I am new here, so 'hello' first of all and I really hope I can find some help here.
Nearly five months ago, I woke up in the morning feeling 'off'. I assumed I was just getting sick...again....because before that morning, I was suffering from all sorts of health issues. I felt like I was constantly sick (with cold/flu like symptoms), I was dizzy at times, vomited randomly and had some heart burn. I went to the doctor a few times, he ran tests and nothing remarkable came back in the results.
So shortly after I got up, I had to go back to sleep. I felt really foggy, dizzy and weak. I slept for most of the day and evening. At around 8pm, I got up to use the washroom. And nearly passed out just trying to pee. When I stood up, I collapsed and things just got extremely scary from there. I could not get up from the floor, in fact I couldn't even speak, my hearing and sight went, my breathing was out of my control and extremely shallow. I was freezing cold and then I vomited about three units of blood (frank). I had the terrible feeling I wasn't going to survive. My husband wasn't home, I was alone...and there was no way I could have reached the phone to call 911.
Thankfully my husband came home shortly after with our kids, he found me when he opened the washroom door and found me. He called 911.
When I got to the ER my hemoglobin was 72, I was given four units of blood. Which brought my hemoglobin up to 86. I was scoped two days later and they found a peptic duodenal ulcer. Which the GI specialist claimed was healing. I was sent home with iron supplements and proton pump blockers.
Since then, my health has been a complete MESS. My hemoglobin has not come up over 104, my iron count is 8, my palettes are climbing with every blood test (weekly), so is my RBC, carbon dioxide and other things I can't remember right now. I've lost 70lbs since the bleed.
I struggle to do anything, walking around our apartment leaves me winded, my heart races and I usually have to brace myself or take a break, due to dizziness or fatigue. My mood is awful. My ulcer still hurts ALOT despite the proton pump blockers (which have been changed a few times to see if a change could help). I can sit down for five minutes or five hours, and every time when I stand....I'm dizzy. Sometimes more than others, ranging from feeling like I might faint to having to brace myself for a minute before continuing on.
At times my sight goes blurry, for no reason and it doesn't only happen when I am dizzy. My ears/hearing is sometimes muffled. Like I'm wearing earplugs. My arms and my legs, are covered in bruises, which very few are from injuries. Most of them are from pressure, applied to that area. Like if I sit cross legged on the floor, my feet are badly bruised afterwards.
I have two young kids, and I can't play with them, I can't even lay on the couch just it be around them...because my sleep pattern is completely reversed.
I do not smoke, drink, or do drugs. I am not on any meds except a Rx sleep aid. I have always tried to avoid meds (even pain meds) if I could. And I was tested for h. Pylori, a breath test, blood and stool. All were negative.
I am beyond frustrated and while I love my family Dr and trust him. He doesn't seem to get how much and how negatively this is affecting myself and my entire family. He told me it should take about three months for my body to recover (my hemoglobin). Yet it's not, it has come up to 104. But then dropped back down to 99.
I have an appointment with him this Monday and I am terrified that, because my most recent level came up from 99 to 104. He is going to say, I am getting better. I know I am not.
I am hoping someone might have some advice or suggestions.....because I can't keep going on like this. I am missing my kids growing up. And I just cannot understand how feeling this way for so long, is remotely ok or getting better.
I am also curious if anyone has had a second bleed, with an ulcer that previously bled? I'm terrified of having another severe bleed with my hemoglobin being so low.
Thanks for reading this novel!