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! 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!

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 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'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'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.'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!

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 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!

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