Monday, January 11, 2021

Lung Transplants and Self Image

 I saw this beautiful post on Facebook that both celebrated a two year anniversary and talked about body image with a post transplant body. Shared with permission.


 




Kassandra's post got me to thinking about my own body and self images. It also got me thinking about how the procedures I've undergone, and the medications I take, have changed my body.

Each of my scars is a story. They are a permanent journal of my VATS Biopsy, my lung transplant, and my Nissen Fundoplication. They pair  nicely with my earlier scars, keloids from burns when I was 4 years old, scars from a motorcycle wreck or two, and playing sandlot football. Like Skillet sings in their song "You Ain't Ready",  "What doesn't kill me makes me who I am". These scars and my tattoos are a good visual record of who I am.


This is me still swollen from my lung transplant. I had to lose a lot of weight to be transplanted and at the time of my surgery I was still heavy, and being swollen kinda makes me look like a grape. After my procedure I continued to lose weight until I got to a healthy goal.  

Here I am healed and at (or at least near) my goal weight:


 As you can see, lining up my nipples wasn't a very high priority when they put me back together 😎 what you can't see is that the nerves to my nipples are damaged and they are always sore. Loose fitting shirts with stiff/rough fabric really bothers them and some things that used to be very enjoyable can now be quite painful. Another thing you can't see is how they lined up my ribs after the procedure.  My left side is perfect. I can tell where I was split, but even by feeling most people probably couldn't. My right side is a little out of line. If someone looks for it now they could probably pick it out, if they felt for it they would definitely be able to tell. I can also feel my Clamshell Sternometry Wires. None of this is a big deal and sure beats what would have happened without the transplant.

My intent with this post was to follow Kassandra's example and share some of the post transplant realities that do have an effect on my self/body image. 

I spend one heck of a lot of energy trying to appear 'normal' when out and about. Losing 60% of my post-transplant highest lung function due to my chronic rejection is hard to hide. I walk slower than most, and if I try to walk faster I end up out of breath and having to take a break. I'm also about 15 pounds heavier than where I look and feel at my best.  My team wants this weight so when things go sideways for a bit I have the energy reserves available to comfortably get to the other side. 

I guess that the main thing that bothers me is my voice. Between the transplant, all the bronchoscopies, and the various other ...scopies with cameras and probes down my throat, my voice isn't what it should be. Phone conversations and even some in-person conversations can be difficult. My voice is the one thing that I am really self conscious about.

I've lost a lot of bone density due to the meds and I'm over 1" shorter than I was pre-transplant. The prednisone has made my skin pretty thin, and avoiding the sun makes me pale. I'm on Warfarin since the Pulmonary Embolism, so when someone misses an IV poke, the blood splotch can last for over a month. My spleen is enlarged, it's grown enough that you can tell just looking at me if you know what to look for. We're not sure what is causing that, but not much to do about it at the moment. So if someone's paying attention, they can tell that I'm not 'normal' healthy.

Like Kassandra mentioned, acne is a thing with the meds. I get it on my face and chest. Sometimes it's painful acne

In reality, any body or self image issues I may have after my transplant are insignificant compared to life before transplant. I almost feel guilty talking about them, almost like I'm disrespecting this wonderful gift given to me by my donor family. I am alive, and I am in much better shape than I was for at least a year prior to my transplant. I'm able to take care of my Sweetie and share in our children's and grandchildren's lives. Life really is good, and even though I'm not 'normal' healthy, I am enjoying being post-transplant, on long term steroid and immunosuppressants, and being treated for chronic rejection healthy 😎

Monday, January 4, 2021

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.

Monday, December 28, 2020

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 noticable 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. 


Sunday, December 13, 2020

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.


 

Monday, August 3, 2020

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.

Sunday, January 26, 2020

Pulmonary Embolism - My Latest Adventure

2019 was a really good year for me health wise.  Yeah, I have chronic rejection, but I did not have an overnight stay in the hospital all year.  That streak recently ended in a big way with an ambulance ride to my hospital.

The Cliff Notes version is that I had a Pulmonary Embolism (blood clot in my right lung).  My Team decided to clear the clot using Thrombolysis to deliver medication via a catheter right to the clot in my lung.  This resulted in a two day stay in the ICU and quickly cleared the clot. I spent a few more days in the hospital while they got me stabilized and am now back home. I'm a bit wrung out, but not much the worse for wear.

Now for the long version if you are interested.

The day of my Pulmonary Embolism (PE) started out just like any other day. Woke up, took meds, did computer stuff and took more meds.  I took a shower, shaved and all that stuff with no problems.  It takes a little longer to get that routine done due to the rejection, but this did not take any longer or use more energy than usual.  We went to lunch and on the way I stopped for gas. Other than a vagrant hassling me a couple of times, getting gas was issue free.  We went to Raising Cane's Chicken Fingers for lunch, and this is where the issues started.  I got very out of breath just walking from the car into the restaurant. I ordered and sat down.  When I went to pick up our food, I could hardly make it back to the table I was so out of breath.  I asked my Sweetie to get to-go boxes as I wanted to get the heck out of there.  By the time she got back to the table I was feeling a little better and tried to eat.  I got one chicken tender down before I had to go.  By the time we got home, I felt better, but still a bit out of breath.  I took my vitals and my pulse was elevated into the mid 120's, blood pressure was pretty much normal, and my spirometry was normal.  The normal spiro confused me, I thought I was having an acute rejection episode going on.  I called my Team and they said to come into the ER.  It's been so long that I've spent an overnight in the hospital that I didn't have a go bag ready.  I went to get some stuff gathered and started having a really hard time.  My heart rate went up to over 150 and I was scary out of breath.  There was no way I could drive so called 911.  The 911 operator was awesome. Lots of people can't understand me over the phone in the best of times, she got everything perfect, the first time. You may be wondering why my wife wasn't helping me more, she has Alzheimer's and was doing her best to keep me comfortable and help out.  When the ambulance and fire truck arrived, I explained that I had to go to UT Southwestern and asked if my Sweetie could ride with us. They said yes to both which took a huge load off of my mind.

When we got to the ER they did the routine ER stuff.  My team had already been in contact with the ER doctor and they were ready for me. I was sent for a CT of my lungs with contrast fairly quickly. My daily at-home vitals and spirometry, and the data I got prior to calling the ambulance, helped them narrow down the possible issues quickly and I did not have to have a bronchoscopy to rule out acute rejection.  The CT Scan showed:
There is an acute branching moderate-sized pulmonary embolus in the lateral and posterobasilar segmental arterial branches of the right lower lobe.
Basically a blood clot in the lower lobe of my right lung. While in the ER we did an ultrasound of my legs to check for DVT blood clots in my legs.  There were none. A room opened up for me and I left the ER for the 10th Floor.  The 10th floor at UTSW is my home away from home.

Since I'm a lung transplant recipient, it is important that we quickly clear the clot. I was placed on an IV of Heparin and scheduled for Thrombolysis.  Basically a catheter was inserted into my Jugular Vein, through my heart and into my Pulmonary Artery. The catheter was guided to the clot so medication could be administered right on the clot. The medication (tPA) was delivered through the catheter and Heparin was delivered via a sheath around the catheter.  Now comes the rough part of this episode.

I was transferred from surgery to the ICU with my own nurse and everything.  The major concern while receiving this clot buster medication is bleeding.  Bleeding can happen anywhere so I was pretty much continuously monitored. Every half hour I had to answer questions about where I was at, what month/year it was... for signs of bleeding in my brain. All this time I am a bit out of breath and I have to admit that panic/anxiety tried to take over a couple of times through the night.  An Ultrasound Tech came in to check for clots in my arms and shoulders and this really helped to break the cycle of panic and I was able to keep it from taking over.  I was scheduled for them to go in and see how the clot was doing first thing in the morning.  About an hour before I was supposed to go down for the procedure, I experienced severe nausea.  Dry heaving over and over again.  The regular anti nausea med didn't help much, but the second one took care of the issue and I was fine by the time I got back to surgery. When they went in to look at the clot it was gone so they were able to remove the catheter.  That was a huge relief.  One more night in the ICU for monitoring then I was back on the floor.

The goal when I got back on the floor was to get my Warfarin dose right to keep my INR in the therapeutic range.

From ambulance ride to ride home was Saturday to Saturday.  I have a new med and new labs, but I'm not much worse for wear.

Like Skillet sings in the song "You Ain't Ready":
"What doesn't kill me makes me who I am"
I am very thankful to my donor family for the gift of these lungs that have done me so well for the past 5 years, for my Team who work so hard to keep me healthy, and to the Lord for making everything right.

Thursday, December 5, 2019

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

Wednesday, October 9, 2019

Checking In

I sure am slacking on writing posts.  No particular reason other than not sure what to write about that's new information that might be of interest.

I am kind of excited that it's coming up on a full year since I've been in the hospital. Excited and a little superstitious about mentioning it.  About this time last year the upper lobe of my right lung collapsed several times and we never did figure out why. There is permanent damage to that part of my lung, but it has not progressed.

I went to my once every 3 month check in with the Team on Monday, and everything is stable. X-ray results indicate "Postsurgical changes of bilateral lung transplant. No cardiomegaly. No effusion, pneumothorax or focal consolidation. Stable right apical pleural-parenchymal thickening. No acute osseous findings." and all of my labs look good. The medications have been rough on my kidneys and my Creatinine levels run high and I remain well within my normal band, 1.58 mg/dl this time.


We were fortunate enough to be gifted tickets to one of the last Ranger's games at the Ballpark in Arlington. Wearing SPF 100 and brought my own shade. We were also able to carry in several liters of cold water and had a great time. That's my best friend next to us. When so many became distant when I was really sick, Saul stood with me. I really appreciate that guy.

If there is anything you would like me to write about, or have any questions, write them down in the comments. I'd be more than happy to answer.

Tuesday, July 9, 2019

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.