Guess luck isn't with me anymore
I thought that things were going to go smoothly with this operation, cause I didn't have any issues with having to stay on the vent. Boy was I WRONG, things have gone from bad to terrible in just a few hours.
I think I mentioned that I wasn't doing to well and was starting to have more pain at the incision site. This morning I was hurting so bad, I had to call my surgeon and let him know about
how I was doing. The nurse on the same day surgery ward, had discharged me w/o giving me my discharge instructions. I've been kinda flying by the seat of my pants ever since last Wednesday night.
Well, my surgeons resident first called and discussed all my symptoms with her and she felt that we would wait and see if I worsened over the next 24-36 hours. The incision was looking very very red and was hurting at a 8/10 all the time. It has been really hot to the touch and spotting some blood around the stitches. I agreed and hung up with her, about
15 minutes later my surgeons admin specialist called me and said that he wanted me to come into the clinic and see them after I finished up my appt with my cardiologist.
I get down to the medical center and barely make seeing my cardiologist. He fit me in, as he is on duty taking care of the inpatients at this time. I almost left cause my surgeon wanted to see me at 2:30. Asked if I could come back and he said you wait and see me now, or it will be another month before I can see you again.
So, I waited for him, took me back to his office at 2:10. He listened to my heart and lungs, he looked over my echo and talked with my about
what's been going on. He basically said I'm still having issues with chronic pericarditis and that even attempting to taper my steroids is making this so much harder. He also mentioned that I've got a problem not when my heart constricts but when it releases.
He's not sure what to do now. There is one option but as we all know I'm not a good surgery candidate but he's going to contact some fellow colleagues of his at Mayo Clinic, and Johns Hopkins. One option would be to scrape off my pericardium from my heart. BIG TIME SCARY STUFF HERE.
Until he speaks with his friends, and does some research I'm to take it easy. He asked how I sleep in bed, I told him up on four pillows or in my recliner. He offered to order a hospital bed for me, I declined at this moment, I'm not sure what I want to do yet. As I mentioned in my other post we've got a new bed coming, I guess I could try to get a frame that lifts the head of the bed, but they cost like $3400.00 He said I'm certain I can't get you a double hospital bed so your husband can sleep with you, but I can get a you a single one. I'm now in a holding pattern with my heart issues, I sure hate this stupid disease. It's affecting so many of my organs, I have no QOL and tonight I'm really wishing I didn't have to go on.
Off I race to my surgeons office, get over there about
2:40. The resident and medical student come into the room and say sorry for the confusion. Ask me to get undressed and let them take a look at the incision. I do and they come back into the room and take a peak. She sends the medical student out of the room to get the team of residents that worked with my surgeon last week. They all come in and look at the incision, then the senior resident goes to find the chief fellow. By this time I find out the staff surgeon isn't there and he won't be able to see me. That's why the chief fellow would be coming to look at me.
Once he gets into the room and looks at the incision, he says to me "well we're not surprised to see this at all", what I say. He told me that my incision has
opened up I only had maybe 2 stitches left together and some surgical glue over that. Basically, all my stitches have blown out of the incision and it's wide
open with out anything holding the sides of the skin together anymore. He said with me being on steroids as long as I have and being so immune suppressed they weren't surprised at all. I did this with my colon surgery 21 days post op too, I never gave it a thought.
They never restitch the incision at this point. I'm to keep it clean and dry, keep it dressed and just wait for it to heal from the inside out. Told me it will take longer in me since I have no immune system. I'm to watch for any signs of infection, I'm to rest, rest, and rest some more. Eat plenty of good protein and stay well hydrated. I will follow up with them on Monday the 7th unless I get worse, especially start running a fever. I never even consider this, they didn't mention it to me and I didn't think one thing about
it. I've got some blood oozing from the incision but it's not
open to deep, so that's a good thing.
It's looking like the government will shut down tonight, so I'm guessing my spouse will be home early tomorrow, so he can help change dressings and prepare meals for me. It just seems like I can never ever get a stinking break, no matter how hard I try. It took over 8 weeks for my incision from my colon surgery to heal , but that
opening was a lot worse, I ended up inpatient for over 1 week because it
opened up so deeply.
I'm going to ask for some prayers please and positive healing energy sent my way. I'm in pain and I've been told that I may need 3 times the amount I normally take for BT pain medications. They contacted my Primary care doctor to let her know that I may run out early and need more. She's the only Doctor that prescribe controlled substances for me outpatient. I'll keep you all updated as my long days pass by. I thank you all in advance for your prayers and positive energy.
DX- RA, Lupus, Fibro, LGL Leukemia, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.