Allow me to reintroduce myself...

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ILoVeNY25

Well-known member
Joined
Mar 23, 2002
Messages
368
Location
Flushing, Queens, NY
Hello new and former members, my name is Nicole aka The Little One because I was 18 when I started my journey on this site. I honestly do not think I could've gotten through my 1st sx without VR.com. I have a very extensive medical history so I'm going to start with that. At age 12 I had rheumatic fever but it was never diagnosed correctly so I went to the dentist without pre antibiotics and I developed bacterial endocarditis. I was hospitalized for 3 weeks when I was 13. Had a picc line and antibiotics at home. From then til age 19 when I had my surgery I went into class 4 heart failure which was the docs intentions since they wanted me to put off sx as long as possible knowing I would need several throughout my life. I'm born and raised in Queens, NYC and on Sept. 12, 2001, I had an angiogram that was canceled thinking they would need the hospital for 9/11 survivors and then rescheduled knowing that they're weren't going to be that many for the hospital I was going to. After the angiogram, I was told I was in complete heart failure and had about 6 months to live without surgical intervention. I ended up making it 7 mos to my surgery and had my aortic and mitral valve replaced and Tricuspid repaired. I got St. Jude's valves and was put on Coumadin. I was told when I was 13 that I would never have my own children.
Ok, so fast forward about 13 years, I was 32 and married when docs said they think I could have a successful pregnancy if I go off coumadin and give myself Lovenox injections everyday. So I did, in May 2014 I started the process along with a team of doctors, including 2 cardiologists at different hospitals, high risk OB/GYNs, Infectious disease specialist and anesthesiologists. I went into this prepared, I was on Lovenox for almost a year before I conceived in Feb. 2015, my pregnancy was normal, I saw the OB every week and when I was 4 1/2 months pregnant I had a heart attack. I was brought to the hospital where they told me I was the patient and my baby wasn't viable so they focused all their attention on me. Turns out after a TEE done without anesthesia for the safety of the baby, I had blood clots all along my valves and needed immediate surgery. The wouldn't let me eat because we still weren't sure what I was going to do. 2 days later my appendix burst, so they can't do the heart surgery and allow all that bacteria in your stomach to get into your heart. So, it was put on antibiotics and still was not allowed to eat for 12 days while now being just about 5 months pregnant. I was told that I should probably terminate the baby because certainly both of us were not going to make it or we would both die. So my husband and I made the most heart breaking decision to "terminate". So, it was decided I would have my appendix surgery and they would terminate my child. My son was due on Christmas Day and here I was waiting to have heart surgery as well. Again, because my belly was still full of bacteria and I was septic they wanted to hold off on my heart. So, I was sent home to bury my son and had a picc line for 4 weeks with antibiotics. While on my way to the OB for a follow up visit, I noticed I was having eye problems, i was missing part of my vision so i was sent straight away to the hospital where i began to have a very serious stroke while in the ER, I lost vision in my left eye which I have a permanent blind spot and had lost my speech and needed to relearn how to speak, I also had some weakness in the right side of my body. I was brought in for a Thrombectomy even though I begged the surgeon to change my valves once he was in there, he decided to just clean up the blood clots on my valves. This was now Aug 2015. I spent Sept and Oct recovering at home and on Nov. 10th, it happened again. I was having another stroke, not as severe as the last one but slurred speech and facial distortions. My smile would never be the same. I stayed in the hospital for 4 weeks until Dec. 4th, I had my 3rd OHS where I chose a pig and cow valve hoping that even if I couldn't carry a pregnancy that it would be easier to harvest my eggs without being on Coumadin and with all the strokes and TIA's I had I didn't want to be back on Coumadin. I was told my brain was "littered with strokes". There were too many for them to count. A few days after that sx, I developed right sided stomach pain and was like it can't be my appendix because I just had that taken out in July. Well, it turns out it was appendicitis because the doctor left behind a third of my appendix. So, more picc line antibiotics and was sent home a week before Christmas and a week before my son should've been born. Because I had new valves they wanted to wait again on the appendix and not infect my new valves by opening up my stomach. So, sadly I went home, it was a lot harder to recover after the 3rd OHS then the 2nd. Unfortunately my marriage started to deteriorate after spending more than 4 months of a 6 month period in the hospital and my husband and I separated 3 weeks after surgery. I came back to live with my parents and in March I had my 2nd appendix surgery, got sick while in the hospital, running fevers so what should have been a 3-4 day event turned into almost 2 weeks. The cardiologist wanted me to stay on Coumadin for a year before I started Aspirin therapy.
My husband and I tried to reconcile so I went back home and in Jan. 2018 a doctor prescribed me Celebrex for pain and it caused another stroke, lost a lot of right sided strength and I was diagnosed with a brain disease called Cavernous Angiomas. They cover my brain and they are tiny blood vessels that are almost like mini tumors. They're too close to my speech and facial functions that docs do not want to operate as of yet. Again my marriage crumbled and we're now officially separated and living 1500 miles apart. I'm on disability and for the last 4 years have experienced extreme depression, anxiety and PTSD. I apologize for the lengthy introduction but that's my story in a huge nutshell. My life consists of doc appts...
Cardiologists, Neurologists and Neurosurgeons.
I haven't celebrated Christmas since I lost my son and all i have is an angel named Jonathan James. And my life is now a waiting game with 2 ticking time bombs, my heart and my brain. I haven't shared my story because it's not a positive one and I don't want to take away from the positivity that this site offers. You can have heart surgery and live a normal life afterwards.
Again, I'm so sorry about the length of this post and wish everyone there in the waiting room Godspeed.

Nicole, 36
OHS x 3 Currently rocking a pig and cow valve
Cavernous Angiomas in brain
 

pellicle

Professional Dingbat
Joined
Nov 4, 2012
Messages
7,152
Location
Queensland, OzTrayLeeYa
Hi

very brave to document your story. You've been through a lot and I'm sure its helped you grow into a stronger and better person (at least that's what my trip has done for me in some ways).

I'm really sorry to hear about your marriage, I can say that no matter what life throws at you being separated from the one you love (*assuming you still love them) is hard.

There's lots of good people in here so if you have any questions then don't hesitate to ask.

Best Wishes
 

Catie

Well-known member
Joined
Jun 17, 2010
Messages
276
Location
Texas, USA
Nicole, I can hardly begin to imagine all you have endured physically and emotionally. I'm glad you're here, and I appreciate your explaining some of your extraordinarily difficult journey with us. I'm so sorry for the many losses.
 

Protimenow

Well-known member
Joined
Aug 10, 2010
Messages
3,584
Location
California
Your history has left me wordless (that's speechless, but in text terms). What a list of challenges.

I hope you heal quickly and can safely get the procedures that you need.

I'm curious - did this cascade of events happen because you had undiagnosed Rheumatic Fever, or were other things going on?
 

sylviayasgur

VR.org Supporter
VR.org Supporter
Joined
Sep 1, 2001
Messages
2,293
Location
Westchester, NY
omg, Nicole, i remember you from way back when...... i'm so heartbroken to hear all you've had to endure in your young life. Still, I'm so happy to see you here. Not many of us from way back then ....
please keep coming and keep in touch. You are amazing. Such strength, endurance. sending hugs, sylvia
 

ILoVeNY25

Well-known member
Joined
Mar 23, 2002
Messages
368
Location
Flushing, Queens, NY
I believe all of this started with the rheumatic fever, I don't know whether I was born with the brain condition or not. It is hereditary and my grandmother had many "aneurysms" in the early 90's and had brain surgery. But the heart was definitely rheumatic, I can remember my mother bringing me to the doc several times a week. They first diagnosed with Strep type B and then Strep type A or the other way around. I had all the classic symptoms, I was even diagnosed with arthritis in my hands at age 12 and had sprained my ankle. It was hard to believe that I lived in NYC and was a patient of this, that is usually seen in 3rd world countries without antibiotics. I wasn't able to have an MRI of my brain until I was 32 so the brain condition, I could have been born with or developed over time. There's no way to know. I always say if I didn't have bad luck, I'd have no luck at all.
 

ILoVeNY25

Well-known member
Joined
Mar 23, 2002
Messages
368
Location
Flushing, Queens, NY
Wow Sylvia, I remember you. Your husband was the patient and you're from the NY area as well, right? How is your husband doing? I feel like he had surgery not long after me and needed or had a repair?! It's nice to see "older" members who were on the site almost 20 years ago. I hope all is well with you guys. Thanks for the love!
 

Protimenow

Well-known member
Joined
Aug 10, 2010
Messages
3,584
Location
California
Sylvia - it does seem as if you were 'Born under a Bad Sign' (your quote is from that song).

I was diagnosed with Rheumatic Fever when I was an undergrad at UCLA. I think they even did a blood test to confirm it - I took penicillin daily for a year (I missed the chance of telling potential girlfriends that I was sterile -- even if this only meant free of some infections). Aside from a week of intense weakness - stuck in bed, barely able to get up to go to the bathroom, and similar negative symptoms, I got through the initial weakness.

In my case, they initially diagnosed mononucleosis, then, after testing, switched the diagnosis to Rheumatic Fever. But they caught it and treated it before it did significant damage to my heart. My bi-leaflet valve finally weakened me enough that, at 41, I had my AVR.

I'm extremely disappointed (but nowhere nearly as much as you are) that your doctors didn't catch this and diagnose it before it did any damage to your heart.

I hope that your path is smooth and uneventful and that everything for you gets much better.
 

Superbob

Steely Resolve!
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Joined
Apr 21, 2005
Messages
8,353
Location
Coastal Carolina
You are amazing, Nicole. What a fighter! Get knocked on the canvas and get right back up. Thought I had overcome a lot with two OHS in my senior years, but the challenges you have battled far surpass mine. All best to you -- keep battling and you will win. God bless.
 

OldManEmu

Well-known member
VR.org Supporter
Joined
Jul 18, 2005
Messages
959
Location
Melbourne, Australia
Nicole I remember you from your previous active time at VR. You certainly have experienced run of bad luck over the years and it appears to have been compounded by some less than optimal medical treatment. I hope sharing your story has helped it can be hard when very few people have anyone they can converse with that has any understanding of these type of issues, even more so as you are young. Stay strong and focus on the now and try not to dwell on what may or may not happen in the future.
 

Seaton

Well-known member
Joined
May 13, 2015
Messages
379
Location
London, UK
Thank you so much for sharing your story, Nicole. Such an incredibly tough experience you’ve had to endure over the years. Really sorry to hear of all those extraordinary challenges. But it’s heartwarming to feel your presence here. I’m hoping things stabilise and start improving for you soon.

Sincerely wishing you all the best as the New Year days progress.
 

Homeskillet

Well-known member
Joined
Mar 30, 2017
Messages
164
Location
OR
Nicole—I have only been on here for a few years now, but, as you pointed out, this site has been absolutely unbelievable for support. It was here that I initially saw the ad for the On-X mechanical valve, that I now have in my chest. On & on I could go, but, I just wanted to point out how many people on here you have helped by sharing your story—including myself.

About a year ago I was sitting in a Drs. waiting room feeling sorry & angry due to all of my heart probs. at such a young age. (I had a tissue mitral valve put in to replace my failed native valve in Oct. 2015 at age 48 [as an avid weightlifter & athlete I was the picture of health at that time, so I thought], which was supposed to last for 12-15 years. It lasted one year & I had to do another OHS within 1.5 yr. I honestly wasn’t even completely recovered from my first OHS.)

While seething over all of this I happened to notice a lady almost completely bowed over attempting to merely walk (this was obviously her full-time posture) & having trouble doing so. I couldn’t quit following her w. my eyes—feeling ashamed that I was having a pity-party. As I continued to watch her walk out the clinic a roving stick caught my eye coming down some stairs, going side to side—just before the blind man who was slowly attempting to navigate the steps appeared & walked out of the door right behind the bowed-over lady who could barely see where she was going. The lesson for me was obvious: Pick your head up! At least you can see & walk! I pastor a church & used this analogy the next service to communicate the same encouraging sentiment to the people I pastor—namely, things could be wayyyy worse!

As I read your post I felt the same way as I did that day in the Drs. office & I just shook my head feeling sooo touched by your story. My ejection fraction is dropping once again, which seems to reflect that my heart is failing. I can feel that I’m not getting the oxygen that my body needs & the dark circles under my eyes are telling me the same thing. It would be very easy to fall right back into my funk—but reading your story has been very helpful for me personally, as well as numerous others on here. Truly, the old adage is relevant: “Every day is a gift from God!”

One day at a time—&, honestly, sometimes it’s one minute at a time! I hope you get better & find the peace you deserve. God bless.
 

johnnycake23

Partners
Joined
Nov 19, 2003
Messages
153
Location
Chicago
You are a true profile in courage. Thank you for sharing your story. Please continue fighting and keep the faith.
 

ShezaGirlie

VR.org Donator
VR.org Supporter
Joined
Jun 9, 2001
Messages
1,858
Location
Texas Hill Country
Oh Nicole, I remember you from about 20 years ago. You are a true fighter, so keep up your good work as difficult and draining as it can be. I’m so sorry to hear of all your trials and tribulations at your very young age. You are a lovely, brave girl and just wish I could give you a big hug..💖 Janie
 

ottagal

VR.org Supporter
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Joined
Aug 8, 2008
Messages
2,503
Location
Can.
Thank you for sharing your story Nicole. I echo everyone else's words: brave, beautiful, courageous, resilient. I can't imagine how it is to be in your shoes, but please know we are here for you and appreciate you sharing your story. You are an inspiration and are making a difference for others. I am so very sorry to hear about your marriage. Wishing you continued strength, peace and courage moving forward. I hope you are surrounded by a few good people. Hugs and blessings to you.
 

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