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I thought i was never going to be cured. My CtEPH jouney part 2

We sent all my medical records to UCSD and it was a huge surprise they told us I could also get a quote for a PTE. I really didn't want to get one even when it was possible, because I knew it is a very risky procedure, your chest gets opened like a hot dog, you basically get killed for several minutes in a hypothermic circulatory arrest.

So we ignored the quote and just postponed the decision until one day Olga Cesena from the international department of UCSD called us directly and explained everything to us. She said that in Mexico it wasn't possible to do the PTE, but in San Diego it was, that they are more capable than anyone in the world and the mortality rates were about 1% , impressive considering anywhere else in the world the lowest mortality rates are about 15%. She also said that a BPA was possible but for my specific case it wouldn´t really make big improvments, the PTE was the way to go.

To get the PTE wasn't an easy decision, I was really afraid of dying, but we asked doctors here in Mexico their opinion and said it is the best decision I could take. My family was right all the time. When you're making life changing decisions such as choosing procedures and hospitals it's important to have other people help you find alternatives and show you the best options. We were told by Dr Madani and Dr Kim said it was very good i haven had any BPA before it would have been more difficult to perform the PTE, also that BPAs are not for young patients. So far my parents made perfect choices.

During my PTE I was in hypothermic circulatory arrest for 77 minutes in total, several more than other patients. Now I laugh about people that pretentiously say they have been clinically dead for 3 minutes. Dr Madani expected it to be of an average complexity but to his surprise he faced a challenge with my case.

Following the surgery, he remarked that he rated the difficulty level as a 9 on a scale of 1 to 10, with 1 being the easiest and 10 being the most difficult PTE he had ever performed. Typically, patients are able to resume eating and walking the day after surgery, but in my case, it took me 5 days before I could walk again.

Now it has been two months since the surgery and I feel amazing. I feel so much energy all day , I even started to run. Yesterday I ran and walked a 5k in 50 min. I often say to my mother Dr Madani gave me superpowers. Certainly it feels like superpowers, so much I just signed up for the San Diego Marathon 2024. I know I have a long way before running 42 kilometers but it has been my goal since the intensive care unit.

I want to give my medal to the UCSD team and show them how they gave me back my burning desire to live. Not enough can't be said about how good Dr Kim, Dr Madani and their team are. I always tell people I got presidential quality open heart surgery, and sure it was, my scar is barely visible now and it never hurt bad at all.

So now my CTEPH journey is over and I feel responsible for making awareness of this disease so no one else has to live like me for 7 years ignoring there is a cure. I also feel part of the community of people with Pulmonary Hypertension due to other causes I know, just like the PTE there are potential cures being developed. I know maybe 20 years ago a surgery like this wouldn't have been possible but we have people like Dr Madani and Dr Kim who push the boundaries and make modern medicine miracles.

#cteph #pte #ucsd #PulmonaryEmbolism #pulmonaryhypertension #PAH #APS

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Redemption Arch

The Process works. I know, I know. Everyone says this and no one REALLY believes it, ya know?

Have we ever stopped to ask ourselves why we don't believe it? Is it because we don't want it to work? Or maybe we're afraid that it WILL work?

Whatever your reasoning is, I want to tell you, that the process works- maybe not all the time, but most of the time.

That's why we have science and doctors and medications and therapy and small groups.

Because it's been proven to work.

In 2019 I lost my ability to walk and it took a toll on my mental illness.

Every atom, every neuron, and every synapse is connected in our body. We are affected by everything around us. So when I lost my ability to walk, my mental health took a nose dive.

I was hanging off the edge of a cliff.

I entered treatment and, man, I prayed harder than I've ever prayed before because you really don't know what you have until it's gone.

I worked that program, and I took every medication shoved down my throat and prayed that it worked. I went to physical therapy twice a week.

It took nearly 6 months... I slowly regained my ability to walk.

The process works and to be honest, I didn't think it would. I didn't think it would work at first because I was so stuck in my way of thinking that I was being punished, that I was stuck in that way.

But consistent medication, therapy, PT, and check-ups are the key to keeping your health in balance. Eventually it becomes like breathing- second nature.

The process SUCKS because it requires change. It requires work. But it produces fruit. I regained my ability to walk, I have so much more energy and I have the gift to be able to tell people that maybe, just maybe- this isn't the end and it DOES get better.

There is redemption. Trust the process.

*Pictured below is when I began losing my ability to walk on my 23rd birthday in 2019. I could only stand for short bursts in a boot.*

#trusttheprocess #Bipolar1Disorder #Lupus #AntiphospholipidSyndrome #APS #SLE

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I was just diagnosed with #epilepsy two days ago. I also have #Antiphospholipid Syndrome.

I have seen that quite a few people in my #APS support group have problems with #myoclonus, so I did a little checking; and found that it is not uncommon for people with APS to have the same #iscemic brain lesions and #white matter changes that I have.

Actually, people with APS haver a 10 times greater risk of having epilepsy than does the general population.

Anybody here have APS and Epilepsy?

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belated Christmas gift #Rare

a friend sent me the beautiful necklace, a belated christmas I love her and it and my eyes leaked a lot because I was so overwhelmed with gratitude feeling loved and that the about 100lbs I've lost not trying in past 9 months was worth it because the chain fit and the charm falls perfectly at my throat chakra huge symbolic meaning for me. color and heart also symbolic. I love my friends even though I've not met most of them.
#RareDiseases #TM #APS

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