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

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

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

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

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