Glorious Color

 

Letter to Dr. Whitcomb

     Following is an e-mail that I sent to Dr. David C Whitcomb, Professor of Medicine, Cell Biology &         Molecular Physiology, and Human Genetics at University of Pittsburg. His professional career has             focused on understanding the origin and nature of pancreatic diseases for the purpose of providing             effective preventative and therapeutic interventions. I am hoping for a prompt response.

     Dear Dr. Whitcomb,

I just finished listening to your presentation on the mission cure website about genetics and pancreatitis. It was an excellent presentation and very insightful. I cannot thank you enough for your dedication to this field and your enthusiasm for changing the history of this horrible disease process.

My husband, Larry started having recurring acute pancreatitis in 2013 at age 47. To date he has had 34 hospital stays and 49 documented attacks (does not account for all of the mini attacks). After about a year and a half of being what we thought was attack free, he started having what we thought were GI problems last September, which eventually resulted in a complete inability to eat or drink and a 40 lb. weight loss.

When he first started having the symptoms last September he went in for a colonoscopy and everything checked out to be ok. I had to convince him to go to the ER a few months later when he was still struggling and his enzymes were a little bit elevated and they indicated that on the CT scan his pancreas looked a little inflammed, but nothing alarming. FINALLY at the beginning of January we ended up in the ER again when he couldn't keep anything down, had lost so much weight, and was throwing up and in constant pain. At this visit the ER doctors were very alarmed at his pancreas on the CT scans and said that it looked like it had been run over by a freight train. Other doctors that have reviewed these scans have described the image of his pancreas as looking like somebody had ripped it out, thrown it on the sidewalk, and beat it over and over again with a baseball bat.

For the first time since this whole process had started, Larry was put on an NJ tube and a couple of weeks later he had a stent placed in his pancreas because his pancreatic duct had completely dissolved. He has also currently on blood thinners, and spent a good month on 24 hr. high doses of antibiotics through a pic line due to his high risk for infections. The stent was placed on January 21st and since that time he has still only been able to eat very soft foods, such as pudding or soup, and he is not even able to eat all of those all of the time. Thankfully, even though he has learned to absolutely hate the NJ tube, he is usually able to tolerate the feedings.

On March 9th Larry had a repeat of the CT scan and met with Dr. Braden his gastroenterologist. Dr. Braden said the pancreas is healing, but it seems to be much slower than he would like. Last week we were also FINALLY able to meet with a genetic counselor and Larry's genetic testing was sent to the lab last Monday, March 13th which we are all anxiously awaiting the results for, especially because his paternal grandmother died an incredibly painful death of pancreatic cancer at the young age of 49. It is my understanding that she started having stomach pains at the age of 48 in March and she essentially starved to death for 1 1/2 years and passed away in December of the following year at 65 pounds.

All facts would indicate that Larry's pancreatitis started because of a toxic mold exposure that our family had. In 2012 we moved to a new house in November and by February of 2013 our family started having some very severe health problems--pancreatitis, Bell's palsy, asthma, chronic coughs, and my 13 year old son, Spencer, was diagnosed with Type 1 diabetes. All of these symptoms came on in a very short amount of time and once we left the environment we stopped having the intense health problems minus the pancreatic damage that had been done in my husband and son. We ended up going to Dr. Hope, MD in Santa Barbara, CA who specializes in environmental toxicity. ALL of our urine was positive for tricothecenes (some of the most deadly mycotoxins in existence) which I suspect was the culprit behind all of our problems.

In regards to my son, Spencer, he has mostly done an amazing job at managing his Type 1 diabetes. I know few people who are as disciplined at healthy eating and determined to have optimal health. Having Type 1 and his frustration with the lack of good information (specifically nutrition) has motivated him to become a doctor and he is currently in his 2nd year of his Undergraduate studies in Nutritional Science at BYU. My heart is absolutely broken, however, as I continue to watch him battle for good health on a daily basis despite his incredibly good health habits and lifestyle.

In the Summer of 2017 he served an LDS mission in Washington state. The first year his health was relatively good, but the second year of his mission something changed and he started having health problems that included headaches, stomach pains, malaborption, brain fog, and weight loss. They tried to diagnose him with depression, but we were both convinced it was more than that. Amazingly, he muddled through his mission and crawled to the finish line. During this time period he tried several supplements, was treated for hp palori, and adopted a gluten-free lifestyle. Looking back I suspect that he had possibly started having pancreatitis.

A few weeks ago I finally convinced him to go to the ER and get checked out when he had been unable to eat and drink for a few days and was having stomach pains. Because his enzyme levels came back normal they treated him for dehydration and sent him home. Unfortunately, this experience just solidified in Spencer's mind that the doctors are not going to be able to help him.

As Larry and I are the parents of seven amazing children (ages 7-23), three of whom have also been diagnosed with a rare genetic disease, ataxia-telangiectasia (A-T), we need our husband and father! I am writing you out of sheer desperation that you might be able to offer me some insights and direction as to where to go from here. 

As a caretaker of all of these people, I am exhausted, tired, and I could really use some expert advice. I have spent countless hours and sleepless nights doing research, contacting experts in various fields, trying to keep the bills paid, making and going to doctors appointments, and negotiating with insurance companies. Any insight or direction that you could give to me would be so greatly appreciated. Thank you for your time.

Sincerely,

Jill Ward

P.S. One other thought in regards to three of my children have A-T. This disease is caused by two recessive ATM genes. As Larry is one of the parents it is pretty much a given that he carries the ATM gene. The ATM gene is know for high rates of pancreatic and breast cancer in people that carry it. Is it possible that his pancreatitis could have been triggered because of this gene?

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Waiting on the Lord

By Elder Jeffrey R. Holland

Of the Quorum of the Twelve Apostles

Faith means trusting God in good times and bad, even if that includes some suffering until we see His arm revealed in our behalf.

My beloved brothers and sisters, we are all eager—no one more than I—to hear concluding remarks from our beloved prophet, President Russell M. Nelson. This has been a marvelous conference, but it is the second time that COVID-19 has altered our traditional proceedings. We are so tired of this contagion, we feel like tearing our hair out. And apparently, some of my Brethren have already taken that course of action. Please know that we do pray constantly for those who have been affected in any way, especially for any who have lost loved ones. Everyone agrees that this has gone on much, much too long.

How long do we wait for relief from hardships that come upon us? What about enduring personal trials while we wait and wait, and help seems so slow in coming? Why the delay when burdens seem more than we can bear?

While asking such questions, we can, if we try, hear another’s cry echoing from a dank, dark prison cell during one of the coldest winters then on record in that locale.

“O God, where art thou?” we hear from the depths of Liberty Jail. “And where is the pavilion that covereth thy hiding place? How long shall thy hand be stayed?”¹ How long, O Lord, how long?

So, we are not the first nor will we be the last to ask such questions when sorrows bear down on us or an ache in our heart goes on and on. I am not now speaking of pandemics or prisons but of you, your family, and your neighbors who face any number of such challenges. I speak of the yearning of many who would like to be married and aren’t or who are married and wish the relationship were a little more celestial. I speak of those who have to deal with the unwanted appearance of a serious medical condition—perhaps an incurable one—or who face a lifelong battle with a genetic defect that has no remedy. I speak of the continuing struggle with emotional and mental health challenges that weigh heavily on the souls of so many who suffer with them, and on the hearts of those who love and suffer with them. I speak of the poor, whom the Savior told us never to forget, and I speak of you waiting for the return of a child, no matter what the age, who has chosen a path different from the one you prayed he or she would take.

Furthermore, I acknowledge that even this long list of things for which we might wait personally does not attempt to address the large economic, political, and social concerns that confront us collectively. Our Father in Heaven clearly expects us to address these wrenching public issues as well as the personal ones, but there will be times in our lives when even our best spiritual effort and earnest, pleading prayers do not yield the victories for which we have yearned, whether that be regarding the large global matters or the small personal ones. So while we work and wait together for the answers to some of our prayers, I offer you my apostolic promise that they are heard and they are answered, though perhaps not at the time or in the way we wanted. But they are always answered at the time and in the way an omniscient and eternally compassionate parent should answer them. My beloved brothers and sisters, please understand that He who never sleeps nor slumbers² cares for the happiness and ultimate exaltation of His children above all else that a divine being has to do. He is pure love, gloriously personified, and Merciful Father is His name.

“Well, if this is the case,” you might say, “shouldn’t His love and mercy simply part our personal Red Seas and allow us to walk through our troubles on dry ground? Shouldn’t He send 21st-century seagulls winging in from somewhere to gobble up all of our pesky 21st-century crickets?”

The answer to such questions is “Yes, God can provide miracles instantaneously, but sooner or later we learn that the times and seasons of our mortal journey are His and His alone to direct.” He administers that calendar to every one of us individually. For every infirm man healed instantly as he waits to enter the Pool of Bethesda,³ someone else will spend 40 years in the desert waiting to enter the promised land.⁴ For every Nephi and Lehi divinely protected by an encircling flame of fire for their faith,⁵ we have an Abinadi burned at a stake of flaming fire for his.⁶ And we remember that the same Elijah who in an instant called down fire from heaven to bear witness against the priests of Baal⁷ is the same Elijah who endured a period when there was no rain for years and who, for a time, was fed only by the skimpy sustenance that could be carried in a raven’s claw.⁸ By my estimation, that can’t have been anything we would call a “happy meal.”

The point? The point is that faith means trusting God in good times and bad, even if that includes some suffering until we see His arm revealed in our behalf.⁹ That can be difficult in our modern world when many have come to believe that the highest good in life is to avoid all suffering, that no one should ever anguish over anything.¹⁰ But that belief will never lead us to “the measure of the stature of the fulness of Christ.”¹¹

With apologies to Elder Neal A. Maxwell for daring to modify and enlarge something he once said, I too suggest that “one’s life … cannot be both faith-filled and stress-free.” It simply will not work “to glide naively through life,” saying as we sip another glass of lemonade, “Lord, give me all thy choicest virtues, but be certain not to give me grief, nor sorrow, nor pain, nor opposition. Please do not let anyone dislike me or betray me, and above all, do not ever let me feel forsaken by Thee or those I love. In fact, Lord, be careful to keep me from all the experiences that made Thee divine. And then, when the rough sledding by everyone else is over, please let me come and dwell with Thee, where I can boast about how similar our strengths and our characters are as I float along on my cloud of comfortable Christianity.”¹²

My beloved brothers and sisters, Christianity is comforting, but it is often not comfortable. The path to holiness and happiness here and hereafter is a long and sometimes rocky one. It takes time and tenacity to walk it. But, of course, the reward for doing so is monumental. This truth is taught clearly and persuasively in the 32nd chapter of Alma in the Book of Mormon. There this great high priest teaches that if the word of God is planted in our hearts as a mere seed, and if we care enough to water, weed, nourish, and encourage it, it will in the future bear fruit “which is most precious, … sweet above all that is sweet,” the consuming of which leads to a condition of no more thirst and no more hunger.¹³

Many lessons are taught in this remarkable chapter, but central to them all is the axiom that the seed has to be nourished and we must wait for it to mature; we “[look] forward with an eye of faith to the fruit thereof.”¹⁴ Our harvest, Alma says, comes “by and by.”¹⁵ Little wonder that he concludes his remarkable instruction by repeating three times a call for diligence and patience in nurturing the word of God in our hearts, “waiting,” as he says, with “long-suffering … for the tree to bring forth fruit unto you.”¹⁶

COVID and cancer, doubt and dismay, financial trouble and family trials. When will these burdens be lifted? The answer is “by and by.”¹⁷ And whether that be a short period or a long one is not always ours to say, but by the grace of God, the blessings will come to those who hold fast to the gospel of Jesus Christ. That issue was settled in a very private garden and on a very public hill in Jerusalem long ago.

As we now hear our beloved prophet close this conference, may we remember, as Russell Nelson has demonstrated all of his life, that those who “wait upon the Lord shall renew their strength [and] shall mount up with wings as eagles; they shall run, and not be weary; … they shall walk, and not faint.”¹⁸ I pray that “by and by”—soon or late—those blessings will come to every one of you who seeks relief from your sorrow and freedom from your grief. I bear witness of God’s love and of the Restoration of His glorious gospel, which is, in one way or another, the answer to every issue we face in life. In the redeeming name of the Lord Jesus Christ, amen.

 

Outcomes of Endoscopy & Stent Placement

Larry is done with his surgery. The good news is that the surgery went pretty quickly and they were able to get the stent placed. Larry is, however, having some abdominal pains that may just be from going inside, but may also be from pancreatitis. We are not sure yet, but they are giving him pain meds.

Outcomes from the surgery:

1. They ran dye through the stent and it seems to be draining well. The purpose of the stent is to allow the excess fluid from the pancreas to drain out to avoid further complications such as sepsis. The plan is to give the body support so it can heal itself.

2. The feeding tube has been removed. Largely so the doctor could get into where he needed to. The hope is that he cans tart eating very slowly and not have the feeding tube put back in, but there is a chance that he will have to have it replaced.

3. The pancreas is in pretty bad shape, like cottage cheese. The duct to the pancreas is extremely misshapen. The good news is that the pancreas is one organ that can regenerate itself, but at this point we are not sure how much it will regenerate and how extensive the damage really is.

4. There are growths that are possibly cancerous. We have been referred to Dr. Moesinger in Ogden and will be meeting with him in the next day or two for a CT scan and consult.

Just as a side not, we met with a urologist yesterday that we have been waiting to get into for several weeks. Larry has an enlarged prostrate and will be having surgery in 8 weeks to have it reduced. All of these problems started about 3 mos. ago.

Placement of Stent

Surgery is tomorrow. Larry is extremely uncomfortable and still pretty weak, but we are very grateful that he is able to get some nutrition and hydration while we figure this thing out. 

He is scheduled to meet with Dr. Sandhu, a gastroenterologist at LDS Hospital tomorrow at 12:30 to address his necrotizing pancreas and the cyst on his pancreas. It is our understanding that they are going to clean up the dead tissue around the pancreas and drain the cyst.

They will be doing a gastointestinal endoscopy (a procedure where they put a tube down your throat to be able to look inside the digestive area). When they do this there is a chance that they will have to replace his feeding tube, but he will be out for the procedure so it shouldn't be as uncomfortable as when he had it put in the first time. 

We just got a phone call from the nurse this evening saying that after reviewing Larry's chart he thought it would be possible to put a stent going from his pancreas to his stomach to hopefully avoid having continued pancreatitis. It sound like he will be having the stent placed tomorrow also.

We were told that the whole procedure should take about three hours. We are very excited about the possibility of the stent.

Endoscopy

 Larry went in for an endoscopy last Wednesday. They have never done one before because there is a high risk of it irritating the pancreas and causing another pancreatic attack. Because the pancreas is necrotizing (dying) the surgeon placed a stint in the badly misshapen pancreatic duct in hopes of helping the pancreas to drain and facilitate the body's ability to heal. He thought that he might be able to perform the endoscopy without removing the feeding tube, but he ended up having to remove the tube and did not replace it. 

He suggested that Larry wait 24 hrs and then start drinking water, followed by juice, pudding etc. I personally did not think this was a good idea, but the Dr thought the stint might help him be able to digest food. His findings from the endoscopy were that Larry's pancreas was like cottage cheese, the pancreatic duct was extremely deformed, and he was concerned about what he looked like we're a couple of tumors or growths. He did not biopsy them for fear of spreading cancer if they were cancerous. 

The eating thing did not go well and by Fri afternoon Larry had gone back into a full blown attack (I knew he was in trouble when he went for a pain patch because he only uses them as a very last resort). We knew he needed fluids, pain control, and some kind of feeding tube put back in. We decided to get out of the IHC loop and come down to the U of U to get a second opinion. We have been here since last night and Larry will be here for at least a few days. 

There will be a team of GI specialists meeting with him in the next day or two to hopefully get to the root of all of this and help us out together a sustainable plan. After doing another scan they do not seem to think there were tumors (super good, bit extremely confusing news). There were, however, some answers on the liver that they wanted to look at and there was another blood clot which seems to be par for the pancreatitis course. The night before Larry went into the surgery he was given a beautiful blessing of healing and that the Drs would be led and guided. Those are the blessings and promises that we are holding onto. We feel all of your love and concern and appreciate it more.than you will ever know.♥️

FYI We got to the ER about 7 pm last night, but he was not admitted to the hospital until 4 am. After a very long night in a pretty trashy emergency room and a dinky exam room with just a chair for me to sit in I was looking forward to sleeping on the couch in the room that the nurse had told me about. Unfortunately, she was misinformed and I was not allowed to stay the night. I was so tired I just ended up sleeping in the parking garage in the Prius. I just ran the car for 4 Hrs so I would have heat (luckily it doesn't take any gas running like that) and I just turned on conference and tried to sleep.🙄 I got special permission to stay tonight because of the weather, but I will be going home in the morning and will probably come back Monday morning.

Update on Larry

 

• Yesterday and today were very draining days physically and emotionally. Yesterday we saw the GI in Logan and today we saw the infectious disease doctor up in SLC. What we have learned is that:

  
  1. The inflammation in the pancreas has gone down
  2. The cysts in his body have shrunk or dissolved, so we are making progress, but he is going to have his pic line in with 24/7 antibiotics for two more weeks and then go to an oral antibiotic.
  3. He still has blood clots so he will remain on the blood thinners for now
  4. Thanks to NJ tube he has put 10 lbs back on! He will have the tube for atleast three more weeks.
  5. The stent that was placed in his pancreas is still in place and will likely stay there for at least another month. The GI doctor said to us a couple of times that it was.a miracle.that Dr. Sandhu was.even able to get it in place and it likely saved Larry's life and for that we are grateful.
  
  He is still only able to orally eat jellos, pudding, applesauce, soups, and light crackers. He tried to eat a protein bar last Sunday and it did not end so well.
  
  Even though we do not know how all of this will end, we know that we have been blessed and watched over in so many ways and for that we are so incredibly grateful. We know that God is watching over us and all of our prayers are being heard and answered, maybe not always in the way or speed that we would like, but they are being heard.
  

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Spencer keeps having pancreatitis symptoms (pain in the stomach radiating to the back, not eating or drinking, problems breathing and just feeling plain miserable) and I finally convinced him to go the the ER last night. Frustratingly, all of his blood work came back normal including his enzyme levels, which were actually on the low side. His blood work did, however, indicate that he was dehydrated so they gave him some fluids. Sadly, this ER visit only added to the narrative that the medical community will never be able to help him and he made the comment that this is exactly why he avoids going to the doctor.

The doctor was strongly suspecting kidney stones, but when there was no blood in his urine she opted not to. As I have started putting all of the puzzle pieces together and watch Larry & Spencer suffer in very similar ways, I highly suspect that he has had chronic pancreatitis for at least a few years. My suspicion would be that it started the second year of his mission when he got really sick and started having a variety of health problems, including losing weight, stomach pains, and lack of energy.

After posing my suspicion about Spencer possibly still having pancreatitis even though his enzyme levels were not elevated to the pancreatic group I learned a lot. I learned that many fellow pancreatic sufferers had had experience with having pancreatitis without the enzyme levels being elevated. It's possible that if they would have went ahead and did the CT scan that they may have been able to identify some inflammation, but the endoscopy with ultrasound is the most reliable. I learned that there can be scarring and calcification going on without the intense pain. It was also suggested that I look up MALS. Median arcuate ligament syndrome (MALS) is a rare entity characterized by extrinsic compression of the celiac artery and symptoms of postprandial epigastric pain, nausea, vomiting, and weight loss mimicking mesenteric ischemia.

Signs and symptoms of MALS include:

• Pain in the upper middle stomach area, which may go away when leaning forward.
• Stomach pain after eating, exercising or shifting body position.
• Fear of eating food due to pain, leading to significant weight loss — usually greater than 20 pounds (9.1 kilograms)
• Bloating.

I am anxiously waiting to get Larry's genetic testing back (about 4 weeks) so that we can hopefully have some more answers.