The "It's Been a Long Time Since I've Written a Post" Post

I can't believe that it's coming on a year since my last post. It has been one eventful 11 months and by our Lord's grace, I'm still here and doing well.

In June I was a member of a panel that presented the Bronchiolitis Obliterans Syndrome (BOS) Externally-led Patient-Focused Drug Development Meeting to the FDA. This was a very interesting experience that will hopefully lead to more patient centered clinical trials. More quality trials 

may lead to a cure of this syndrome that has cost the lives of so many lung transplant recipients. A written report of the meeting will be published soon.

As I've mentioned before, my Sweetie and I live in a senior living community. The community has been very good for her and we have become involved  in the activities that she is able to do. We participate in most of the physical activities and we are active in the community church. Well, maybe a bit more than active. The couple that led the church are moving in with one of their children and I have taken over the responsibility of leading our worship services. We have leaders from local churches visit each week to share the main message of the service and we share the Lord's Supper monthly. It is a ministry that I am blessed to be a part of.

Health wise we are doing well. Covid has blown through the community a couple times this year and we were able to avoid it so far. Currently Covid, RSV and the flu are concerns in the community, but people who are ill are doing a fairly good job of self isolating. Of course we are up to date on all our Covid Vaccine shots and our flu shot. I've also had 3 doses of Evusheld (monoclonal antibodies) and am participating in several studies involving transplant recipients and Covid 19. We're doing our best to avoid infection over the next few months.

V and I are both progressing in our individual issues. As I go over what all is going on, please keep in mind that I am still much healthier than I was the year prior to my transplant and that many of my issues are a part of the lung transplant package and I've written about the possibility of these issues much earlier in the blog. It's also important to mention that V and I are very happy and make a great team. I'm her memory and she's my muscle.

During V's most recent visit with her neurologist she scored a 9 on the Mini-Mental State Exam (MMSE). On a positive note, a score of 9 means she won't be having to take that exam during our future routine neurology visits. The ability to maintain the strength and energy to care for my Sweetie is an important part of my decisions about my personal treatment plans.

If you've been reading along for a while, you'll probably remember that the upper lobe of my right lung is permanently collapsed and that I've had several major infections, a major pulmonary embolism, a few acute rejections, and that I'm in chronic rejection. The chronic rejection had been stabilized by the Extracorporeal Photopheresis clinical trial that I've been participating in. 

It's starting to look like the Covid infection that I had summer before last has triggered relapse back into chronic rejection.

My clinical spirometry results over the past year indicate a slow and steady decline in FEV1.

This decline could be chronic rejection, or it could be infection. I currently have two infections in my lungs. The numerical column of the chart is liters of air. Just as a reference for where my lungs are now, my highest FEV1 after transplant was over 5 liters.

I've been hospitalized twice this year. Once back in May due to my body not liking a medication change. I've been having premature ventricular contractions (PVCs) and my meds were not controlling them very well. My cardiologist replaced my meds with new ones and my body reacted poorly, like get to the ER poorly. We got that lined out with a tweak of the medications and all is well now. I still have PVC's, but they are pretty much under control.

My second hospitalization was due to infection. High fever, dropping spirometry, the usual infection symptoms sent me to the ER. A bronchoscopy found a fungal infection (aspergillus) that we are treating with an antifungal medication. I am currently in month 4 of a 6 month treatment plan. A couple months later Mayo Clinic returned positive results for a bacterial infection, Mycobacterium abscessus complex. We don't yet have a treatment plan for this latest infection for a couple of reasons. First we have to finish up the course of treatment for the fungal infection before starting any new heavy duty treatments, and second just because the bacterial is present doesn't mean it is currently actively progressing. Right now we are taking a 'wait and see' approach before taking any action. I'm ok with that as my primary goal physically is to have the strength and energy to take care of my Sweetie. And, like everything else, I've put this in our Lord's hands so there is no need to worry about things that have been offered up to the Lord.

One thing I really enjoy doing is computer gaming and I was invited to participate in the closed beta test of Diablo IV. A closed beta test is a pre-release test of a games features and mechanics. I've been looking forward to playing this game since it was announced so gaining access to the beta was awesome. My grandson calls me an "elderly gamer". I get a kick out of that as I've been very highly rated in the games that I play often.

Here is a picture of V and I at my birthday dinner. Our daughter got a gift cert to 60 Vines. It had been since before Covid that we've been there. Really enjoyed ourselves.

Tomorrow is Thanksgiving. One thing you learn with a lung transplant is to be thankful for every breath. 

Thanks for reading. It's kinda therapeutic to be able to put my journey into words.

Happy Thanksgiving my friends.

Annual Exams

 January 1st marked the 6th anniversary of my lung transplant. If you want to know more about the procedure, I wrote about it here. An important part of living life with new lungs is all the monitoring we undergo to check how our lungs are doing and how the rest of our body is handling all the medications we take. Every year we have our annual examinations and I started mine today.

Today was labs (a few vials of blood and 22 results so far), two ultrasounds, a CT scan and a chest X-ray. A couple of routine tests that are normally done are being postponed this year due to COVID. This is both to minimize exposure and free up resources for more important things. I have a bone density test and the full pulmonary function test along with arterial blood gas next month.  I expect the bone density test to show more loss due to my meds, and the PFT should be similar to last year's, except for maybe DLCO.

Now, why do I expect the PFT to be similar to last year when I am in chronic rejection?  Drum roll please...  Because my CT scan indicated that my lungs are stable, with no changes from last year.

Lungs and pleura: No pleural effusion is seen. Right upper lobe collapse with underlying bronchiectasis is again seen. Stable right middle lobe volume loss noted. Stable tubular density within the lingula with associated scarring noted. Stable reticulation within the periphery of both lower lobes noted. Few scattered punctate nodular densities are stable bilaterally. Air trapping again noted. No new pulmonary lesions identified.

That result is just plain awesome. The upper lobe in my right lung collapsed 4 times in 2018 before it became permanent and the middle lobe issue occured in 2019. I'm very happy the middle lobe issue hasn't progressed and there are no indications of progressing chronic rejection. My home spirometry 0n 1/1/20 and 1/1/21 are basically the same.  If you average my spiro results from the 1st week of 2020 and average the results from the 1st week of 2021, my home spirometry has actually up just a tad. Add the CT result to my home spirometry, and it's looking like the ECP Clinical Trial I'm participating in is working. This is very exciting news for me, and for the lung transplant community. Having a potentially effective treatment for chronic rejection gives hope for many of us. 

Lung transplant chronic rejection is referred to as Chronic Lung Allograft Dysfunction (CLAD) and my subtype of CLAD is Bronchiolitis Obliterans Syndrome (BOS). My designation is CLAD stage 3, BOS. For an explanation go to Chronic lung allograft dysfunction: Definition, diagnostic criteria, and approaches to treatment. 

I tried to find a cool image for CLAD to post, but didn't find anything interesting so here is my chest X-Ray from last October.

The Roller Coaster Ride That is 2020

January 1st was the 5th anniversary of my life with new lungs. Celebrating 5 years of a wonderful life that I wouldn't have without the wonderful gift offered by my donor family, the ongoing skill and care of my Transplant Team, and the grace of our Lord.

This chart of my lung function over the past 5 years is a good visual diary of my life with new lungs.

Since January 1st, 2020 has been one heck of a roller coaster ride. Seriously, we've been up, down and all around.

January started our nice enough. The main thing I was worried about was monitoring the flu season and doing the routine things I do to avoid the flu. My lungs were doing very well, the ECP Clinical Trial I'm participating in seemed to be effective.  My lung function had stabilized and I was feeling good.

Near the end of January came the first steep drop on the the roller coaster, I had a Pulmonary Embolism. This was my 1st ambulance ride to the hospital, and ended up being my 3rd trip to the UTSW ICU. We caught the PE early so that there was no permanent damage to my lungs or heart. We have my blood thinner dose lined out and other than the fact that I get bruised by a strong breeze and  bleed a bit excessively when cut, I'm fully recovered from that little event.

I was back to feeling good when my blood pressure and pulse dropped to pretty low levels.  This time the ambulance was hesitant to go all the way into Dallas, but after a call from my team and the fact that they got me stabilized, I did end up back at my home away from home, the 10th floor of UTSW.  This trip was due to a mineral imbalance and dehydration. I was also having a lot of PVC's at the time.  We got that lined out, changed my supplements and boosted my water intake up to 3-4 liters/day. That's a lot of water.  The water really helped my kidneys (stage 3 CKD due to meds) and dropped my Creatinine levels. A side effect of all that water is that my legs are now a bit swollen.

After we got that issue lined out, I was feeling really good. As a matter of fact I was feeling better than I had in a long time. I was enjoying that ride to the top of the roller coaster. Then in June I was back to the hospital.  This time my blood pressure was high and I couldn't get it under control with my normal meds. It took a few days in the hospital to get things back under control. The trigger of this episode may have been a Rhinovirus.  Yeah, a stinking cold. That's the direction we went and I was back home and once again feeling good.

I've had a couple more episodes of higher blood pressure, but my Team has given me the tools to address this issue. I now have the ability to take an EKG at home and this tool gives me a lot of comfort when things just don't feel right.  With everything I am able to monitor, I can usually identify and address minor issues quickly.

Last week I did a Barium Swallow Test to ensure that my swallower was still working, it is.  I was also finally able to get in to see my Dermatologist.  I had been seeing my Dermatologist once every 3 months.  Last October we decided to go 6 months between visits over Winter, then COVID restrictions hit and my appointment got pushed back to last week. There were a few spots that needed frozen off, and one spot that required a biopsy.  The biopsy indicates that I have a Squamous Cell Carcinoma that will have to be removed.  Not a major issue and we'll get it taken care of soon.

Some good news for the year is that I have completed the ECP Clinical Trial and am now getting monthly Extracorporeal Photophereses treatments as maintenance.  ECP does not cure or reverse chronic rejection, but it does seem to have paused it for awhile.  My pulmonary function has been stable for 2020.  That is an awesome achievement for a lung transplant recipient who has Chronic Lung Allograft Dysfunction (CLAD) BOS3.  The 'BOS3' just means that I've lost more than 50% of my highest post-transplant lung function.  We've worked hard to get me to this point, and I really appreciate all that my Team has done to help keep me healthy.

As 2020 continues on, I'm sure the roller coaster ride will continue with it's dramatic highs and rapid drops.  Just so long as we end up near where we started, we'll be alright.

We do need to get a handle on stopping the spread of COVID-19. We almost had it under control, then came Memorial Day, and that's the day that the United States pretty much said "Screw it, time to party".  All organ transplant recipients are in the "High Risk" demographic for COVID-19, lung transplant recipients especially so.

Please wear a mask when you are around people you don't live with.

Please maintain some distance from people you don't live with.  6 feet is an easy distance to visualize and is within easy talking distance from your friends.

Please wash your hands after touching something that people you don't live with have touched.

Getting everyone on board with doing these three simple things would go a long ways toward slowing the spread of this disease and saving lives.

I'm Stable and the Dallas Stars are Rocking It.

Last November while in the hospital with my collapsed lung, I was watching the Dallas Stars and hoping that they would make go at it this post season - and that I would be here to see it. The Stars have won their first round in the playoffs, are playing very well in the second, and yes I'm still here.

As a matter of fact I'm doing quite well. I almost don't want to talk about it so I don't jinx things. This is the first time I've made it to May in a new year without having to be admitted to the hospital at least once.  I'm very happy about this accomplishment.

If you've been reading along, you know that I am having issues.  I am rejecting my lungs, but the rejection has been stabilized. The official name is Chronic Lung Allograft Dysfunction (CLAD). My type of rejection is primarily obstructive (Bronchiolits Obliterans Syndrome - BOS), and I am classified as BOS 3. There are also some restrictive components with my rejection. but I am primarily BOS. Chronic rejection is a bad thought for those of us living with new lungs.  There isn't any "cure" for chronic rejection and the articles you find during a web search don't offer much in the way of hope.  Pretty much like web searches for IPF.  But just because there is not cure does not mean there is nothing for us to do.  My Team has worked hard to get me stabilized a couple of times now, and I am enjoying my current stability.  My latest X-Rays indicated:

1. Stable right upper lobe volume loss with underlying bronchiectasis.
2. Stable mild right middle lobe volume loss. No acute consolidation. 

The volume loss indicated in the X-Ray results is because the upper lobe of my right lung has collapsed three times that I'm aware of, the last was on Christmas Day while we were visiting family.  I was cooking a rib roast when it happened.  Dinner turned out awesome because I didn't let anyone know until we got back to Texas. Seriously, there wasn't much anyone could do other than what I had already been doing so it wasn't an emergency.  I did visit the Team when we got back and things were as expected. Later, at my January annual visit we found that the middle lobe was starting to also have issues. So I'm happy to see that both lobes are stable from January.  Stable is good.

Keeping these lung healthy does come at a cost, but well worth it.  The medicine that is keeping me alive is kinda rough on the rest of my body.  My list of Current Health Issues listed on MyChart is becoming a bit of a long read.  I'd list the major issues, but really don't want to come across as complaining.  I really don't feel negative about any of this.  I am still alive and life is wonderful.  Yesterday we enjoyed our granddaughters orchestra concert, and before that we watch her win the sparring portions of two Taekwondo tournaments. Both times she beat boys older than her.  She's on top of the world.  This Summer another granddaughter is coming to stay with us for awhile, we get to share with her some of the really awesome stuff that the DFW Metroplex has to offer.  So yes, the issues that come with a lung transplant have been worth it to me and my family.

If you are interested in some of the medication related issues that I'm experiencing, just ask.  It would be a good topic for a future post.

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:

IMPRESSION:
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.

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.

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:

IMPRESSION: 

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.

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. 

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.