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.

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.

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.