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

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

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

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

Monday, September 27, 2010

Change in Plans

Hi all.

There's been a change in plans...

Apparently my reflux is considerably worse than I realized - and worse than the docs realized!  Because of this, Dr. Gray (last transplant doc I had to meet) was going to try and get me into the stomach wrap surgeon (Dr. Perez) within a couple of weeks so that my stomach wrap could get scheduled.

Then Dr. Gray spoke with Dr. Zaas and they ran into Dr. Perez in the hallway.  They all spoke about my case and Dr. Perez said he would do the surgery this Thursday!  Well....now I'm staying in they hospital and undergoing a couple more tests and meeting with the anesthesiologist and having the surgery on Thursday.  Hopefully I will then be discharged on Saturday or Sunday if all goes well.  This will be a really long hospital stay!

In layman's terms the stomach wrap takes a section of the stomach and wraps it around the esophagus to decrease the diameter of the esophageal opening into and out of the stomach.  This keeps food and/or acid from refluxing back up into the esophagus and then into my brand new lungs.  Reflux is one of the main causes of infection and then rejection in transplanted lungs.  Duke is considering making this stomach wrap surgery a mandatory part of lung transplant.

Dr. Zaas really wasn't good with sending me home anyway because I am still struggling too much to breathe.  He knows me and knows my baseline better than the other docs so he was able to see right away that my breathing wasn't where it should be.  This time should allow me to heal, rest and exercise to get stronger. 

I am planning on feeling much better when I go home but, from what I hear, that may not be the case.  Apparently with the stomach wrap a patient feels cruddy (nauseous, etc.) for around 3 weeks and then they start feeling much better until there are no symptoms at all.  At least I should be able to breathe better :-)

I'll keep you posted with other updates!

Love,
Lee, Wendy and Missy

Sunday, September 26, 2010

It has been one long week!

Hi everyone. 

I'm sorry I haven't blogged but life has been getting in my way all week :-)

You all know that I was admitted to the hospital on the 10th and discharged home on the 15th.  That was a good thing. 

Then during the weekend of the 18th - 19th I started feeling like I was coming down with a cold.  I haven't had a cold and/or flu for at least two years but one always remembers that scratchy funny feeling in your throat and chest.  The glands in my throat and neck were tender also.  I called my coordinator on call and -- off to the ER for x-rays and blood work to check for infection.  Four hours later I was declared 'clean' and Lee and I got to go home.

Tuesday morning...my cold hit! I just felt lousy -- headache, chest tightness, achy, etc.  I knew we had an appointment with Dr. Zaas on Wednesday and I really wanted to see him because I haven't had an appointment with him since transplant (I've been seeing other docs on the team).  So...I contacted the coordinator on call and asked for something to tide me over until the next day when I saw Dr. Zaas.  Tracie, my coordinator, called me back and said I had to go to clinic right then.  She had talked with Dr. Zaas and neither were willing to wait a day for me to be seen.  Off to clinic!

After more x-rays, blood work and PFTs I saw Dr. Snyder.  She is a great doctor and I've seen her a couple of times since transplant.  Short version of our conversation...the x-ray showed some 'atypical' stuff in the lungs and the blood work showed elevated white blood cells.  Because I was so 'new out' (newly transplanted) and because they found rejection in the last bronch biopsy and because I was just in the hospital with the fungal infection Dr. Snyder wanted me back in the hospital so she could do another bronchoscopy on Wednesday and start treating me aggressively to try and knock all this stuff out of me!

Dr. Snyder didn't care if I got put on the 7800 floor (pulmonary) or not.  She was willing to put me in any bed in the hospital and because of that Lee and I got to go home and wait for the hospital to call and tell us they had a room.  That is so much better than waiting for hours in admitting!  I ended up in 3100, the ICU step-down unit I had been in post transplant.  That's nice because I do know some of the nurses.

When I got there Tuesday, they started me on IV anti-biotics and oral anti-biotics.  I didn't know that you could take more than one at once but I'm certain these guys all know a lot more than I do when it comes to meds.  On Wednesday Dr. Snyder performed the bronchoscopy and three biopsies.  I had more blood work and we all waited for results.

Thursday late afternoon we got some results:  First - and most important - the biopsy showed NO REJECTION!  That is such a big deal!!!  For the first time since transplant, my body wasn't trying, at least to some degree, to reject my new lungs.  I was thrilled and so was Lee.

The results also showed lots of infection and food induced pneumonia.  What that means is food particles are getting into my new lungs and causing infection and ultimately pneumonia.  We needed to find out if the food was being aspirated or refluxed so more tests. 

Lee got to watch the FEES study that determines if I'm aspirating food into my lungs.  It's a really interesting test...they run a camera probe down your throat so that the camera is sitting right above the vocal cords and trachea.  Then they feed me food dyed green and watch as I swallow the food.  If I'm swallowing correctly, none of the green food or green liquid end up in or near the vocals or trachea.  If the green does go in the trachea then it likely would end up in my brand new lungs.  That wouldn't be good!  Lucky for me all the green food and liquid went down the correct tubes and I passed the study with flying colors :-)

So now, the docs will be looking to see if I'm refluxing the food up into my new lungs from my stomach.  If it's reflux then I'll have a simple surgery called Nissen fundoplication - which we all refer to as a stomach wrap.  If I need to have one done, I'll go into more detail. 

I know I've spent a lot of time talking about food in the lungs but this is one of the most common and serious things that can happen to a transplant patient.  Food just doesn't belong in lungs and because it's foreign to the lungs, it causes infection and we can take it from there... We need to protect our new set of lungs as best we can and by ensuring food stays out, we can eliminate a whole host of problems!

Back to Thursday...the docs already had me on the correct drugs to combat the pneumonia and infection so my course of treatment was to continue the drugs and get stronger.  Did I mention that I was back on oxygen?  Oh yeah...Wednesday a.m. (around 4:00), the nurse came in to check my vital signs.  I'd been sleeping and when she woke me up I felt just like I had - cruddy!  My vitals showed my temp at 102.5 and my O2 number at 80%. It took her and I about 40 minutes of breathing oxygen to get my O2 level to an 'acceptable' level.  Since that point they had me on oxygen.

The docs and nurses wanted me to keep my strength up so they encouraged me to walk laps around 3100 as much as I could.  This is the same place I was after surgery and - if you recall - I was able to walk 38 laps!  Well on Thursday I wasn't able to walk one lap without being totally out of breath and really weak!  That probably freaked me out the most!  I've always felt good about my ability to walk and 3/4 of a lap was just not cutting it!!!  Everyone kept saying it was the pneumonia and my strength would come back soon.  I tried walking with a walker and was able to make 2 laps.  Thursday was not an encouraging day for me! :-(

Friday came and I had an x-ray and then they sent me for an ultra-sound of my upper arm where my PICC line is.  They did this to make sure all was well with the PICC and the course it was taking through my body.  I'm sure you've all figured out that if it's weird or not expected then it must be my body :-)  During the ultra-sound they found a blood clot in my neck!  So now I'm on Lovinox (blood thinner) shots in my stomach for the next six weeks or so.  The shot itself really isn't painful...it's the medication.  Around 3 seconds after I shoot the Lovinox in my stomach then it starts to burn for around 30 seconds to a minute.  Fun Fun Fun!  By the way, the PICC line was fine :-)

The x-ray I had showed edema (fluid) on both my lungs.  That's a really good reason I was so short of breath.  The edema puts pressure on the lungs and doesn't allow them to expand to get air.  To get rid of the edema they put me on more IV lasix.  I have to say it worked!  By Saturday I think I eliminated all the fluid from the edema and more! 

Because there aren't many tests run in the hospital on the weekends our game plan has been for me to "rest" on Saturday and today and Monday we would evaluate what needed to be done.

Here it is Sunday and I was finally able to come off of O2 yesterday afternoon and they have completed one of the anti-biotics.  I'm now able to walk 4 - 5 laps which I know isn't much but it's better than when I started!  I can take better breaths and I think when they do another chest x-ray the edema should be gone.

I really don't know what the docs will finally decide to do on Monday so I guess that will have to be another blog.

I'm sorry if this blog is confusing or convoluted.  I was trying to bring you up to speed on a long a tiring week!

Love to all and Happy Birthday to Ronda!!

Lee, Wendy and Missy

Tuesday, September 14, 2010

Still in Hospital and more tidbits of info!

Hi all.
It's the 14th of September (Tuesday a.m. if that's too hard to calculate this early in the morning :-) )and I'm still in the hospital.  I've lost the bet I had with Lee about discharge.  I said I'd be out today and he said Friday the 17th.  Wow!  I don't think I mind losing my part of the bet but I hope he's wrong too and I'm home way before Friday!!!

I am still hooked up to my chest tube and the fluid (or as I call it - pond scum) is flowing into a plastic box that measures how many units are coming out.  Saturday through Sunday afternoon produced 210 units of fluid.  They said they will be happy when I am producing around 20 - 25 units in that same period of time.  Well that's a big difference :-(

I asked why I'm producing all this fluid and the explanation was:
  • Everyone has some fluid in their pleural area
  • It helps lubricate the lungs as they expand and contract in the cavity
  • When there is infection or inflammation present, the cells produce more fluid to protect the area.
  • I developed a fungus - and no one has a clue why except these appear frequently after transplant
  • The fungus irritated the lining of the pleural area so the lining cells kept producing more and more fluid to protect against the fungus.
  • The extra fluid didn't help get rid of the fungus.  Instead, all that fluid build up was now pressing into my new lungs and not allowing me to get good breaths because my lungs can't expand or contract from the pressure.
With that non-medical explanation, I found that basically the only way the fluid will stop producing (and it's still going strong (another 100 units in 14 hours!) more fluid is to eliminate the fungus.  That way the cells won't have a reason to keep making more of the protective pleural fluid.

Well, here it is Tuesday (I know it's really early!) and the fungus is still in the fluid - thus my loving nickname of Pond Scum!

That was problem number one....

Second problem was the biopsy results from the bronch.  It came back showing that mild rejection.  By itself that would not usually merit a trip to the hospital but combined with the other stuff going on the docs thought it would be smart to deal with it in-patient also.

Since I arrived on Friday they have been giving me large IV doses of a drug called Solumedrol.  My explanation of Solumedrol is that it makes Prednisone look like baby aspirin!  It's much stronger than Prednisone and its side affects are much stronger also!  I am wired for sound!!!  That's the major side affect.  Maybe that's why they won't let patients administer Solumedrol from home...

The rejection is partly showing up in my body as lower oxygen saturation numbers (93-96 percent vs. the 98 percent I had right after surgery).  The other symptom is shortness of breath.  It is really noticeable because I am getting out of breath with very little exertion.  That is not the same as when I was walking 38 laps in the step down!  To be honest, I really don't even know how they are treating the rejection unless some of the drugs they are giving me for other things are supposed to be treating this too!

On a good note...I got my stitches and staples removed yesterday.  One of the Physician's assistants was looking at the incision and asked why the staples weren't out.  She said if she could get the doc's permission she'd take them out yesterday.  When I ran into her later in the day and asked if she got the OK, Lee (her name) said she never heard back from the doc.  Lee asked one of the transplant coordinators who was standing there if she thought the staples should come out.  Emily (Trans Coor) calculated the weeks post transplant and said absolutely yes!  Management decision was made and all the staples and stitches were out within an hour.  The three of us (Lee, Lee and me) tried to calculate the number of total stitches I have in my body as a result of this surgery.  Remember that almost all of my stitches are internal - along with the wire that is tying my rib cage together! 

I might have more stitches that the average patient because of my 'designer lungs'.  Dr. Lin needed to cut the donor lungs down to fit my chest cavity.  That resulted in more stitches!  Then there are stitches binding the lungs to my airway.  Then there are the stitches that close up the chest cavity that was opened during surgery.  And of course there are all of the miscellaneous stitches that Heaven only knows why they were done!

All told, we were estimating at well over 1,000 stitches but we'll have a better idea after talking with the surgeon.  I'll update you on our revised number when I get it!

To round things up....the doc wants me on a few more days of Solumedrol and I have to keep taking the fungal medicines until the fluid is clear.  I think we are looking at a Wednesday or Thursday discharge.  Now I have not decent reason for picking those days except it means I won't be discharged on Friday like Lee's wager stated :-)  I'll let everyone know the real discharge day when it arrives!!!

Take care and hugs to all!
Lee, Wendy and Missy

Friday, September 10, 2010

More fun!

Another fun filled birthday!  I'm in the hospital for a little "repair" work. 

As I said earlier if things didn't change I'd be back in and they didn't change!  My biopsy results from the bronch showed mild rejection - better than severe!  The CT scans I had done showed more fluid - after it was drained off on Friday.

So today I came into the hospital and the first thing they did was put in a chest tube.  Let me say...it's way better to wake up from an operation with the tubes already in your chest than to experience inserting the tubes while you are awake!!!!  That last part was REALLY painful.  But...it's done.  The doc that put in the chest tube usually doesn't do it anymore.  He's like the top guy and he teaches others.  I liked him a lot.  He talked to me all through the procedure and let me know how things were going and how we were progressing.  No surprises from him.

Then they brought me to a room up here on 7800 where I'll be until discharge.  My doc wants to try and figure out a couple of different things.  First...can they find an "outside" reason for the rejection?  To that end they will be doing lots of stomach and reflux type tests to see if I'm aspirating into my new lungs.  That can cause rejection.

They will also be giving me some stronger IV meds that they don't want to administer at home.  All in all this isn't the way I'd choose to spend my b-day but, at this point in my life, my lungs come first!  That's why we are here at Duke - for my lungs.  These docs are the best in their field and they know what they are doing.  If they say I need to be in the hospital then away we go :-)

We'll keep you posted on any other weird tests they might do or if we find any answers.

Hope everyone has a great weekend!

Love,
Lee, Wendy and Missy

Wednesday, September 8, 2010

Well...what a clinic appt!

To say the least, Lee and I are a little overwhelmed after our clinic appointment this afternoon. 

In a nutshell, the fluid they drew out from around my lungs contained a fungus.  Oh joy!  That means I need another CT scan (8:00 a.m. tomorrow) to see if there is more fluid that isn't being picked up on the x-ray.  Then I need to start daily IV treatments of Heaven only knows what medicine...it comes from oncology.  That's scheduled for 7:45 a.m. tomorrow so it will be a little tight getting to the appointments but they said to keep them both and make them both! :-)  After tomorrow they will continue the IV at home.  That means Lee and I will be doing it!  That's OK, we're pretty good at IVs by now :-)

If my bronch results come back with anything else (rejection, infection, or more fungus) - or the CT scan shows more fluid - then it's a one-way trip to the hospital to "fix" me.  Oh, did I mention that they now think my incision might be infected.  My gosh!  I've kept it clean and dry but they said it could be from the inside.

The doc also put me on another oral fungus medicine this afternoon.  He said the drug has an interaction with my Cyclosporine (my major anti-rejection medication).  Apparently the drug turns Cyclosporine into some kind of "super drug" so I need to cut back my dosage by more than half.  It makes me a little nervous to cut my anti-rejection meds but the doc was really adamant so I go with him!

I know this is short but I wanted to let you all know what was going on at this point in time.  As I get more info I pass it along.

Take care and love to all,

Lee, Wendy and Missy

Tuesday, September 7, 2010

Bronch today

I had a bronchoscopy (bronch) this morning.  It went much smoother than the one they did while I was still in the hospital.  A bronch is where they send tubes down your throat into your airways into your lungs to look around, take samples etc.  They have to spray lots of numbing stuff in your throat before they can do this.  They also drug me up with fentenyl and verced (no idea if either of those are spelled right but they really work!).

The hospital bronch didn't start off well because the intern came in and wanted to start spraying the numbing stuff down my throat.  Well...that stuff makes you gag.  I asked her to please stop but she kept on spraying.  Lesson learned...too much spray causes me to vomit on the intern!  They stopped for a minute after that :-) 

I told the nurses about that episode and asked if they could please drug me a little before they started spraying the numbing stuff.  When the nurses told the doc their suggestion of drugs before vomit he was all for it (he was dressed very nicely).  So they gave me just enough drugs that I was totally relaxed and able to work with the doc in numbing my throat.  Then they shot more drugs in me and next thing I knew we were done!

The doc talked to Lee and said that everything looked great.  He didn't see any signs of infection or rejection or fungus.  Those are the three things that the docs are always looking for.  During the bronch, they spray some water in my lungs and then suck it out and test the water for the three problems.  They also take a couple of little chunks for biopsy.  I'll have those results in a few days.

After the bronch Lee and I went to get me food and then back to the apt for a nap - the drugs hang around for a while :-)  My next bronch is scheduled at the three month mark - unless they want to do one in between.

I have another clinic appointment in the morning.  I'm really ready to get my staples and stitches out...I hope tomorrow is the day!  I have a list of questions for the doctor and once I've seen him, I'll let you know his answers.  I'm seeing Dr. Steele tomorrow (I saw Dr. Snyder last week).  I hopefully will see Dr. Zaas next week but he's in London this week so Dr. Steele it is.

Take care everyone and give yourselves a hug for me!

Love,
Lee, Wendy and Missy

Sunday, September 5, 2010

Tweeking things a little

Hi all.

Well, I've been home two weeks now and it's been pretty uneventful.  Lee and I are learning how to run our own little pharmacy here in the kitchen!  It's pretty nuts all the drugs I need to take but from what I hear, some of these drugs should be cut back or eliminated at some point!  Yay for that!

I'm still diabetic and having to give myself baseline insulin shots at breakfast, lunch and dinner.  None at bedtime which I guess is a small victory we can be happy with.  Hopefully the diabetes could go away also when some of these heavy duty drugs are cut back.  We can hope!

I've been into clinic a few extra times because these guys take absolutely nothing for chance.  I had a pain so I ended up with a chest x-ray and a VQ scan (looking for blood clot).  They found fluid on the bottom of my lungs (mostly left lung) so the next day I had that fluid 'drawn' off.  Not vey pleasant but at least they did it from the back so I didn't see that six foot needle (jk).  They numb you then stick in the needle and then stick in a small catheter and pull out the needle.  The fluid then drains out.  There wasn't a huge amount of fluid but they want to test it for infection.

The group is as paranoid about infection as I am!  Infection, left untreated, is something that can kill you when your body is so immunocompromised!  It can cause rejection and that is not something we want!

I have my bronchoscopy on Tuesday morning.  This is my second one (first in hospital) and there will be many more.  They will be looking for infection, rejection, fungus or anything else that might jump up and rear it's ugly head!!!  Hopefully none will be found but, for the first year, we are all prepared for a trip or two to the hospital if needed.  I do have a friend who is six months out and hasn't had any rejection!  Yay for Susan.  I hope I do as well as she is.  Susan is really strong.  But...don't confuse strength with no rejection.  Someone can be super strong and super dedicated to taking care of themselves and it can still pop up...very strange.

Now on to something really fun...
My friends Polly and Linda came out to see Lee and I this last week.  They came for four nights and stayed in one of the corporate apts at our complex.  We had so much fun!  We went to local restaurants that they don't offer in CA and the food was great.  Some of these places made us hesitate just a little when we drove up but the food was great.  Hog Heaven BBQ, Five Guys Burgers, Waffle House (Stephen-- they loved it!).  Then yesterday I was too pooped to join them on their site seeing adventures so Lee and I stayed home and they drove to the beach.  The pics were gorgeous and they ate at Olde Salty's (I don't think there's one of those in CA either :-)

We didn't get any weather from Earl - sunshine and beautiful here - and the beach they went to on Saturday looked just fine too.

Well that's it so far.  I'm going to try and make it to church today - hopefully I'll still have it in me by 10:45 :-)

Happy Labor Day to everyone and love and hugs,

Lee, Wendy and Missy

Tuesday, August 31, 2010

Mama's got a new set of lungs!!!

Hi everyone!  I bet you were wondering if I'd ever be blogging again.  Well ... so was I :-)

Amy did such a great job keeping things updated that I didn't think my input was all that necessary!  It actually took me until now to sit down at the computer and start typing.  I keep telling people that 'I'm fine' but that just seems so minimal compared to what I really am!!!

I am a walking miracle!!!!  I can breathe!  I can breathe as well as most people!  My heart rate isn't sitting at 125...it's hanging out around 75 - 80.  My pain decreases for the most part every day. 

I had my first clinic visit today (post transplant).  It was supposed to be tomorrow but I was having some pain when I was taking deep breaths so they brought me in a day early.

My pulmonary function test was amazing!!!!  I showed an improvement of 181 percent over my last PFT (pre-transplant).  And these results are when it was a little painful to take a deep breath!  I am equal to around 75 percent of the other people out there breathing!!!!  Yay!

My blood tests were fine and my x-ray showed possible fluid buildup in the bottom corners of the lungs.  So...of course...Lee and I are off to Duke North for a CT scan tonight.  If it shows fluid then they will drain the fluid and / or put in another chest tube.  I'm voting for there not being any fluid! 

These little situations are to be expected and it doesn't mean they need to put me back in the hospital.  If they were to drain the fluid they can see if there is any infection there.  That would be jumped on right away.

I did find out today that while my antibodies were a go with this donor, apparently I had a positive cross match which meant after all was hooked back up, my cells started fighting with my new lung cells!  That's why I had so many doses of plasmapheresis.  I'm glad I was out of it early on so I wouldn't be worrying about that too!  I guess that's OK now because they stopped the pheresis a couple of weeks ago.

Yesterday I went to rehab and walked without my walker, did the bikes for 15 minutes and worked on weights for lower body...also did the floor class.  It felt good!

I'll keep everyone posted on the CT scan and whatever else they decide to do.

Thanks so much from the very bottom of my heart for your love, support and prayers.  Each and every one is appreciated and needed!

Love to all,

Lee, Wendy and Missy

Saturday, August 28, 2010

Doing Well

I went to spend part of the week with Mom and Lee after she got home Monday. Mom and Lee are doing well. There is definitely a lot to remember after coming home from a lung transplant.

Oh my gosh, is there a lot of medicine! Mom's pill box for the week is about the size of a sheet of paper. It took them 2 1/2 hours to get it all set up for the first week and after seeing all that medicine, I can DEFINITELY see why! Mom takes medicine every day at 8 am, 10 am, 12 pm, 5 pm and 10 pm plus she will continue having IVIG once a week with an in-home nurse. I'm sure it will all become routine after a while, but for now it will take some serious adjusting. I think by the time I left Thursday I had finally gotten Mom's blackberry to ring at the right times every day.

This week was not the 'typical week' as Mom had quite a few appointments, which I'm sure will taper over time. I got to go with her to her swallow test Thursday and that was SO cool (but also pretty disgusting, too)! They put a camera up her nose and watch her drink and eat various things that are dyed green. She liked the Little Debbie Oatmeal cookie, but is SO not a fan of YooHoo. The Speech Language Pathologist thought it all looked good, but last I heard Mom was waiting on final sign off from her doctor to start drinking thin liquids and regular food. I took a lot of pictures, but did not have a chance to upload them before leaving for my business trip today. If Mom says it's okay (they're gross) I will post them next week :).

Well, I am on the plane to San Diego (got to love in-flight Internet...or hate it if you are working on the plane like I am except this quick break for this post :) ) for a work conference until Wednesday. On Wednesday, two of mom's friends from CA, Linda and Polly, are coming to visit and I know they are really looking forward to that. Probably because they are pretty sure they won't be as drill searganty as me! I am hoping to go see them all Friday evening after work, too.

It's CRAZY to me that by the time I see Mom next she will be four weeks post-transplant. We have all been so blessed by how smooth this has gone and how great Mom is doing.

Till next time - love to you all!

Amy

Tuesday, August 24, 2010

Mom is home!

Hi everyone,
Mom is home and doing well. Her pain level is so much better! Tomorrow will be the first day back to rehab, which I know will be great. Thanks for your continued thoughts and prayers.
Love,
amy

Saturday, August 21, 2010

We're at Day 15 Now!

Hi everyone,
I am sitting here with mom at the hospital today. She is doing really great and wanted me to make sure I let all of you know that she has been upgraded from chopped food to mechanical soft food. For those of us that are not nurses - that just means soft food. This will definitely be a nice change.

Before she can go home, they still need to remove the rest of her chest tubes. She is doing fabulous on her walking - she walked 38 laps yesterday, which is more than 2 miles. Mom can't even remember the last time she walked 2 miles. It looks like she might be able to go home next week. They will do another swallow test on Monday to see if she can graduate to drinking thin liquids. Until then she is using a thickener before drinking anything. She just had a 'thickened' diet coke with lunch. She has this process down pat now!

I know I haven't been providing many updates, but things really aren't changing, which is actually a great thing!

Will let you know when she comes home.

Hugs,
Amy

Tuesday, August 17, 2010

Day 4 - Day 10

I have been a terrible blogger for mom. Things have been very busy around here.

Late on Day 4 (Monday, August 9, 2010) Mom was moved from the ICU to the Step Down Unit. This is still in the cardiothoracic unit, but no longer the ICU. On Day they gave Mom her swallow test. She was most anxious for this test and the results so that she could hopefully drink or eat. At this point, the only thing she had received by mouth was a "mouth swab." A mouth swab is basically a VERY, VERY small sponge on a stick that is dipped in water. She could only have those once an hour at most, which was not nearly enough! I think Mom may deprive Lee and I from liquids after she is home from the hospital to help us understand what she was going through. Just kidding...we hope! :) Two of Mom's chest tubes were removed on Monday, which they said would help with her pain levels. Mom had her fourth pheresis treatment Monday morning.

Day 5 (Tuesday, August 10, 2010) - Mom had her final round of pheresis Tuesday morning. Mom found out she passed the swallow test and was approved for thick liquids and pureed foods (Read: crazy thick, gelatin-like juice and blended food-like items). Still no thin liquids. Mom was very happy to receive the juice, but DOES NOT like the Dairy Thick drink. I don't think I would like it either. She was able to have yogurt and applesauce, which was quite a highlight.

Day 6 (Wednesday, August 11, 2010) - We thought Mom was doing pretty well with her walking and were impressed with the seven laps she had done so far. At least we were until one of the surgeon team doctors told mom she should be doing walking more by this point and he wanted her to be walking 20 laps by the weekend. We didn't know this. Mom, being Mom, said, "You mean I'm being a slacker?" Dr. H said Yes. Prior to his visit that afternoon, Mom had said she was tired and was going to rest. Not even two minutes after he left, she said okay, let's go walk again and we did two more laps. This was my first walk alone with Mom. We discovered Lee is a much better walker, I kept running into Mom's ankles with her poles. This did not make mom happy! Lee stayed the night with Mom in the hospital.

Day 7 (Thursday, August 12, 2010) - I had to go to work Thursday afternoon, so I stayed the night with a friend Wednesday night in Durham so I could be there by 8 am. Dr. H had already visited mom that morning and they disagreed with her walking goal for the day. He said 12 laps, she said 10. She had already walked 4 laps by the time I got there, she and I walked another 2 with the PTA. He is super nice and had walked with Mom for the last few days. I did a little bit better with the pole that day. That night I found out that Mom exceeded both her goal and Dr. H's goal and walked 16 laps Thursday! The speech pathologist also came in while I was there Thursday morning and approved mom for chopped foods.

Day 8 (Friday, August 13, 2010) and Day 9 (Saturday, August 14, 2010) - I didn't get to see Mom Friday or Saturday because of work and my 30th birthday party (which went on without mom at her insistence!). She walked 20 laps both days, which is just awesome! She had her epidural removed as well, which meant no more walking with the pole. They removed more chest tubes Friday, which is great, but Mom has an air leak from this, so she has puffed up quite a bit and sounds like she sucked on a lot of helium. This is fairly common and the doctors are not concerned about this, they cannot remove any more tubes until it goes away though.

Day 10 (Sunday, August 15, 2010) - Michael and I visited Mom Sunday afternoon, we walked two laps together (I was a much better helper since the pole is gone!) The pain medicine definitely makes Mom pretty sleepy, but we had a nice visit. I showed her all 200 photos from my party. We definitely missed Mom and Lee Saturday, but the best birthday present I could have asked for is Mom receiving her lung transplant.

If you aren't an organ donor already, please sign up today. We are so fortunate that Mom's life has literally been saved because someone signed up to be an organ donor.

Thank you again to all of you for your love and support.

Love,
Amy

Monday, August 9, 2010

Day 3

Well, we've made it to Day 3 post transplant. Mom is doing very well. She has been walking three times a day like she is supposed to. Yesterday (Day 2) she even walked more than one lap in one walk. She has to be able to walk 20 laps (one mile) in one day before she is allowed to go home. She is having plasmapheresis everyday so far to make sure she doesn't have any antibody issues.

We are very pleased with her progress. When I have something new to update, I will make sure to update the blog for all of you. Thank you again for your continuing support and encouragement, Lee and I really appreciate it. Mom is still in the ICU, so she can't have any calls, deliveries, etc. Lee and I are not able to even see her for very long each day. We will make sure to let you all know as soon as she is able to receive anything.

Thanks,
Amy

Saturday, August 7, 2010

Update on Mom's Transplant

We have finally reached the the Double Lung Transplant part of mom's journey. It feels like it took forever, but it was so worth the wait. Mom and Lee received a call around 9:15 Thursday night that they found a perfect match for her lungs and they needed to head over to the hospital. The surgeon had not looked at the lungs yet, but if they were viable, they would take her in for surgery. We thought she would receive that call between 12:30 am and 1:30 am. Well that time came and went. Around 2:15 they said it would be another couple hours. At 4:15 am Mom received the call that it was a go. She called me and said we have lift off! I was so asleep that I had to say...What does that mean? She said it was a go!

Then next step in our journey began. Mom and Lee waited for her to be taken to surgery. Michael and I raced out of the house to head over to Duke. We did not get to see Mom before surgery, but knew that was likely. They took her back around 6 am and we received notification that they started the surgery around 7:45 am. It was a VERY long day! A little after 4 the surgeon came out to see us. He said the surgery went well and they were good lungs. He said it was a one in a thousand opportunity to find a match for her.

We got to see her around 5:30 and she was still under anesthesia, but everyone said she was doing well. I saw her again around 6:30 and Lee and their Pastor, Tom, got to see her around 8 pm. It was hard to leave without her being awake. I hadn't realized that she wouldn't be awake when we saw her, but this is normal.

I called for an update before going to bed and she had started to open her eyes, which was great to hear. When I arrived this morning she was still on the ventilator, but was alert and smiling. They did plasmapheresis again today and after finishing that, they removed the tube. I saw mom for the first time in 2 years without oxygen. So amazing!

She is now talking and smiling. She truly looks great, she has more color in her cheeks. The Associate Pastor, Tim, came to see her and said it best - you are the only person in the ICU with this big smile! It is so true, she is so excited to have new lungs and is very happy. We still have a long road ahead in her recovery, but every step of the way is worth it.

In the ICU she has her own personal nurse, they have all been great and are super informative. I will post some pictures soon.

Thank you to everyone for your continued thoughts, prayers, calls, texts and emails. I will try to respond to all of you, but I'm sorry if I don't get back to you right away.

Love,
Amy

Wednesday, July 28, 2010

Full Week!

Hi all.

Well, three cheers that I've managed to make it thru two weekends without going to the ER or being hospitalized!  Yay!!!

I have been on IV antibiotics using a portable IV pump.  It was very cool.  We were able to go anywhere with it.  Here's a couple of pictures of my IV stuff...


This is the pump.  It's really handy small and it fits in my purse.  The big syringe coming out the end is my medicine.  It takes around 30 minutes for the medicine to pump into my PICC line.

The picture below shows the line that goes from my arm and hooks into the medicine line.














Today was the last dose.  That is such a great thing because getting up at 4:00 a.m. to take the medicine out of the fridge is not fun!  Lee was a big help with the 'every six hours' thing.  I'd go to sleep around 8:30 at night and he would give me my 11:00 p.m. dose (while I slept through it).  I then would have had enough sleep to get up for the 4:00 / 5:00 a.m. dose.  To bad we didn't figure that out right in the beginning :-)

Here's some info everyone's probably interested in...

Bummer...my antibodies are coming back :-(  I saw Dr. Zaas on Monday and he told me.  Now the question is...how high are the levels.  He said that they might be coming back but not at the same level so it might actually be better than it was.  The HLA lab has developed a new - and fancier - way of testing for the antibodies and it gives a much more accurate reading.  The transplant team seems pleased with this so I guess I am too :-)  They drew more blood tests on Monday so I'll keep you posted on what I find out.

Another bummer...we had another dry run yesterday but it was the most hopeful one yet!!!  The on-call coordinator called and told me they had a donor and they had run a cross-match of my blood with their blood and it came back negative!!! - That's what we want!  Cindy said they had to still look at the lungs but if they were OK they would take me straight into the operating room.  Wow!  That was a first for us...it's usually be a 'maybe' thing.

Lee, Amy and I waited for about four hours and became more hopeful each hour.  Then the call came...sorry but the lungs weren't viable :-(  We were all so sad.  This one was so close!  Here are the three of us..

Here's me trying to pretend that I'm not starving!  Of course we got the call at 10:00 a.m. and I had last eaten at 6:45 a.m. 
Here's Amy coming in the door...
 
And here's Lee -- ignoring me when I whine about food :-)
Maybe next time will be the real deal...we've sure had enough practice runs!

These next pictures show all the medication I'm now on since I last got sick.  The next picture shows Lee trying to fill my medication case.  Post transplant Lee or Amy will be in charge of filling up my med case so he thought he needed practice...I think he's right :-)

This last photo shows you what great gardeners we are!!! 
Our pathetic little tomato plant actually gave us some tomatoes!  We were amazed!

I hope everyone has a great evening!

Love,
Lee, Wendy and Missy

Thursday, July 15, 2010

It's been tough!

I did go home on the 8th however during the night on the 9th things went to Hell in a Hand basket!!!

Friday, the 9th, was a great day if you weighed it against the fact that I just got discharged from the hospital. I took it easy and Amy came to visit after work. She took off early so that we could spend time together. She, Lee and I talked and had a nice time.  She made our dinner around 7:30. We all ate and Amy headed home. All was well and we had a good time :-)

Around 9:00 p.m. I told Lee I needed to go to bed because I didn't feel good all of a sudden. That was the beginning. Within minutes I was completely congested and felt super weak and cruddy. Lee brought my Nebulizer machine to the bedroom because I was too weak to walk to it! From 9:00 p.m. until 7:00 a.m. Saturday, Lee set up breathing treatments for me with my nebulizer. He was also bringing me water and checking my temperature all night long. I just didn’t know what was wrong with me and I felt awful!  At around 7:30 a.m. Lee took my temperature again…105.3° It was time to call the transplant coordinator on call. I was too sick so Lee placed the call and they directed us to the ER.  I had been propped up on my wedge having very coherent conversations with imaginary videos.  I would see a clip of a video - maybe it had Lee in it but maybe not!  I had little shorts of everyone I knew and they were doing things and looking at me and I was talking with them.  It took us  around two hours to get me out of bed, dressed (in pajamas), and on the road to the hospital. I was just so weak and a little weird :-)

We made it to the hospital and I just must have looked waaaay worse than I knew!  Right into the resuscitation room in their Trauma Center we went! Wow that’s a big room and it fits a lot of people (including my imaginary friends I brought from home)!!! No one at that time knew what was wrong with me – they just knew I was really sick. They were all sort of yelling at each other and asking me about drug allergies and it was weird. I was a little scared because I’d never reached this level of “sick” before and we were all in uncharted waters.  I remember it also being a little annoying because I couldn't continue my own conversations - they kept interrupting to ask me if I knew.  Oh heck some I did and some I didn't but I didn't really care because I was busy with my "friends".   This was way more than a “flare up”! Simultaneously they were drawing blood, taking X-rays, asking Lee questions (still couldn’t talk), and prodding and poking.

X-rays came back (within a few minutes) showing pneumonia. I had left the hospital 36 hours earlier and felt fine and now I had pneumonia?! I was too sick to care! It was no big deal to me!  I think it was to Lee though!  He didn't have any other friends to talk to :-)

One of the doctors said they were going to start me on Zoysn and some other drug – neither of which I’d ever had. My fever was lower but still spiking to around 103° on occasion. My head was killing me and they offered me good drugs but my stupid allergies kept me just on Tylenol :-)

They were going to admit me but they wanted me on the 7800 floor so I had to stay in Trauma until they had a bed. That took several hours and lots of doctor drive-bys and an extra IV med treatment. Lee went home after ten hours so that he could take care of Missy. He knew I was in good hands so it was now time make sure our youngest baby was OK! I was finally put in a room up on 7800 and things just got muddier! Looking back on that afternoon/evening I can see a little clearer why the docs and nurses said I gave them a good scare!

I got settled in a bed and I think Dr. Zaas came by that evening. Either that or I was still hallucinating!  They had me hooked up to IV meds and telemetry and sats and BP monitors etc. Did I mention that my blood pressure went down to 70 over 44 in the ER. That too got their attention. It was just my day for attention .  I decided I’d go to sleep because all day I remember asking Lee a gazillion times if it was night time. Don’t know why that was so important to me but I started asking around 9:00 a.m.

I went to sleep and at some point a few hours later I was back awake and a little chilly. All of a sudden the chilly went to freezing and my whole body was shaking uncontrollably and I was having trouble breathing! Oh joy…will the fun never stop??? I couldn’t get to the nurses call light but my telemetry must have set off some kind of warning because a nurse came in. She was trying to help me while she was checking my sats. I remember hearing her stick her head out the door and yell that my sats were dropping. Let me tell you…in a pulmonary unit when someone blurts out something about dropping sats you get a whole bunch of people in your room. My nurse was applying hot packs to my body and rubbing my skin to try and warm it up while several others were adjusting oxygen and checking blood pressure. My O2 leveled out at 74 percent…not exactly what any of us would want but at least it stopped dropping! Finally the heat packs etc. kicked in and I stopped shaking and my sats came back up. That episode was followed later in the night with a fever. My body was fluctuating between burning up and freezing. Wild ride!!

The next morning I woke up feeling about 5000 times better. I could talk! I was still super weak and pretty short of breath but since I’d never had pneumonia before I figured that seemed reasonable. I was sitting in bed when one of the TX docs came in to say I had a gram-negative bacterial infection in my bloodstream. She said my pheresis catheter was coming out that very day. Apparently my cath could have been the culprit in getting this stuff into my bloodstream. The good thing about my infection is that I was already on the drugs they would have administered so I was ahead of the game on this one.

By Monday the temperature swings had leveled out and they had finally figured out the trick in keeping my sats up.  For breathing, I had one contraption I used while sleeping, another for walking (after a fashion), and another one for when I was sitting in bed or a chair.  It was all a little cumbersome but it worked.   I then spent Monday and Tuesday trying to get better and a little bit stronger so I could go home. 

Lots of people don't understand why they wouldn't keep me until I was totally well.  The answer is really simple  - infection.  Hospitals, like any place where there are a lot of people, have germs.  They clean and sanitize constantly but the little buggers will still get through.  When you're someone like me who has no immune system left then these bugs jump on me like white on rice!  I am so susceptible to everything that I have to be really conscious of what I'm doing and who I'm around.

To try and build up my immune system, they were giving me IVIG treatments to beef it up a little.  It's supposed to give me good stuff but it tells my body that I don't need any of my bad antibodies made...hope it works that way!

Now I'm home with my portable IV pump and I feel like a certified medical technician.  I have my handy partner Lee the Line Man who helps me with my IV lines.  Between the two of us we are up every 5 hours to bring my meds to room temperture (takes 1 hour) and then flush my line with saline then IV the meds to me by way of this little pump then flush again with saline then finish with a heperin flush.  We repeat this every 6 hours.  We'll get the hang of it.

Very long story short....I was sick and now I'm getting better.  I hope I won't be back in before transplant but you just never know.

Love to all,
Lee, Wendy and Missy

Thursday, July 8, 2010

Heading home from the hospital

Well I'm finally on my way home.  I've been in the hospital since last Friday.  I was admitted for a couple of different things...shortness of breath and weakness.  At first we all thought the weakness was due to my flareup but we have since figured out that most of the weakness is due to the drugs I was given and the pheresis treatments.

Apparently I have a bit of neuropathy going on in my left left/foot and in my right arm/hand.  They did a nerve conduction test and an EMG (a muscle test that's not all that comfortable).  The tests showed some myopathy but they didn't know yet if it was getting better or worse.  They want to repeat the test in a few weeks and have me get a brain scan (I'd finally know if I had one!!!).  The tx team doc said that as long as I was comfortable with it I'd get discharged today and see Dr. Zaas next Wednesday.  At that point they will decide if I should have a brain scan or not.  They would just do it out-patient.

I still feel weak as can be but I decided this morning that I have my baseline set too high.  I keep pushing myself to reach a level of ability that I had several months ago.  Then I get frustrated with myself that I can't achieve it! 

Three months ago...I didn't use my walker; I didn't stop at each doorway to catch my breath before I kept moving; I didn't get worn out chewing steak or chicken or other "firmer" foods; I could talk on the telephone without having to hang up because I didn't have any breath left; I had enough strength to pick up a jar of spaghetti sauce; I could reach down and pick things up off the floor; etc.

None of that is possible now so logic says that I have my new baseline.  By knowing this I can measure progress and slippage.  I won't get frustrated if I dip a little because it's from my new baseline - not the old!

Lee was so awesome this week!  He came every day and brought me whatever I needed and didn't wake me up when he came if I was sleeping.  One day he brought Dominoes to play and another day he brought playing cards.  Both were easy to use on my table tray.  They were really fun diversions from the rest of the day...you gotta love him!  He also found sugar-free wafer cookies that are really good.  I'm still struggling with the diabetes and it's gotten more active with the steroids.

Other than medical stuff, we've been developing our "Things to do Post-Transplant" list.  There are so many things that I can't do now due to breathing issues.  Number One on my list is Disneyworld the first week in December.  We've never been to Disneyworld and we've never been to Disneyland when it's decorated for Christmas.  That will be soooo fun.  Of course that trip will probably bankrupt us (but it's so important that the cost isn't as important as it should be).  We had better to plan the other activities so they don't cost much :-)  Going back to CA for Christmas this year is a really big want for both of us.  We're hoping we can make it!!!!

I hope everyone is having a super summer.  We really are having a good time here even though it sounds sort of "sick".  We've made friends through the church we attend and a couple in the apartment.  Lee and I are learning to appreciate the very little things...like just sitting next to each other holding hands and watching House reruns from our DVR or sitting across from each other while we each play Sudoku. 

Life really is good even when you can't breathe!!!

We love all of you and wish you a great weekend,

Lee, Wendy and Missy

Saturday, July 3, 2010

The Good, The Bad and The Fabulous

Happy 4th of July weekend to everyone!!!

The first of July brought a little bit of everything...
The Good -- I finished my last pheresis treatment yesterday.  Yay!  :-)
The Bad --    I'm back in the hospital for another flare up.  Boo! :-(
The Fabulous --  It looks like the treatment regimin is WORKING.  Yay! Yay! Yay!  Praise the Lord!

Even though it has been remarkably taxing to go through this treatment, it was well worth it to have some results.  I got an e-mail yesterday from Lauren that read:

"Just received this from Dongfeng. Yeah!!!! 'Good news: a significant reduction of antibodies on serum dated 6/30/10 was observed. For detailed results please review the reports in eBrowser. Please send a new serum sample to confirm'

Lauren was so excited that she called Dr. Zaas with the news in case he hadn't opened his e-mails.  Dr. Zaas was very happy.  I know that he, along with the whole team, are pretty anxious to get me transplanted.  They will run another follow-up blood test this weekend while I'm staying at the Duke University Medical Spa Resort (don't I wish!). 

I'm in the hospital again because of a flare up.  They don't know if it's the result of the pheresis/drugs just taking a toll on my body or if it's something else.  I guess to them it doesn't really matter why...they just want to get me up and back to rehab.  Boy, it always comes around to that one thing - exercise.  I can't tell you how big a difference the working out has made on me.  I know, without a doubt, I'd be much worse were it not for rehab.  I groan to myself sometimes when I just don't want to get going but then when I get there it's fine.  In fact often I feel better after it than before.  Anyone who doesn't have exercise as a basic part of their week should sure give it a try.  It'll make you healthier and stronger...can't beat that!

It appears that I may have a bit of neuropathy going on in my left leg.  That's not too surprising because it is one of the big side effects of the Bortezemib.  Dr. Palmer (tx doc who's on call this weekend) will be putting me on some kind of med for it and hopefully it won't be permanent. 

I don't remember if I mentioned my dropping blood pressure...pheresis can cause your bp to drop so, of course, mine has been!  I sometimes feel like a walking billboard of "if there's a side effect, I'll get it).  Anyway, my bp was down to 77 / 50 last week and yesterday and last night if would drop down to low 80s / 40s.  It seems to come back up for a while and then drops again...makes for interesting walking :-)

They are giving me IV lasix to pull the water off of me.  I can't believe it...I was up all night!  I think they are trying to wring every drop of fluid out of me.  I'm going to look like a prune!  There's an up side and a down side to lasix.  Up side...if I have extra fluid it affects how well I can breathe.  Drain it off and my breathing should get better.  Down side...low fluid levels will drop my blood pressure...like I need that already :-)  The docs explained to me that they prefer better breathing over higher blood pressure so we have it...the lasix wins out!

I met a new person this week in rehab.  She's from Dallas, TX and she has been listed, in Dallas, for three years.  Her tx doctor gave her a brochure from Duke about lung transplants and suggested she consider it.  She, like me, has somewhat high antibodies and Dallas just couldn't handle it.   She came out hear for an evaluation and transferred her listing to Duke.  She was really glad to meet me because she's never met anyone else with high antibodies.  I encouraged her and told her that my rehab buddies with high antibodies responded to the primary treatment and they have been transplanted and are back home already.  I think that made her feel more comfortable.  I sometimes think my new role in life is to keep my spirits up so I can help others keep theirs up!  That's not a bad thing if you think about it.

Well, since I was up most of the night due to the high dose of prednisone they gave me yesterday (100 mg) I'm going to try to take a nap before they give me Solumedrol today.  It's even worse than prednisone!

Take care and give yourself a big hug from us!
Lee, Wendy and Missy

Thursday, July 1, 2010

Coming to the end of Pheresis

I am so glad to be able to type that title!  Pheresis just kicks my butt and when they add the bortezimib...I am wiped out! Dr. Zaas said yesterday that I looked puny.  That really does sum me up!

Yesterday I had a clinic appointment and they did draw blood so I should have my antibody test results by the end of next week.  Wow am I hoping and praying for good results.

The clinic appointment was the normal stuff... blood work, chest x-ray, PFT and ABG.  My PFT (pulm function test) shows I've lost more lung volume. When we came to Duke my FEV1 was 39%.  At the end of January it was 28%.  Yesterday it was 18%.  These are some of the reasons the docs (and Lee and I) are anxious to find lungs!

Actually, I've been sickly lately.  I hate to say I've been sick because I want to kick whatever this is :-)  Dr. Zaas gave me until this Saturday morning to get better.  If not...back to the hospital.  I think both Lee and I could find our way there with our eyes closed...we really will keep them open so Lee isn't added to the patient list!  None of us really know what's going on with me.  My PFT has dropped significantly and I am hugely short of breath (is hugely a word?).  I often need to stop and rest when I'm walking from the bedroom to the kitchen in our apartment.  That's getting really old to me. 

I told Dr. Zaas that I'm not enjoying this one little bit.  He wants me back in rehab as soon as possible - what a surprise :-)  They don't want you away from the gym for any reason except hospitalization.  I've been trying to get to the gym between treatments but some days it just didn't happen.  Today I walked on the track with my walker.  I did 5 laps (1/3 mile) in 20 minutes.  That is an improvement over Tuesday's 4 laps!

Let's move to something more fun -- the sweltering weather.  OMG it has been so stinking hot and humid here and it's affecting Lee even more than me!  A couple of days ago Khara told me to just stay home because it was so awful out.  The transplant coordinators have to walk about 1/2 - 3/4 of a mile from their offices to the Duke Clinic.  It was Khara's turn at clinic and she said she was short of breath from her walk and she doesn't have lung disease!  After about two weeks of these temperatures, it finally rained yesterday morning.  That brought both the humidity and temperatures down - yay!  Four days in the 80s.  We're loving it!

We really are missing our friends and family in CA.  It would be so great if we could make a trip back but right now I can't even consider an airplane and neither of us are up to another cross-country trek!  We'd love for you to come out here!!  I'm sure the weather would improve - didn't you say it got better Vanessa?

Well, all for now.  Safe and Fun 4th to everyone!

Love,
Lee, Wendy and Missy

Tuesday, June 15, 2010

Finally Pheresis!

Today is Tuesday June 15th and I have had my first treatment of pheresis.  The bortezimib is done and the rituximab is almost done...it's been a very long day!!!

I was admitted to the hospital yesterday for this treatment and I thought it would be started yesterday but I guess they wanted to start fresh this morning.  I can understand that since they showed up at 8:30 this morning and I'm still being treated (it's 7:40 p.m.)

So...pheresis is more...and less...than I was expecting.  Phil, The Pheresis Man, arrived at my door with lots of equipment.  He brought blood pressure monitors, and stands for IVs and a huge machine that looked sort of like an sci fi contraption on wheels.  It had a bunch of empty bags hanging down from it.  This is a picture of the machine and Phil during treatment.

This is a "lovely" picture of me with my tubes!  The tube on the far right is my oxygen tube (4L and holding at rest).  The other tubes come from the catheter shown to the left.  It is a good sized tube that they inserted last Wednesday (using really good drugs thank you very much!).  The tube is inserted under the skin on my chest and up until it goes down into my neck...yes, that's as gross as it sounds ;-)

The single tube splits and has an "in" tube and an "out" tube.  This catheter was put in solely for phereses and even though I have this huge thing in my chest, the nurses at the hospital still had to put in another IV for their use - no one messes with pheresis tubing except pheresis people! The wrap around my arm is to monitor my blood pressure.

So my take on Phil's explanation of pheresis is...The big machine sucks in my blood via the "out" tubes.  The blood goes down into a centrifuge and spins it.  The blood is separated by weight...red blood cells against the wall of the centrifuge because they are the heaviest.  Then white cells, then platelets, then plasma.  The plasma is then pulled away and "bagged up" for disposal (it has my nasty antibodies in it!).  Then this yellow stuff called albumin (processed plasma) is mixed back with my blood to replace the plasma that was removed.  The blood is then sucked back into the "in" tube.  It's wrapped around heating coils to warm up and then it enters my body at the catheter site. 

This is a picture of Phil showing Lee the centrifuge in action (there is a glass window to look down into it).  They both thought it was very cool!

A mathmetical calculation determines how much plasma I have in my blood.  It's based on my height, weight, and blood volume.  I had a little over 2,400 ml of plasma.  Phil continued the process until they had bagged all my "bad" plasma and replaced in with "good" stuff.  We Hope!!! 


Here is a picture of me at the end of the process holding my bad plasma!  Lee asked Phil what they did with the plasma they took out of me.  Phil said it depends.  On Wednesday it's for Chicken Noodle Soup and on Thursdays it's for Birds Nest Soup.  Sounds good to me :-)  Actually they just toss it.  I thought they should keep it and try and figure out why my antibodies are different and won't go away!

Anyway, after pheresis (which ended around 11:30)  I was given solumedrol - the "super prednisone" that gave me diabetes, tylenol and IV benadryl.  Then the chemo nurse came up to administer the bortezimib.  It was one quick shot of drugs into my IV port.  Then...the rituximab regimen started at 2:00 p.m.  It's now 8:45 p.m. and I'm still getting rituximab.  This is a really long day!  All in all, I did really well with the treatments.  I felt a little light headed at times but nothing significant and my blood pressure went sort of low but when I explained that I always have low pressure Phil felt a lot better. 

On Friday I have my next round but, thankfully, there won't be any rituximab.  It should only take around 3-4 hours instead of 13!  That treatment will be outpatient at Duke South Oncology lab. 

Lee and I drove down to Sanford to see Stephen and Vanessa at Dale and Lorie's.  It was really fun.  We enjoyed seeing them and Dale and Lorie were so nice and great hosts!  We visited with Stephen, Vanessa and Amy on the first day and Stephen and Vanessa and Lee and I drove to Pinehurst on day two.  That is a really nice place!  Here are a few pics from our visit...
Lee and Vanessa!  They are so cute together!

And of course here's a picture of Lee taking Missy to Sunny Acres Pet Resort.  She looks really happy in this pic.  Apparently when she got there it was a different story!  Lee said she sunk to the ground and they had to pull her through the doorway.  I say she did that to make Lee feel bad - not because it's a bad place!


We wish everyone a great rest of June and a safe 4th of July if I don't blog.

Love,
Lee, Wendy and Missy

Saturday, June 5, 2010

It's the first of June...

Hi everyone!

I had posted about having pheresis done in May but we have been waiting for the insurance company to give their blessing.

The approval finally came through late yesterday (8:00 p.m. EST)  Because it was so late it looks like nothing will get started until next week.  In defense of the insurance company, the treatment regimin has never been given to a lung transplant patient so Blue Cross had nothing to compare the request to.

My problem is two-fold -- 1) high antibodies and 2) I didn't respond to the first two treatment plans.  Dr. Zaas had numerous conversations with some docs at the Cleveland Clinic about how they treated Kidney transplant patients with these same response problems.  After those conversations the Duke docs came up with this game plan that needed to be approved by Blue Cross...

Day 1: plasmapheresis (1-1.5 plasma volumes) w/ citrate dextrose and 5% albumin replacement
solumedrol 100mg
bortezomib (1.3mg/m2) over 3-5 seconds
rituximab (375mg/m2)


Day 4: plasmapheresis
solumedrol 100mg
bortezomib


Day 8: plasmapheresis
solumedrol 50mg
bortezomib


Day 11: plasmapheresis 
solumedrol 50mg
bortezomib


Day 14: plasmapheresis
Day 16: plasmapheresis
Day 18: plasmapheresis

I'll be in the hospital for the first set of treatments.  Then - if I tolerate it well - I can take the remaining treatments outpatient. 

Normally the treatment plan would start this Monday but I will be out of town until Tuesday or Wednesday so I guess they will start it on Thursday.  We were all hoping to get the initial dose in before I left town but it just didn't happen. 

That's the update on the medical part of our lives. Now for the rest...


Lee and I are traveling to Sanford, NC because Stephen and Vanessa flew in to see Dale and Lorie (Stephen's dad and step-mom) and they live in Sanford.  Amy and Michael are going to be there too.  Dale and Lorie rented a house for their guests to stay in and they very graciously said Lee and I were welcome to come and stay in the house too so that we can see the kids.  I'm really looking forward to that because I haven't seen Stephen and Vanessa since we moved!

Lee, Amy, Michael and I went to the Durham Bulls baseball game and it was fun for the first two innings and then the torrential rain and thunder and lightening started.  OMG it was wild!!!  We don't get that kind of weather in Sacramento.  We were absolutely soaked in a couple of minutes (with umbrellas and jackets).  Needless to say the game was cancelled.  At least we'll be able to get tickets to another game! 

The weather here in NC is so different than CA.  We are getting used to getting rain about 3-4 times a week!  It's not like CA where it rains all day...sometimes it will rain for an hour and then move on.  Lee and I need to start keeping umbrellas in the car ;-)

Missy did great during her overnight trip to the Sunny Acres Pet Resort.  She also participated in Doggy Day Camp with the other camper dogs.  Surprisingly she seemed to like the other dogs.  We bought her a Thundershirt (http://www.thundershirt.com/) and she did pretty darn good with the weather too (she was at the resort during the baseball game weather!)  For any of you who have dogs that are afraid of thunder or fireworks or other stuff like that, I really recommend these shirts!  Missy is going back to Sunny Acres while Lee and I are in Sanford.

We had a nice Memorial Day...a couple from our church invited us over for a cook out.  There were eight couples and we had a really fun time and the food was great!

Have I said lately how awesome Lee is?  Well...even if I did I want to say it again. 

That man is the most wonderful person!  His love and support are keeping me going right now!  He is always there for me and his patience is beyond belief!  I get tired, short of breath, cranky and frustrated.  Lee just supports me through all of it... If I wake up at 3:00 in the morning and need to move to the recliner because I can't breathe Lee just helps me up and totes the pillows and blankets and sets me up in the chair with a kiss goodnight and back to bed he goes.  Lee does most of the cleaning, walking Missy, laundry and other chores.  He never complains.  Whatever I need he does his best to take care of it.  I know Lee is scared about my health.  I can see it in his face.  As I get sicker he gets more scared.  I try to reassure him but I can understand how he feels...if the rolls were reversed I'd be terrified!  Even through his fears he is supportive of me and hugs me and tells me it will be ok.  I couldn't have a better caregiver - I don't think they make a better one!!

Well I'm done writing for now but I will write when I've started treatments to let you know how they are...

Love to all,
Lee, Wendy and Missy