Hi all. I haven't blogged because I felt that I didn't really have much exciting to say. It was the same old "blah blah blah" and I got into a routine that left out time for blogging. I'm sorry about that and I will try to be better at it in the future. My family and friends mean so much to me and this really is a way to feel closer when I don't get to see them often!
With that out of the way :-)...I did get a new stomach wrap in March and it has really worked! I felt great afterwards and I haven't had any food inhalation problems. That's so great! April was a pretty quiet month. Lee and I decided that our rental house was just not cutting it! We had NO storage and I just couldn't get into the carport idea. So with surprisingly little work we found our new house and by now we are done relocating around NC! Good or bad this house stays:-)
Some of you are probably wondering why we haven't just packed up and headed back to CA. Well we both need to say that it's really not that easy! First of all, I have not received a medical clearance for us to move back. In fact they haven't even mentioned it. None of this treatment is cut and dried. We have no idea when we would move back to CA so we both want to be as comfortable as possible while we live here.
As I said earlier, April was great. We got the news that I now had finally reached two months in a row with no rejection! That was beyond super for us! We were so excited and so were the Docs and nurses. I don't even like to think about what they had planned if the results were different! But they weren't so we sort of scooted through the month. We went to the NC Farmer's Market in Greensboro and got some great zucchini to stuff and bake. Yummy!
We went to see our good friends Don and Susan Biggerstaff and that was so much fun. They live about two hours from us and have a gorgeous house that easily accommodates Lee, Missy and me for a visit. We went to stay for the day and ended up staying for the night. Most embarrassing part was when Missy got upstairs, she didn't quite understand how to get down again. I think it was fear and Lee of course said we just hadn't taught her yet! Either way, Lee ended up carrying Missy down the stairs. I considered just leaving money for food and asking Susan to call me if Missy ever came downstairs :-) ! Other than that, the three of us look forward to going back to see them again!
Then May rolled in....
We had beautiful weather so we went to the Kernersville Spring Folly which is a giant street fair in the downtown historic part of Kernersville. Well, we weren't the only first time people at the Folly. CNN had a huge truck/bus there with interviews etc. Lee and I ran into them later and asked what brought them to this particular event. They said that the Kernersville area was documented as one of the fastest growing areas in the United States and they wanted to see why! Well..is there a better way to see the true Kerenersville than attending the Spring Folly? Maybe...maybe not! There was a great turnout!! Lee and I chit chatted with the local firemen and policemen and business people and fellow Kernersvillians (ok, I'm sure I made that word up!)
They had a craft area and and entertainment area and of course, a food area. We just couldn't pass up that blooming onion. It was huge and calling our name so we split one with ranch dressing to dip it in...really good but it became the beginning of the end.
We headed home after we'd seen most of Folly and had a great rest of the day and then dinner. At midnight everything broke loose! I woke up sooooo sick. I tried so hard to vomit but thanks to Dr. Onideas my stomach wrap prevented that from happening so my insides just kept wrenching those muscles while I had awful diarrhea. Yes I know my Amy says I should not discuss this kind of stuff but I have to say it was horrible! This same combination of activities took place every 10-15 minutes from Midnight until about 9:00 a.m. I was drained and feeling close to death!!! Of course God didn't plan on me dying right then but I was sure game!
Being this sick kept me from attending a really great picnic at the park for Mother's Day. I was so disappointed. Several families attended and everyone had a great time! I stayed super sick through the following Thursday when I called my Transplant Coordinator for the second time and said I just didn't feel any better. So....off to Baptist Hospital in Winston-Salem for IV fluids. Baptist is a good hospital and it's only abut 20 minutes away while Duke is 80 - 90 minutes away.
The IV fluids immediately made me feel better. Even though I was trying to drinking as much water as possible I had gotten really dehydrated. I thought this trip would be like going to the gas station...you know "fill her up" and head on home. Except it turns out that the dehydration had put me in renal failure which is not a good thing. I ended up being a patient at Baptist from Thursday - Saturday. My renal problems came under control and I felt so much better after being plumped up with fluids I was not 'cured' but I was sure well enough to go back home.
Lee and I were both so glad that I was feeling better. Did I mention that Lee was also sicker than I think I've ever seen him. That made it so much worse! Poor guy...he had us all moved into the new house while I was in the hospital and he was sick too! All we needed to do was lay down and feel cruddy for a few days and then all would be well with the world! Nope! Lee did get better but I just kept getting worse and worse and neither of us knew what to do. I was trying everything and it just didn't stay in my body!
Another call to Tracie (my coordinator) and I was being admitted to Duke. I think Lee and I both knew this was going to happen but we were hoping and praying I'd get better. Lee brought me down to the hospital and stayed with me until I was situated in 7800 again. After a million tests and IVs and meds they finally decided I didn't have C Diff, CMV or several other very nasty bugs or diseases. It was basically a case of me having no immune system and getting food poisoning or a virus allowed the bugs to take over my immunosuppressed body. Well my body fought back...it just took two long stays in the hospital and the help of my unbelievably helpful husband! I just love him so much!
Lee and I were both feeling well and looking forward to getting the house a little organized. Boy this is when I need Sharen, Vanessa, Terri, Amy and a and bunch of others that are way better than me at organizing!!!!
We also realized that we need more furniture. This house has an eating area in the kitchen and we need a table and chest of some kind (so I can store my cookbooks etc) The following weekend was Memorial Weekend so we trucked all over the place looking for tables etc. Ugh! It wasn't fun at all because we couldn't find just what we wanted. Monday morning we went to one more place and found a table! Yay! We were both so excited but I still didn't have my chest (-: Lee didn't care. We had a table and he was done for awhile with furniture shopping. I couldn't blame him!
That afternoon I went to the fabric store - alone of course :-) On my way home I saw a furniture store we hadn't been to (didn't know there was one!) I swung in with high hopes of finding the perfect chest for the kitchen! That would just complete our day!
I walked all over the store and finally, in the back of the store, I found a hutch that might just work. But...there wasn't a price tag on it! Everything but this one item had tags on it! Just my luck! I saw a table and chairs set that had prices listed on a paper and thought the hutch might be listed. One turn of my body and then a step or two and I really could say "just my luck"! My foot caught on a rug that was higher and stiffer than all the others. My foot didn't move and my body sort of launched or fell to the cement floor so that my hip hit first! I don't know if any of you have ever had an injury where you could immediately say to yourself "oh this isn't good". Well that was my injury! The people at the furniture store weren't super helpful - 30 minutes + until the EMS arrived and the staff seemed very non-chalant that they had a customer laying on their floor who couldn't move. Finally got to a hospital in Greensboro and Lee and Amy and Michael arrived. The doc came in and said my hip was broken and he didn't care what hospital I chose to have surgery but surgery it would be!
Amy suggested we ask Duke if they were good with us staying in Greensboro or if they wanted us to come to Duke. I looked at Amy like she had grown a new head! Everyone thought that was a great idea while I thought they had lost their minds...Duke was not going to let me out of their hands for major surgery!
I was right...They wanted to have me transported to Duke under the care of Dr. Zaas (when did my pulmonologist become an ortho specialist???)
They shipped me by ambulance to Duke Monday night and I had surgery on Wednesday. Lee and Amy were here and I just felt safe. As much as I didn't want to make the drive down to Duke, I had all my docs in one place with new Duke Ortho guys and God, Lee and Amy watching over it all, I new I was going to be just fine! Amy would make sure of it! Lee and I have found in medical situations that she is a "take-charge" kind of girl and everybody better shape up and do their part correctly! That includes Lee and Me!!!
It's now a week after the fall and Lee and I (plus friends and family) have been through a lot! Physical Therapy was excruciating at times but I know the effort and pain will pay off and that someday I should be able to walk without a walker or maybe even without a cane! I'm working my butt off towards that end! This is going to be a tremendous amount of work - not just for me! - and it will be costly but it's worth it. And just think...through the whole thing I can breathe!!!!! Praise God for that one!!!
Love and Hugs to everyone and because there will be changing updates, I'll blog a lot more often!
Lee, Missy and Wendy
Monday, June 6, 2011
Saturday, February 26, 2011
Bronch Results and The Continuing Saga of the Stomach Wrap!
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
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
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
Saturday, December 18, 2010
It's beginning to look like Christmas!
Merry Christmas to everyone!!!!
We have arrived in Sacramento, CA and the weather is nasty! Rain and rain and rain! But...I have to say that rain is a great improvement over the snow and ice we left behind in Kernersville. Our driveway was a personal skating rink and as for the roads...we just stayed off of them until the ice melted in the afternoon. Then of course they re-froze at night and it started over again.
With a 6:00 a.m. flight out of Greensboro yesterday morning Lee and I were worried about Amy driving us to the airport at 4:30 in the morning. 4-wheel drive does not help on ice! We ended up getting a room at the Marriot by the airport and the shuttle took us the 1.2 miles to United's terminal. That gave us peace of mind...we didn't want to miss our flight and we didn't want to end up in a ditch somewhere and I didn't want Amy ending up in that same ditch on the way back home!
Our flight wasn't bad at all. We were really nervous about flying into Chicago because of all the storms in the Midwest. When we arrived it wasn't even raining! The flight to Sacramento was uneventful and I slept part of the way.
We are driving a mini van rental. I love it! Lee isn't quite as sure. I can see out of it as well as I can from my Rav 4. Maybe that should be my next car! :-)
We are staying at John and Sharen's house and that is going to be great. It's really nice to be able to just kick back and visit and the kids are so grown up now. We have lots of friends and family to see while we are in Sacramento and then it's on to Pebble Beach on Christmas day to see the rest of the family! I'm really looking forward to that!!!!
Medical update...
I have a cold (my very first one) but it seems to be manageable so far. My blood tests came back showing that my cyclosporine (anti rejection med) numbers are too low so once again I need to up the amount I take of that. I'm up to 175 mg twice a day. Blood tests also showed that my white blood cells are WAY too low...they were really concerned about that one because it means I basically have no immune system at the moment. The fix for that? More stomach shots! At least it's only once a week for this one! I need to find a lab here to have more blood work done on Wednesday. I don't plan on getting sick while I'm here...I just want to have fun!!!
We wish each of you a wonderful and blessed Christmas season! I'll write again after the holidays!
Love to all,
Lee, Wendy and Missy
We have arrived in Sacramento, CA and the weather is nasty! Rain and rain and rain! But...I have to say that rain is a great improvement over the snow and ice we left behind in Kernersville. Our driveway was a personal skating rink and as for the roads...we just stayed off of them until the ice melted in the afternoon. Then of course they re-froze at night and it started over again.
With a 6:00 a.m. flight out of Greensboro yesterday morning Lee and I were worried about Amy driving us to the airport at 4:30 in the morning. 4-wheel drive does not help on ice! We ended up getting a room at the Marriot by the airport and the shuttle took us the 1.2 miles to United's terminal. That gave us peace of mind...we didn't want to miss our flight and we didn't want to end up in a ditch somewhere and I didn't want Amy ending up in that same ditch on the way back home!
Our flight wasn't bad at all. We were really nervous about flying into Chicago because of all the storms in the Midwest. When we arrived it wasn't even raining! The flight to Sacramento was uneventful and I slept part of the way.
We are driving a mini van rental. I love it! Lee isn't quite as sure. I can see out of it as well as I can from my Rav 4. Maybe that should be my next car! :-)
We are staying at John and Sharen's house and that is going to be great. It's really nice to be able to just kick back and visit and the kids are so grown up now. We have lots of friends and family to see while we are in Sacramento and then it's on to Pebble Beach on Christmas day to see the rest of the family! I'm really looking forward to that!!!!
Medical update...
I have a cold (my very first one) but it seems to be manageable so far. My blood tests came back showing that my cyclosporine (anti rejection med) numbers are too low so once again I need to up the amount I take of that. I'm up to 175 mg twice a day. Blood tests also showed that my white blood cells are WAY too low...they were really concerned about that one because it means I basically have no immune system at the moment. The fix for that? More stomach shots! At least it's only once a week for this one! I need to find a lab here to have more blood work done on Wednesday. I don't plan on getting sick while I'm here...I just want to have fun!!!
We wish each of you a wonderful and blessed Christmas season! I'll write again after the holidays!
Love to all,
Lee, Wendy and Missy
Thursday, December 2, 2010
Well...I missed the month of November!
Hi everyone.
Thanks to those of you who sent reminder notes that my blog showed me still in the hospital! I did get discharged :-)
I completed the Rat-G treatment and didn't get sick at all in the hospital...I was so proud of myself! Well...they discharged me on Sunday evening and Monday morning around 3:00 a.m. I was sicker than I think I've ever been:-( Apparently I just had a delayed reaction to the drugs. Ughhhh! It was really horrible! I hope I don't have to do that one again.
That episode was the beginning of November. With me being that sick on the 1st I just knew the rest of the month would get better!
We were scheduled to move out of our apartment on November 13th and we really weren't ready. Lee had been taking loads in his pickup but we both think the junk was multiplying in the night! Lee packed up the kitchen and most of his clothes while I was in the hospital...guess he didn't need to eat or wear clean underwear (jk) !! We finally got it all packed up by the 12th. We had planned to go to a really nice restaurant for dinner on the 12th because we had no dishes, food or anything else. We were so exhausted that we canceled the reservation and I don't think I even ate that night! :-)
Saturday the 13th Lee went to pick up the rental truck and at least 20 people from our church came over to help us load the truck and clean the apartment. That was such a help...I've never walked out of my house and told my friends that they could lock the apartment up when they were done cleaning! Around 10 people drove to Kernersville to help unload the truck. Lee and I have been totally blessed to have found such a wonderful church family in Durham. We were doubtful when we first arrived in Durham but God lead us to Hope Valley Baptist Church and it's been fabulous - great messages, great friends and of course great food :-)
In our update we have now reached the middle of November with very little Christmas gifts purchased and about 3 million boxes to unpack or did it just seem like that many??? I thought we had labeled the outside of the boxes as to what room they went in..NOT. Because we were reusing the boxes we used when we came out to NC, several boxes didn't get re-labeled. That meant that canned goods ended up in the craft room and it took almost two weeks to find Lee's cell phone charger because it was in a box labeled 'guest room misc.' instead of 'office stuff'. Today is December 2nd and in the last half of November we have unpacked the majority of boxes and gotten somewhat organized.
We also had a great Thanksgiving! We went to Michael's family's house and it was so fun. They are the nicest people and it makes me laugh that they have some really funny 'growing up' stories just like we all do! We missed Amy and Michael because they went to Amy's dad and stepmom's for the holiday. Amy said they had a great time and I'm glad. They don't get to see Dale and Lorie all that often (distance) and life is precious and so is family.
About Thanksgiving for Lee and me...I obviously have everything to be thankful for this year! I can breathe. Above all I thank God for always being with me (then and now) and not letting me drag myself too far down in the muck and mire of self-pity and other non-productive emotions. I can't say enough about faith and patience. This year was a year of strengthened faith and new found patience!
Next I give thanks for the selfless decision of another person or family to donate lungs to me. Thanks to all the docs that kept me going until a donor could be found. Thanks to the surgeon and staff that did such an awesome job creating 'designer lungs' just for my body. Thanks to Tracie and the other TX coordinators for always being on top of my health issues...and we can't forget Lauren and Khara for all their work pre-transplant! Thanks to the docs that still keep me going every single day. Thanks for giving me back my life, my family and my friends.
On to a little medical update...
I haven't been in the hospital since the Rat-G episode. Yay!! Lee and I have both gotten run down from all of the moving. I have come down with a cold but it seems to be staying in my head. I've been getting short of breath so Tracie (tx coordinator) wanted me to come to clinic last Wednesday (day before Thanksgiving). I had a chest xray, blood work and a PFT (pulmonary function test). They looked ok but Dr. Zaas wanted to be oh so cautious and I count on that thought process to keep me alive ;-) He wanted to do a 'quick' CT scan to rule out pulmonary embolisms. Well that quick CT ended up taking six hours because the radiology folks thought I'd had a reaction to the CT dye. It wasn't fun waiting in Durham. But all was well and the scan was clear.
I had my regular bronchoscopy on Monday and I cane back again yesterday to see how my breathing was. I had all the same tests from the week before and saw Dr. Z again. Test results were ok again but because my cold was worse and I was coughing up a little bit of 'blood gobs' he put me on an antibiotic.
My bronch still showed a small amount of rejection so instead of the hospital they ordered solumedrol home IV and a prednisone taper starting at 60 mg. I already gave Lee a heads up that by the time I get the solumedrol and prednisone on board I'll be pretty hyped (let's paper all the walls in the house and then paint the outside...oh, come on Lee it's only 3:00 in the morning!!!)
I got a call yesterday afternoon saying I had to have a followup bronch the first of January because I still have mild rejection. I guess I would have had a break for a month or two if there was no rejection. I don't know what their plan will be if January's bronch shows rejection again. I think I won't worry about it because there's nothing I can do about it - except take care of myself.
I do want to remember to ask Dr Zaas at what point mild rejection might become chronic rejection. Chronic rejection is a biggie. So is moderate rejection - haven't had that!
I've been saving the most exciting news for last - Lee and I are coming out to CA for Christmas!!!! Thanks a huge bunch to Gordon and Ronda...your generosity doesn't seem to know any bounds! We will be coming out on December 17th and staying with John and Sharen and the kids through the 24th. Can't wait!!!!! Our baby Missy will be staying at Camp Bow Wow. It seems like a nice place and we'll be able to check up on her via cameras we can access over the internet. Hope that will be a positive thing!
On Christmas day we will drive to Pebble Beach to share Christmas with my side of the family - Gordon, Ronda, Keith, Stephen, Sue, Rick, Mike, Jake and Jen. We will miss seeing Steve, Amie, Phil and Zach but I certainly understand them wanting to stay in Denver with Amie's mom (her first year in Denver). We leave Pebble Beach the afternoon of the 28th so we are back in Sacramento to catch a flight that leaves way early :-)
We plan on attending church at FSBCRL on the 19th. It will be so nice to see everyone...been too long! The rest of the week is dedicated to seeing Lee's side of the family and as many friends as we can fit it!
Look for our Christmas card in the mail...if it doesn't arrive there's always next year to get them out!
Lots of love and hugs,
Lee, Wendy and Missy
Thanks to those of you who sent reminder notes that my blog showed me still in the hospital! I did get discharged :-)
I completed the Rat-G treatment and didn't get sick at all in the hospital...I was so proud of myself! Well...they discharged me on Sunday evening and Monday morning around 3:00 a.m. I was sicker than I think I've ever been:-( Apparently I just had a delayed reaction to the drugs. Ughhhh! It was really horrible! I hope I don't have to do that one again.
That episode was the beginning of November. With me being that sick on the 1st I just knew the rest of the month would get better!
We were scheduled to move out of our apartment on November 13th and we really weren't ready. Lee had been taking loads in his pickup but we both think the junk was multiplying in the night! Lee packed up the kitchen and most of his clothes while I was in the hospital...guess he didn't need to eat or wear clean underwear (jk) !! We finally got it all packed up by the 12th. We had planned to go to a really nice restaurant for dinner on the 12th because we had no dishes, food or anything else. We were so exhausted that we canceled the reservation and I don't think I even ate that night! :-)
Saturday the 13th Lee went to pick up the rental truck and at least 20 people from our church came over to help us load the truck and clean the apartment. That was such a help...I've never walked out of my house and told my friends that they could lock the apartment up when they were done cleaning! Around 10 people drove to Kernersville to help unload the truck. Lee and I have been totally blessed to have found such a wonderful church family in Durham. We were doubtful when we first arrived in Durham but God lead us to Hope Valley Baptist Church and it's been fabulous - great messages, great friends and of course great food :-)
In our update we have now reached the middle of November with very little Christmas gifts purchased and about 3 million boxes to unpack or did it just seem like that many??? I thought we had labeled the outside of the boxes as to what room they went in..NOT. Because we were reusing the boxes we used when we came out to NC, several boxes didn't get re-labeled. That meant that canned goods ended up in the craft room and it took almost two weeks to find Lee's cell phone charger because it was in a box labeled 'guest room misc.' instead of 'office stuff'. Today is December 2nd and in the last half of November we have unpacked the majority of boxes and gotten somewhat organized.
We also had a great Thanksgiving! We went to Michael's family's house and it was so fun. They are the nicest people and it makes me laugh that they have some really funny 'growing up' stories just like we all do! We missed Amy and Michael because they went to Amy's dad and stepmom's for the holiday. Amy said they had a great time and I'm glad. They don't get to see Dale and Lorie all that often (distance) and life is precious and so is family.
About Thanksgiving for Lee and me...I obviously have everything to be thankful for this year! I can breathe. Above all I thank God for always being with me (then and now) and not letting me drag myself too far down in the muck and mire of self-pity and other non-productive emotions. I can't say enough about faith and patience. This year was a year of strengthened faith and new found patience!
Next I give thanks for the selfless decision of another person or family to donate lungs to me. Thanks to all the docs that kept me going until a donor could be found. Thanks to the surgeon and staff that did such an awesome job creating 'designer lungs' just for my body. Thanks to Tracie and the other TX coordinators for always being on top of my health issues...and we can't forget Lauren and Khara for all their work pre-transplant! Thanks to the docs that still keep me going every single day. Thanks for giving me back my life, my family and my friends.
On to a little medical update...
I haven't been in the hospital since the Rat-G episode. Yay!! Lee and I have both gotten run down from all of the moving. I have come down with a cold but it seems to be staying in my head. I've been getting short of breath so Tracie (tx coordinator) wanted me to come to clinic last Wednesday (day before Thanksgiving). I had a chest xray, blood work and a PFT (pulmonary function test). They looked ok but Dr. Zaas wanted to be oh so cautious and I count on that thought process to keep me alive ;-) He wanted to do a 'quick' CT scan to rule out pulmonary embolisms. Well that quick CT ended up taking six hours because the radiology folks thought I'd had a reaction to the CT dye. It wasn't fun waiting in Durham. But all was well and the scan was clear.
I had my regular bronchoscopy on Monday and I cane back again yesterday to see how my breathing was. I had all the same tests from the week before and saw Dr. Z again. Test results were ok again but because my cold was worse and I was coughing up a little bit of 'blood gobs' he put me on an antibiotic.
My bronch still showed a small amount of rejection so instead of the hospital they ordered solumedrol home IV and a prednisone taper starting at 60 mg. I already gave Lee a heads up that by the time I get the solumedrol and prednisone on board I'll be pretty hyped (let's paper all the walls in the house and then paint the outside...oh, come on Lee it's only 3:00 in the morning!!!)
I got a call yesterday afternoon saying I had to have a followup bronch the first of January because I still have mild rejection. I guess I would have had a break for a month or two if there was no rejection. I don't know what their plan will be if January's bronch shows rejection again. I think I won't worry about it because there's nothing I can do about it - except take care of myself.
I do want to remember to ask Dr Zaas at what point mild rejection might become chronic rejection. Chronic rejection is a biggie. So is moderate rejection - haven't had that!
I've been saving the most exciting news for last - Lee and I are coming out to CA for Christmas!!!! Thanks a huge bunch to Gordon and Ronda...your generosity doesn't seem to know any bounds! We will be coming out on December 17th and staying with John and Sharen and the kids through the 24th. Can't wait!!!!! Our baby Missy will be staying at Camp Bow Wow. It seems like a nice place and we'll be able to check up on her via cameras we can access over the internet. Hope that will be a positive thing!
On Christmas day we will drive to Pebble Beach to share Christmas with my side of the family - Gordon, Ronda, Keith, Stephen, Sue, Rick, Mike, Jake and Jen. We will miss seeing Steve, Amie, Phil and Zach but I certainly understand them wanting to stay in Denver with Amie's mom (her first year in Denver). We leave Pebble Beach the afternoon of the 28th so we are back in Sacramento to catch a flight that leaves way early :-)
We plan on attending church at FSBCRL on the 19th. It will be so nice to see everyone...been too long! The rest of the week is dedicated to seeing Lee's side of the family and as many friends as we can fit it!
Look for our Christmas card in the mail...if it doesn't arrive there's always next year to get them out!
Lots of love and hugs,
Lee, Wendy and Missy
Thursday, October 28, 2010
Third Hospitalization :-(
My bronchoscopy results are coming in and three out of four biopsy 'plugs' show rejection. The docs aren't waiting for any more results. They want me in the hospital to take this pretty strong medication.
The short name of the medication is Rat-G and it's known to make lots of people really sick to their stomachs...but not everyone! I'm planning on being one of the not sick people.
Other than that, I was feeling pretty OK. I've been walking a lot and that feels really good. I'm up to a bit over a mile in 20 minutes. I know I'll get better but that takes time!
Lee is feeling good. We actually went to the doctor for him this morning - nice change :-) He had a cardiology appointment and all is well. That's great news. The doctor we had is from CA and his name is Mark Winchester. That's from the rifle family! He is super nice!
We have found a little house to rent in Kernersville. Because we need to stay at least a year post transplant, we had decided to make that year closer to Amy. It wasn't easy finding a rental house but this one will be fine. It has 3 bedrooms and 2 baths and a fenced yard for Missy. It's about 10 - 15 minutes from Amy and Michael. We're slowly moving stuff up there but this hospitalization will put a dent in that...unless Lee moves all my stuff out without my being aware of it :-)
Everyone take care and I hope that everyone who's cheering for the Giants gets their wish!
Love and hugs,
Lee, Wendy and Missy
The short name of the medication is Rat-G and it's known to make lots of people really sick to their stomachs...but not everyone! I'm planning on being one of the not sick people.
Other than that, I was feeling pretty OK. I've been walking a lot and that feels really good. I'm up to a bit over a mile in 20 minutes. I know I'll get better but that takes time!
Lee is feeling good. We actually went to the doctor for him this morning - nice change :-) He had a cardiology appointment and all is well. That's great news. The doctor we had is from CA and his name is Mark Winchester. That's from the rifle family! He is super nice!
We have found a little house to rent in Kernersville. Because we need to stay at least a year post transplant, we had decided to make that year closer to Amy. It wasn't easy finding a rental house but this one will be fine. It has 3 bedrooms and 2 baths and a fenced yard for Missy. It's about 10 - 15 minutes from Amy and Michael. We're slowly moving stuff up there but this hospitalization will put a dent in that...unless Lee moves all my stuff out without my being aware of it :-)
Everyone take care and I hope that everyone who's cheering for the Giants gets their wish!
Love and hugs,
Lee, Wendy and Missy
Saturday, October 16, 2010
I'm alive and well and ten weeks out!
I'm so sorry that I haven't blogged in such a long time.
Since the last blog...
I had my stomach wrap surgery on Thursday, September 30th and was discharged from the hospital on Saturday, October 2nd. I was a little weak from being in the hospital so long (almost two weeks) so we didn't do anything that weekend.
On that Monday we drove up to Kernersville to look at what might be available for rental houses. Because we have to stay at least a year post transplant, we had decided to spend that time up in Kernersville - closer to Amy and Michael. We would also be closer to Michael's family who have been a real joy to us! They have taken us in and made us feel like family!
The rest of that week I went to rehab every day and went from walking 10 minutes very slowly on Tuesday to walking a mile in 20 minutes by Friday. For me that is awesome because if I look back to ten weeks ago, I couldn't walk across the living room without my walker!
This week I saw the surgeon for a follow-up on the 11th. He asked how I was doing and my response was "just fine!" In fact, I was a little concerned that I had popped the two stitches that hold the stomach wrapped around my esophagus because I felt so good. Pretty much everyone I knew who had this done said the first three weeks were really bad and I just didn't have a single problem! :-) The surgeon assured me I didn't pop anything and said I didn't need to come back to see him!
Then, on the 13th, I saw Dr. Zaas. I hadn't had a clinic appointment with him since transplant. I really like each of the transplant doctors but I'll always have an affinity towards Dr. Zaas because he was the doc who saw me through the year of pre-transplant. Dr. Zaas is the only doctor who can look at me and know just how far I've come...even I tend to forget sometimes. The appointment was great. My X-ray was good, my PFTs were good and my blood work was good! Dr. Zaas lengthened my leash so that Lee and I can relocate up to Kernersville when the time is right. That's a big deal because sometimes patients are kept really close for months and months if the docs don't think they are doing as well as they should.
I was also switched from once a week to once every two weeks for clinic appointments. Yay! I must finally be improving!!!! I feel really good. In fact I've felt great since the 11th and I think that's a record for me :-) It is so great to be able to exercise and go to the store and do all the little things that other people can do. I still can't lift anything because of the stomach wrap but that will change on Nov 11th.
I'm attending a Women's retreat this weekend at our church and it's so fun to be with a bunch of other women without worrying about breathing! Life is really, really good!
On the home front, I'm finally finishing up some birthday presents to be mailed...thanks for your patience Brandon and Vanessa (September) and Sharen (July). I better start on Christmas now so they get shipped before Valentine's Day! :-)
I know there is other stuff I should be telling everyone but it's early here and I won't think of it until after I've posted this blog :-) Lee is great - like always! Have I said how fortunate I am to have him as my husband? He is so supportive and encouraging of me and I think he's been the best caretaker ever. He needs to win an award for all he's done in the last couple of years! Missy is good too. I don't think she's looking forward to winter here if we get snow again but other than that all is well with her...a place to sleep and a non-stop supply of dog treats :-)
I will honestly try to blog sooner next time. Also...as soon as I get the pics from Amy I will post some transplant photos for you!
Love to all,
Lee, Wendy and Missy
Since the last blog...
I had my stomach wrap surgery on Thursday, September 30th and was discharged from the hospital on Saturday, October 2nd. I was a little weak from being in the hospital so long (almost two weeks) so we didn't do anything that weekend.
On that Monday we drove up to Kernersville to look at what might be available for rental houses. Because we have to stay at least a year post transplant, we had decided to spend that time up in Kernersville - closer to Amy and Michael. We would also be closer to Michael's family who have been a real joy to us! They have taken us in and made us feel like family!
The rest of that week I went to rehab every day and went from walking 10 minutes very slowly on Tuesday to walking a mile in 20 minutes by Friday. For me that is awesome because if I look back to ten weeks ago, I couldn't walk across the living room without my walker!
This week I saw the surgeon for a follow-up on the 11th. He asked how I was doing and my response was "just fine!" In fact, I was a little concerned that I had popped the two stitches that hold the stomach wrapped around my esophagus because I felt so good. Pretty much everyone I knew who had this done said the first three weeks were really bad and I just didn't have a single problem! :-) The surgeon assured me I didn't pop anything and said I didn't need to come back to see him!
Then, on the 13th, I saw Dr. Zaas. I hadn't had a clinic appointment with him since transplant. I really like each of the transplant doctors but I'll always have an affinity towards Dr. Zaas because he was the doc who saw me through the year of pre-transplant. Dr. Zaas is the only doctor who can look at me and know just how far I've come...even I tend to forget sometimes. The appointment was great. My X-ray was good, my PFTs were good and my blood work was good! Dr. Zaas lengthened my leash so that Lee and I can relocate up to Kernersville when the time is right. That's a big deal because sometimes patients are kept really close for months and months if the docs don't think they are doing as well as they should.
I was also switched from once a week to once every two weeks for clinic appointments. Yay! I must finally be improving!!!! I feel really good. In fact I've felt great since the 11th and I think that's a record for me :-) It is so great to be able to exercise and go to the store and do all the little things that other people can do. I still can't lift anything because of the stomach wrap but that will change on Nov 11th.
I'm attending a Women's retreat this weekend at our church and it's so fun to be with a bunch of other women without worrying about breathing! Life is really, really good!
On the home front, I'm finally finishing up some birthday presents to be mailed...thanks for your patience Brandon and Vanessa (September) and Sharen (July). I better start on Christmas now so they get shipped before Valentine's Day! :-)
I know there is other stuff I should be telling everyone but it's early here and I won't think of it until after I've posted this blog :-) Lee is great - like always! Have I said how fortunate I am to have him as my husband? He is so supportive and encouraging of me and I think he's been the best caretaker ever. He needs to win an award for all he's done in the last couple of years! Missy is good too. I don't think she's looking forward to winter here if we get snow again but other than that all is well with her...a place to sleep and a non-stop supply of dog treats :-)
I will honestly try to blog sooner next time. Also...as soon as I get the pics from Amy I will post some transplant photos for you!
Love to all,
Lee, Wendy and Missy
Subscribe to:
Posts (Atom)