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.

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.

Faith is my Anchor

My faith isn't something I've often mentioned on this blog. I felt that talking about faith or politics might take away from the health and medical information I am trying to share with the transplant community. My faith is an important part of my life, and is the anchor that helps me to weather the storms that are part of the lung transplant package.

My walk with God has taken quite a few detours, but our Lord has always accepted me back. I’m sure most of us have seen the “Footprints in the Sand” poem on a card or poster. The author of the poem wrote about walking along the beach with our Lord and when looking back noticed that at their darkest hours there was only one set of footprints in the sand. When asked why there was only one set of footprints during their darkest days, the Lord answered, “When you saw only one set of footprints, it was then that I carried you”. In my case the single set of footprints was when I was off chasing something shiny or splashing in the waves or playing on the rocks. God never left me, but there were times when I sure did get distracted.

Receiving a bilateral lung transplant is a blessing, a true modern day medical miracle. I am here today due to a precious gift from my donor family, the skill and dedication of my transplant team, and the Grace of God. Each and every breath is a blessing.

If you've followed this blog, you know that my transplant has come with physical challenges. I’ve had a moderate/severe acute rejection, I’ve had a UTI go septic, I’ve gotten stomach contents in my lungs that triggered my chronic rejection. I’ve had a Nissen Fundoplication to prevent that from happening again. I’ve had a procedure that killed off my T-Cells to try and stop my chronic rejection. The procedure wasn’t as successful as we would have liked so I’m in a clinical trial that’s changing the DNA of my white blood cells. One side effect of the clinical trial was a bad pulmonary embolism (is there such a thing as a good PE?) and another was hard to control blood pressure. The upper lobe of my right lung has collapsed 4 times and we couldn’t get it reinflated after the last collapse.  As most of you know, my most recent challenge was COVID. All told I’ve been in the hospital a lot, and the ICU three times.

How have I remained resilient and positive after all of these challenges? First is my faith. My faith in our Lord Jesus is stronger now than ever.  My life is in his hands, and as I mention often, every breath is a blessing. My wife is another source of strength. She has Alzheimer's and the two of us make an awesome team. She has been with me every step of the way. The social isolation due to COVID was hard on my her and her disease started progressing fairly rapidly. Finding, and being able to move into our senior community has been another blessing, and an answer to prayer.

Speaking of COVID... that is one scary diagnosis for anyone with transplanted lungs. The mortality rate for lung transplant recipients pre-vaccine was around 40%, and those who survived usually had damage to their new lungs and and other major issues. 

You can imagine my thoughts after I got the notification of my positive test. As our daughter drove me to the ER, I was more concerned than scared. I was thinking of my Sweetie and her future care. Under normal conditions, my Team would let her stay with me in the hospital, that was not possible with COVID. Thankfully our daughter was able to cancel a couple business trips and stay with her. 

While in the hospital I was reading through the New Testament on my Kindle and the Lord highlighted a couple important lessons for me.

Matthew 6:34 “Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.”

My Team and I had planned on my coming home after 5 days in the hospital. Things seemed to be going well until my CT scan on Day 4. We found that the virus had started effecting my lungs, so it was going to be another 5 days at least. I was reading James, and this really hit home.

James 4:13-15 “13 - Now listen, you who say, “Today or tomorrow we will go to this or that city, spend a year there, carry on business and make money.” 14 - Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes. 15 - Instead, you ought to say, “If it is the Lord’s will, we will live and do this or that.””

By the 8th day I started hoping that I’d get out soon. We had one little scare that turned out to be a malfunctioning meter. My lung function was stable and I was off of supplemental oxygen, it seemed all was going well and on 'my' schedule. That was until chest X-ray results from the morning came in. The X-ray showed that I had a pneumothorax on my right side. A pneumothorax means I had air trapped between my lung and chest wall. There were a couple of options for removing the air, the most likely being inserting a chest tube for a few days. That was disappointing to say the least. I spent the afternoon thinking, praying, and continuing to read the bible. The next morning came and the my daily X-ray was taken and it looked good to me, but I’m not a radiologist (I have literally seen 100's of my own lung images though). When I spoke with my doctors that afternoon they mentioned that the pneumothorax had disappeared, gone, no evidence that it had ever been there. They were surprised and said they didn’t know how that happened. I told them it was prayer. I was discharged on the 10th day and my Team is very happy with my recovery. We are still working on some minor issues, but I feel great.

Our God is an Awesome God. The same God that created our universe loves each and every one of us. He loves us so much that he sent his Son Jesus to walk among us, teach us, and most importantly to die on the cross for us. Jesus is our redeemer. His blood washes away our sins and through Jesus we can have eternal life in heaven.

I was raised up a Lutheran and baptized as an infant. While I was in the Navy I became an Episcopalian. I drifted away from attending church until we moved to the senior community. My Sweetie and I met Maurice and Billie at dinner. We started a friendship and Maurice invited us to Hunter’s Glen Baptist Church where we've became members. This past Sunday I'm very honored to have been baptized as an adult by my good friend and mentor, Maurice.

If you have read this far, awesome and thanks. If you have any questions or would like to know more, just ask in the comments or shoot me an email.

SARS-COV-19 (COVID-19) With a Lung Transplant

This is the view from the UT Southwestern Clements University Hospital 12th floor. The 12th floor is the COVID floor, and it is where I spent most of the past couple of weeks.

 In an earlier post, Vaccine Emotions, I mentioned "And no, the vaccine isn't some sort of magical COVID shield. It's 90% effective in healthy individuals, likely less in the immunocompromised." I wrote that post back in December when I received my first dose of the Pfizer COVID vaccine. I had been accepted to be part of the National Vaccine Research Study for Transplant Recipients and three months after my second dose of the vaccine I had not yet build up any spike protein antibodies. This did not mean that vaccination was not effective, just that the immunosuppressed may not develop the same response as people with a healthy immune system. Our hope is that the the vaccine did activate Memory T and B cells. I tried to talk my team into a third dose of the vaccine after my 3 month post vax labs came back negative, but they were reluctant to approve it due to lack of data on the effects of a third dose.  Thing change rapidly as more information and data comes out, and my Team is now helping us get the 3rd shot.

I have not yet received the third dose because... I was infected with the SARS-COV-2 (COVID-19) virus. I thought I was coming down with a Summer Cold. Standard protocol for me and colds is a steroid taper and antibiotics. So I contacted the Team and went in for a PCR just to verify it was a cold and found that nope, I hit the COVID lottery.

Since I thought I had a cold, I was taking Coricidin HPB. My symptoms while taking the cold medicine were an elevated temperature, cough, upper respiratory irritation, and diarrhea. My SpO2 dropped a bit and when admitted to the hospital I was placed on 2 liters of supplemental oxygen. 

I spent 10 days in the hospital, and a hospital stay with SARS-COV-2 (C-19 from here on) is not even close to the my experience with any of my other post transplant hospital stays.  My transplant team was in charge of my care, which was a great comfort to me, but I was not on the lung transplant floor.  I was on the C-19 floor, as expected. The floor was full and the staff busy. Some of my nurses/techs have been on the floor since the beginning, others came to the floor right out of nursing school. One of the common traits of my nurses was honesty. If you ask a question, you are going to get a direct and honest answer based on experience. I really appreciated this. Personal contact with doctors is rare when you are on a C-19 floor. A doctor never entered my room, all my contact with my Team was via phone or video chat. This is very understandable as my Team sees lung transplant patients on the 10th floor. It would be irresponsible to expose them to any additional COVID risk.

My course of treatment included two treatment cycles of Remdesivir (10 total infusions), a steroid taper followed by pulse steroids followed by my current taper, and Convalescent Plasma. Why plasma instead of monoclonal antibodies? Well, the monoclonal antibodies were our first choice but this therapy is not approved for inpatient treatment. The hospital and my Team (who are very good at getting approval for off label use of necessary meds) tried to get the treatment approved, but could not. We went with the plasma, and in my case, it appears that convalescent plasma is effective. This highlights how important it is to pay attention to your body, get tested if you have any symptoms, and start treatment early.  The effectiveness of either monoclonal antibodies or convalescent plasma is significantly increased if used early on in the course of the disease.

I assume that any transplant recipients reading this have received the COVID vaccine. If someone has received the life saving donation of an organ, and not yet availed themselves of the vaccine, I really would have to wonder why? Pre-vaccine immunosuppressed people had a very hard time with this disease, the vaccine really can and does make a huge difference.

I had some ups and downs while in the hospital, but the end result is that I am home and doing well. I'm taking Nystatin for a yeast infection and will start a couple days of Lasix for swollen legs. I'm on room air and my pulse ox readings are normal and stable. Even my home spirometry remains normal. My hospital CT scan identified potential long term issues and we will be following up and keeping an eye on things.

To give you some idea of just how busy hospitals are on their COVID floors/wards; as soon as my discharge orders came in they started clearing out my room and getting ready to clean/sanitize it for the next patient who had been waiting in the ER.

A bit more in support of the C-19 vax. My wife has Alzheimer’s and we are rarely more than 6’ away from each other. We eat, sleep, sit and shower together. We were also vaccinated together. Even though my suppressed immune system allowed me to catch C-19, my wife did not. Vaccines really do save lives.

Ten days on a C-19 floor give a person plenty of time for reflection, prayer and reading the Bible. I am blessed in so many ways. I have a wonderful wife and live in community that supports the both of us. I am still here 6 years past my expiration date and each challenge we have faced over these years has been met with faith and the skill of my wonderful Team. Like Skillet sings in the song You Ain't Ready, "What doesn't kill me makes me who I am".  

If you have any questions about my experience with COVID so far, please ask.  I'll do my best to answer in the comments.

Being a lung transplant recipient, with CLAD BOS-3, on Extracorporeal Photopheresis who has had SARS-COV-19, gives me the opportunity to participate in a couple more clinical studies.  One of these days I'll have to write a post on all the studies/trials I've been a part of over the years.  I've commented in the past that I wanted to be the subject of one of my Team's papers, but now I'm not so sure :)

Have an awesome day my friends.

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 😎

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.

COVID-19 and Lung Transplant