Seven Years Later

It's been seven years since my bilateral lung transplant, and wow, a lot can happen when you have an extra seven years of life.

I've been able to watch grandchildren become young men and women, and hopefully have some small positive influence in their lives. I've made new friends and reconnected with an old one. My walk with our Lord is much closer than it has ever been, and I'm in a really good place inside my head.

If you've been reading along, you know that there have also been some challenges along the way. Most of the challenges are part of the lung transplant package, others were quite unexpected. Who would have thought we'd lose over 800,000 people to a virus here in the United States, and people would still be resistant to doing anything help at least slow the spread. Or, that my wife could be diagnosed with Alzheimer's in the same year that I was transplanted. Life is interesting :) We live in a senior community that can supply the extra help that we sometimes need, and we are enjoying being here much more than I ever would have expected. I am the youngest in the community, there are couples here that have been married longer than I have been alive. I'm learning a lot.

I just finished up my transplant annual exams the other day. No matter how the year's been going, I look forward to these scans, labs and tests, they are a good spot-check of my health and where it is trending. My chest CT scan is a compact picture of what my wonderful lungs have endured, each finding a reminder of earlier challenges. Thankfully this latest scan didn't identify anything new :)

Lungs and pleura: Postsurgical change of bilateral lung transplant. Mild posterior right pleural thickening, unchanged. No pneumothorax or pleural effusion. No central endobronchial mass. Complete collapse and bronchiectasis of right upper lobe, unchanged.

Subtle patchy ground glass opacities of each lung base persists but have decreased. There is a mild degree of mosaic attenuation of the lungs on expiratory imaging, similar to previous studies. Hyperlucency of right lower lobe most evident involving superior segment, unchanged. Minimal subpleural reticulation at each lung base similar to previous studies.

Focal, branching opacity at ventral lingula adjacent to chronic subsegmental atelectasis or scarring, is likely related to endobronchial mucous plugging, unchanged compared with previous studies. No consolidation. A few scattered small bilateral pulmonary nodules measure 0.4 cm or less in diameter and are unchanged. No new nodules.

The ground glass opacities are left over from my COVID infection earlier in the year. The "but have decreased" note is pretty awesome. 

I hadn't mentioned this, but right before Christmas I had an acute rejection episode. It was a minor rejection and was resolved with prayer and pulse steroids. I wasn't really sure just how my full series of pulmonary function testing would turn out. I went into "the box" expecting a loss in lung function, just was not sure how significant the loss would be. 

I started writing down all of my PFT results, but doubt many would really be interested. If you want to know any of my numbers, ask in the comments and I'll be happy share them. They are down a bit from last year, but for the most part higher than when I began my ECP treatments. All things considered, they were better than expected.

One really good test result was my six minute walk test (6MWT). I was able to walk significantly longer than last year. As a matter of fact, my distance was back up to where it was in 2019.  That's pretty awesome. We do a lot of walking in our senior community, along with some low intensity cardio. It seems to have done some good.

I still have to get my bone density scan early next month, and a colonoscopy. I need to get off my rear and schedule that one, not something I enjoy. It's kind of like a tooth that should be extracted. I need to get it done, just really don't like the idea of volunteering for another procedure and more pain (the tooth extraction, not the colonoscopy),

I didn't do my Extracorporeal Photopheresis treatment in December. It was due about the time I was having my acute rejection, another thing I need to get scheduled.

I just counted and I have 34 different lab results from this year's annual so far. Quite a few of them have a little red exclamation mark indicating they are out of spec. That's one reason all of my medical is through one Team. My labs look really weird for a normal healthy person, but are routine for me.  Some normal results from this years labs include liver function (yeah), cholesterol, Vit D, testosterone,  and A1C. Magnesium is low, but I would have a hard time supplementing with even more than I do now. I'll look into changing brands a see what happens.  That worked with my Vit D.  I was always low until I found a brand that worked for me.

This post is just kinda rambling on so I'll finish up here. It is awesome to still be here 7 years after my expiration date, not just here but thriving. We are blessed.

Have questions about my medications? Lung transplant annual exams? Lung transplant and Covid now that we have vaccines? Any questions about lung transplant, please ask in the comments or send an email. I'll be happy to give an honest answer from my experience and perspective.

Have a great year.

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.

Vaccine Emotions

There are quite a few emotional roller coaster rides associated with being a lung transplant recipient. The latest one I've hopped on is over the COVID-19 vaccine. I am enrolled in a National Vaccine Research Study for Transplant Recipients that will study COVID-19 antibody levels in transplant recipients who get the COVID-19 vaccine. If I'm going to get the vaccine, might as well donate some data (blood) to science.

Last week the community we live in announced that they will be offering the vaccine sometime soon, then on Christmas Eve we found that the vaccine is scheduled for the 30th. Trigger the excitement emotion. I notified my Transplant Team and the Study Team.  Since it was Christmas Eve, I just heard back from my Team. And... they haven't yet come to a consensus on recommending the vaccine to their patients. Trigger the disappointment emotion. Hopefully they will make a decision soon as I will have to cancel if they haven't come up with a recommendation by Wednesday. I do understand their hesitancy in recommending the vaccine without more definitive data, but it sure would be nice to be able to go our and about again without being as 'at risk' as we are now. 

COVID-19 has been very hard on the solid organ transplant community. The overall mortality rate for someone who has had a transplant and is hospitalized for C-19 is around 20%. Much higher for lung transplant recipients. So yes, a trip to the pharmacy or store has to include a risk/benefit analysis. This is why the anti-maskers and COVID deniers are so dangerous to us. We have to do some things that involve interaction with the public, and their disregard to the most basic public safety protocols puts us at risk.

I could really jump up on my soapbox about the idjits who put us all at risk, but this is not the post for that. This does highlight another emotional part of the vaccine roller coaster, a bit of anxiety about being infected before we get the full effects of the vaccine. 

And no, the vaccine isn't some sort of magical COVID shield. It's 90% effective in healthy individuals, likely less in the immunocompromised. Let's assume it is only 70% effective for us, this still makes us much less likely to be infected by incidental contact with the virus. Add a basic mask (30% effective) and our risk is reduced by 79%. Add in handwashing and social distancing, we can really minimize our risk and be able to see our loved ones and maybe even have a meal at a favorite restaurant. A bit of normalcy will be awesome.

Update: I had to cancel my vaccine appointment for tomorrow.  I had to let them know if my Transplant Team had approved by early this afternoon, and that didn't happen. The Team just doesn't have the data yet to make the recommendation for me. Since I am participating in the ECP Clinical Trial there are other factors that need to be taken into consideration before I get the vaccine.  So back to my cave I go.

Update to my update: Just after posting the previous, I received a call from the Team telling me I could go ahead and get the vaccine. Talk about an emotional roller coaster.

Update #3: Since I am getting the COVID-19 Vaccine tomorrow, I drew my first blood sample for the research study I mentioned earlier.  Here's the kit I received in the mail today:

And here is the video of how to perform the blood draw:

Blood sample is drawn and delivered to FedEx. An interesting alignment of C-19 procedures is happening at the same time tomorrow. We get random COVID tests and ours came up for tomorrow, so we'll get swabbed then injected.

Update #4: I have to admit to a surprising bit of baseline anxiety this morning. I am excited about the opportunity to get the vaccine and maybe get back to normal sooner rather than later. Being amongst the first lung transplant recipients, and likely the first who is also receiving Extracorporeal Photopheresis (ECP) to get the vaccine, does trigger the anxiety snake.  Writing about it helps.

Update #5: We received the first dose of the Pfizer vaccine. Initial side effects... relief, and some hope that we might be able to hang out with our grandchildren this summer.

Update #6: It's coming on 6 hours since my vaccination and all is stable. Temperature, blood pressure, lung function, and heart rate and rhythm are all good to go.  I was a bit tired earlier, and there is a minor amount of soreness at the injection site, but just another Wednesday evening here at Casa JR.

Update #7: 26 hours since the vaccination. So far the side effects are pretty much right in between what I get for the flu shots and the pneumonia shots. The only thing happening is a slightly sore arm at the injection site. It's likely that my suppressed immune system would slow any immune system reaction to the vaccine. I had some concern about any effects my ECP treatments would have but everything seems to be just fine. A bonus about participating in the vaccine research study I mentioned above is that they will give us our test results during the study. It will be interesting to see how my immune system reacts to vaccine over time.

Vaccine Dose #2 - I received the second dose of the Pfizer vaccine today. Hopefully I'm about 3 weeks away from returning to some form of normalcy. For me normalcy means still wearing a mask when out and about and using hand sanitizer/washing hands, but I will be able to go out. That is pretty cool.

So far, about 2 hours post vaccine, the only side effect is soreness at the shot site. It is more noticeable than with the 1st dose.  As with the 1st dose I'm taking Tylenol and Benadryl to help minimize any potential side effects.

Dose #2, Update #1: I had no issues overnight. The only noticeable side effect is soreness at the injection site. It is probably the same as my pneumonia shot, a little more noticeable than after the first dose. 

Vaccine Dose #3 - Today I went in for my 3rd dose of the Pfizer vaccine. Solid organ transplant recipients and other immunocompromised folk are able to get a 3rd dose.  It is important for us as we don't build up antibodies as easily or rapidly as healthy people. While I was there I also received the flu shot.

Eight hours post vaccine I have had nothing noticeable in the way of side effects. Temperature and blood pressure have been stable. I did take Tylenol prior to the shot, and had a Starbucks Refresher after. Haven't taken Benadryl this time around as I no histamine reactions from the 1st two doses.

An Update From the Casa

 It has been awhile since my last update, I'm really sorry about that.

We have been busy and have gotten lots done.  As I've mentioned previously, my Sweetie has Alzheimer's. Her disease has progressed to the point where she really shouldn't be left home alone during my hospital stays. My Team has been really good about letting her stay with me when I am at my home away from home, but it is hard on her and adds stress to both myself and my Team.  So... we've moved into a retirement community. Our new home is at Atria Canyon Creek in Plano.  As you can imagine, there was a lot of emotions involved with the idea of moving and the process of packing and the move itself, but now that we are here my Sweetie is enjoying our new home. I've also hired some homecare help. Right now we have someone in once/week for 4 hours in the morning. This is to help my Sweetie get acclimated to having someone else around helping with our routine. If needed, we are set up for daily help.  Two shifts at four hours each.  First shift in the morning and second in the evening to help ensure V (my Sweetie) gets her meds, eats, can watch her shows on TV and get to bed. Financially this puts us at our very limit, there is zero money for anything else but the amount of stress that has been taken off of my shoulders from worrying about V and her future is well worth it.

Health wise I am doing very well. The Extracorporeal Photopheresis (ECP) Clinical Trial has stabilized my chronic rejection. I really surprised myself during the move by being able to do much more physically than I imagined I could. Our daughter really helped us out by sending a person to help pack out the kitchen and providing movers to move the majority of our stuff. We did move a few Jeep loads by ourselves and I packed the rest of the house and unpacked everything. I had an issue with inflammation affecting my lung function (likely due to stress) so did a steroid taper.  A week or so after the taper I started having a real hard time getting good numbers when doing my daily lung function testing.  All of my other vitals were good. No temperature, blood pressure and heart rate were good, and home EKG was normal (for me).  My incentive spirometry was down a small amount, but not by much. So I worked on getting my lung function up, blowing spiros and using my incentive spirometer throughout the day. I started having muscle spasms in my mid back and my diaphragm felt like it was being pulled up. These are some of the symptoms I had when the upper lobe of my right lung was collapsing (happened 4 times before it became a permanent thing). So I went into the Clinic for an X-ray and spirometry.  My clinic spiro was great and my lungs looked really good. After some investigating it turns out that my home spirometer was failing and that I had irritated my diaphragm and caused the strained/spasming muscles through effort. I'm still sore but with a new spirometer not worried :) I've always depended on instrumentation and the data it provides in my professional life and my health journey.  It's really bothersome when instruments fail me.  On a bright note, It is kind of cool that I've outlived my spirometer.

I was able to (virtually) attend an Advanced Lung Disease medical conference last weekend.  If you are an organ transplant recipient, or are around someone who has received an organ transplant, please continue to be very careful and aware of COVID-19.  Despite what a lot of the click bait opinion sites state, C-19 is devastating and especially hard of the solid organ transplant community. Take care out there. We haven't gone through what we have, and do what we do, to be taken out by a virus that can be contained if everyone would just try to help out and contain it.

Thanks for reading, appreciate you.

 

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.

ECP Trial News

Back in July I mentioned that I had been accepted into the observational arm of a clinical trial involving Extracorporeal Photopheresis (ECP).  This is a Medicare study to show ECP works well enough that the procedure can be covered by Medicare. I was a bit disappointed that I wasn't getting the treatment, but happy to be contributing to the trial.

I am very happy to report that I was transferred to the treatment arm of the trial and finished up my third cycle of the treatment. It feels pretty awesome to be receiving a treatment that may slow my chronic rejection.

A quick recap and explanation about my rejection.  There are two kinds of lung transplant rejection, acute and chronic.  Here is a quick description of lung transplant rejection.

Acute rejection often comes on quickly, and can be usually be treated.  I had a pretty severe acute rejection about a month after my transplant. The rejection was triggered by a Coronavirus and took some pretty intensive in-hospital treatment to recover from.  I have an awesome Team, they took care of that issue, and the myriad of others that followed.

A chronic rejection may come on slower, and has far fewer treatment options. My chronic rejection was triggered by getting stomach contents in my lungs. We treated for acute rejection and performed a Nissen Fundoplication. The rejection slowed, but continued.  Once diagnosed with chronic rejection I went into the hospital for a Thymogobulin Treatment. The Thymogobulin reduced my T-Cell count from over 1600, to less than 30 cells/ul.  The Thymo did a nice job of stabilizing my rejection.

My highest post transplant spirometry included an FEV1 of over 5.8L.  FEV1 is the amount of air I can forcibly exhale in one second. My current FEV1 is around 2.0L. This puts me in Class 3 rejection.  Specifically Class 3 BOS.

From the rejection link above:

Over time, you may develop slowly worsening, chronic rejection called chronic lung allograft dysfunction (CLAD). A common form of CLAD is called bronchiolitis obliterans syndrome (BOS)...

So I'm rejecting, it's progressing (slowly), and I'm in a clinical trial of a treatment that has been shown to slow the progression of the rejection.

Extracorporeal Photopheresis is a procedure that involves removing 1.5 L of blood, separating the white blood cells from the red, treating the white blood cells with a medication then hitting them with UV light.  The whole batch is returned with a bit of saline to keep things flowing smoothly.

Here is a good explanation of the procedure and how it helps with chronic rejection.

This shows the results of an earlier trial of ECP, and why we have hope that this is going to help keep me healthy.

I've had 6 treatments in these first 3 cycles.  Only noticeable side effects are lightheadedness during the procedure, very sensitive to light after the procedure (increasing with each procedure), and tiredness for the rest of the day.

Now it's up to me to keep myself healthy during the current Cold/Flu/RSV season.

My ECP Team

ECP Trial Update

Yesterday I mentioned that my Team had requested that I be evaluated for participation in a clinical trial using Extracorporeal Photopheresis to help slow the progression of chronic rejection.  A lot has happened since then.

I received a call from the ECP team at UTSW early this morning and was sitting in an exam room by 10:00.  There was a physical exam checking vitals and to see if I had good veins (I do), then I met with the team and we went over the trial. We talked about the goals of the trial, how photopheresis worked, and the potential negative effects of the procedure. I filled out a quality of life survey (these have really improved over the past few years and applied to participate in the trial.  There are two arms to the part of the trial I qualified for. One arm receives the treatment, and the other is the observational arm.

 I got a call this afternoon and... I've been accepted into the trial as part of the observation arm. Not quite what I was hoping for, but I am still a part of this important trial. Also, if my rate of decline increases I could be transitioned to the Treatment Arm. So treatment is still a possibility for me.

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. 

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.