Monday, June 6, 2011

Wow! It's been a while and things have really changed now!!!

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! 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. 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 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 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

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

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