Yeah, for the last few weeks Michael has experienced some pretty bad shortness of breath. He was having to sleep sitting up, because he had such a hard time breathing while lying down. I had been encouraging him to see a doctor but he hates seeing doctors, apparently more than he hates not being able to breathe.
Finally, on Monday, he agreed to let me make an appointment for him. While he was at work, I called his doctor and tried to make appointment. But when the nurse found out his symptoms, she thought he should be seen immediately and told me to tell him to go to urgent care ASAP.
So he went after work on Monday. Urgent care checked his oxygen levels, which were surprisingly normal. They shrugged and wrote an order for him to get tests on Tuesday.
Tuesday he called in sick to work (between having to gasp for breath and having to sleep sitting up, he was absolutely exhausted), slept all day, then when he woke up in the afternoon we went to the hospital to get the tests done. He got a chest X-ray, and they drew blood, then sent us home and said they’d call with the results.
Wednesday, while he was at work, he got a message on his cell phone from the hospital saying to please give them a call about his test results. He told me about the message that evening. Thursday, when I woke up in the morning, Michael had gone to work already.
I called his doctor’s office to ask about the test results for him, and they told me they thought he had a pulmonary embolism which might decide to kill him dead at any moment. He needed to be in the ER, like, yesterday. Literally yesterday, since that was when they’d figured this out, and I do wish they’d said so in their message to him or at least said something about it being an emergency.
I tried to call Michael and got no answer. I wasn’t sure how to reach him in that case. He teaches at a residential treatment center for at-risk youth and you can’t exactly just waltz right into the building; it’s locked up pretty tight. I was sitting there trying to figure out how to go about this when Michael called me back. I told him about how he might go to ER cause he might die at any moment, then hopped in my car and went there to meet him.
I was doing pretty good until I got to ER and couldn’t find his room. Then I went immediately full-on autistic meltdown and then the nurses freaked the heck out because they didn’t know who I was or what I was doing and I was being too autistic to tell them. But then Michael heard me fussing and so we found each other. A coworker had driven him to the hospital.
Cue tests and endless waiting and terrible hospital wifi and Michael’s parents (who arrived shortly after I did) being annoying. His father asked me if I would like a blanket. I said no. His father gave me a blanket, because of course he did, and then kept trying to adjust it for me, without saying a word to me as he did it. His mother said she thought she’d left the stove on, and she and his dad sat around idly speculating about whether their house had caught fire. (Spoiler alert: it had not.)
Eventually the hospital decided Michael didn’t have a pulmonary embolism after all, and instead he had congestive heart failure and they could cure fix it. They have admitted him for the next day or two.
I went home for a few hours, then came back with some of Michael’s stuff. By then, word had gotten around, and some of our friends were visiting when I arrived. (Michael’s parents had left by then, thank god.) Then I went home again. I’ll visit him tomorrow.
Everyone was all worried about me and our friend Larissa kept saying I should have my dad come and stay over, but I’m fine. Trying to keep busy and take care of the animals and all that.
I’m just hoping that from now on maybe Michael will actually heed my advice and see a doctor sooner rather than later when one of his vital life functions inexplicably starts to fail.
You’re in my thoughts, Meaghan. I hope Michael gets well soon. Please keep us updated.
I don’t know what words to say to help you right now, I wish I did.
I guess the first thing that all of us would tell you is that your response and reaction of hearing the news are completely normal and you didn’t behave any differently than “non autistic” people would…for what that’s worth.
The second thing I think some of us might tell you is to get true verification that he does indeed have congestive heart failure. He’s really young for that IMO.
Was it a “diagnosis of exclusion”…meaning that they ruled out a bunch of things and what’s left on the list of probabilities is CHF? I’d request evidence supporting that diagnosis. He’s a young guy, and even if he lives a lifestyle that would be considered “unhealthy”…and we don’t know that he does…that’s really young to be diagnosed with CHF to the point that it landed him in the hospital.
Your research skills might be helpful here, in that you can take his actual records and see what illness they hint at outside of the CHF diagnosis.
If your searching leads you to the world of rare disorders, please let me know, I can help. Good luck Meaghan, and warm thoughts to your man as he is recovering. You can do this! Internet hugs (( )j
Men are absolutely terrified of doctors because they hate the thought of getting bad news about something they cannot control. My mother is the same way. I’ve had a few near misses with her also. He is lucky to have you. You’re an awesome human in every possible way. Prayers comin your way. Stay strong!!
CHF? What? I completely agree with missing mystery. Get a second opinion, or at least tell them you need to see the actual tests results that led them to that decision. What CAUSED the CHF? Does he have an infection? I’ll pray for you both.
As a guy, I am not afraid of doctors. I do hate needles and shots. However, I worked at a VA hospital for almost 20 some years. So I saw my fair share of needles. It does not bother me as much, but it is a concern. I hope they figure out was is going with Michael. I agree it might be related to CHF or pneumonia.
I’m so sorry you both had to go through this. What a scary situation. You did an amazing job handling it, and getting him medical care. I hope he gets better soon. I also have family members with congestive heart failure who lived more than 30 years post-diagnosis via making changes and getting good care, so don’t let either one of you doom spiral. Sending love.
It’s really good that you kept after him to go to the doctor! I hope everything goes well.
Thank god you were there to convince him to go to the hospital. Hope he gets better soon!
He has dropped 25lbs of fluid (no wonder he couldn’t breathe!) and is getting out today.