Tuesday, August 7, 2018

Going to Ball Games... and stuff

"...why must you live out those songs that you wrote."

Hank Jr's been rolling thru my mind of late.  Like Hank, I'm often questioned about some of the things I do when going out and about with my Sweetie.  I like to share our activities on social media, and that sometimes get a "what the heck' reaction from friends and family.

For instance, we went to a Rangers game last month.  Now the ballpark in Arlington is an open ballpark and at first pitch it was 107 F. Later in the game I posted this on Facebook:

I have to admit, that was a rough evening for me. So here I am, in the middle of a chronic lung transplant rejection, with a very severely suppressed immune system, going out in a very public place during a heat advisory.  Why?

Basically, because my Sweetie wanted to.  You see, it was snow globe night at the park, and every time she saw the commercials advertising the give away on television, she said she wanted to go.  So we went.

Something I haven't mentioned here before is that my Sweetie has early onset Alzheimer's.  The symptoms of her disease have been progressing for over 3 years. My job is to help her have the best life possible.  So yeah... I do stuff I shouldn't, but as John Wayne stated... "A man's got to do what a man's got to do."

No worries though, I take plenty of precautions.  For the game I drank 2 liters of water before going and brought 2 more liters of ice water to the game.  We had a cooler and I had my mask. High SPF sunscreen and taking is slow got us through the night.  Also, it was a pretty great game.

We have to live life.  I have received a wonderful gift of new lungs, that gift is meant to be shared and enjoyed.  Supporting my Sweetie is a blessing that I would not have had without this gift.

Thursday, July 12, 2018

Stability, A Goal Worth Achieving

My last visit with the Team turned out very well.  For the first time in a good while my Pulmonary Function Testing showed a little improvement.  It looks like the Thymoglobulin treatment has put my chronic rejection on hold.  UTSW has applied to be a part of the Extracorporeal Photopheresis study that I mentioned here and here and the Team thinks it would be a good thing if I were to participate. If they get approved, we may start next month.

Blood pressure has gone up so I've started a BP med (yeah more meds), but cholesterol, A1C and blood sugar are all good to go.  The meds are messing with my liver and kidney function, so I have to be sure to get in plenty of water.

The Thymoglobulin and the addition of an anti-fungal to my daily routine has messed with my immune system so we have to keep an eye on my immunosuppressants.  I'm currently taking Valcyte only once/day as white blood cell count (and a few other labs) is a bit lower than what they would like.  2.6 thousand/uL.  Good thing we are not in the cold/flu season.

Image (and mug) found here.

Wednesday, June 13, 2018

Update on Starting Extracorporeal Photopheresis

In my last post I mentioned that my Team wanted me to start Extracorporeal Photopheresis (ECP). It turns out that the Centers for Medicare and Medial Services (Medicare) will only cover this treatment for a lung transplant patient as part of a clinical trial.
CMS covers extracorporeal photopheresis (ECP) for the treatment of bronchiolitis obliterans syndrome (BOS) following lung allograft transplantation only when ECP is provided under a clinical research study...
There is one clinical trial that is reported as to not being accepting new applicants.   From what I understand, the trial has been extended and that UT Southwestern should become a study center come August.  This is the first time that Medicare has denied a procedure.  I've gotten used to Part D trying to deny my medications, but procedures is a new one for me.  I understand that most private insurances do cover this procedure with peer to peer review, but that does not work with Medicare.

Good news is that this trial is a research study and not a randomized clinical trial. The procedure works and an RCT would be unethical.

Thankfully I am relatively stable following my Thymoglobulin treatment, and I have a decent amount of lung capacity remaining, so this isn't as large an issue as it is for others in my situation.

Image found here

Thursday, May 24, 2018

Keeping on Keeping on - A New Treatment is in My Future

It's coming on a month and a half (40 days) since I was discharged from the hospital after completing my Thymoglobulin treatment.  I feel great, and was looking forward to today's visit with the Team.  I expected to have confirmation that my lungs were stable and then talk about some kidney function issues that the medications have brought up.  Well... turns out that even though my daily spirometry at home is basically, in my optimistic interpretation of the results, stable, I am still experiencing a slow decline in lung function.  My in-clinic FEV1 (basically the amount of air I can forcibly exhale in 1 second) has dropped from 2.03 to 1.83 liters.  Heavy sigh.

Next on the agenda is Extracorporeal Photopheresis (ECP). ECP utilizes a machine to remove blood, isolate the white blood cells, then medicate and UV irradiate those cells.  The blood and altered cells are then returned.  Here is the Medscape explanation of ECP.  On a very positive note, all of the treatments are out patient.  That's important and makes things much easier on us. The outlook following this treatment is also positive.  Here is a report from a retrospective study performed at a transplant center in Germany that I found pretty interesting.

I couldn't find any cool Photopheresis images to share, and I know everybody likes images so here is one from the UT Southwestern ECP page.

My kidneys have been having a very hard time with the meds of late.  I started really pushing water intake after my last clinic visit and it has helped.  My Creatinine level has dropped to 1.4 mg/dl from a high of 1.75.  Creatinine levels for normal kidney function are 0.67 to 1.17 mg/dl, so I do still have a ways to go. It is great news that I am trending in the right direction.  Healthy kidneys are an important factor in keeping the potential of a second lung transplant a viable future option.

Saturday, May 12, 2018

A Beautiful Day in North Texas

It was a beautiful day here in N. Texas.  A perfect day for hanging out with my Sweetie and enjoying the art at the Art on the Greene Art Festival.  Oh... if anyone from my Team sees this, no worries.  I was wearing SPF100 sunscreen, that mask is rated N95, and the sure is UPF50.  Life is for Living :)

Monday, May 7, 2018

What's Beautiful in Your World Today?

One of my Twitter friends recently asked "What's beautiful in your world today?"

Today, and pretty much since I've been home from my last hospital stay, I'm finding the new growth in my garden to be beautiful.  The plants and flowers make me happy, and give me a sense of peace.  Life goes on, and it is pretty awesome.

A pink tea rose, coral honeysuckle, one of our strawberry plants, oxalis, and my oregano patch.

I've also been jonesing for new houseplants so we picked up a few new babies

Yeah, I know the plumeria isn't a houseplant, but it is in a pot :)

And finally we (I) decided to finally take cuttings off of our cornstalk plant. We've had this plant for 17-18 years or so and it's probably time for a topping.

You'll notice that everything is easy to care for.  When I'm looking at the new plants, and thinking of their future, I have a chance to set mine aside for awhile.

What's beautiful in your world today?

Wednesday, April 25, 2018

Charting Chronic Rejection

A lung transplant recipient has more testing, screening and labs performed on their bodies than anybody else that I can think of.  Our pre-transplant workups, annual screenings, routine labs and follow ups generate a ton of data.  If you've been reading this blog for awhile, you know that I am a data hound.  The more data I can dink around with, the better.  I currently use this data to help understand what the medications are doing to my body, and how my lungs are doing.

As you can probably guess, I've spent a lot of time of late restudying some of my test results to get a better understanding of this chronic rejection issue.  Here are some of my totally unprofessional, uneducated, and quite possibly off the wall thoughts and conclusions of some of these past results.

Again, this is just me thinking out loud and sharing my own personal data. Each of us on this journey has our own unique path.

The high point of my FEV1/FVC chart occurred in July 2016. The next data point is Oct '16.  My annual exam in Jan of '17 shows the beginning stages of my rejection.

One of my favorite screenings is the Ventilation - Perfusion (VQ) Scan. The VQ scan looks at both air and blood flow through the lungs. One of the things I like about this exam is that I can watch the images develop while the scan is being performed. Another thing I like is that changes are pretty easy to identify.  I've had four VQ scans, one pre-translpant and three during my annual checkups.

Here are some of the findings from my second annual post-tx VQ scan


 On the ventilation images, there is inhomogeneous distribution of the Xenon-133 radiotracer throughout both lungs with decreased tracer distribution as well as air trapping in bilateral mid lung zones at 3 minutes . 

 On the perfusion images, there is heterogenous uptake of the Technetium-99m MAA radiotracer by both lungs. Matching perfusion defects are noted in bilateral mid lung zones, which appear more prominent than on the prior study. Another subsegmental defect in the left lung base appears unchanged since the prior study. No moderate/large mismatched segmental perfusion abnormalities in either lung.

There was no air trapping indicated my first annual exam.  here is an excerpt from my third, and latest, post-tx VQ scan.


1. Matching ventilation and perfusion abnormalities in the lungs in a nonsegmental pattern. There is retention of xenon gas seen in both lungs consistent with small airways disease.

Also noted in the perfusion findings: There are small stable "rat bite" defects at the lung bases bilaterally..

From what I understand, "rat bites" are just small perfusion defects and I'm not sure what they have too do with life, the universe, and everything. Here are a couple images from 2016 and 2017.  I don't yet have 2018.

See what I mean about being able to see the changes without having to read through the medical jargon?

The main purpose of the VQ scan is to detect Pulmonary Embolisms (blood clots), and on that front I passed with flying colors.  No blood clots in these lungs. What I find interesting about the scans is that I can see the changes in air flow.  They are a nice visual representation of what's going on in there.

CAT scans (CT) of the chest are a common pre/post transplant scan.  CT stands for Computed Tomography.  I've had seven CT scans of my chest post transplant.  CT scans are quick, noninvasive and give the Team a good snapshot of what's going on.  I'm not very good at all when it comes to reading my lung CT's, but my Team does a great job of explaining them to me.

This is excerpted from my January 2017 scan:


1. Status post bilateral lung transplant.

2. Areas of air trapping on expiratory images in both lungs and may represent bronchiolitis obliterans in a post transplant lung patient.


Lines and tubes: None. Lungs and pleura: No pleural effusion. No pneumothorax. Status post bilateral lung transplant. Linear band of scarring again seen in the lingula and anterior left lower lobe. Areas of air trapping are seen on expiratory images in both lungs...

This was the first time that Bronchiolitis Obliterans (BOS) was mentioned. We talked about chronic rejection during that annual visit, and several other times in 2017. We decided to hold off on the Thymoglobulin treatment (more on that here) as I had plenty of lung capacity available and we looked at other options.  In April '17 we got things stabilized until January of '18 when lung capacity started to decline once again.

Excerpts from my January 2018 scan:


My 1. Multiple punctate pulmonary nodules not significantly change.
2. Bibasilar air trapping on expiratory images. The differential includes bronchiolitis obliterans and a post transplant lung patient.


Lines and tubes: None. Lungs and pleura: The trachea and central airways are patent. There is mild bronchial thickening. The lungs are clear of infiltrates and effusions. There is biapical parenchymal scarring. The multiple punctate pulmonary nodules annotated on the axial MIP series these are without change. There is bandlike scarring and or atelectasis in the anterior-inferior lingula...

So I've got some air trapping and progressive scarring going on.  The scarring is not nearly as predominant as it was pre-transplant.

Another test that I find informative for tracking my lung health is my DLCO (Diffusing Capacity of the Lungs for Carbon Monoxide).  DLCO measures how well lungs transfer gasses to and from the blood stream.  It was a good measure for tracking the progress of IPF prior to my transplant and I see a correlation with what's happening now.  At the moment, I can't find my results from my 2017 annual visit and I have a request in for that data from my Team.

Here is a chart showing my pre and post transplant basic lung function testing that includes DLCO, FEV1 and FVC.  I didn't start charting my tests until later in the progression of IPF, but I do have the records if you are interested.

My 2016 DLCO was 86.23% and this last one was 52.3%.  The test summary indicates that I have "Moderately severe obstruction with impaired diffusion".  I think I can remember what the 2017 DLCO was, but won't post the numbers until I get verification.  I'll edit this post then.

I've been asked how I get all of my test results.  My Team at UT Southwestern utilize MyChart to provide tests and lab results to their patients.  There is also a MyChart app that provides a nice percentage of the functionality of the full desktop version of the program.  For more in-depth data I utilize a service from PicnicHealth. By using PicnicHealth I have access to all my electronic health data including doctors notes, actual images from scans and x-rays, and pretty much everything that is available electronically concerning my health.  My January data isn't listed there yet so I can't update my VQ images.  If you have IPF, you can access PicnicHealth via monARC Bionetworks.  The cool charts are from self entered data on PatientsLikeMe.

Those are the primary scans/tests that I feel show the progression of chronic rejection (BOS).  Again, this is just my interpretation and I may be mistaken, but it is what I get out of my testing. 

I also have plenty of data on blood chemistry, blood counts and immune system function since my transplant.  If you are any labs that you are interested in knowing about, just ask.

With all of this talk about chronic rejection I'm sure some reading this have questions about my quality of life.  I have to say that I feel great.  Yes, I do get out of breath easily now, and yes my twice daily spirometry can be disheartening, but I feel great.  Just this Spring our oldest grandson graduated from the Air Force boot camp and I was able to tell him just how proud I was.  These lungs are still doing a great job of supporting the rest of me.  I understood going in that a lung transplant wasn't a permanent solution and that every previous moment with new lungs was and is a blessing.  I'm writing about this chapter of my journey because information about these issues from a patients point of view is scarce and hard to find.  Hopefully this information will be helpful to someone who is on the same path.

Thursday, April 19, 2018

The Next Chapter

Hi guys.  In my last post I mentioned that I was having issues with my new lungs, and asked if all y'all were interested in following along with this part of my journey.  I received some great feedback in the comments to that post, on Twitter, and off line.  The response was very encouraging so here we go.

Image from Trappancs

Before I get started, I want to mention that the issues I am going through are part of the lung transplant process for many of us. I'm not talking about my transplant rejection to be negative, quite the opposite. I hope to get some helpful information out there for folks who are on this same path.  If you are pre-transplant and reading this, hopefully I don't cause you any undue duress with my posts.

There are two basic classifications of lung transplant rejection, Acute and Chronic.   Acute rejection is the most common and can progress over a very short period of time. Acute rejection often resolves with prompt and aggressive treatment by an experienced transplant team.   Around one month after my transplant, I experienced an acute rejection.  My acute rejection was brought on by a simple Coronavirus and it took an aggressive antiviral treatment and steroid pulses to resolve the issue.  My FEV1 dropped from 77% to 61% predicted over the course of the rejection episode. That acute rejection was rough, but I recovered and my lung function continued to improve.  I have plenty of posts about the exercise and diet regimes that helped me to eventually achieve a FEV1 of 126% predicted. That's a 5 liter FEV1, I was pretty proud of myself.  It turns out that building up that extra capacity was a very good thing as it prepared me for the second type of rejection, chronic rejection.

Chronic rejection is a scary concept that folks don't really want to talk about.  There's very little information out there on the subject and even less from the patients point of view.  Chronic rejection is, very basically, a progressive fibrosis that can have an obstructive or restrictive component.  The umbrella term for chronic rejection is Chronic Lung Allograft Dysfunction (CLAD). The obstructive form of CLAD is Bronchiolits Obliterans Syndrome (BOS), and that is what I am Experiencing now.

At my peak, my spirometry results were FEV1 of 126% and FVC of 113% predicted. This was in July of 2016.  In October of 2016 my spiros started to decline. We did several different treatments to try and stop this decline.  We adjusted my medications, performed a couple steroid pulses, and in May of 2017 I underwent a Nissen Fundoplication. My decline in lung function stabilized in June of 2017.  FEV1 = 64% and FVC = 79% predicted. Lung function spirometry remained stable until this past January when they started to decline once again.  The Team decided it was time for me to undergo a Thymoglobulin course of treatment. The treatment itself wasn't that bad, I experienced the common side effect during and after the first couple of infusions.  Before starting the treatment I had to have a bronchoscopy and quite a few other tests to ensure that I had no infections or other issues.  I developed a slight fever after the bronch that delayed the treatment for a couple of days while it was resolved. It would be a bad idea to further suppress my immune system if I had an active infection so I ended up staying 11 days at my home away from home, the 10th floor at UT Southwestern Clements Hospital.  It took seven infusions of the Thymoglobulin to drive my CD3/CD4 T-Cells down to <25 cells/ul.  It's a good that we seem to be past the most dangerous part of the flu season, doing this in November would be much scarier than it is today.  I still have to be very careful about infection control and limit my exposure to the public, but the fewer viruses in the air the better.

My hospital follow up exam at the clinic was this morning and it turned out very well.  My spirometry went up a bit compared to my pre-hospital tests and lungs looked and sounded good.  Today's Spiros = FEV1 - 51%, FVC = 71%.  That is still plenty of capacity to be living an active and wonderful life.  My SpO2 (blood oxygen) readings are between 96 and 100% so I'm getting plenty of oxygen even during light exercise. I do get out of breath much easier so pacing myself when doing chores and the like is now the norm.  I am still in much better shape than I was for more than a year prior to my transplant.  These issues really are a part of the lung transplant package, and will be until researchers can grow new lungs using the patients own DNA.  Even better yet would be to find a cure for MS, IPF, COPD and the other diseases that require a lung transplant.  Until then, we do what we can do and enjoy this wonderful gift blessed to us by a special donor and donor family.

A future post will include imaging and test results showing how my lungs are being affected.  If there are any lab or test results that you are particularly interested in, ask about them and I'll include them also.

Tuesday, March 20, 2018

Quick Update and a Question

It has been a good while since I've posted, and lots has happened since my last one.

I did reach the major milestone of celebrating my 3 year transplant anniversary.  Recent Scientific Registry of Transplant Recipients (SRTR) data shows that I'm a member of the 64% who have done so.  Not only have I survived, I have thrived.  Yes, there have been setbacks.  And yes, I am having some issues that I will talk about in a bit, but I have survived. I am doing much better than I was the year prior to my transplant.  I am not back on supplemental oxygen, and I am enjoying life.

Life is good, and my new lungs have been a wonderful gift from a very generous donor family.  Now part of package that comes with the gift of new lungs is the knowledge that there will be setbacks, and that new lungs don't last forever.  My lungs are on the downward slope side of the post transplant lung capacity bell curve.

The graphs above are my basic spirometry results following my lung transplant. FEV = Forced Expiatory Volume and is basically the amount of are I can forcibly expel in 1 second.  FVC is my Forced Vital Capacity and is a basic snapshot of total lung volume.  FEV1 is the data most significant to my transplant team.

We are not sure what is going on with the little dip at the tail end of the graphs.  It may be a continuation of the chronic rejection that started near mid-chart, or it may be triggered by something else entirely.  A steroid pulse over the weekend followed by a taper that I am on now seem to have stabilized things once again.  We'll see soon enough.  I've also been having issues with very low white blood cell count and other related labs so my meds are all out of kilter.  Again just part of the package.

I am a bit reluctant to talk about this new chapter in my journey as I really don't want to discourage anyone who is in the middle of making the decision about lung transplant. Thinking about it, I feel that writing about what is going on may be helpful to some, I know information like this is something that I look for, and cannot find.

So what do you think?  Are you interested in reading about my annual testing results, hearing about what's going on with the new lungs, and following along this new chapter in my journey?

Let me know, I'm really interested in your thoughts.

Monday, June 12, 2017

Monday Macros - 6/12/17

Monday Macros 

Weight = 139. Weight gain/loss this period = 0 lb. Total weight loss = 112 lbs. Macros for the week = Carb/Fat/Prot - 15/58/27%. Daily avg cals = 1,865. Body Fat = 9.6%

I tried a couple of food experiments this week.  First was adding bacon drippings for scrambling my eggs. I have some uncured Berkshire drippings in the fridge.  This worked well.  Then I tried bacon. Now this was part of one of the new egg bites at Starbucks.  Not sure if it was the bacon, or something else in the bite, but this hurt. Stomach pain and overall discomfort after the first bite with bacon.  I removed the bacon for the rest 'cause I needed the calories.  Won't be doing that again. The third test was almond butter.  I added two TBSP's into a protein shake. This resulted in one heck of a lot of nighttime gas. So back to following the  Soft Nissen Diet for awhile.

I am able to eat larger portions now, and getting my pills down is becoming easier so I am making progress.

More Monday Macros