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.

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.

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

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

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

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

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

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

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

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

Fourth Annual Post-Transplant Exam

On January 1st I celebrated the fourth anniversary of my lung transplant.  Four years of new life thanks to the wonderful gift from my donor family.

With each anniversary, comes my annual post-transplant exam. The annual exam is basically a very thorough physical. The test/exams for the day included labs (14 vials), a CT of the chest, ultrasounds of my heart and abdomen, a bone density test, chest x-ray, a 6 minute walk test, arterial blood gas, a couple pulmonary function tests, and a physical exam.

The lab results were routine.  My white blood cell count is a little high, 7.09x10(9)L. We prefer it to be a point or two lower and will adjust my meds a bit to get it down.  My Creatinine, an indicator of kidney function, is high but not higher than what has become normal for me. I average about 1.4 mg/dl creatinine which indicates how hard the meds are on my kidneys. Other than that my labs were all good.  Immune system properly suppressed, cholesterol and A1C are normal. and liver function is good.

My bone density exam showed the the meds continue to demineralize my bones.  I've lost between 17 - 19% of the bone mineral density in my hips since my transplant. I'll be seeing my Mineral Metabolism Doc next month.

Now we get to the part of the exam that shows the condition of my lungs and progression of my chronic rejection. The X-rays, CT of my chest, and full Pulmonary Function Tests offer a solid picture of where I stand at the moment. You have to look at all three together to get the full picture.

From my X-ray:

Lungs and pleura: Stable right upper lobe volume loss with underlying bronchiectasis noted. Mild right middle lobe volume loss seen. No acute consolidation.

From the CT:

IMPRESSION:
1. Complete right upper lobe collapse with mild bronchiectasis as before. Stable mild bronchiectasis and volume loss of the middle lobe. No endobronchial mass identified.
2. Air trapping on expiratory phase images is suggestive of small airway disease such as bronchiolitis obliterans.
3. Near complete resolution of previously noted groundglass opacities at the lung bases with few residual groundglass and reticular opacities at the left costophrenic recess.

And from my PFT's:

Forced expiratory flows are severely reduced with a moderate reduction in the forced vital capacity.
No bronchodilator response
Lung volumes reveal a normal total lung capacity with incomplete exhalation of the vital capacity and trapping of a large residual volume
Diffusion capacity is moderately reduced
Sever obstructive ventilatory defect with air trapping and impaired diffusion. COPE/Emphysema. Vascular disease, Bronchiolitis cannot be excluded

The most interesting part of these results relate to my collapsed lung. I have been having issues with the upper lobe of my right lung collapsing.  We've been able to get it reinflated a couple of times, but it appears that it is going to be collapsed more often than not.  What is new in these results is volume loss in my middle lobe.  That's not at all what I was expecting, and a bit disheartening.  I'm not quite as stable as I had hoped.

The air trapping noted in these findings is indicative of my chronic rejection. The air trapping combined with the >50% loss in lung volume from my highest results shows the progress of the rejection.

The good news about these results is the 'Near complete resolution of previously noted groundglass opacities..." This indicates that we have addressed the unidentified infection that was previously an issue.

So the end result of this exam is that we will be adjusting my meds a bit to drop the WBC, and I'll be using Acapella airway clearing device along with my incentive spirometer each day to potentially help with the collapsing lung.

Update: My goal after this visit is to stay out of the clinic and hospital until my next quarterly exam :)

Since every blog post needs an image, here is the box we sit in for our full pulmonary function tests.

Image found here

Update: I've increased my CellCept to 1500 mg twice/day and I'm a line item topic of discussion for the Team's weekly meeting next week. They are going to attempt to refer me to Extracorporeal Photopheresis again, but it is not likely it will be approved by Medicare, again.

Post-Hospital Update

Thursday was my two week post-hospital followup visit with my Team.  The reason I was in the hospital is that the upper lobe of my right lung had collapsed for the second time. The first tine it collapsed, it re-inflated during a bronchoscopy. The second time it collapsed we couldn't get the issue resolved during my hospital stay and I came home with the very good possibility that this was my new normal.

My home therepy included a 60mg prednisone taper, three weeks of oral antibiotics and using an incentive spirometer.

During the two weeks following my hospitalization my home pulmonary function testing (PFT) results improved to my pre-collapse capacity and I feel much better.  I was looking forward to seeing my X-rays and wasn't too surprised to find that my lung has done a good job of recovering.  It's not fully inflated, and you can tell that there are issues, but it is much better than when I left the hospital.  We still don't have a good explanation for why it collapses, or why it has re-inflated.  Our working theory at the moment is that during a transition off of an antifungal mediation my immunosuppressant medication levels got out of balance for a few days resulting in a rejection episode.

Visually, the tissue in that area is more white than pink indicating to the Team reduced blood flow to that lobe. My next annual series of testing is in January. The VQ scan should have some interesting results.

My current plan is to monitor the issue.  I continue to perform daily PFT's (as should all lung transplant recipients) and will be having chest X-rays every 2 weeks or so for awhile.

On a side. and likely related note, the Doc mentioned that my chest muscles on the right side are shrinking.  He's not sure why atrophy is only on that side, more interesting stuff.

I couldn't find an image of an X-ray similar to mine, so here's one of me trying on a silly Christmas jacket.

12/5/18 - X-ray results from my visit: 

1. Right upper lobe bronchiectasis and partial collapse, with probable improvement in aeration since 11/13/2018. 

 2. Prior densities in the left lower lung field have also improved.

"Improve..." used twice in one reading.

Clinic Update - 6/1/17

Today's clinic visit included the usual labs, chest x-ray and spirometry. I also had a CT scan and Ventilation Perfusion scans.

On a positive note, my lung function was statistically the same as last week.  This is the first time that it hasn't fallen in consecutive visits.  Now, it was only a week between PFT's, and I have been working on conditioning this week, but no notable loss is great news.  I'll take it.

The x-rays looked good.  The results of the scans were not in yet, but I could see changes in my VQ scans.  Surprised the tech that I could knowledgeably talk about what was showing on the screen.  I've spent a lot of time looking at my past VQ scans recently.

When I sat down with the Team, we performed a trend analysis on several data set and found some interesting information.  We looked at immune system function, white blood cell count, medication dose history, PFT results,  tacrolimus levels in my blood, time switching from brand name to generic meds and other lab results.  Other than PFT's and other indications of rejection, the individual labs and tests were all in a standard and very acceptable range.  But when we overlapped the charts, we found that at the same time as my problems started, trends in immune system activity and medication levels were also moving.  My tacrolimus (Prograf) levels are in the correct range for individuals two years post transplant, but, obviously too low for me.  Same thing with my immune system.  It is high normal for someone at my stage post transplant, but too active for me.  So we are increasing my Cellcept and Prograf daily doses.

More meds = more side effects = more work on my part to counter the side effects.

I think I remember this line from Old Yeller, but others attribute it to John Wayne:

"A man's got it to do what a man's got it to do."

I should have the results from the scans on Monday or Tuesday, then back to clinic in two weeks.  Hopefully we'll see some improvement in lung function.

On a side note.  A couple of the docs on my Team went to the ATS annual meetings recently.  It's fun to see them re-energized.  They have one heck of a workload and I'm really impressed with their empathy and knowledge of us individual patients.

Edit to add PFT results for the past year. Everybody likes pictures :)

Upper GI (Endoscopy) Results - 3/23/17

Went into my 'home away from home' for the Upper GI yesterday afternoon. The endoscopy team was running a little late as they had an emergency issue earlier in the day that put the scheduled appoints behind. Very understandable in a hospital setting. As I told the doctor performing the procedure when she was apologizing "I've been the reason for delays, so can't really complain". Turns out the doctor that did my procedure was one of the liver transplant docs. That's kinda cool.

First, an Upper GI is easier than a bronchoscopy, probably on par with a colonoscopy (not counting the whole colonoscopy prep part, really dislike the prep).

When we were in the room getting ready for the procedure, and the nurse was applying all of the electrodes, she noticed how light my transplant scar is. Next thing I know everyone is around me looking at my scar.  They were all really surprised at how light it is.  I get that a lot, especially when I'm up on the 10th floor.  I credit bone broth.  One of the things I do to counter the affect my meds have on my skin, bones. muscle, and digestive system is drink homemade bone broth almost daily. Seems to at least be helping my skin.

Rolled over on my side, put the mouthpiece in, they started the anesthetic, and then I woke in recovery. I came out of the Propofol quickly and easily.

The Doc came in and we talked about her findings and she commented on her surprise that my stomach was as large as it was. She said I had a large stomach for such a lean guy. When I told her that I had lost 140 lbs from my heaviest she said "...that explains it".

Findings:
The Z-line was regular and was found 40 cm from the incisors.
The esophagus was normal.
A few less than 5 mm sessile polyps with no bleeding and no stigmata of recent bleeding were found in the gastric fundus.
Mildly erythematous mucosa without bleeding was found in the gastric antrum.
Biopsies were taken with a cold forceps for histology.
Mildly erythematous mucosa without active bleeding and with no stigmata of bleeding was found in the duodenal bulb.
Estimated Blood Loss: Estimated blood loss was minimal.

Impression:
- Z-line regular, 40 cm from the incisors.
- Normal esophagus.
- A few gastric polyps. Fundic gland polyps associated with proton pump inhibitor use.
- Erythematous mucosa in the antrum. Biopsied.
- Erythematous duodenopathy.  

Recommendation:
- Await pathology results. Treat if H pylori positive.
- Continue present medications (PPI daily).
- Return to referring physician as previously scheduled.

Biopsy results:

FINAL PATHOLOGIC DIAGNOSIS 

Stomach, biopsy:
-No significant abnormality

It looks like we can go ahead and schedule the Nissen Fundoplication  surgery, Want to bet it's next Wednesday? I have something tentatively planned for Wednesday so  that'll be the day I'm sure.

Bronchoscopy Results - 3/15/17

My Team got together this evening to go over my Bronch results. Have I mentioned that my Team is pretty awesome?

One of the doctors called and we have a solid plan.  On Tuesday we had decided to go ahead and schedule a hospital stay to undergo treatment to try and stop my lung decline.  After Tuesday's Bronch, they have decided to go forward with the Nissen Fundoplication first.  They agree that a feeding tube is not necessary (yeah)

Here are the results from the fluids obtained during the Bronch.

Now we are going to schedule the Nissen procedure as soon as we can. I'll probably go in on Friday or Monday.  If I continue to have issues after the procedure, then we'll proceed with the treatment.

Hospital Followup - 3/7/17

It's been a long day at UT Southwestern.

Started at 7:30 with the routine X-Rays and labs, then up to see the Transplant Team.

We take care of getting my vitals, then off to Spirometry.  The last few times I did my PFT, we had a new tech. She has moved on to a different department so my original tech was back behind the machine.  It has been awhile since she's done my pulmonary function testing, and I could see the shock on her face after my first test.  My function has dropped that much.

My lung function is still very good for transplant due to IPF, just trending in the wrong direction.

We talked about how the reflux might be causing this, but there is none of the damage you would expect to see.  The HRCT, x-ray, and bronchoscopy all look good.  We don't have any environmental changes at the house to focus upon. I use the best furnace filters and run a HEPA filter in the bedroom.  Labs show my Creatinine trending a little high, but that has to do with how much water I've been drinking and wouldn't affect lung function. Cultures have all come back negative so no infection or fungus. Process of elimination is leading to the reflux.  

We went over some of the other tests/studies I did in the hospital. There are a couple of more we have to do to develop the 'big picture'. Some interesting stuff, but I want to have all the data before I share.

Then we were off to the hospital for the Esophageal Motility and PH Impedance Studies.  As I mentioned in an earlier post, the results of these tests will determine weather I have a permanent feeding tube installed, or have a Nissen Fundoplication surgery. 

I was fairly sure that it would be the tube as I came home from the hospital with a feeding tube, that became much less likely today. The very prelim, very unofficial results are that the muscles in my esophagus are working well. I do have a Hiatal  Hernia that explains the reflux. I'm doing the PH Impedance test overnight, but that's just to determine the extent of the reflux.

Back to the Clinic next Tuesday to go over today's results and finalize the plan for getting this issue resolved.  

Then I can get back to talking about kettlebells :)

Monday Macros - The Hospital Edition 2/20/17

Monday Macros.

Weight = 152. Weight gain this period = 1 lb. Total weight loss = 99 lbs. Macros for the week = Carb/Fat/Prot - 14/59/27%. Daily avg cals = 2.234. Body Fat = 12.1%

Monday began with taking my vitals, eating a quick breakfast and heading into the Clinic.

I have continued to experience the decline in my lung capacity that I reported back in December. The steroid pulse that we did really didn't do much to stop the progress of the decline.  I should have been back in Clinic in early January, but found I had an insurance 'issue'.

It's a long story but I've been fighting for insurance for the past month and a half.. It took a visit to my Congressman's office, intervention by my State Senator and lots of help from the TX Dept of Ins to get things straightened out.  As of Mon, I have insurance retroactive back to Feb. 1st.

At Monday's Clinic visit we decided that I needed to be admitted so here I am at UT Southwestern University Hospital.  The 10th floor is my home away from home.

So far I've had three ultrasounds, one HRCT, labs and more labs, a bronchoscopy with biopsy and more labs, and X-ray.  I'll likely be having a ventilation perfusion/VQ test done soon and might even throw a bone density in as it is due.

I've started another high dose steroid pulse and will probably try something with more umph when that is completed.

So far everything looks good, just waiting for pathology from the biopsy, but it doesn't look like I've damaged the lungs, that means I have a good chance of regaining lung function.  That would be awesome.

I'll write more in a new post when we have more results and an action plan to talk about.

More Monday Macros

Three Months or 3000 Miles, Routine Clinic Visit 10/3/17

It's that time once again, my quarterly visit to the Heart/Lung Transplant Clinic for labs, x-rays, pulmonary function testing and talking with the Team.  This s the fact that I did make it 3 whole months without a trip to the ER or an unscheduled trip to the Clinic.  I'm pretty happy with that.

A day at the clinic always starts with labs and x-rays.  The labs need to be taken fairly close to 8:00AM, so no matter what time you are scheduled to see the Team, you need to be at the facility around :30 or so. Timing of the labs is important because one of the things they check is the amount of Prograf that is in your system.  To make it a standard measurement, the labs should be drawn close to 11 hours after the last dose.  I don't know if this timing is the same for each team, different teams may have different times for taking the test.  At UTSW, labs and chest x-rays are done in the same area so only one waiting room visit.  Labs then just down the hall for a chest x-ray.

Sometimes we have some time before we need to be in the clinic, so we grab something to eat then head on up to clinic.Clinic begins like most doctor visits, check in with the nurse for weight and vitals.  Next comes pulmonary function testing (PFT's). This is where we had a hiccup. The Team has a new respiratory therapist, and she is changing the protocol for performing PFT's. The old protocol involved breathing in as deeply as you could, then placing the device in your mouth, and blowing.That is the way I've done all but my annuals for well over a decade, and these results are the basis of my personal trend analysis.  The new protocol is more like the annual PFT. Now we begin the test with the device in our mouths, breathe a couple of times, take a deep breath and blow. I don't get as much air during the inhale portion with the spirometer in my mouth.  My results dropped fairly significantly (to me). It really bothered me. I guess it's kind of like buying a new scale and weighing 5 lbs more than your last weigh in.  I know it's just a new baseline that my future tests will be measured against, but still really affected me for a couple of days.  I'm still well over 100% of predicted for healthy lungs, so nothing to really be bothered about.

After PFT's, we usually get to spend some time with my Transplant Coordinator going over what all's been going on in my life since the last visit and making sure I'm still taking all of my meds. This visit my TC was busy and just quickly peeked in to say hi before handing me off to a different nurse.  Then we get time with our Physician Assistant.  This is when we talk about more technical stuff, go over lab results that may be in already, and usually talk about studies I've read or my N-1 experiments. Well.. not this time.  Our PA is on vacation and we had a totally new person that I've never met before, and one who obviously hadn't read my past Dr's notes.  My creatinin levels were a little high this time because I've been slacking a little bit on my water intake. We had to go over little rhymes to help me remember to drink my water, kind of childish.  Then when I mentioned that I had been lifting a little heavier the two days prior to clinic, she told me to not have heavy days and started trying to explain to me how to exercise.  I simply told her no. Kind of caught her by surprise.

The last person we see is a team doctor. This visit we got to see the Director of the Lung Transplant program at UTSW.  I spoke with Dr. Torres about the new protocol for PFT's and we went over x-rays and labs. He listened to my chest and we talked about a couple studies that I've been reading.  When the exam/talk was over, he mentioned that I made him glad that he kept up on all the recent studies.

All in all it was a good visit.  Labs are all spot on with the exception of the creatinine, and we retested that Thursday.  My diet and exercise N-1 experiments seem to be having positive results so far.  The next clinic appointment is in January, and that's the biggie.  That will include several days of scans, x-rays, a colonoscopy, bronchoscopy, more scans and tons of labs. I'm looking forward to those results, been working hard and expect to see some improvement over last Jan's results.

The Heart/Lung Transplant Clinic waiting room.

Past Clinic Visits

Skin Cancer Prevention After a Lung Transplant

Today was my semi-annual appointment with the Dermatologist, and the results were a little disappointing.  Before I get into that, let me answer the question: "You see a Dermatologist every six months? Why?"

I go see the Dermatologist every six months because the risk of developing skin cancer is much higher for a transplant recipient, even more likely for a lung transplant recipient due to often higher doses of anti-rejection medications.

I go every six months because I've had issues pop up on my face and scalp that have required they be burned or cut off each time I go, so they shortened the time between visits to catch catch issues earlier.

Why do transplant patients have such a higher risk of skin cancer than the general population?

From "After a Transplant: New Dangers"

We don’t know all the reasons for the higher incidence and risk of death from skin cancer in transplant patients. One of the clearest causes, though, is that the antirejection drugs patients must take reduce the ability of the immune system to detect and defend against cancer. This necessary immunosuppression can also pave the way for infection by cancer-promoting viruses such as the Merkel cell polyomavirus, the main cause of MCC

And the very first line item from one of my medications web site:

What is the most important information I should know about PROGRAF? 

PROGRAF can cause serious side effects, including: Increased risk of cancer. People who take PROGRAF have an increased risk of getting some kinds of cancer, including skin and lymph gland cancer (lymphoma).

This is also high on the list of a couple of my other meds.

At my first or second visit with the Dermatologist after my transplant, we talked about the risk/reward of sun exposure.  Humans need the sun and there is reward for sun exposure.  There is also risk for improper or excessive sun exposure. When talking about the risk/reward of my getting some sun she mentioned that "The risk is so high that odds are if you live to the 5 year point, you will more likely die from a skin cancer related issue than one to do with the transplant." I am paraphrasing there, I don't remember her exact words, but that is the gist of the conversation.

That risk is identified in this study:

RESULTS: At 5 and 10 years posttransplantation the cumulative incidence was 31% and 47% for any skin cancer, 28% and 42% for squamous cell carcinoma, 12% and 21% for basal cell carcinoma, and 53% and 86% for death, respectively. Four patients died of metastatic squamous cell carcinoma. The cumulative incidence for a subsequent skin cancer of the same type 4 years after an initial skin cancer was 85% and 43% for squamous and basal cell carcinoma, respectively. Increasing age, male gender, skin cancer history, and more recent year of transplantation were associated with increased risk of skin cancer post transplantation.

There are plenty more studies and papers on the subject if you are interested in learning more. It is an easy Google search.

This increased risk is also the reason why prior skin cancer can preclude someone from being placed on the transplant list.

If you have seen a transplant team, then I am sure they have went over this issue with you, and you understand the risks and possibilities so this is nothing new.

If you are here looking for information to help you make the decision on whether or not to pursue a transplant, let me just say that every extra day that I have been gifted by my donor family is a blessing and well worth all of the risks associated with the procedure and the effects and side effects of all the medications. I mentioned risk/reward earlier and the rewards I have already received are more than worth the risk.

So why am I disappointed in the results of this visit? I went into the appointment thinking that they would burn off the new spots I knew about on my scalp and maybe a place or two on my face.  It turns out that there are enough spots on my face and scalp, and indications of future spots, that my Dermatologist recommended that I undergo three Levulan PDT Treatments  They will basically spread the medication over my face, ears and sparce spot on my scalp.  Let is soak in for a couple of hours, and then expose me to a special light for a time. The treatments are two weeks apart.

I was disappointed just because I wasn't expecting that. In the grand scheme of things it really is no big deal.

We'll so the treatments sometime in the fall when there is less ambient UV light. This will help minimize side effects.

Three Months or 3000 Miles, Routine Clinic Visit 7/7/16

Right after you are released from the hospital following a lung transplant, you spend a lot of time at your Transplant Clinc with your Team.  They are checking your progress, taking lots of labs, and dialing in your meds.  With my Team, once you reach 1 year post-transplant, you are on a once every three months schedule of routine visits.  Yesterday was my day.

It was an awesome day at Clinic.

First, my Pulmonary Function Test (PFT's) results were spectacular.  They were so good that the tech who performed the tests had to triple check all of the data that was entered into the computer to ensure she didn't make an error.

FVC = Forced Vital Capacity.  It is basically my lung capacity.  It was almost 6 liters, and was 112% of predicted for a person of my sex/weight/height and race.  

FEV1 = Forced Expiatory Volume 1.  This is basically how much air I can forcibly expel in the first second.  126% of predicted is pretty much unheard of for an IPF transplant recipient.  

I do believe that my continued improvements in lung capacity are due in a very large part to the hard style breathing techniques used during my kettlebell swings.

I haven't seen the results of all my labs yet, but have heard from my coordinator today and know that there are no alarms going off and that there are no changes needed to my main anti-rejection medications.

I was able to talk with the Team and get two of my meds reduced.  My Metoprolol was reduced from 50 mg three times/day to twice/day and Prednisone reduced from 15 mg/day to 10 mg/day.  This should help with some of the mental side effects I've been dealing with.  The Metroprolol is a Beta Blocker and is used to counter the side effects of a couple of my other meds.  So long as my blood pressure and pulse stay reasonable I will be able to stay on this reduce dose.  

I was also able to grab an image of x-rays of my pre and post transplant lungs, thought you guys might be interested in seeing the difference.

The IPF lungs x-ray was taken two months prior to my procedure.  The new lungs image is from yesterday.  

It was a good day at the clinic.  A year and a half post-transplant and my lung capacity keeps improving.  I can't express just how much I, and my entire family, appreciate this wonderful gift that our donor family offered.