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Medical Update June 4th, 2021

For the past month or so I have had some signs that a PE (Pulmonary Embolism) may be occurring. Chest pains, sleeping a lot, throbbing vein pains, lightheadedness, etc. My husband had become more and more concerned that I was showing the same signs I did back in June of 2017 and June 2019, right before I had been admitted into the ER for blood clots in my lungs. Because of these incidents, I now have parts of my lungs that are dead due to infarction. So my lung capacity is lowered.

So I had messaged my OBGYN to discuss if it is possibly the birth control again. The last two times I had PE's, the dozens of doctors could only pinpoint the estrogen in the birth control pills as being the possible cause. I was (and still am) WAY too young to be getting these. Especially with no prior medical history or family history of such things. I'm on the Progestin shot which could also have bad side effects. I was hoping to be able to discuss with my PCP (Primary Care Physician) what would be happening but she insisted I talk to my OBGYN. So I sent a message in and yesterday they called at 11am to say they had an opening at 11:50 due to a cancellation. My anxiety kicked up badly but my husband insisted we should get it checked since he had been doing medical research while I take my 2-6hour naps. Keep in mind he has had a medical background though he does not actively practice it now. So he does understand what he is reading or knows which experts to refer to who know more.

We headed in and got yelled at for not wearing a mask. 1) my main concern was chest pains and possible lung blood clots 2) I had already been getting less oxygen and feeling winded just walking casually 3) Already had blood clots in my lungs twice and infarctions meaning I get less oxygen in general 4) I have many triggers from being suffocated prior and 5) Autism drives me crazy being able to feel my breath on my face. I actually have multiple medical conditions that make it extremely difficult and at times impossible to wear a mask. I really do try to wear one when it involves me working with food or in an extreme medical situation where everything needs to stay sterile. Though I have never been in the latter situation. Even then I have to take FREQUENT breaks to be able to breathe or I start blacking out or getting dizzy enough to pass out. When did just wanting to breathe cause such a ruckus? When did it make me the villain?

They were basically going to kick me out over this. Then they looked at my medical documentation to realize that I DO fit into that high-risk group. To me, I see that as if I HAD COVID which people are so worried about...I'd most likely be in the ER on a ventilator. Had a bit of a breakdown as the nurse went to talk to their manager again. I hyperventilated with the fear that it would all happen again: a Doctor not taking me seriously and me ending up in the ER a day or so later while in extreme pain and not being able to breathe. (This happened in 2019 when the medical professional just brushed me off as being 'depressed' and insisted that everything was fine.). I HATE having to suffer enough to go into the ER just to prove that I was telling the truth. I shouldn't have to. I'm not a hypochondriac if I have years of documentation from dozens of doctors, clinics, and hospitals helping me with this exact concern. Even worked with the top pulmonary department in the COUNTRY over this. Thanks, National Jewish Health!

What really sucked is that they are a part of St. Francis hospital...literally the FIRST hospital I went to with my first PE in 2017. They should have had all my documentation.

They managed to let me go back and we only waited a short amount of time before the doctor stepped in. And man was he condescending and went against his own practice. Such has him saying the Progestin wouldn't do such a thing but it is stated as it CAN be a possible (and severe) side effect ON THEIR DAMN WEBSITE! As you can tell I am extremely upset. Especially when what he said went against dozens of doctors and hospitals who have specifically told me this could still happen. My husband wanted to get my hormones checked since I was showing quite a few symptoms that it was affecting me badly tightly connected to Progestin shot specifically. We just needed to see and make sure that my hormones were in the right range or if my progestin was way too high. He seemed very hesitant and basically brushed us off. Luckily we still got the test done and left. I have not gotten the results back just yet.

He just kept saying that if I felt that it was that bad then to go to the ER and that they had the right equipment to see if there was a clot. I'm so confused as to why I was told by my PCP to talk to my OBGYN if he won't (or in some cases CAN'T) do anything? What a waste of everyone's time! But I still HAD to see him!?!

It did make it easier to enter the ER letting them know that the doctor told us to visit the ER. Man the number of times I hear from medical professionals stating "You're too young to be having blood clots" makes me laugh. They had gotten my profile mixed up with someone else who was 50...husband joked that if I was that age then it wouldn't be unexpected. The people in St.Francis ER were amazing: courteous, sincere, concerned, cheerful, etc. You may not have to believe me but still treat me like a human being until you have full proof I'm lying. I understand there are many people who are addicted to opioids who go in just to lie and hopefully get the drug. I am not that person. I even have some leftover pain medication from those years I need to dispose of properly.

But when did this, just wanting to make sure I didn't have another blood clot, turn into such a struggle? My husband and I were trying to be proactive in stopping a possible reoccurrence that actually could kill me if I took a nap with it (again). I even got an ER doctor's PERSONAL number to contact him for help if I think it may be happening again. He gave me his number in 2019 and I have used it once and he did respond encouraging me to go into the ER. My situation is not normal in that there are no clear signs to indicate why I am getting blood clots. Other than birth control which is the most likely. So I think he was concerned that because it wasn't so obvious, it could be easily overlooked with very severe results (including death if it hits the brain).

I'm actually done with being suicidal. For over a year now. I have a reason to live. I have a purpose. I have someone who keeps me from being utterly depressed and a family I absolutely love and want to live life with. I WANT TO LIVE.

Though it was a tough time, I'm glad my husband and I are in a better mindset and have gained the resilience to not let it stop us. We have encountered many terrible medical professionals and will share our stories on what happened. We have learned that you do not always have to take what a doctor says completely. You are allowed and should be expected to look for a second opinion. You are allowed to fight for your health and be heard about your concerns. You are allowed to share your good or bad experiences with different medical professionals. I hope to be able to help you take control of your health and be able to advocate for your own health.

I would NOT recommend Dr. Shelton at Associates for Women's Care. Yes, they are under St.Francis as they are held to the same religious standards (i.e. would not allow you to get your tubes tied but would have to refer you out). So far, less than half of the male doctors I have ever had have treated me with respect and listened to my concerns. I've also noticed that many of those from certain religious backgrounds or from certain cultures are more like to be ruder to me, just because I'm female (and the patient). I'll go into that scenario too later.

That's it for now! Hopefully, we will be able to figure out this difficult health issue soon! Praying that I don't go back into the ER again. Early July is the designated time of year that the PE seems to fall into. Let's stay positive though!


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