Thursday, March 23, 2017

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".
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.

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

Monday, March 20, 2017

Monday Macros - 3/20/17

Monday Macros.

Weight = 150. Weight gain this period = 1 lb. Total weight loss = 102 lbs. Macros for the week = Carb/Fat/Prot - 13/64/23%. Daily avg cals = 1.849. Body Fat = 12.7%

It seems that chocolate exasperates reflux, so I've laid off my nightly bite of dark chocolate. It took me a few days to get over the habit of my after dinner square, but it does seem to make a difference.  I'm kinda sorta following a GERD/Primal diet right now. Only real change is dropping bacon, sausage and chocolate.  I've also cut back on onions and other vegetables that 'they' recommend not consuming. My total sugars averaged 16 gr/day this week. I'm very happy with that. Carbs were 61 gr/day. They would have been lower but I decided to add Sweet potato to my dinner this evening.

I haven't talked about exercise lately, pretty much because I've laid off of my kettlebells until we get the issues with my declining lung function lined out.

More Monday Macros

Friday, March 17, 2017

"Patience Grasshopper"

An update for those of you who are following along.

Went in to the gastrointestinal surgery doc this morning expecting to go over the procedure and schedule my Nissen Fundoplication. Not so fast my friends. The surgeon wants to take a peek with an endoscope before performing the surgery.  The soonest I can get in for the endoscopy is this coming Wednesday.

I'm not at all looking forward to the Nissen Fundoplication, but the sooner I can get the reflux taken care of, the sooner I can start the treatment resolve my lung function decline. I'd just as soon get it done tomorrow as wait another week.

But as one of my early TV heroes was often told, "Patience Grasshopper".

Thursday, March 16, 2017

An Updated Pulmonary Fibrosis Information Guide

The Pulmonary Fibrosis Foundation has released their new Pulmonary Fibrosis Information Guide.

From the presser:
The Pulmonary Fibrosis Foundation (PFF), the leading pulmonary fibrosis (PF) resource for patients, their families, and the medical community, has announced the publication of its new Pulmonary Fibrosis Information Guide. The guide provides patients and families with up-to-date information about pulmonary fibrosis, treatment options, and ways of maintaining one's health while living with the disease. "Pulmonary fibrosis can be a confusing diagnosis," said David Lederer, MD, the PFF's Senior Medical Advisor, Education and Awareness. "Information available online and through other sources is not always accurate. Our new Pulmonary Fibrosis Information Guide was designed to provide clear, accurate, easy-to-understand information for people living with PF and their caregivers."
Dr. Lederer, quoted above, has long been the go-to source for easy to understand information about pulmonary fibrosis and idiopathic pulmonary fibrosis. His blog is a great resource for all of us and he was very supportive during my own journey with IPF.

Here is the guide:

I've read it and it really is a great resource for anyone affected by pulmonary fibrosis.  Head on over to the Pulmonary Fibrosis Foundation to find information about support, finding care, and connecting with others who are walking this same path.

Wednesday, March 15, 2017

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.

A Couple Articles About Life With New Lungs

I have been fortunate to have two articles published this month. It is pretty awesome that such varied communities are intersted in helping to spread awareness about Idiopathic Pulmonary Fibrosis and solid organ transplantation.

The first article is a blog post published by the Pink Socks Tribe.  I first mentioned Nick and Pink Socks when talking about my experiences at MedicineX.

The post talked about my Life With New Lungs and I tried to convey in this post is the importance of life's moments. It is the moments that shape who we are, and it is the moments we share with others that will be remembered long after we are gone. One thing I've learned through my experience at being so close to death is to really embrace those special moments.  I really kind of enjoy the pink lungs Nick and Company came up with to go with the post.

The next article was published by the Stanford Medicine Scope BlogThe gift of life: Living with new lungs talks a bit more about living with new lungs and becoming resilient.

Head on over and read the articles, let me know what you think.

The Primal Transplant In The News on the sidebar links to more interviews and articles that I've been involved with over the years.

Monday, March 13, 2017

Monday Macros - 3/13/17

Monday Macros.

Weight = 149. Weight loss this period = 2 lb. Total weight loss = 102 lbs. Macros for the week = Carb/Fat/Prot - 17/61/22%. Daily avg cals = 2,097. Body Fat = ?%

Once again I took my meds before measuring my body fat.  I'm pretty sure I didn't gain any this week :)

My Sweetie wanted fried calamari as an appetizer with lunch, so I split it with her.  Even though it was just lightly breaded, I'm reminded of why I don't eat grains. 

I have a new large batch of bone broth put up. This time it's chicken, pork and beef. I used some short rib bones left over from wine brazed short ribs to add some flavor.  It is pretty tasty if I must say so myself.  

I also made some Imperial Valley style Carne Asada this weekend. It's been a long time since I've made up a batch, and again, very tasty.  Living in Texas, I've been eating a lot of Tex Mex Asada and this recipe reminds me of growing up.  I was to lazy to make refritos for my friends who came over for dinner and went and bought a can. Even with going to the local Mexican market, It surprised me that there were only two cans made with basic, traditional ingredients. 

More Monday Macros

Tuesday, March 7, 2017

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, March 6, 2017

Monday Macros - 3/6/17

Monday Macros.

Weight = 151. Weight gain this period = 2 lb. Total weight loss = 100 lbs. Macros for the week = Carb/Fat/Prot - 16/61/23%. Daily avg cals = 2.266. Body Fat = 11%

A little carb heavy this week with an average of 93 gr/day. I've had more Kefir and Yogurt to help make my gut bugs happy after the trip to the hospital. Also had some french fries yesterday :)

Since there is a fairly decent probability that I'll be going on a feeding tube soon, I've been thinking a lot about 'Last Eats' (hey Alton Brown...). So we went to our favorite place for a quiet brunch (The Bird Cafe), and to my favorite place for a bunless burger (Twisted Root Burger Co) over the weekend. Heck, I've even planned out my last meal, well prepared if it comes to that.  

Being in Texas, deciding on last BBQ is going to be difficult. Do I go for fav dish, favorite joint, or to the local place that goes out of their way for me? Or do I go to one of the new places everyone is buzzing about.  May end up doing a whirlwind of BBQ.

Tomorrow is when I go in to begin the studies that will determine what my future holds, this is why it's on my mind this evening.  I've come to terms with idea of either going on a feeding tube, or having a Nissen Fundoplication, and am planning some really interesting discussions with the dietitian either way. I'm in the hope for the best, but plan for the worst, mode. 

More Monday Macros

Saturday, March 4, 2017

A Taste of MedX - Presentations From 2016

Stanford MedicineX is one of the most intense immersions into the future of patient centered healthcare and patient advocacy that you could imagine. Here are just a few of the awesome presentations that we experienced at the 2016 conference. I could write an entire post for each video, but it is best if I let the folks speak for themselves.

Other than Dr. Chu's opening and closing remarks, these are in no particular order. I just grabbed them off of YouTube as I came across them.  I do have to say that Dillon's presentation is one that change 'me', and that others listed here have become personal friends.

Give them a watch, this really is just a "taste of MedX"

Dr. Larry Chu - MedX 2016 Opening Remarks
Dr. Larry Chu welcomes the mainstage audience to the first day of Medicine X 2016

Dillan Barmache & Debbie Spangler: 
Everyone Included - Precision Medicine Initiative
With some aid from caregiver Debbie Spangler, ePatient Dillan Barmache discusses his experiences living with Autism and makes an appeal for revising treatment for individuals with Autism.

Terry Marlin: Fighting Duchenne Muscular Dystrophy
I am 41 years old and I have been married to my wife, Sonya for 16 years. We have 2 boys, Jonah is 12 and Emory is 10. I own a small manufacturing company in Dickson, TN. where we manufacture carbide and diamond tools. Our 2 boys were diagnosed with Duchenne Muscular Dystrophy in 2009, which is why we started FightDMD in April of 2010. We have currently raised $750,000 to fund cardiac research at Vanderbilt Children's Hospital for kids with DMD.

Britt Johnson: Special Session - The Opioid Crisis - Presentation
Patient advocate Britt Johnson discusses her history of chronic pain caused by rheumatoid arthritis, and how taking opioids has helped her to live with that pain.

Liz Salmi: Oral Ignite
Patient advocate Liz Salmi discusses her experiences living with a brain tumor diagnosis and how her family history with the disease has informer her decisions.

Sophie Thacher: ePatient Ignite! - Healthy Enough
Sophie Thacher talks about her personal medical journey and how people can move beyond "healthy enough."

Yoko K. Sen: Artist in Residence
Yoko Sen tells the story of how her own experience in hospitals and hearing the needs of other patients led her to her work in creating better sound atmospheres for hospitals

Natalie Abbot: Sharing is Curing
ePatient scholar Natalie Abbott discusses her experience living with Moebius syndrome and the importance of a supportive community for people living with genetic conditions.

Danielle Cosgrove: TheProject3x5
...So, in short my mission is to advocate, educate, empower, and maybe even inspire those with CRPS/RSD, chronic pain, and nasty little invisible illnesses in general. Follow along at theproject3x5! Join my cause and spread the word.

Julie Cerrone: How I used social media, patient advocates, and my own research...
This presentation would talk about my health journey and how having access to my data, using my data, and fielding my “dream team” or doctor has helped me get to where I am today. My case study proves that we need precision medicine to combat these complex health issues.

Larry Chu, MD: Curtain Call & Closing Remarks
Dr. Chu delivers closing remarks commemorating the end of the Medicine X 2016 conference
There are many more wonderful presentations from MedicineX over on their YouTube Channel.