Hi! Hi! Hi!
I'm so excited to say that my bronchoscopy results came back showing NO REJECTION!!! That is such a big deal for me! Rejection can ultimately kill a transplant patient more that most other things. My rejection has been very mild but still month after month right in the beginning isn't a good thing.
Tracie (my coordinator) said they still want to do another bronch in a month just to make sure there's no rejection next month either. I'm for that. If there's no rejection then maybe we can go to every three month...we can pray!
Now on the the stomach wrap. I saw Dr. Perez - my stomach surgeon - because Dr. Zaas wanted me to have another stomach wrap. Mine came undone :-( Before I saw Dr. Perez I had a barium swallow test. Yes, it's as yucky as it sounds! Anytime you have to swallow barium it's nasty tasting...even if they flavor it! Those results showed quite a bit of reflux. Dr. Perez was sure my wrap came undone but he was hesitant to do another surgery until he checked to see if I did or did not have a "Nutcracker Esophagus". If I have one he said I shouldn't have another wrap because the nutcracker would 'unwrap' the wrap!
At Dr. Perez's request I had another test called a mammometry test. A probe is inserted down your throat (a real blast!!! - not!) and then you swallow small sips of water while some machine measures how your esophagus does. The test results said I do have a Nutcracker Esophagus. So Dr. Perez said NO WRAP!
Well, I saw Dr. Zaas this last Wednesday and he said he still wants the stomach wrap and he was going to email Dr. Perez right away. Hmmmm...
Yesterday, Friday, a nice girl called and said she needed to schedule an appointment for me on Monday with a Dr. Mark Onaitis. I then asked who he was and when I found out he was a thoracic surgeon I asked if she had the wrong person. No...I had an appoint on Monday and he was going to do a procedure. What???!!!?!?! Who is this guy and what procedure does he plan on doing on me?????
Dr. Onaitis is going to perform stomach wrap surgery on Tuesday so he wants to meet me on Monday! I then asked this very nice girl what about my stomach surgeon? Do you know who Dr. Perez is? Nope, she didn't. Hmmm again. Maybe I was getting confused but then the girl that this all might have something to do with Dr. Zaas. Of course! He apparently was emailing both Dr. Perez and Dr. Onaitis at the same time and the two docs had different opinions regarding doing a stomach wrap on me. Dr. Perez --NO! Dr. Onaitis -- Yes because he doesn't think I really have a nutcracker esophagus. I wonder who's test results he was reading!
Anyway, the final outcome is that I go to Duke Monday to meet the surgeon and then go to pre-op. On Tuesday I go to Duke North (the hospital) and check in for the surgery. I'll be in the hospital two to three days and then it's home on liquids or soft foods. I will be so hungry and want to eat everything that I can't!
Say a little prayer that I make a good patient :-)
More updates later!
Hugs and Love,
Lee, Wendy and Missy
Saturday, February 26, 2011
Tuesday, February 15, 2011
It's going to be a Happy New Year!
Hi all.
Well, as most of you know by now it's been a long month or so! In the middle of December, Lee and I flew to CA for Christmas and had a wonderful time with our family and friends. That time deserves a 'best Christmas ever' tag if only Amy and Michael were also there!
It was just after Christmas that things went haywire...we had already rescheduled our trip to return on the 4th of January because Lee really wanted to go to an important doctor appointment with his brother on December 30th. Everything went well with that appointment and so we were getting ready to head back to NC. We had to ship a couple of boxes because we somehow (like always!) ended up with more than we brought!!
It was so great to be staying with John and Sharen. Even though we added 5 more nights to our stay they were so fine about it. We got to see Emily (our youngest granddaughter) cheer for the Rio Linda HS Freshman team. That was really fun for us. She's so cute! We got to spend more time with Brandon too while he played NBA 2K11. I can't complain because I bought it for him! :-)
New Year's Eve we went to Karen and Rocky's house and had a really fun time. We had lots of food and played games and then we all went into the living room to play Dance II for the Wii machine. Even us old ladies gave it a try and it was a blast!!! If you're looking for a good exercise workout, this is it!
New Year's day was quiet until evening. Lee and I were going to spend the evening with the kids playing Wii while John and Sharen went to a play. Wii is super fun - I really never thought I'd have much use for it but I love it!!!
8:00 that night, my back started hurting and I went to lay down. The pain got so severe (couldn't even move without it taking me down). After two prescription pain pills we called 911. That was a first for me! Anyway I only remember parts of the trip to the hospital because I was really out of it (didn't know it had nothing to do with my back!).
Got to the ER at 10:00 p.m. and my temp was 103.6 degrees. That got their attention! Neither Lee nor I had any clue I was even running a fever!
ER started treating the fever and one of the first things they decided they needed to do was pull my PIC line out of my left arm. I've found that is the 'normal' protocol for anyone with a PIC line who presents in the ER with a high fever. They don't want to take a chance and it's relatively easy for germs to attach to the inside of a PIC line and then infiltrate the body (doesn't that sound ghastly!)
After they pulled the PIC, they decided I needed a line running from my groin to my heart...just no fun and pretty useless. They never used it as far as I know!
Labs and X-rays came back quickly and it was determined I had pneumonia, staff infection and gram negative infection. Geeez...that's enough for one night! But oh no that's not to be...during their administering to me my body decided to plummet my blood pressure. It went down to 74 over 18. Apparently that is really really not good! I came back around when one of the nurses was yelling and the dr. was yelling too (gee is that what woke me up?!??!!)
Anyway I went back out and have no idea how they fixed that problem. They put me in ICU and I spent the next day and night there. I got lots of IV meds and fluids. Next they transferred me to the transplant block of rooms and they gave me more drugs and monitored me. I was in the hospital for six nights. Definitely ready to go 'home' to John and Sharen's.
I was told by my CA docs that I needed to recuperate for two weeks before flying back to NC. Dr. Zaas, on the other hand, wanted me back at Duke ASAP. This created a dilemma because I didn't want to tick off either doctor. The CA doc would become my treating doctor upon a return to CA and Dr. Zaas is my current doctor. So I decided to 'split the difference' and go home in one week. Boy was Lee ready too! By then we had been in CA for over three weeks. Talk about overstaying your welcome!!! But John and Sharen were adamant that it was fine for us to stay as long as needed. I think they are now considering opening a boarding house or bed and breakfast when they retire. Just kidding! :-)
We finally got on a flight on January 15th - one month after we flew to CA!
We picked up our baby (Missy the dog) at 7:00 a.m. the next morning. She was really glad to see us and pretty well adjusted for having been dumped for a month :-) Camp Bow Wow is the greatest!!!!
The next couple of weeks were spent in doctor appoitments; finishing unpacking; taking down the Christmas decorations; and opening mail (ugh..the bills keep coming).
I go back to the doctor on the 23rd for a bronch, PFT, X-Rays and Clinic appointment. I'm worried about rejection. I've had minor rejection show up with every bronch except one. That's just not a good thing. I'll be talking with Dr. Zaas about this at my clinic appt. I'll let you know what's happening there.
This is all I can think of right now...
Love to everyone,
Lee, Wendy and Missy
Well, as most of you know by now it's been a long month or so! In the middle of December, Lee and I flew to CA for Christmas and had a wonderful time with our family and friends. That time deserves a 'best Christmas ever' tag if only Amy and Michael were also there!
It was just after Christmas that things went haywire...we had already rescheduled our trip to return on the 4th of January because Lee really wanted to go to an important doctor appointment with his brother on December 30th. Everything went well with that appointment and so we were getting ready to head back to NC. We had to ship a couple of boxes because we somehow (like always!) ended up with more than we brought!!
It was so great to be staying with John and Sharen. Even though we added 5 more nights to our stay they were so fine about it. We got to see Emily (our youngest granddaughter) cheer for the Rio Linda HS Freshman team. That was really fun for us. She's so cute! We got to spend more time with Brandon too while he played NBA 2K11. I can't complain because I bought it for him! :-)
New Year's Eve we went to Karen and Rocky's house and had a really fun time. We had lots of food and played games and then we all went into the living room to play Dance II for the Wii machine. Even us old ladies gave it a try and it was a blast!!! If you're looking for a good exercise workout, this is it!
New Year's day was quiet until evening. Lee and I were going to spend the evening with the kids playing Wii while John and Sharen went to a play. Wii is super fun - I really never thought I'd have much use for it but I love it!!!
8:00 that night, my back started hurting and I went to lay down. The pain got so severe (couldn't even move without it taking me down). After two prescription pain pills we called 911. That was a first for me! Anyway I only remember parts of the trip to the hospital because I was really out of it (didn't know it had nothing to do with my back!).
Got to the ER at 10:00 p.m. and my temp was 103.6 degrees. That got their attention! Neither Lee nor I had any clue I was even running a fever!
ER started treating the fever and one of the first things they decided they needed to do was pull my PIC line out of my left arm. I've found that is the 'normal' protocol for anyone with a PIC line who presents in the ER with a high fever. They don't want to take a chance and it's relatively easy for germs to attach to the inside of a PIC line and then infiltrate the body (doesn't that sound ghastly!)
After they pulled the PIC, they decided I needed a line running from my groin to my heart...just no fun and pretty useless. They never used it as far as I know!
Labs and X-rays came back quickly and it was determined I had pneumonia, staff infection and gram negative infection. Geeez...that's enough for one night! But oh no that's not to be...during their administering to me my body decided to plummet my blood pressure. It went down to 74 over 18. Apparently that is really really not good! I came back around when one of the nurses was yelling and the dr. was yelling too (gee is that what woke me up?!??!!)
Anyway I went back out and have no idea how they fixed that problem. They put me in ICU and I spent the next day and night there. I got lots of IV meds and fluids. Next they transferred me to the transplant block of rooms and they gave me more drugs and monitored me. I was in the hospital for six nights. Definitely ready to go 'home' to John and Sharen's.
I was told by my CA docs that I needed to recuperate for two weeks before flying back to NC. Dr. Zaas, on the other hand, wanted me back at Duke ASAP. This created a dilemma because I didn't want to tick off either doctor. The CA doc would become my treating doctor upon a return to CA and Dr. Zaas is my current doctor. So I decided to 'split the difference' and go home in one week. Boy was Lee ready too! By then we had been in CA for over three weeks. Talk about overstaying your welcome!!! But John and Sharen were adamant that it was fine for us to stay as long as needed. I think they are now considering opening a boarding house or bed and breakfast when they retire. Just kidding! :-)
We finally got on a flight on January 15th - one month after we flew to CA!
We picked up our baby (Missy the dog) at 7:00 a.m. the next morning. She was really glad to see us and pretty well adjusted for having been dumped for a month :-) Camp Bow Wow is the greatest!!!!
The next couple of weeks were spent in doctor appoitments; finishing unpacking; taking down the Christmas decorations; and opening mail (ugh..the bills keep coming).
I go back to the doctor on the 23rd for a bronch, PFT, X-Rays and Clinic appointment. I'm worried about rejection. I've had minor rejection show up with every bronch except one. That's just not a good thing. I'll be talking with Dr. Zaas about this at my clinic appt. I'll let you know what's happening there.
This is all I can think of right now...
Love to everyone,
Lee, Wendy and Missy
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