Friday, May 20, 2022

America is Back

I realize I haven't posted in a while.  It has been incredibly busy the last 6 months with Brandon shuffling schedules, staff, COVID, work, but still trying to move forward with life.  I never imagined that after a little over 2 years COVID would still be influencing life.  I just came from the grocery store where I still see areas in the grocery store with nothing on the shelves. Our washing and dryer are on their last leg but the one I want to replace them with is on a boat somewhere and no one knows when it will arrive.  It is really a strange time for us all.  Since our last post Brandon and I have had major exposures to COVID at least 3 times but have luckily not tested positive.  But staff have, friends have, therapists, places where we go have.  I am not sure where Brandon and I were exposed but really that is not important.  COVID is everywhere.  Apparently, we were exposed over 2 weeks ago.  Brandon sounded and acted fine.  He went about his week.  We had a Mother's Day celebration. During the week Brandon sounded a little more congested but as he says - he always sounds congested.  But then Brandon's job coach started sounding like she had a bad cold and so did the mom that lives with Brandon during the week.  Tony was around for Mother's Day weekend and during the week he called saying he didn't feel so hot.  So last Saturday I tested everyone.  Everyone tested positive except me and Brandon's roommate and unfortunately so did a few others who they saw during the week.  The good news.  Those vulnerable, including Brandon took Paxlovid to treat COVID 19 and everyone at the two houses recovered.  In fact, Brandon sounds clearer in his lungs now than before he had active COVID.  

But life goes on and we now know we have the tools to treat or help prevent COVID like other illnesses in the past.  Brandon is on speed dial with his integrative medicine doctor, and she has been a lifesaver to him in the last 2 years. Brandon and I both have been vaccinated and had one booster.  We will get another booster in July. With COVID coming and going we may wear facemasks when we feel they are needed.  No judgement here on those who choose not to go this direction, but we are both high risk and I feel this is our safer option. However, we are no longer fearful of COVID.  

All Brandon wants is for life to be like it was before March 2020.   He misses his jobs, his friends, going out, traveling, everything we all miss.  Over the last two years we managed to piece together a good life for Brandon but always the promise that in 3 months, 6 months, 1 year we will be back to normal.  Normal as it can be for Brandon.  Little by little Brandon has been able to return to the new normal.  Brandon saw the Who and Paul McCartney. Brandon's band is back to playing once a month.  The band practices at least once a week.  We started back up the Dripping Springs Friendship Club where persons with disabilities in the area get together once a week for social events. Brandon is back horseback riding once a week at RedArena.  Brandon started going back to "Off the Beatle Path" Radio show on KOOP radio with Rush Evans on Mondays and is working on more interviews.  He hasn't started back to his two other jobs but hopefully those will come soon, or we find other job options.  The best part is we have decided this is the year we travel to Liverpool and London for the Beatlesweek in August with 8 of us going including brother and his nephew and Rush.  Brandon is beyond excited to be with his Beatle people.  

What I hear from Brandon everyday is "America is Back"!!!!!!!  I think I would say America is back with the new normal.  We see it everyday whether for the good or bad or just the new. More technology using Zoom for everything. New hours for businesses.  Supply not matching demand. A little loss of patience and more criticism.   A new appreciation of family time and work versus home balance. A little loss of social skills and further divide of our differences.  More value for the things that are important in life.  For me that is Brandon and knowing that each day I have him in my life is one more day full of love.  I am pretty darn lucky.  Life although different, is good.  So if you see Brandon he may say to you - America is back.  You will now know what he means.  Big hugs to you all.  Come see The Eddie Ray band playing once a month.  They play today at RedArena today at 5:00 and tomorrow Saturday May 21, METCALF BBQ AT GRACELAND.  8600 HIGHWAY 290 W. 6PM- 8PM.  Here is a link to their gigs. The Eddie Ray Band | ReverbNation.  Love is everything is a song Brandon wrote with Phil.  If you like the Beatles you will like this.  



























Thursday, December 23, 2021

Enough COVID - Brandon approved

It finally happened.  Brandon has had enough of this COVID thang.  Brandon said no more news about COVID.  If it comes on the TV or the radio, he wants it turned off.  I don't blame him, I feel the same way.  It means for Brandon that he still is not back at work, and I think that is really wearing on him.  It seems like it will never go away.  We have tried to make the best of it by staying vaccinated, wearing masks inside as this new strain spreads.  Brandon goes through masks about every 15 minutes, so I take a large supply when we are out.    

This last weekend Brandon ran out of Epidiolex (the CBD oil through prescription).  I didn't know we were out until Saturday.  But I couldn't get it refilled until Monday.  To cover Brandon through the weekend we used Charlotte's Web.  Normally that would be okay because the dosage and the strength are fairly similar.  Apparently, in reality it is not the same.  We found 3 additional doses on Monday, so Brandon only missed 2 doses on Sunday.  That was enough to really affect him.  He has been sad and weepy ever since.  A lesson for mom - don't miss any CBD doses.  Feel free to send him happy messages on Facebook as he is upstairs as I write this snuggled up in bed, watching old movies and saying he is sad. Sometimes we all just need a few days in bed.  



This was not a great week for Brandon to not be 100%.  Brandon and I want to kick 2021 down the road and lead on to a "fab 2022".  I haven't taken you all on the roller-coaster ride we have been on for the last 6 months.  But will be glad to get this behind us.  

In July, Brandon had a cat scan done to check his COVID lungs.  I am glad to say the groundglass opacities that are related to COVID have greatly improved based on this last scan.  But noted on the scan was nodular contour liver parenchyma.  The results had a recommendation that Brandon get tested for liver function to see if there is any evidence of liver damage.  Brandon was tested and the direct tests for liver were okay, but some other blood tests were off.  Because the scan indicated nodules, I sent the test to MD Anderson to review.  Brandon's cancer could spread from the stomach to either the lungs or the liver.  MD Anderson has been watching these areas closely for possible spread. After their review, MD Anderson wanted to do a specific liver scan.  We went back to MD Anderson in October.  Everyone was thinking that we probably would not find anything on the scan.  The good news is there was no cancer detected on the liver, but the scan came back suggesting that Brandon has cirrhosis of the liver.  MD Anderson wanted Brandon to find a good GI doctor to really review the records and determine whether this is a correct diagnosis.  We found a good GI doctor who specializes in the liver.  They ran more blood tests and stool samples.  The liver tests again came out fine, but more tests came out with some abnormal results.  Some could be related to the liver.  So, this week Brandon went in for a fibro-scan to determine if there is liver damage.  And this morning at 6:00 am (ugh) Brandon had an endoscopy to check for any possible cancer in the stomach.  Unfortunately, they were unable to find the liver during the fibro-scan except for 1 time (they need 10).  I am not expecting any results from the fibro scan.  For the endoscopy, Brandon had one polyp removed during the endoscopy with several biopsies just to check the area for any cancer.  It is anticipated that the biopsies will not show any cancer, but these biopsies were a check just in case.  I think we all agree that from the blood tests the liver is functioning.  If that is the case, I think we will just monitor the liver and if anything changes do more tests.  It is not the definitive answer I wanted, but with this issue I am going to have to trust the doctors and let it go.  We will see if there is any recommended follow-up.  

The question I keep getting asked is why is there possible liver damage.  Cirrhosis is normally seen within people who drink heavily.  After looking up all of Brandon's medicine, it appears it can be the seizure medications, including epidiolex (CBD oil).  So hoping this is a nothing issue because I don't think we can choose between having a bad liver or having bad seizures.  Not great choices.  Sitting on this one for now. 

I know I normally don't write about me, but my health has been part of the roller-coaster at the same time.  My knee had been deteriorating for a while.  Tony tells me it has easily been over a year or more.  But it finally got so bad that I really couldn't drive.  I need to drive for work.  I made an appointment with an orthopedic physician after I found out from my primary care doctor that I had a torn meniscus. After meeting with the doctor there were some other small things that needed repair as well.  We decided to go forward with surgery.  The surgery was successful, and I am now doing physical therapy to help with the healing process.  The main thing now is being able to walk up the stairs to help Brandon.  I can do that now, but it is still a slow process.  

I was also due for my yearly exam with my ob/gyn.  I hadn't been during COVID.  Unfortunately, my pap was abnormal.  In December I had to go back and have two biopsies in the cervix and uterus.  A little scary as the pap results were unusual.  The good news.  The two biopsies were normal.  They will monitor with another pap next year.  But all good news.  

I have no idea how I have managed to work and deal with both of our health issues in the last 6 months.  But I am glad to say we are done.  Hopefully Brandon will be happy after Christmas and to start our fab 2022.  The goal is to go to Liverpool and London in 2022.  We are both ready for a celebration trip passing year 3 cancer free.  

Merry Christmas and Happy Holidays to you all.  I know I am thankful to have Brandon hanging with me over the holidays.  We are planning a few nights watching Christmas movies.  We are both looking forward to a "fab 2022".  And remember - all you need is love.  



Wednesday, August 11, 2021

Some Great News from Hard Work And Smart Doctors

In October of 2017, I posted a long medical post about new medical conditions Brandon will face in the future.  With every new Brandon diagnosis I usually go through the 5 stages of grief. I am usually in shock of is this real (denial).  I bug all my mom friends for info, search the internet, get with Brandon's many case managers, therapists and providers until I better understand the condition.  Sometimes I get pissed (anger) especially when physicians or providers failed to let me know about the condition earlier or failed to explain consequences from other treatments.  I start the process of coming up with the best treatment plans and lining up whatever treatment I can for Brandon to have the best life possible knowing the new diagnosis (bargaining).  Once I slow down from all of those, depression sinks in and I know I have to take care of myself to bounce out of it.  Finally I learn to accept what I cant change (acceptance), try not to spend time on those things that I don't have control over and focus on those that can make a difference or let go until I find those things that make a difference.  I really wish there wasn't as many opportunities to go through this process over the years, but have learned even as Brandon has become an adult this continues.  Last week was dedicated to checking progress concerning Brandon's scoliosis and osteoporosis diagnosis and journey and this process kicked in full gear.  

I have to give big kudos to Brandon for going along with the crazy plan we put together for him for the last 4 years without complaint. I also have to give big kudos to Dr. Sharon Hausman Cohen, Brandon's integrative medicine physician who completely changed Brandon's treatment for scoliosis and osteoporosis; added supplements; changed his diet; suggested exercises and bone building vibration.  I do trust her and so far all her recommendations have made a significant impact on Brandon's better health including her treatments during COVID.  

Brandon and I traveled to Dallas last week to check his progress of improving his osteoporosis numbers and determine whether Brandon's spine has continued to regress to the point Brandon has to have surgery.   I also wanted to check to see what we could do for pain Brandon has been experiencing in his back.  We met with Brandon's surgeon in Dallas.  

  • Brandon had 3 different recommendations for surgery from 3 different surgeons.  They were all very different from each other.  We managed to take all 3 approaches to the Mayo Clinic in Minnesota for the tie breaker.  They 100% agreed with the physician in Dallas.  His name is Dr. Robert Viere.  I trust him 100%.  A little of his background.  He worked at Scottish Rite for many years and performed 100s of scoliosis surgeries on complex kids.  He left there and started his own practice.  Brandon had his foot surgery at Scottish Rite and although very complex, the results were great so we trust their expertise.  
  • Brandon has been unable to have scoliosis surgery because he has such severe osteoporosis. The surgeon explained that it is like putting screws in styrofoam versus wood. Brandon took 2 years of injections of forteo to help build bone, changed his diet, added supplements to help him absorb vitamin D and to continue repairing bones.  This all to hope his scoliosis would not decline.  Brandon has been doing exercises, worked out at the Y and uses a vibration platform to help build bone.  Brandon curve is in-between 48% - 52%. 

In the last 6 months Brandon has been doing some things that made we realize he is in pain in his back. So knowing we have completed his bone building with great results from osteoporosis (very bad bone density) to osteopenia (low bone density) and that his pain level is worse, we were expecting that the surgeon would recommend we move forward with the surgery.  Brandon had an MRI to see what is going on with the spine.  To all our surprise, Brandon's scoliosis has not declined at all.  In fact, it is exactly the same as two years ago.  And he has managed to stay in the osteopenia stage rather than back in osteoporosis levels.  I love this surgeon because he will not do any surgery on Brandon unless he absolutely needs it.  So refreshing.  We will continue with Brandon's treatment and a few suggestions to add another new bone building drug and add some injections for pain.  Brandon was very happy, I was extremely happy and glad to not have to move to Dallas for a few months and Dr. Viere was pretty proud of Brandon's progress.  Finally some great news.  

I am trying to catch up on doctor visits for Brandon,  We have 2 more coming up.  One is Brandon's 2 1/2 year cancer check.    


The other is going to the pulmonologist to check Brandon's lungs.  After having COVID in June 2020 Brandon still has "COVID lungs" showing on the last scan.  His pulmonologist would like to see Brandon and hopefully we can come up with a new treatment to help clear his lungs.  The lungs don't sound that great.  Some people have asked "why have the COVID vaccine?"  Brandon and my answer is - you could be having a scan 1 year after catching COVID trying to still treat your COVID symptoms like Brandon.  This stuff is real and I don't want to see anyone of you having to go through this like he is.  Hey! Brandon got his vaccine and so did Paul.  You can too.  More later. 


Paul McCartney getting Vaccinated

Brandon getting Vaccinated

Sunday, July 11, 2021

The Amazing Eyes - A Brandon Update



I realized I haven't updated the blog since our presumed COVID diagnosis in June 2020.  After 40 days with a fever, Brandon one day stopped running fever and was acting like Brandon.  I still give him immune boosting drugs, daily breathing exercises, nebulizers twice a day to clear his lungs.  This week we went back for a cat scan to see if Brandon's lungs had cleared from having ground glass nodules during COVID. We are closer to clearing the infection from the lungs but there is still some remaining nodules.  I also began feeling better after about 6 weeks, but on week 5 felt like I was drowning in my lungs.  I went back to the doctor, had an x-rays and he said there was fluid on my lungs.  I would like to say today I am 100%, but on occasion I find that panicked feeling from my lungs when I am exercising or doing something strenuous outside and I am also having some remaining gasto issues.  Both Brandon and I are vaccinated and are loving a little more freedom. Please get vaccinated.  You really don't want this illness. I dont think anyone really understands the long term effects even if you are lucky enough to not be in the hospital.   

Today is not about COVID.  Today is about the eyes.  I am blogging today about the eyes in hopes we may help someone else who is struggling tying to find a diagnosis, more information or treatment for things that don't look right with your child's eyes.  I cant say we have all the answers in this blog, but I can say we certainly have seen many professionals who have given their opinion over 27 years.  With the eyes we are still learning.  

Where to start.  When Brandon was in grade school, the school kept telling me they saw something going on with Brandon's eyes.  Up to this point Brandon had strabismus in both eyes but we had surgery to correct early on.  His eyes looked fine to me and Brandon's acuity was pretty good, so it was hard to understand that he had a vision problem.  I agreed that he seemed to be vey careful when walking which seemed like a depth perception issue.  But he also had low muscle tone in his truck that could contribute to this.  I took Brandon to an ophthalmologist as recommended by the school.  The ophthalmologist said he didn't see anything wrong with Brandon's eyes.  We were referred to San Antonio to a neuro-ophthalmologist that did a complete exam on Brandon and again said he did not see any issues with Brandon's eyes.  But the school and other therapists did see issues with his eyes and over the years pushed me to go to other specialists.  So I did.  I took him to a low vision specialist who also said she did not see too many issues with the eyes but he did appear to have a lower vision blind spot and issues with peripheral vision.  We ended up in Houston at the University of Houston School of Optometry.  They also did several vision tests of Brandon and did see some issues with his eyes.  They found Brandon had a blind spot when looking down, appeared to have some peripheral vision issues and was red/green color blind.  We could work with this.  

However the pressure continued.  Finally another mom suggested I have a functional vision exam from the Texas School for the Blind.  I was lucky to be able to find an expert from the school who I hired to do an assessment.  She came to the house and started with a series of tests.  One of the tests was for Brandon to find objects she had left out on the kitchen counter.  It quickly was very clear that Brandon could not see a complex visual field.  A simple test for Brandon to complete was putting objects on the kitchen counter and asking him to find one very obvious on the counter mixed in with other objects.  There were about 20 objects sitting on the counter and this one very obvious object.  Brandon was really excited to try as it was a game.  But he never found the object.  You and I would have been able to pull this object within a second.  He could not find this object after looking for 5 min.  So she took 1/2 of the 20 objects away leaving 10 objects on the counter.  She asked Brandon to find the obvious object again.  This time he looked and looked and by the 5 minute mark he found the object but with great effort.  Then she just put the 1 object on the counter and asked him to find it and after about 15 seconds he found it.  It started to really bring home some of the issues I had seen with him but wasn't sure why.  When Brandon was young every trip to Houston to see physicians I would take Brandon to the Zoo close by.  I always thought it would be fun for him to see the animals.  But each time he would look at the sky or the wrong direction.  I would turn his head to the animals and say there is a bear or the bird or whatever the animal was.  He still didn't seem to find it.  Frustrating for both of us.  After this test I realized he couldn't see the animals because the visual field was too complex.  I took him each year to see the fireworks and again we both would get frustrated because he would look the wrong way when I would say do you see the fireworks.

From this test Brandon was diagnosed with cortical visual impairment.  Cortical Visual Impairment  Even though Brandon was diagnosed with Cortical Visual Impairment he does not meet the definition of blind in the State of Texas due to his acuity.  He started receiving vision services in school and used a walking stick which he hated.  We worked with him to not step in front of a car at the grocery store which sometimes worked and sometimes not.  We asked him to use the walking stick in the environment especially when there were steps involved.  I took Brandon to more doctors to confirm his actual visual issues.  One ophthalmologist said they saw some atrophy in one of his eyes.  Brandon still has good acuity, could read liner notes on CDs and read some information in books.  

Some of you may know that in 2018 Brandon and I took a trip to Branson Mo.  He was very excited to go see a ton of shows.  Brandon was tired because we left very early one morning and arrived mid morning to Branson.  We drove around picking up tickets then headed to a show.  Everyone was trying to give Brandon the best experience by letting him sit on the front row of these shows.  After the first show, Brandon was rubbing his eyes, closing his eye and was fairly agitated.  We went to check in the hotel and then head to the second show.  At the second show Brandon sat in the front row.  There was lots of activity, lots of lights facing our direction.  I noticed he had one eye covered up.  He was grumpy.  For those who know Brandon that is rare.  We got back to the hotel and rested, ate and went to the last show where they again put us in the front row.  He had a meltdown crying he wanted to go home.  We left after the show to go back to the hotel.  Brandon was miserable.  He was so miserable I called the airline for us to fly home early.  He managed to do a couple more shows the next day and we then we left Branson early the next morning.  Everyone in Branson was very nice about helping us.  After the trip, I realized we needed to check out the eyes more.  I took Brandon to the low vision doctor, a retinal doctor, an ophthalmologist, and then finally to a neuro-ophthalmologist in Houston.  All said that they did not see anything wrong with the eyes.  We went to his neurologist who said it was possible it was ocular migraines and gave us a low dose seizure medicine that helps treat migraines.  The neurologist said if there was not improvement we could stop the drug.  That was right before COVID.  I started Brandon on the medicine but things didn't improve.  

When using his communication device he also seemed to act like he is seeing the device for the first time often hunting for the right words or letters.  Communication was slow.  Not because Brandon was thinking slow, but because his eyes made it even harder to find the right words. It appeared that Brandon would get exhausted from trying to use his eyes for vision and communication.   Brandon's current communication software is no longer supported and will be phased out.  We had to choose another device or another software for Brandon to use.  We had a great idea that Brandon may be faster on the communication device if he were able to use his eye gaze.  The device arrived for Brandon to try the eye gaze.  We were all excited.  To use the device your eye gaze is tracked to your individual pattern for selecting a button on the device.  Everyone's gaze is slightly different.  We tested Brandon's eyes.  The gaze was all over the place.  He was having a hard time using the device to make it work.  After really trying to finalize his gaze we figured out that Brandon's right eye is all over the place in regards to his gaze.  So we turned off the right eye.  We also found out that even with the left eye Brandon does not appear to be able to track the bottom row and also was pretty slow at finding the correct button. The representative from the device company and Brandon's speech therapist (Lesli Bassford) suggested Brandon get an assessment from the Optometry Center for Vision  Therapy.  We had the assessment.  The Center diagnosed Brandon with a list of 10 major issues, mainly related to how the brain talks to the eyes.  Brandon still has the blank spot (restricted vision) looking down and some on the sides, a slight case of myopia and a astigmatism.  He also has selective vision (when his brain tells one eye to only take in vision), and most importantly Brandon has constant alternating exotropia which means the eyes are constantly moving alternating. Exotropia: Symptoms, Management, and More (healthline.com).   There is much more on how the eyes track and gaze but it is pretty technical.  

I began doing more research on treatment for persons with neurological conditions and with visual impairments.  Brandon went back in to see his low vision doctor here in Austin.  We decided to start with prism glasses and see if they helps initially.  We may have to do a combination of prism glasses, perhaps some therapy, although the verdict is varied on possible success, and surgery.  Brandon is fairly happy wearing the glasses and I have noticed the eye closing is better.  But also recognize this may be a long road of trying different treatments to help his eyes.  It is amazing that Brandon functions as well as he does with so much going on visually.  AND he never complains about it.  

I really felt awful after we received the results for Brandon.  All the years he has figured out a way to make his eyes work for him the best he can.  I also am really upset that kids and adults like Brandon are going undiagnosed because we haven't had the right tools or providers with the expertise to help diagnose.  If you read the article I linked to above apparently there is still more to learn on how the brain and the eyes interact, so I am sure there is more to come.  Brandon still has cortical visual impairment with visual issues in complex visual fields but it is really even more complex than this. It is never an easy answer with Brandon.  We will continue to get all the information we can to decide what Brandon is willing to do to help himself.  I asked Brandon if he is aware of his vision issues.  He said yes.  I asked if he thought they were as bad as the report.  He said he didn't think so.  This new information is just more information to gather as we continue to try help Brandon see as best he can see so we can sit in that front row of a fabulous show and he can enjoy it.    

Tuesday, July 7, 2020

COVID AS WE KNOW IT AND PREPARED FOR IT




From Brandon and me

Hello everyone.  Although Brandon and I have tested negative for coronavirus through the nasal swab test we have been diagnosed as “presumed COVID”.  I have never had anything like this.  It is no fun and it is scary as it takes it twists and turns.  We are now on day 22.  This past weekend was scary.  I thought we both were getting better but Brandon’s oxygen rates went to 88 and his fever came back.  I listened to his lungs and I could hear a ton of sounds which is good and bad.  He didn’t look good.  I also was having a hard time breathing with my oxygen rates holding at 90.  This virus was fighting us.  Luckily, I am on speed dial with Brandon’s integral medicine doctor.  She called in Prednisone to break up Brandon’s lung congestion and we added Mucinex for both of us and we made it through the weekend.  I was so tired and out of it.  I took my car to get gas because we were going to see Brandon’s doctor on Monday but I couldn’t figure out what side of the car to insert the gas and apparently, I left there with the gas door open.  Next time I will ask for help.  But today Brandon is fever free and his lungs sound much better.  I am awake and functioning still sleeping 12 hours a day but I feel much better.  My lungs feel a little heavy.  I think that will take a long time to improve as I am hearing from others who have had this illness.  Please I know this is controversial but you don’t want this – wear a mask, wash your hands, and keep a good distance from others. 

My biggest fear in all of this is that either Brandon or I would end up in the hospital.  The mortality rate for persons with intellectual disabilities is
16 times higher than for a person without intellectual disabilities.  There are some genetic factors as a cause, but there are also some factors that apply at the hospital.  I have always been with Brandon for every hospital stay he has ever had for many reasons but mainly because he does not and cannot advocate for himself and his needs like you and I can.  He may not be able to breath well, but he wont tell you, he may be in pain and I mean significant pain, but he wont tell you, he may have 104 fever but he wont tell you.  He will do whatever you ask him to do as treatment and will not question why.  And I hate to even say this out loud, but there are people who do not value his life over others.  I have lived it, I have heard it, and I am well aware of it, he is not.  I am there as his best advocate.  As we are hearing about choices hospitals are making on who gets treatment and who does not, that makes me fearful.  Hospitals are not allowing families to be with their loved ones with IDD.  There has been a lawsuit concerning this and it was won by the family.  But it was not in Texas.  Believe me, if Brandon needed to go to the hospital, I would have brought a copy of the judge’s order.  If I had to go to the hospital and leave Brandon at home, I worried that no one knows the entire medicine routine, the treatments I was doing with Brandon, the smoothies and mixes I have been doing, the hugs ad kisses, tucking him in under all his blankets and the fact that he is still contagious.  That is a heavy load for anyone to take on and I would be worried If I wasn’t here. It is even hard for me. I made this chart to help Brandon tell me how he is doing.  It has helped.  

Today is a long post.  If it helps one person through COVID it would make us happy.  This post is not about our COVID story, but about our COVID survival.  I knew Brandon and I were high risk when I first started hearing about coronavirus.  I started reading about this illness, who it targets and outcomes.  It attacks those older (which I am close to the top risk), but I focused on those with underlying health risks.  This CDC list was updated June 24, 2020.  I added it below. 

HIGH RISK
People of any age with the following conditions are at increased risk of severe illness from COVID-19:
Children (I am adding adults who meet this as well based on 2 other studies) who are medically complex, who have neurologic, genetic, metabolic conditions, or who have congenital heart disease are at higher risk for severe illness from COVID-19 than other children.

POSSIBLE HIGH RISK
people with the following conditions might be at an increased risk for severe illness from COVID-19:

I already knew lung conditions were at very high risk and diabetes was a very high risk.  I decided it was time for me to pay attention to my own health as well as Brandon.  Brandon had so much to deal with the last few years I let my own health decline.  My diabetes levels were out of control, my weight too high.  This was the perfect time to really work on losing weight, working on the diet and keeping my blood sugar levels daily at 110 or below.  I met with my endocrinologist and we changed up my medications.  I began exercising, walking, working outside and diet.  I lost 15 pounds and my blood sugar levels are now rarely over 110.  For Brandon, I wanted his lungs to be the best they could be.  We met with his pulmonologist and began using an aerobika for Brandon to use daily and nebulizer treatments twice a day.  The virus also seems to focus on those with low vitamin D levels and Brandon has struggled with this.  But we had already been using supplements and diet to boost vitamin D.  My other concern was if our immune systems able to fight off a bad virus.  I would say no they were not.  We met with Brandon’s integral medicine doctor and she designed a COVID program for her patients.  We modified this slightly because Brandon was already on some supplements included in the list.  I decided I needed to start using the immune boosting supplements as well.  I am including what Brandon and I did to prepare for possibly getting this virus.  I am not a medical doctor so please take this as what worked for us. Brandon and I chose to go with supplements before prescription drugs in most instances. Always talk to your doctor before adding any supplements or medications.  Brandon and I began using these supplements recommended below:

SUPPLEMENTS FOR PREVENTION:
  • ZINC 30 - 50mg (Zinc piconolate or Zinc sulfate) Dose: Take 30 mg (1 tab).  Zinc complement over-activation (inflammation) which may cause lung injury in COVID-19. Zinc helps the body stop growth of invading viruses.   
  • QUERCETIN: typical dosing 250-500mg Daily and compliments Zinc. Take with FAT for absorption.
    • ISOQUERCETIN is the Active form of Quercetin and much stronger so typical dose is around 35 mg – 75 mg daily.  Has a variety of antiviral properties as well as anti-inflammatory and works well with Zinc.  
  • EGCG OR BETTER KNOWN AS GREEN TEA: from green tea. Usual dose of 750 mg.  
  • SAMBUCUS (Elderberry extract). Great antiviral studies in influenza and many other types of viruses. Decreases infectivity of viruses by many means. Stop taking this once you begin varicid – see below.
  • MELATONIN: May explain why kids are less susceptible. Melatonin levels go down with age. Taking low dose melatonin if over age 30 may be beneficial for boosting the immune system. IF sick, HIGHER dose 10-20mg of Extended Release daily may be beneficial.
  • SULFORAPHANE with Maitake mushrooms for beta glucans (Avmacol extra strength) for immune boosting. Brandon uses Avmacol I am using Maitake Mushrooms.
  • BETA GLUCANS can come from yeast or mushrooms.  Some people get “spacy” with mushroom derivatives so can use separate yeast-based beta glucans with plain sulforaphane (Avmacol) to create the equivalent of above or just use the beta glucans.  Safe immune booster.
  • VITAMIN D is also very important for fighting infections. At the onset of an illness, take 50,000 IU of vitamin D3/day a week (for 2 months max) if haven’t been on vitamin D you can take 5000 a day. If you know your vitamin D level is good stay on usual dose.  Brandon was already taking a high dose.  I added regular vitamin D to my diet. A low vitamin D level is high risk for COVID.

We started the above immune boosting treatment in early March.  I cant say for sure that this saved us from severe illness but I am sure it helped. 

A little over three weeks ago Brandon had a melt down at his house, insisting he needed to come to my house (he lives next door with roommates).  On the drive over he said he may need to head to the hospital.  I had no idea what was wrong, but I bought him back to the house and he headed to bed.  He didn’t get out of bed.  I decided to take his temp and he was running around 100.6 fever. I asked him what were his symptoms and he said chest congestion, sore scratchy throat and a headache.  Sometimes Brandon can run a fever when he is stressed and he is stressed right now.  The next day I checked him and he said he still had the same. So far he has had fever for 20 days.  We are hoping it is now gone. That day I started to have a scratchy throat, headache (that doesn’t go away) and it felt like someone was grabbing my chest up high and holding it.  Very tight.  I wasn’t coughing.  The next day Brandon and I started having diarrhea (it was pretty darn bad) for several day.  Brandon continued with this, mine got better.  One symptom I am not sure about, but may be as a result of COVID is the skin rash.  I don’t know where we got this, but we were at MD Anderson at the end of May.  A little over a week later Brandon developed an awful rash on his back.  It covered his entire back.  It was something I had not seen before on him although he has rashes, but not this bad.  It is listed as a symptom. I also had a rash later in the illness and then I had COVID toes.  Here is a link to a description of COVID rashes (COVID Rash)  

In the 22 days we have been dealing with this, here are our symptoms.  They have not all been at once. 

COVID 19 SYMPTOMS
Symptoms
Brandon
Leah
Fever or chills
X
Mild
Cough
some
X
Shortness of breath or difficulty breathing
X
X
Fatigue
X
X
Muscle or body aches
?
X
Headache
X
X
New loss of taste or smell
?
X
Sore throat
X
X
Congestion or runny nose
X
X
Nausea or vomiting
?
X
Diarrhea
X
X
These less known - COVID Skin issues
Rash
All over back
On hands
COVID Toes

X


ONCE I REALIZED WE MAY HAVE COVID – WE STARTED THESE TREATMENT OPTIONS:
  • Viracid: I cant tell you how much this saved us.  2 viracid three times a day. Viracid includes a powerful combination of key nutrients and botanical extracts that provide immediate support for immune challenges. We are still taking it. Look for the upper strength for this.

 
      • Astralagus: In viracid. Will not need if taking viracid. If not taking viracid, take at onset of Illness. 250mg two times per day while sick. Decreases fibrosis (Scarring).
      • Andrographis: Will not need if taking viracid. If not taking viracid, 2-4 tablet 3 times daily for the first 5 days. Dampens the Chemokine response. They are what cause the excessive tissue damage with coronavirus.  
  • L-glutamine. 1 scoop two to three times a day. L-Glutamine is one of the most important nutrients for a healthy digestive tract because of its ability to maintain the integrity of the intestinal wall. This amino acid heals all tissue in the body. 
  • Omega SPMs: (Metagenics) Definitely for use at onset of illness. Can use higher dose of 3-4 tablets two times per day for more severe lung symptoms to stop lung inflammation (contains fish oil and stinky.) 
  • Vitamin C: 
  • NAC N-Acetyl Cysteine: 600mg -1200 one or two times per day for cough/congestion. Two times per day for significant infection. Breaks up congestion. Brandon has been taking this for 2 years.
Other key things for COVID treatment 

Pulse Oximeters - We are monitoring with a pulse oximeter several times a day.  You should go ahead and have one handy even if you don’t get this.  They are cheap.  This is for Brandon but a guide - Less than 95 call doctor. Less than 88- 90 for the oxygen level might need to head to the hospital.

Humidifier - We ordered humidifiers for both of us and those helped as well. 

Water - Drink a ton of water to keep the virus from being too dry on the lungs and loosen mucus.

Keep the lungs elevated - Everyone is telling us to not lay down too much.  Try to walk around or sit up to keep the lungs from filling up.  And I have been doing chest physical therapy (CPT) on Brandon to loosen mucus.

The Lungs - Because Brandon is so medically fragile he also started on Symbicort to keep his airway open and after a week of running fever he started on Z-Pac for possible underlying pneumonia. On this last weekend we added Prednisone. All of this is to keep the lungs open and clear as possible. We both started taking Mucinex to keep mucus loose. He is down to 2 times a day for albuterol.

Experimental - I haven’t talked about this but by the first weekend we had the virus I was getting worried for both of us.  Our oxygen levels were between 90-95.  His fever was staying constant all day and I could tell his lungs were worse.  I was afraid we might be headed to the hospital by the end of the weekend.  I talked to Brandon’s doctor and she gave us an option of an experimental drug/supplement to take.  It has been used in Korea with great success.  I decided to buy it and have it on hand if I thought we were worse.  We were worse.  Brandon took 3 doses first as he worse.  He woke up the next day and proclaimed he felt fabulous.  Wow was that possible.  He was up most of the day and his fever was gone for a portion of the day.  The next couple of days he was almost fever free, but the 3rd day he started running a fever just at night. I started taking the experimental treatment the day after Brandon as I was worse.  The following day after I started it was the first time in a week I could take a deep breath.  I felt so much better.  Still had lung congestion and within a few days I developed a cough which I considered good.  The drug is called Cell Armour which is basically humic acid.  I am telling you this because Cell Armour may soon come on the market. But also telling you this because I think this drug may have saved our lives.  Brandon went up to 5 tablets a day in hopes to get the fever under control.  I am now off the drug and recovering from the lung congestion.  I sound good but I can feel the damage this virus has done to my lungs, I get tired and I am still coughing some.  Our goal was to stay out of the hospital and we so far have done that.  I think this is one of those illnesses that you don’t recover from quickly.  The above series of medicines has made a major difference for both of us so far.   

Lessons Learned:

  • I knew Brandon has a history on nose swab tests with inaccurate results.  I also knew that even the best of swab tests testing for COVID 19 have a 25% false negative rate.  Recommended take the COVID 19 test on two different days early in the infection. 
  • Brandon’s doctor has been great, but I really don’t have a PCP.  I have an endocrinologist, but this isn’t a doctor who normally does COVID.  Having a solid relationship with a primary care doc is important.  Because of this my test came back way too late, and the only advise I received was take aspirin, and if I am gasping for air as I make my way to the toilet, then go to the ER.  This is knowing I have diabetes. 
  • Of course, the obvious I didn’t talk about so far is it is always better to wear a mask, social distance and lots of hand washing.  As the weeks went on for this I saw less and less of this and started staying in even more.  Although we caught the virus, I still believe this is best approach. 
  • My best friend right now is the Favor App through HEB.  In fact, I would say HEB is the hero in my book for taking on the COVID 19 but trying to keep their own employees and those who shop there safe. 
  • The latest news is that there will not be a vaccine until early next year.  It is only July.  We have at least 6 more months of possibly dealing with this virus unless we are able to significantly lower the rate of infection which so far is not working.  Based on several conversations with doctors, they stated that most of us are all likely to catch this virus because it is so contagious.  I hate being the bummer here.  Perhaps we all should be talking about how to get the best outcomes before we get sick as part of the conversation.  We have 6 months to be as immune strong as possible. I really don’t hear people talking about this. 
  • We are now hearing about other treatment options out there.  Go with the ones you and your doctor feel most comfortable with.  I think the sooner each person, especially those at risk gets some type of treatment once you have symptoms the better the outcome.  There will be others I am sure of it.  A few articles people sent. 
LA Times Article - https://www.latimes.com/world-nation/story/2020-05-15/this-small-texas-hospital-is-finding-ways-to-save-covid-19-patients