august cont'd

After we returned from Cleveland I was still not feeling well but at least my bowels were moving again. I did notice the second day after coming home I was having more trouble breathing and was pretty big. So Dewon and I spent the day lying around and trying find something that I could eat..chicken noodle soup won. They next day Dewon went back to work and I noticed a little while after I got up I was really having trouble taking a breathe in. So I called Tammy and asked her to take me to the ER. When we got there they rushed me back to the room and started attaching stickers, taking blood, and poking me. Not fun when you can not breathe. Shortly after Dewon showed up and the doctor came in. He said my kidney functions were still a little high and that it was showing that my iron was a little low. So they admitted me to Central Carolina Hospital and started running test on me. They did an arterial blood gas test and said my O2 level was 30% which is bad and that could also mean I had a blood clot in my lungs which made since to the doctors since I had just flew home a few days before. So the started heparin shots and ran a nuclear med test to see if there was a clot there. They also did an echo and a stomach ultrasound. The doctor came in late and  was in such a hurry to get home that she didn't even tell me all of my test results. When I asked she didn't know and then when I asked her to update Cleveland she acted like she didn't have time to do that. She also didn't  even know I was on a transplant list which told me she didn't even read my chart. This of course didn't make me happy and I kind of went off on her. You have to know you patient and read the case file to know what you are dealing with, especially in my case. So the next day we got a new doctor and she came in and explained what was going on. Well my iron was low so they gave me oral iron, my spleen is enlarged, I have kidney stone and there was no blood clot so the cause for the low 2 sat and my breathing difficulty was still unknown but there was not much they could really do about it. So you know what they means......back to Cleveland.

So this trip I was convinced they would keep me because of all the issues that were going on and I was for once ready to get this whole thing over with. The back and forth and being sick all the time is getting old and all I want is to be "normal". So the days before we flew out I updated my Will, did my care plan, Last Will and Testament and made arrangements for the house and dogs. I get so emotional every time I have to think about this and it is just something I didn't plan on doing or want to do. So thank goodness my friends took me out the night before we left and pampered me and took me to dinner where a bunch of the girls showed up. It sure did make me so thankful and a little emotional. I stop and think all the time how blessed I am to have so many friends who really care about me and are there without question to help me out and take care of me. They just make me smile and make all the bad days disappear with one night of laughs. I love you gals!!!
We flew out and went to my first appointment the 20th. Labs of course and then an ekg. I then went up stairs to see Doctor Hanna and he was just as confused on what was happening and why things had gotten so bad. He did his exam and then sent me to get a Cat Scan of my chest to see if there was any issues with my lungs. After that test we went to my genetics appointment where they went over more family history and did an exam. They still might think I have Noonan Syndrome so they have to do more tests and get more blood work to determine if it is even safe for me and Dewon to have a baby of our own. So a surrogate might be out depending on what the results are in a few months. After that I was exhausted so we went back to the room and I laid down. I don't even remember eating I just slept. The next morning I was suppose to have a lung test done but I woke up trying to catch my breathe and so Dewon canceled it and then called the doctor. They wanted me to go to the cath so we went over to the hospital and before I knew it I was on the table in the cath lab. Let me just tell you THEY SUCK! getting stuck in your neck is no fun and I have got so much scar tissue there now they really have to force it in and use their body weight to push it through, which just makes me want to get off the table and kick them  for hurting me. So after they took the pressures they said they were high and that Dr. Hanna wanted to admit me. So I waited on the table as they taped the wires sticking out of my neck down and put a stitch in it so it wouldn't move. Then to my surprise they brought Dewon in the cath lab and let him wait with me to go up to the ICU where he seen what my chest really looked like and we laughed at all the wires I have in my chest cavity. I know I am cool :) A little while later we went up to the ICU where everyone knows me now. They next few days were spent hanging out in bed getting blood tests done and doctors coming to check my pressures. They did give me some IV lasix because the cath did show I was retaining some fluid on my heart. After another day they were happy with my numbers and sent me down to the cardiac floor and took my cath out. I was only there for a day before they discharged me and sent me to the hotel. They doctors just said that I had become anemic and they thought the combination of low iron and the fluid was what they thought was causing my issues.

So we caught our Cleveland flight to Atlanta and shortly after we took off I started having trouble breathing and the next thing I knew I was waking up to lots of people around me and Dewon no where in sight. I just remember crying and asking for him. There was a PA on board and she told me I had passed out and that my blood pressure had dropped and I was having trouble breathing. So the flight attendant brought me oxygen and the PA and a nurse stayed with me. I finally seen Dewon and he was arguing with another flight attendant and then just sat down. I was trying to focus on my breathing but I was so overwhelmed and embarrassed that all this had happened. They kept asking me if I could make it to ATL or if they should do an emergency landing somewhere. I didn't know...Then a doctor came back and accessed me. I felt terrible, he had just got out of Cleveland Clinic himself and had open heart surgery. Meanwhile he was trying to take care of me. When we were about to land I heard Dewon and some old lady talking. I think she wanted him. She just kept saying how cool my "boyfriend" was. I guess they didn't notice my wedding band. It was funny though to hear him answer all her questions and listen to her giggle like a school girl. Guess I better watch my man :))
When we landed the EMS was there and they took me off the plane. We got through the back of the airport and into an ambulance. Dewon got to ride in the front while the EMT took care of me. He started an IV and ran a rhythm strip and administered some morphine. After that I was sleepy and don't remember the ride to the hospital. Once there the doctor came in and checked me out, ordered some labs and called Cleveland. Dr Mountis was back from maternity leave and asked the hospital to keep me over night to watch me. So we were admitted. Sometime after that I started having chest pain again so they gave me Demerol and put me on 2 liters of oxygen instead of 1. Well if you know me and pain medication I am a little loopy so Dewon says I was hysterically crying and wouldn't let the St. Jude rep check my ICD. And to top it off I was saying I was falling when I was clearly not, So hubs made me go to sleep. What a freaking adventure that was. The Cardiologist came in and said that he believed the hydralazine that Dr. Hanna had prescribed me was too much. So he cut it back to 25mg. It was just making my blood pressure drop and making me fall out.
So today we flew home and thank goodness no problems. I am home relaxing and trying to catch up on sleep. This last few weeks have been too much for me and if I can just get a break I would greatly appreciate it. Way too much excitement for me..... So this week I plan to relax, see a few friends and just try not to have any hospital visits.

As for follow ups I go back to Cleveland the 17th of September and I have to have blood work twice a week for 6 months.  Continue my low sodium diet and try to eat more foods with iron in them.