Chi St Luke’s.
Next week I go in for another follow up with my Cardio and I’ll find out if I have to have another OHS or not...
Keep your fingers crossed for me guys! Really hoping for another Percutaneous Valve Procedure!!!
Hi Friends! It's been a little while since I last logged on, the site is looking great! Today I am currently 2 years and 4 months post Aortic Valve Replacement via Ross and 1 year and 4 months post Transcath Pulmonary Valve Replacement. I had an echo this morning and my DR posted my results already and I am feeling quite stuck. Let me explain..back in July of 2018 I started to feel tired all the time again, and my palpation's were out of control. I was exercising at home one day (yoga) and when I came up from down dog to forward fold to reverse swan dive, I started seeing spots and caught myself before I fell over. I figured something was up at that point. So, I scheduled an appointment with my cardiologist and he did an echo. Then an MRI... then after the the MRI he was like "we need to re-valve the pulmonary valve asap"... SO, I was like alright, here we go again. I let my employer know that this was going to happen and that I would need the time off and they were completely understanding and okay with it. Fast forward a week or 2 later, Dr calls back and says.. "Lets do a trans-esophageal echo before we do this". I do the TEE and I don't hear back for a solid 2 weeks. Results from that were that they have identified that the stented valve in my pulmonary position has a leaflet that does not work properly... but that since all my numbers look "good" and that I was stable they did not need to take any action. Meanwhile, I still feel so much pressure in my chest, I can barley breathe, I can barely work out without blacking out and yet I am supposed to be loosing weight...because he wants to prove that my weight has nothing to do with my problem... So he tells me that I need to shed some pounds before they will do anything, which is very upsetting to hear. I mean he's been telling me this for awhile idk it struck a nerve this time. So what choice did I have? I started dieting and working out more, (even though I am limited to what I can do...walk and stationary bike pretty much). I lost about 15 pounds all together in the last 4 months which I am pretty proud of considering my situation. Got married in Oct, and now I am prepping for my honeymoon in Hawaii (yay) next month.
Which brings me to last week. I called early Jan to check in to tell them "Hey I lost weight" do something about this situation now... Dr was super proud of my success but wants me to lose more of course because it is never enough. I asked him what I can and cannot do while I'm in Hawaii, just to be safe and he gave me my list of things not to do aka "don't get pregnant anytime soon", "don't go scuba diving", "don't go hiking", "don't do any intense snorkeling"...sweet. awesome. great. Then he ordered an echo, which I had done this morning. He posted the results and pretty much stated that nothing has changed, I am still stable and they still don't want to do anything about it because I am stable. This is the part that upsets me the most. I am literally telling him I DO NOT FEEL OKAY. HELP ME FEEL BETTER. I WANT TO BREATHE NORMALLY. I DO NOT WANT TO FEEL LIKE MY HEART WILL BURST OUT OF MY CHEST EVERY-TIME I MOVE MY BODY.
I just don't know what to do, and it bothers me that they do not treat patients that are very symptomatic but they have numbers that are "stable"...Why do I have to be suffering severely before they will treat me...This is why I am feeling stuck lately. Stuck in the middle of the spectrum.
The Pseudo aneurysm before the compression therapy!
Update posted on...
September 26, 2017
Pseudo Aneurysm Post Cath-
Has anyone ever had this happen to them? My body apparently hates catheters, because this happened to me. I was getting on well a couple of days after my Pulmonary Valve Replacement from 9/18, until a couple of days ago. I was in a tremendous amount of pain from walking then when I was just lying there, I had this intense pulsating stabbing pain attack. I called the hospital and explained to them what I was feeling and they had me come in yesterday, Monday to do an ultrasound. The test showed that I had a 3-4 inch bulging mass called a "Pseudo Aneurysm" that is just one of those complications on the list from Cardiac Caths. So how did they fix this? Well, one of the multiple ways of going about it is "Compression Therapy" which basically means they use an ultrasound machine to locate the "neck" of the Aneurysm and use the probe yo compress as hard as they can onto the neck to stop the blood flow. Was it painful? Absolutely.
Here's to hoping that you and I will never have to go through that again!!
My favorite person and I before my procedure! 9/18
Thank you everyone!!
Journal posted on September 19, 2017
My pulmonary valve replacement was a success!!! I am now sporting a Edwards SAPIEN XT Transcatheter pulmonary valve!! I never in a million years thought I would need another valve replaced just one year after my first open heart surgery.. but life is unpredictable and I can only grow stronger than before. I am very lucky to be in one of the best medical centers in the world with some of the best doctors. Thank you all for all the love and it’s great to be on the other side (again)!
How weird is it that my surgery was ONE YEAR ago on Sep 2nd? I should be a lot more enthusiastic about my progress, but I'm not. I have about 9 more days to go until my next adventure: "Trans-Catheter Pulmonary Valve Replacement"!
Hey all!! It's been a while since my last post. I am just over 7 months post AVR- Ross procedure! For a while I was recovering perfectly fine, kicked rehabs ass, then exercised 3-4 times a week. I had some insurance issues for a while and was not able to see my doctor until recently. (I hadn't seen him since I was 3 weeks Post-OP). Lately, I haven't been feeling as energized and become tired very easily (Back to taking naps daily). People ask me all the time how I feel now that it's been a while since my AVR, and I can honestly say I don't feel any different.
My last visit with my doctor was not a very nice one. He told me that my pulmonary valve is doing fantastic in the Aortic setting, but the Pulmonary Homograft is a different story. He suggested that the high pressure in my RV is due to the build up of scar tissue from the homograft. He wasn't able to give me a detailed analysis from the echo since they couldn't get a good view. He assured me that he will do everything he could to not have me back in the operating room, but there is still a chance I could have another operation in my near future.
Pulmonary Stenosis is my new diagnosis and I had a 2 hour MRI this past Monday, 4/10. I am scheduled to have a Cardiac Cath soon to see if my Coronary Arteries can pass a balloon and to measure the size of my Pulmonary Valve. The problem with having a Pulmonary Valve replacement via Catheter as an adult, is that the valves that are made for this type of procedure are made for children. If the balloon does not pass through my arteries and the valve doesn't fit, OHS for PVR will be the only option. Please keep your fingers crossed that I don't have to be cracked open again. I am not mentally ready to live this over again.
Today marks 3 weeks since my surgery!!! Crazy how time flies! I'm getting around a lot easier, I don't feel as sad as I did last week since I am able to do a few things ~mostly~ myself. Week 2 I was a hot mess! Crying everywhere and just about anything. This week, not so bad! Had my follow up echo w/ my cardiologist Dr. Diez and he said that I was doing really well and to just let the healing process continue! It felt good to know that I'm healing well! Still super upset that I can't drive for another few weeks UGHH! In Houston we drove EVERYWHERE, and not having that freedom makes me very sad. I stay at my moms house which is roughly 45 minutes from my apartment w/my boyfriend and my cats. Likely I have my puppy staying w/ me while I recover. He was staying w/ my boyfriend at home but became very sad and stressed because of everything going on, so we brought him here and he's doing sooooo much better! I think he knows that something happened to me, since he's a Dalmatian and still a puppy he's VERY active and rambunctious! But lately he's been so sweet and loving towards me and won't mess w/ me like he did preOP... (which is good obvi).
We've come up with an arrangement where I go home on the weekends and stay at my moms during the week. Which has been working out better for my sanity! So today I get to go home and back to life preOP for a couple of days!! YAYY!!!
My last post left off at the morning I woke up from surgery. Once they took the tube out of my throat I felt so much relief! The first day in Cardiac Recovery (ICU) was a bit of a blur. My family went home the night of my surgery, per my dr's request, so they were not able to be there when I woke up. Apparently when I was able to speak, I asked my nurse "Is anyone here" and she said "No". I didn't remember this conversation but my sister sure did and it was very upsetting to her. I don't really remember much from the first 2 days in the ICU, besides all of the visits from family and friends, and all of the naps!
On the 2nd day, members of the surgical team removed one of the 3 drainage chest tubes I had in my belly. That was not pleasant at all, since it was apparently twisted a little. UGH PAIN. I was in the ICU for 3 days. Those 3 days were A) during a weekend and B) during LABOR DAY weekend. So I may have not had the ~best~ nurses. My 1st nurse on day one was absolutely WONDERFUL! Very kind, she knew how much ice to put in my cup of water (I'm an ice girl) and she was not very strict about the visiting hours. The 2nd day, my nurse was a lot more strict w/the rules and not as attentive. I remember pressing my nurse button at least 3 times and waited 30 minutes for her to come back in to check on me. She was a tad on the 'rude' side. When she finally came in, she was like "WHAT?!". My family was not very thrilled with her either. I asked for more water, and she was like "you already have some!". RUDE RIGHT?! UGH thinking about her makes me angry.
The next morning I had some surprise visitors at 5:00am! YAY! JK. My boyfriends mother is up so early and hates traffic, so she came early lol. Luckily I was already awake because of the chest x-ray at 3:30AM and the bath I had at 4:00am! FUN!! That was my last day in the ICU. One of the surgical residents came to remove the rest of my tubes. This was the start to my very BAD day. One of my tubes had a blood clot in it, so the removal was not easy and quick. OUCH. The 3rd one came out just fine, thankfully. I was transferred to the cardiac floor a little bit later. Unfortunately I did not get a private room. The room I was moved too literally looked like it had once been a private room, and they were like HEY WE CAN FIT ONE MORE IN HERE RIGHT?! So I was really cramped, and HOT. The room had a messed up AC unit!! This is TEXAS YALL, ITS HOT. So I asked them for a fan, which they provided.
My first night in this room was rough. They removed the Foley Cath that day, and I was drinking LOTS of fluids. My PCA that night was very unpleasant. And I mean UNPLEASANT! My body had went through a lot that day, with the tubes begin removed and my catheter gone, It was a lot. So that night I had a couple of "accidents".... I was super embarrassed and emotional about it and apologized frequently to my PCA and she was just like roll her eyes and "UGH" at me. They had to change my sheets and gown. Maybe it had been a couple of hours later, and I had another accident. This time she just rolled her eyes at me as I am crying and apologizing... As she was cleaning me, she said "You just started your cycle"... and instead of being helpful at all she put a RAG down there... A RAG. I was livid... I called my nurse in to talk about how I was not happy with this woman and the way she handled the situation. So what happened? She came back in, this time with a pad, and put it down there and kept the rag there... Ladies, how ridiculous is this? I was so upset and didn't know what else to do. So I waited for the day nurse to come and I explained what happened, and they acted quickly to get me what I needed. I was so glad to not have to deal with that lady again.....
So, tomorrow it will be 14 days post op and today marks my first full week out of the hospital. I was in the hospital a total of 6 days; Friday morning to Thursday evening. My family and I arrived at the Baylor St. Lukes hospital at 10:30 in Houston, TX. I was so fortunate to have so many loved ones in the waiting room thinking positively and saying prayers for me. Shortly after we got there, they sent me back to the pre-op area, where I would eventually be waiting forever. Since my arrival time was 10:30, my surgery should have been at about 12:30, as soon as the big red clock in the room showed 12:00, we were told that my surgeon was called into an emergency surgery and they did not have any idea when I would be going in. Just my luck. Luckily I had so many people there for me, they came in 2 at a time to talk and comfort me while I waited for my new surgery time. It really put my anxiety at ease. After a couple of hours had past, I met with the anesthesiologist who went over what they would be doing first and all that jazz. Then, 4:00PM hit, the curtain was pulled back and my surgeon was now in front of me. He apologized for the delay and asked if I was ready. I said "I guess so", said my goodbyes to my mother, sister and my boyfriend of 6 years. The attending anesthesiologist introduced himself, and wheeled me down that long terrifying hallway to the OR. I am not going to lie, I was so scared. It did not really hit me until that moment, how scared I was. Like, I'm getting all choked up writing this. When we reached the OR, I was transferred to the tiny bed, had my arms spread out while they gave me my first "cocktail" and inserted the line in my wrist. After that, lights out!
I woke up the next day Saturday, around 6:45am with the ventilator down my throat. Of course, once you wake up and realize there is something in your throat you panic. I tried to stay calm. This is a little difficult to explain but I started swallow, so all of that saliva was backing up in my throat and I actually started choking...I couldn't tell them what was happening so I pointed at my mouth, which didn't help either since my arms were strapped to the bed. Eventually they grabbed the chart of pictures and letters for me to point at and I started spelling SALIVA!!! They were like "oh shit" because I was foaming at the mouth! So, that was a pretty traumatizing moment. Once that happened they had to remove the tubes right away, since it was going to keep happening if they didn't. I don't remember much about what happened after that, I probably fell asleep until my family arrived during the visiting hours.
Did any of you have your period during AVR? I'm due to have mine and I'm afraid the stress of the surgery may start my cycle. How do you handle this?
Also, are there any home health care things I will need? My mother was asking if I may need a bathtub chair or any of that sort? I'm pretty unsure, and I don't want them to purchase things unless we absolutely need to.
I met with my surgeon yesterday. Before that, I had to have a CT scan with contrast done so he can go over my results before our appointment. I was basically a nervous wreck yesterday. My last CT was not a breeze like this one.. I was at a smaller hospital and the tech gave me an IV, seemed like she didn't know what she was doing. IDK what happened but when she put that IV in, she let so much of my blood just gush all down my arm. Needless to say, I would never be fit for the medical field since I almost passed out from seeing a massive amount of my flowing down my arm. UGH still freaks me out.
After the CT scan, went to lunch with my mom then headed to the appointment. We got there fairly early, so the med assistant was able to get my vitals sooner, it was apparently too soon since we had to go back out to the waiting room after. Waited for a bit then they called my name.
Before I was able to meet with my surgery team, I met the nurse practitioner. She seemed like she was a normal human with normal feelings. She asked if I had questions, so I began to read from my list of questions. Since I am still unsure of which valve to get, I wanted to know more about the mechanical valve. My biggest and most legitimate question, is: will I be able to get any more tattoos if I have a mechanical valve? I love tattoos and I already have a few and they are quite large..I have a lot more planned that I would love to eventually get. So I asked. She straight up judged the crap out of me... "why would you want one? they are so ugly...think about what they will look like when you are 60..." She kept going. I WAS FURIOUS. this was a legit question that has been on my mind and she gave me her personal opinion and NOT a medical one. AND never gave me an answer. So, I was not very happy about speaking with her first. Shortly after she left, I was still upset from the conversation and luckily had time to cool off before meeting with Dr. Coselli.
Dr. Coselli and his team FINALLY come in to the room after almost an hour of waiting. He brought 2 members of the surgery team in and the nurse practitioner. So a total of 6 people in one small office, it was very crowded in there to say the least. Dr. Coselli was a very kind man, answered all of my questions professionally and did not get to emotionally invested. Best of both worlds I guess. We were a few questions deep when I asked him how many of these surgeries he has preformed... I am not lying when I say, as soon as I asked him that the nurse and a member of his surgery team LAUGHED! THEY LAUGHED. I LOST IT when they started giggling... I I am a pretty tough cookie and refuse to show people I have tear ducts in public, but that upset me. I was trying to listen to my Dr's response, but could not focus, so I stopped and got very verbal with his team and let them know that IT IS NOT OKAY FOR YOU TO LAUGH AT THIS!!! Hoping they get a good stern talking to after that appointment.
Unfortunately, I was not able to schedule anything yet. They did have a space to book for this coming MONDAY but I was like NO TOO SOON GOD NO!
If you have taken the time out to read all of this, thank you. Yesterday was very emotional, and I am still trying to process it.
Had an echo stress test yesterday with Dr. Diez. I walked in expecting to do the standard treadmill stress test, but they surprised me with the stationary bike! It was pretty entertaining.
I was able to meet with Dr. Diez later in the day after my test to go over my results. He told me that the Valve is under 1.0cm^2 and that my peak gradient is >40 so surgery is in my near future.
It is a very unreal feeling hearing those words. Which, I am very sure all of you already know that. I am very fortunate to be in the care of a fantastic DR and one of the best heart institutes in the country, which makes me feel more comfortable about the situation.
I will be seeing Dr. Joseph Coselli of the Texas Heart Institute on Tuesday. Keep your fingers crossed for me!
Lately I have been noticing my symptoms getting worse, so I called my Dr. to let them know. I have a stress echo scheduled on Aug. 17th. I am growing nervous for a couple of reasons, one of them being I have not been able do more than a face paced walk for quite some time due to the extreme shortness of breath... Another reason being unsure of what the next step will be....I know I can handle if the next step will be to replace the valve, but actually going through with it is terrifying.
At what point did your DR tell you that it was time to replace? I have a .9 opening with moderate regurg that is causing high pressure in my LV (I think, this is what I can recall from our phone convo yesterday). He suggested a six month follow up, unless my symptoms change then they will stress test me sooner..
Should I just schedule a consult with a surgeon already? I'm so ready to have this valve replaced....I really don't want to wait to get worse, unless they could do something now? (Before I lose my insurance... I turn 26 in Nov, and I am currently under a parent's plan...)
I Met with my new Cardio yesterday. He was a very kind and caring physician, which is a very nice change of pace for me. He thoroughly explained my condition and did an examination. He said he only had 2 concerns, 1) My heart (which I already knew about or I would not be making this post on this website) and 2) the loudness in my carotid arteries. #2 concerns me the most... We scheduled my follow up echos which are for my stent in my groin, my chest and now my neck...
Has anyone else been told this? This is the first time that something like this has been mentioned to me, and from doing my own research I may have to have another stent in my neck, or worst case scenario; a Carotid Endarterectomy if my arteries are too narrow...
So, with summer fun about to begin I have become very curious about what I can and can't/shouldn't do. And I wanted to get some thoughts and opinions.
I currently have moderate/severe Aortic Stenosis/Aortic Regurgitation, Pulmonary Hypertension, shortness of breath (all of the other symptoms of AS), and I am currently taking blood thinners due to the 2 stents in my groin from my heart catheter from hell.
Oh and I'm also 25 years old. You can imagine how frustrating it is to live with this and being young, all I really want to do is enjoy my youth. My concerns are about what cautions should I take if I wanted to say, go to a water park or go kayaking or any summer related activities.
I have been really down about my situation lately because I haven't been told I need surgery "right now" but could happen soon.... And honestly I just want it to happen already.
Do any of you have any thoughts or advice for me? I could really use some guidance...
Today I am going in for my follow up since the stent placement. I am really nervous to hear what they have to say after my echo today. Since my last echo, my Dr highly suggested surgery since my pulmonary HTN was high. The last time I had an echo I was out of work for 3 weeks, after the heart cath it was determined that I wasn't "as bad as they thought".. So money and time was wasted. All I want to do is live a normal life... I am a recent college grad and just started an internship for a company that I really love and doing what I love and went to college for. I am very afraid that I will be putting my life on hold again after today... Or this could be my anxiety talking.