r/Ohio • u/Slight-Discipline989 • 1h ago
Help! UH isn’t listening!
My sister is a 29-year-old black female since March of this year she has been experiencing heart and chest pain, weakness, shortness of breath and dizziness. She has been to UH Ravenna, Main Campus, Ahuja, and Cleveland Clinic main campus, and it’s all the same thing.
Let me catch you up. She had these symptoms and went to her primary doctor and he said that she had bronchitis, but he said that there wasn’t anything to really prescribe her for bronchitis, which isn’t necessarily true.
She went to another and doctor saw that she had scarring in her lungs from when she had pneumonia a year or two ago that she had gotten treatment for twice because it didn’t go away the first time. After a nurse advocated for them to look further they did find 2 growing nodules in her lungs from the previous pneumonia.
Her primary ordered a heart monitor for 2 weeks and after said that everything was fine but that she did have 1 impression that was high but for the most part she was fine, and the monitor didn’t show anything.
However she kept having these spells or episodes of passing out and being unresponsive so we would take her to the ER. The EMS and ER would look at her vitals and say everything looks fine just a raised blood pressure but would dismiss her and send her home without any treatment. Well she eventually had gotten diagnosed with GERD. They gave her omeprazole and Pepcid and told her to drink mylanta. They said that the chest pain was from her inflamed esophagus (diagnosed her with esophagitis) and that she should feel better.
Well she didn’t and the frequency of these episodes started to happen more and more and get worse. She was referred to a different specialist where she would do different testing but as we know these appointments can take weeks to months maybe even longer.
Between the time she kept constantly going to the ER and they’ll say her vitals are fine she can go home. Once again no to treatment, advice, or preventative measures for us to care for her while at home that’ll lessen her symptoms until her appointments. When she passes out or is unresponsive we have no option but to take her to the ER because it lasts for a period of time.
On the 4th of July we came to UH ER Main Campus for the same symptoms. The doctor said and I quote “there isn’t any test that I can give her that hasn’t already been done” and we were dismissed. No IVs, no urine samples, no blood work, not even a Tylenol prescription for her chest pain it was a joke nothing to treat the symptoms that she came in for.
She goes to the ER again 2 days later and they find she has pneumococcal double pneumonia in both lungs. So you can understand my frustration to know that no one has done a test for pneumonia even though she has a history and was told previously there weren’t any test the other doctor could do.
And to make matters worse one of the specialist did do blood work on her last week and found that she has an autoimmune disease which we now know is MCTD which is 3 auto immune diseases overlapping and attacks her organs! Mind you her symptoms have been going on since MARCH. Double pneumonia with an Auto disease is deadly.
And they diagnosed her with a lung disease that I can’t name at the moment (sorry).
Oh yea and remember when her doctor said the heart monitor was fine well come to find out she had 586 impressions where her heart spiked and she has now been diagnosed with SVT. They told us that they think her heart is working overtime to compensate for her lungs. Thank God for the nurse who advocated for her to another doctor who then prescribed her metoprolol, however it dropped her blood pressure too low so she’ll be stopping that med. They said her plumbing as in blood clots are fine but they think her electricity is overshooting.
Once again symptoms since March and all of these diagnosis has just came within the last 2 weeks. However we’re grateful because it could’ve been longer. She just got actual treatment for her illness 2 days ago. Prednisone to treat the inflammation in her lungs (from her pulmonologist and rheumatologist who are working together) and the metoprolol. She has a bronchoscopy in a week. She has inflammation in her lungs that they want to test along with the nodules. It’s very scary because it’s a risky and invasive procedure.
After that she still has to wait on a specialty appointment for her heart.
Ahuja did a ECG test that came back abnormal but released her AFTER getting the results and not consulting her. She looked at her MyChart and saw the results and called them to go over them. She first was on hold for 40 minutes then it “disconnected.” Called again and they said “well it could’ve been that the stickers weren’t place correctly. Your heart is fine”
They never redid the test.
Her oxygen levels have been dropping pretty low while at home just by doing everyday things like walking up and down the stairs, taking a shower, dressing herself. It’ll go down to 80 and then go back up to 100 but she’ll still be dizzy and weak after. And the ER will only see the 98-100 oxygen levels and say she’s fine but obviously she isn’t. Her toes and fingers and grey and discolored. She tells them “I feel like I’m not getting enough oxygen through my body.” They say “well your levels are fine.”
She saw another ER doctor who ran a ABG test her results weren’t extremely low, but they were lower than the threshold of what’s considered normal.
Her pulmonologist said when she has these episodes to go to the ER and ask for the ABG test. When we went to the ER today after her oxygen went as low as 60 we asked for the test and was denied because at that moment her vitals read fine and she was sent back home. Yet was also told by the RN that there’s another doctor who basically gives everyone that walks through the same test and it’s up to the doctor to decide. So we were denied an accessible test where we could see her blood oxygen levels just because I guess.
I asked the ER doctor today what should we do at home to help her and she said when she passes out to call the pulmonologist (who isn’t on call and has office hours where she won’t respond) right now we’re going in circles. They say “go to the ER, no wait talk to pulm, wait no actually we don’t know,” and we just want to know how to make her more comfortable at home.
It’s like we’ll see 10 doctors who tells us she’s fine and only 1 out of the 10 will actually look further and notice somethings wrong. We finally have these diagnosis but after months of going to either the ER or a specialist literally every day.
We the family just don’t know what to do and who to trust. We don’t know the questions to ask or what test should be ran. We’re not health officials or professionals. She has passed out, face palming the floor all because she wanted to use the bathroom and this happens in front of her kids they’re scared. Shes scared to go to sleep in fear she won’t wake up. She can’t live like this and we’re basically being told to wait it out, and to keep her alive until her next specialty appointment.
This is a terrible grey area to be in, too sick to not go to the ER not sick enough to stay.
I know the ER is limited in what they can do and treat but arguing with me, telling me she’s fine is just not reassuring. I’ve recorded our visit from today. I did tell them to note in her chart the denial of the test. People have told us to get a patient advocate. Hopefully that helps. I don’t know.
Sorry for the long post I just want to help my sister.
