Friday, February 1, 2019

Fourth Annual Post-Transplant Exam

On January 1st I celebrated the fourth anniversary of my lung transplant.  Four years of new life thanks to the wonderful gift from my donor family.

With each anniversary, comes my annual post-transplant exam. The annual exam is basically a very thorough physical. The test/exams for the day included labs (14 vials), a CT of the chest, ultrasounds of my heart and abdomen, a bone density test, chest x-ray, a 6 minute walk test, arterial blood gas, a couple pulmonary function tests, and a physical exam.

The lab results were routine.  My white blood cell count is a little high, 7.09x10(9)L. We prefer it to be a point or two lower and will adjust my meds a bit to get it down.  My Creatinine, an indicator of kidney function, is high but not higher than what has become normal for me. I average about 1.4 mg/dl creatinine which indicates how hard the meds are on my kidneys. Other than that my labs were all good.  Immune system properly suppressed, cholesterol and A1C are normal. and liver function is good.

My bone density exam showed the the meds continue to demineralize my bones.  I've lost between 17 - 19% of the bone mineral density in my hips since my transplant. I'll be seeing my Mineral Metabolism Doc next month.

Now we get to the part of the exam that shows the condition of my lungs and progression of my chronic rejection. The X-rays, CT of my chest, and full Pulmonary Function Tests offer a solid picture of where I stand at the moment. You have to look at all three together to get the full picture.

From my X-ray:
Lungs and pleura: Stable right upper lobe volume loss with underlying bronchiectasis noted. Mild right middle lobe volume loss seen. No acute consolidation.
From the CT:
1. Complete right upper lobe collapse with mild bronchiectasis as before. Stable mild bronchiectasis and volume loss of the middle lobe. No endobronchial mass identified.
2. Air trapping on expiratory phase images is suggestive of small airway disease such as bronchiolitis obliterans.
3. Near complete resolution of previously noted groundglass opacities at the lung bases with few residual groundglass and reticular opacities at the left costophrenic recess.
And from my PFT's:
Forced expiratory flows are severely reduced with a moderate reduction in the forced vital capacity.
No bronchodilator response
Lung volumes reveal a normal total lung capacity with incomplete exhalation of the vital capacity and trapping of a large residual volume
Diffusion capacity is moderately reduced
Sever obstructive ventilatory defect with air trapping and impaired diffusion. COPE/Emphysema. Vascular disease, Bronchiolitis cannot be excluded
The most interesting part of these results relate to my collapsed lung. I have been having issues with the upper lobe of my right lung collapsing.  We've been able to get it reinflated a couple of times, but it appears that it is going to be collapsed more often than not.  What is new in these results is volume loss in my middle lobe.  That's not at all what I was expecting, and a bit disheartening.  I'm not quite as stable as I had hoped.

The air trapping noted in these findings is indicative of my chronic rejection. The air trapping combined with the >50% loss in lung volume from my highest results shows the progress of the rejection.

The good news about these results is the 'Near complete resolution of previously noted groundglass opacities..." This indicates that we have addressed the unidentified infection that was previously an issue.

So the end result of this exam is that we will be adjusting my meds a bit to drop the WBC, and I'll be using Acapella airway clearing device along with my incentive spirometer each day to potentially help with the collapsing lung.

Update: My goal after this visit is to stay out of the clinic and hospital until my next quarterly exam :)

Since every blog post needs an image, here is the box we sit in for our full pulmonary function tests.

Image found here

Update: I've increased my CellCept to 1500 mg twice/day and I'm a line item topic of discussion for the Team's weekly meeting next week. They are going to attempt to refer me to Extracorporeal Photopheresis again, but it is not likely it will be approved by Medicare, again.

Friday, December 7, 2018

Chest Muscle vs Body Fat as an Indicator of ICU Survival

If you have been reading along with me for awhile, you know that losing weight has been a large part of my journey.  When I first met my Transplant Team, I was denied the opportunity for a transplant because I had too much body fat.  At my heaviest I weighed 289 lbs. At the bottom of my weight loss journey I weighed in the mid 140's.  I feel my best in the mid 150's, but my Team wanted me to put on a bit more weight to give me an energy reserve for those times when I was sick. I'm currently in the low 170's and this makes my Team (and my Mom) happy. I would prefer to be lighter.  I bring this up because the results of a recent study indicate that body fat may not provide any additional chance of surviving a visit to the ICU.  From PulmonologyAdvisor:

The above article suggests that the amount of muscle in your chest is a much better indicator of survival than amount of body fat when you visit the ICU.
Larger PMA at admission was associated with significantly better outcomes, including higher rates of 6-month survival ..., lower rates of hospital mortality ..., and more ICU-free days (.... In contrast, SAT was not significantly associated with any of the measured outcomes.
PMA = Pectoralis Muscle Area.  SAT = Subcutaneous Adipose Tissue.

What this says to me as a patient who spends a lot of time in the hospital, and some of that time will be in the ICU, is that I should maintain my body fat and muscle mass pretty much the same as a healthy individual.

It is also a bit of a concern for me as during my last visit the Doctor mentioned that the muscles in the right side of my chest are shrinking.  Back to the kettlebells I go.

Something to talk with my Team about during our next visit.

12/9/18 - Muscle mass and core strength are also shown to help with lung transplant recovery.

Friday, November 30, 2018

Post-Hospital Update

Thursday was my two week post-hospital followup visit with my Team.  The reason I was in the hospital is that the upper lobe of my right lung had collapsed for the second time. The first tine it collapsed, it re-inflated during a bronchoscopy. The second time it collapsed we couldn't get the issue resolved during my hospital stay and I came home with the very good possibility that this was my new normal.

My home therepy included a 60mg prednisone taper, three weeks of oral antibiotics and using an incentive spirometer.

During the two weeks following my hospitalization my home pulmonary function testing (PFT) results improved to my pre-collapse capacity and I feel much better.  I was looking forward to seeing my X-rays and wasn't too surprised to find that my lung has done a good job of recovering.  It's not fully inflated, and you can tell that there are issues, but it is much better than when I left the hospital.  We still don't have a good explanation for why it collapses, or why it has re-inflated.  Our working theory at the moment is that during a transition off of an antifungal mediation my immunosuppressant medication levels got out of balance for a few days resulting in a rejection episode.

Visually, the tissue in that area is more white than pink indicating to the Team reduced blood flow to that lobe. My next annual series of testing is in January. The VQ scan should have some interesting results.

My current plan is to monitor the issue.  I continue to perform daily PFT's (as should all lung transplant recipients) and will be having chest X-rays every 2 weeks or so for awhile.

On a side. and likely related note, the Doc mentioned that my chest muscles on the right side are shrinking.  He's not sure why atrophy is only on that side, more interesting stuff.

I couldn't find an image of an X-ray similar to mine, so here's one of me trying on a silly Christmas jacket.

12/5/18 - X-ray results from my visit: 

1. Right upper lobe bronchiectasis and partial collapse, with probable improvement in aeration since 11/13/2018. 

 2. Prior densities in the left lower lung field have also improved.

"Improve..." used twice in one reading.

Thursday, November 22, 2018

Happy Thanksgiving!

Happy Thanksgiving my friends.  I hope this note finds you warm, happy and feeling well loved.

There is so very much to be thankful for. My Sweetie who shares this chapter of our story, my family for supporting and loving us as they do, for the Lord for blessing us with all of our gifts, and for my donor family for this precious gift of life.

I am also thankful for you guys, for checking in and being a part of our journey.  Thank you all so very much and have a wonderful Thanksgiving and Holiday Season.

Wednesday, November 14, 2018

My Latest Hospital Stay

Hey all, I know it has been awhile since my last post.  Things have been in a bit of flux and I wanted to wait until I got a bit of stability before posting.  That's not going to happen, so I might as well post away.

I had mentioned that my Team wanted me to have Extracorporeal Photopheresis (ECP and that UTSW was trying to be a part of a Clinical Study that included ECP for post lung transplant patients in chronic rejection.  Well that's not going to happen.  We didn't become a part of the study and ECP is not covered by Medicare for this application.

Events over the past few weeks may make that point moot anyway.

In late October I had some chest pain on the right side.  It kind of felt like pneumonia but only on the right side.  My daily Pulmonary Function Test (PFT's) showed my lung function had fallen off a bit. Went in to see the Team and found that the upper lobe of my right lung had collapsed.  We left the clinic and headed to the hospital for a bronchoscopy.   This was bronch #19 for me, and the roughest of the lot.  It was also the hardest my doctor remembers doing.  The docs who perform the bronch's are the Team doctors, so we know each other well and can have very honest discussions about what's going on. Getting six biopsies from the upper lobe caused a good deal of bleeding and I woke during the procedure gagging and coughing. On a happy note, the procedure, or the coughing, opened up my lung and things looked good after.

I was scheduled for a CT the 2nd week of November and a couple of days before the test my chest felt off again.  Not as bad as before, but off.  The CT showed that my that lobe had collapsed (Atelectasis) again, so I was off to the hospital on Saturday.  Now one really nice thing about being a part of this team is the fact that when you head into the hospital, whether it is to the ER or a routine admittance, they are waiting for you when you get there. So I checked in and whisked up to the 10th floor, our home away from home.

To make a long story shorter. We tried Intermittent Positive Pressure Breathing (IPPB), BiPAP, CPAP,  an incentive spirometer and the Acapella (flutter) device. We also did IV antibiotics and another bronchoscopy. And once again, I'm unique. The team hasn't seen a post transplant lung collapse like this without a physical cause.  We also couldn't get it re-inflated. So I'm back in the comfort of my own home, on a 60 mg Prednisone taper and three weeks of oral antibiotics.  I'm also using the incentive spirometer and the Acapella.

I'm feeling good, and my Pulmonary Function Tests (PFT's) are a bit better than prior to the hospital stay.

Just another paragraph in this chapter of my story.  An interesting one to be sure, and one that hopefully helps my team with future patients.  This paragraph has to include my CT (with contrast) from the hospital:

1. Redemonstration of complete collapse of the right upper lobe, no definitive endobronchial lesion identified. 
2. Grossly unchanged multifocal groundglass opacities in the bilateral lower lobes. Findings may represent infection/aspiration. 
Chronic allograft lung disease is also on the differential.
My next annual VQ scan will be interesting.

Edit: I forgot to include the leading 'best guess' as to what happened.  Back in April I underwent a Thymoglobulin treatment that dropped my T cells down to < 25 cells/ul. That is very low. To help prevent a serous fungal infection, I took Vfend, a potent anti fungal for 6 months.  Vfend has a large effect on how my body metabolizes Prograf, a major anti rejection drug.  When transitioning off of Vfend, the Prograf level in my body dropped low, this may have triggered a rejection event. Imaging does indicate that my chronic rejection is progressing.

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 :)