The Great, The Ugly and The Overwhelming in between . . . post 1 of 3

 Home sweet home!! :)

I was released from the hospital late Wednesday 5-12 and got home around 8:15pm. After 2 weeks, I was so ready to be home, in my own, bed, smells, comfort and familiarity. It felt so good to walk through the front door, having the grandkiddos screaming, "Grandee!!!!" fighting for my hugs . . . I so missed the little boogers. :)

To say this hospitalization was different from any other admit, would be an understatement. It started with me being very sick and being told you "will stay in the entire 2 weeks until the IV course is finished." I settled in and adjusted my thinking to that fact from the get go. I usually stay in about a week or so until I turn the corner, and then come home to finish my IVs. But with all the circumstances leading to this admit, Dr. R knew I needed the bed rest this time. I didn't argue or ask to go home early, I knew it too. Little did I know what this admit had in store for me. It encompasses 3 story lines, so I will post my stories in 3 separate posts.

On Friday April 30th, Dr. R felt it was a good time to address the lung transplant issue again as he had in clinic weeks earlier. With the continuing progression in my left lung causing my infections, he is worried that it will in turn start affecting my right lung. If that happens, my only reserve to breathe would be compromised, with no other options, transplant or die. He wants me to start the process, having the physical evaluation testing done while I'm in house to make it easier for everyone, especially me. Ok fine, let's do it.

Also, I came into this hospitalization with a new diagnosis of Pulmonary Hypertension. (PH) The echocardiagram ultrasound done the week before indicated problems, but I would need to have a right heart catheterization to confirm the PH diagnosis by measuring the artery pressure in my lungs. The Transplant evaluation also requires this test to be done. Dr. R thought it best to kill 2 birds with one stone, and move forward. The cath was scheduled for Friday the 7th @ 8am. The plan was to have the cath, determine the extent of the PH, and them meet with the PH Dr. who is also a pulmonologist on the transplant team. How convenient, one stop shopping. :) And, oh goody, a whole week to stress about the right heart cath test I've heard so many CFers talk about.

The cath procedure itself actually wasn't as bad as I had thought thanks to Versed. The stressful part was lying on the table, watching the staff set everything up in the OR, me naked from the waist down as several people buzzed around me. Uh yeah, check your modesty at the door, please. The Dr. walked in and asked how I was feeling. "Nervous," I said. "Not for long," he answered, "I need you to be fully awake to follow instructions yet comfortable, give her 1 Versed."

The nurse came over and pushed Versed into my port line. Hello, woozy head rush! Two minutes later, Dr. asked again how I felt. I said, "just a little woozy." I looked at the clock, it was 8:35. He told the nurse, "give her another." Shoot in my port, la la land, yet still hearing the music and conversations. I felt the sting and burning of the 4 or so lidocaine shots in my right groin, ouch. The Dr. said, you are going to feel pressure." Yeah, what ever, I don't care, just do it. Good drug, that Versed, I wasn't nervous anymore. :)

He jammed a guide line and tubing into my main groin vein and threaded it all the way up into my right heart followed by the contrast dye. I had an xray looking device hovering over my chest taking pictures on 3 screens beside me. The Dr. maneuvered, recited numbers to the nurse, had the tech take pictures from different angles, then told me to hold my breath, push down, like having a baby or bowel movement. They put O2 on me, and did the whole drill again. I heard the tech ask if it was time to go to the second level, and the Dr. said, "nope, I got it, we're done." (I gleaned from the OR convos that there were 3 levels to measure the artery pressures) The Dr. Snapped his gloves off, leaned over my face, and said, "everything looked great."

Really?, as I thought in my foggy brain trying to process what he had just said to me. Was I dreaming this or was this for real?? I laid there while the techs cleaned me up and put a nice, heated blanket on me. Ahhhhh, felt great, I was done and warm. I glanced up at the clock, 9am on the dot . . . that was quick!! As the techs wheeled me towards the door, the Dr. said again, "your pressures are in normal range and looked great for your age and considering you have CF." I didn't dream it, I'm more awake now, and I HEARD it, woo hoo, no PH!!!!!!! As we exited the room, Terry was at the door waiting for me to follow me to the recovery room. Two hours of laying flat on my back, which is really hard for me to do. My lungs got really junky and I coughed up crap the whole time. Finally, they wheeled me back to my room.

My hospital pulmonologists were waiting for me with smiles on their faces, and reiterated again, normal pressures and no PH!!!! YES!!!!! But, now you need to lay flat for 4 hours, no exceptions. Ugh, here I was thinking the 2 hours were hell, now they tell me 4 hours. Dr. R came into my room shortly after, and he said, "nope, I want you to lay flat for 6 hours." He said, "we really don't want you to get a blood clot in your lung after an invasive procedure." Hrrrrrrummmmfff. I couldn't wait to get out of the bed, coughing like crazy and feeling like I was laying in a puddle of OR goo and blood.

3pm rolled around and Terry helped me to my feet. I was unsteady and a little sore but determined to clean up and get dressed into my comfy garb. I felt a thousand times better, crawled back into bed and finally got to eat my lunch. Terry went home once he realized I was fine. I stayed in bed the rest of the day except to go to the bathroom, but overall felt OK. I was thrilled beyond belief that the echocardiagram was wrong and that I didn't have PH. I kept thinking that over and over, thanking God for taking that horrible problem away. Apparently the echocardiagram, is not a fool proof test, but rather an indication only that the cath needs to be done. I wish someone had told me that before I had already stressed so much about thinking I had PH. Oh well, it's all ancient history now. :)

I slept good for the first time that night. Relief that PH was not, the worst test was done and I could concentrate on getting better. Thank you God.

This was my GREAT news, which I wanted to write about first. I'll back up in my next post to Saturday May 1, to the horrible news, the shitty reality that is CF. It deserves a post by itself.

To be continued, in a couple days . . .