July 30, 2013
Michele and I are so excited to announce the arrival of our daughter, Gabriella Marie Reising. God has blessed is with a 7lb, 2oz, 18.5" beautiful baby girl. We are so grateful for all your prayers. What a victory! We are so excited.
Please read the rest of the story below...
January 31, 2013
Well, not much (but a lot) has transpired since our last update. Michele's health has continued to incrementally improve. Her liver enzymes were normal and then back up again at our last check up. Mayo has concluded that the sphincter of oddi disorder is the root. While Mayo has concluded this, they are not recommending that we do the surgery that comes along with it. The surgery has somewhere between a 5-20% chance (depending who you talk to) of causing pancreatitis. Pancreatitis apparently is a very nasty thing. It can mean anywhere from a week to a year in the hospital on a feeding tube. That being said, we have not had any further unction to pursue the sphincter of oddi surgery. We feel peace just pushing forward, adapting Michele's diet and trusting God for a change in direction if/when it is needed.
For many of you, you have walked with us through many challenging health episodes. In the last ten years or so, she has dealt with several severe strokes, as many as five TIA's (small strokes), has an implanted neuro-stimulator (pacemaker for her digestive system) that causes her digestive system to function, and as well has had over ten abdominal and intestinal surgeries. Yet, if you see her today, she looks like a million bucks and no one would assume she has had a single issue. She is amazing and beautiful to boot. Right now, we would rate her overall health at 80% and climbing.
Some might have been wondering, "As a couple, did Richard and Michele want kids?" The answer for most of the last 10+ years has been, "Yes, but they are not on our radar right now." Meaning, we were fixated on getting Michele well, and kids were a desire, but not an option beyond that focus. God had simply not made children a priority for us, especially in relationship with our health context.
Something changed about two years ago. Michele shared with me that she felt that God had increased her desire and priority for children in a strong and sudden way. I sensed God's unction as well. As a result, we have been working on this for about two years—knowing the whole time that Michele could not carry due to her health history.
…well, with excitement and trust I share that we are 13 weeks pregnant—our child being carried by Michele's cousin, Teresa. Teresa came to us about 18 months ago and offered to carry our child. She is an amazing person. She is a single mom who has an incredible testimony of God's transforming love. She has been a close part of our lives over the last six years as she has walked through some amazing life change. About the time God began increasing our desire to have children, Teresa offered (out of the blue) to carry our child if we would ever desire. Little did she know… :) Teresa is in a wonderful place, committed to God and serving in church. We are so grateful for her and are excited to see all that God has done in her life.
So, this might sound crazy to some, but we have not given up on having the life we believe God wants for us. We had the decision to either live without children, pointing at the challenges we had faced, or we could trust in the desire God had given us and believe Him for life abundant. We know it will be a lot of work. We know we can trust you to pray for us. Together, we will see a bit of God's glory on earth as we step out in faith. Life is simply more fun this way. It has renewed the mission God gave us as a young couple—"to have fun in life, serving God." Thank you so much for being a part.
Well, we are a bit further down the road. Right after Mayo I realized we needed a break. My attitude was lousy and I was emotionally exhausted. Michele and I got away for about a week and a half and spent some great time together praying, resting and doing much of nothing. It was so needed. Since that time, we have settled back close to the normal flow of things.
Michele has continued to battle pain and nausea that most days she can work through. About one day a week she is hit with pain that throws her day off and she has to stay in bed. Gratefully, the frequency of this severe level of pain has been decreasing recently.
This past week we got a call from Mayo, but it only was related to the genetic testing portion of her tests. Apparently, there was one anomaly with one of these genetic tests. They will be running more tests on some of her cryogenically frozen blood to see if there is any further indication of a defect that could gives us any insight or direction.
We still await a decisive call from her liver specialist there related to all the other tests. It seems that Mayo will not tell us anything conclusive until we get these additional tests back (assuming it will be another month).
What's also really interesting, and encouraging, is that Michele's strength has really been improving lately. She did routine blood tests this past week and for the first time in over a year or more, the liver enzyme that has been the key indicator of liver/bialary dysfunction is actual down to a rate that is considered normal. In talking with Michele about it, she shared with me that the pain level and the nausea level she deals with (while challenging) seems to have gone down considerably over the last few weeks—perhaps as much as 40%.
So, when it all boils down, we are interested to know what Mayo says, but we are confident and grateful that God has us covered. If we never hear another word from them, we will continue moving forward, trusting God.
Please continue praying for us that God would bring continued healing, clarity and direction. We trust there is wholeness in our future. How and when it comes, we are excited to find out.
Well, after 5 days at Mayo Clinic we head home today. The word of the week would have to be "thorough". Over 40 viles of blood and a plethora of other unfun tests later and it turns our we are still waiting for the full picture to come together. Part of what has been unexpected is their preoccupation with Michele's long history of challenges. So, not only have they been working on solving her current pressing concerns, but they are also pulling out all the stops, even doing genetic testing, to see if the latest challenge ties into to something bigger.
We go home today waiting for natural answers. We were told to expect 3-4 weeks before we would get the results. Sphincter of Oddi disorder is still the most probable candidate for our current challenge, just not one they are ready to move quickly on.
My personal challenge is that I just want it fixed. I want my wife well. It aches me to see her at 30% normal energy and to be fighting constant, severe pain and nausea. It hurts that her medical history is a novel—that this week her insurance company shared her story at a conference as a case study of complexity. I keep reminding myself to be patient and it reminds me of the 15 years Michele has been patiently enduring physical attacks. I stand in awe of her strength.
In spite of the lack of natural answers, we know God is with us. We have much to be encouraged about. We have ruled out many bad things. Who knows that we might be right around the corner from insight that does much more than just fix our current challenge. Michele has been a rock this whole week. I am the one exhausted in just about every way. I rarely ask, but I could use your prayers.
Well, after 3 days here at Mayo Clinic we are still running on a steady diet of testing and waiting. We like our lead physician. He is thourough and conservative. They are doing a plethora of tests that we could never get in Dallas. We expect to have a game plan by Friday. So far, the doctor's best guess is still sphincter of oddi disorder as we projected earlier. He wants to be thorough to consider everything else before we rest on that conclusion, due to the procedure involved. Thanks for continuing to pray. We will keep you posted!
We just arrived in Rochester, MN. Our first appointment begins Monday morning, the 27th, at 8:30am. After our initial consult, Michele will begin testing that will go on for days. Please be praying for the doctors, Michele's strength, her safety and that we get the clarity and direction that God has for us. We have had a strong sense of peace (almost an excitement) about this trip. We sense strongly that God has been leading us here. We know He is our trustworthy guide and our healer. Let's trust Him for big things together this week! "...with God all things are possible.”
I will give you an update in a few days or as soon as we know more. Thanks again for all your love, prayers and support.
We just talked to Mayo Clinic yesterday and it looks like we are getting started there on August 27th. They are saying to expect to be there 4-7 business days. We are excited—I know that sounds weird to be excited about going to the hospital, but we feel strongly that we will get to the bottom of things. Thanks for praying. I will keep you posted.
Michele has been fighting nausea and pain daily, as well as anemia. She will be getting a 4 hr iron infusion on Tuesday that should fix the anemia for now. But, for the most part, we are still in a waiting game.
More of her doctors have confirmed that the hemobilia that she suffered when her liver bled into her stomach and caused her to vomit blood in the hospital could have cleared out the bial/liver duct, causing the procedure she had to correct the sphincter of Oddi to respond normal. Their thinking is that it her issues with the sphincter are underlying and will return in short order.
Another interesting note is that one of her three liver enzymes remains high. It indicates that damage is occuring in the liver. Not fun.
Of course, we are anxious to get all of this resolved. She meets with the liver specialist in Dallas on the 20th and we are still patiently waiting for notice that Mayo Clinic in Rochester is ready for us. Thanks for continuing to pray.
Sorry for my delay with the update. The surgeon who performed the procedure gave us a number of possible reasons that the liver duct (and sphincter) looked healthy during the procedure. Several of them are very complicated and not all that likely. One thought was that the issue she is having is episodic—meaning that it happens sporadically and therefore could pass a test or fail a test randomly, with different results at different times.
Another major thought is that this area is not the true source of the problems and we need to look elsewhere. The next step given to us by the surgeon is to meet with a specific liver specialist (one who is considered to be among the best).
Our true desire is to go to Mayo Clinic. This is what we are working on. We hope to nail down plans for a trip to Mayo (either Jacksonville, FL, Rochester, MN or Scottsdale, AZ). We hope to be headed out within the week. Michele is very exhausted, very nauseated, very much in pain and very much ready to figure this out and move forward. Please be praying for her strength and joy. Shoot her a note of encouragement if you can. Thanks for all your support and continuing to pray!
July 26 Afternoon
Quick update: The procedure is over and Michele is resting well—believe it or not, at home. During the procedure, the doctor tested the liver duct and determined that it was functioning well and therefore decided against doing the surgery. So, no cutting or nothing too invasive. This is great news for today, but it eliminates the sphincter/duct as a cause for the pain and elevated liver enzymes. So... more testing to come. The doctor gave us more insight but it is cumbersome and I will type it up and put in on the weblink tomorrow if you are interested to read more. Thanks again for all!
Well, today's the day. Surgery is at 1pm. God, we thank you for a great day and a successful surgery. Thank you for your love for Michele and all our great friends and family who are standing with us. I'll keep you posted.
We are almost two weeks out from being in the hospital and I am grateful to say we've been largely without a major incident. Michele has been mostly resting. She is exhausted. She continues to fight nasuea, a low grade fever and constant pain—but has a remarkable attitude that I am in awe of. She is anemic (meaning her red blood cells, iron and potassium are extremely low) and we will likely need an iron infusion in the next few weeks.
We have met with several doctors over the last week and there seems to be consensus. We were encouraged to move forward with the surgery: ERCP with sphincterotomy. It is partly a scope procedure where they test the response of the sphincter of oddi muscle and then likely sever the muscle. With Michele so weak, I originally thought it might be better to wait for her to strengthen up before doing the procedure, but I was reassured by one of her doctors that the procedure is what she needs to regain strength. We also met with the surgeon. He is one of only a few surgeons in the nation who performs the specific procedure. We have scheduled the surgery for this coming Thursday (July 26th) at 11am at Methodist Hospital in Dallas. If all goes to plan she should be in the hospital for about two days.
Please pray for God's hand and direction in all we do. The doctor's main concern is having Michele off of blood thinner for the surgery. She is required to be off it to decrease bleeding and ensure proper clotting for the cuts they make in her muscle, but it adds the risk of clotting in ways we do not want. As well, there is a very high risk of pancreatitis with this procedure. As always, I ask for and appreciate your prayers. It is time to see Michele fully healthy!
I'm excited to share that Michele made it home last night (Thursday night around 7pm). That makes 14 days in the hospital. Please be praying for her mother, who was admitted (and since released) to the ER with exhaustion about when Michele checked out. As well, I am still struggling with bouts of the fever and vomiting. We are a bunch of tired puppies.
The great news is that we have clear next steps. The doctors are in agreement that the root of her issues has been... Sphincter of Oddi Type 2 Dysfunction. We also have some options on treatment—surgery at either Methodist Hospital Dallas or Mayo Clinic. From our research, people who have had the surgery claim excellent results. Of course, we will be praying about what we do and when, and I promise to keep you in the loop.
If you are medically curious, you can read more about it at... http://www.thesphincterofoddi.com/faqs.htm or http://en.wikipedia.org/wiki/Sphincter_of_Oddi_dysfunction. In the meantime, we celebrate God's goodness and His hand upon us. We will unplug and rest as we prepare for the next phase. We cannot begin to thank you enough all for your prayers, encouragement and support! We have never felt so loved and encouraged!
The weekend was a combination of rest and nausea—for both of us. It was a trying time as I (Richard) got dehydrated and began running a 101 degree fever. My fever forced me to be at home sleeping and vomiting and not be able to spend time with Michele, who was doing much of the same. Crazy times. The good news is that I no longer have a fever and I can be with her once again.
The latest is a combination of encouraging insight and undesirable delays. They have potentially narrowed down the issue to a muscular spasm in the liver duct that... mimics gall stone pain, is usually only seen after gallbladder removal (which she had last year), and is one of the most difficult to diagnose issues in the body. The challenge is that this hospital does not have the ability to do final testing for it nor the surgery to correct it.
What this means, is that Michele will have to start up blood thinners and get dismissed from the hospital (likely Wednesday), only to have to get in line at another hospital (perhaps Methodist or Mayo), where she can proceed with treatment. Please be praying that the liver doesn't bleed as she gets back on blood thinners and that God continues to clarify the root.
Since yesterday, Michele has continued to rest and stabilize. She even ate about 1/2 cup of potatoes; which is a major milestone seeing that she has been on a clear liquid diet for almost 10 days. The doctor believes if she continues improving, she should be able to go home by Tuesday, and he will begin a plan for further testing once he feels she is ready. I will definitely send an update if anything changes. Thank you again so much for praying. Thank you for continuing to trust the Lord for healing and insight into the root cause.
Update: Since arriving in the ICU (intensive care unit) yesterday, Michele has not vomited blood (or anything for that matter) and her fever has gone away. As well her hemoglobin levels indicate that her blood loss has turned a corner for the better. We are very encouraged by the signs. We are so thankful to a loving and mighty God who is ever-present with His tender mercies and power. I know He is with us and your prayers and encouragements fuel our faith tremendously. Please be praying that the roots of all of this would become evident, that she would continue to strengthen, and that no clotting issues would surface as she has been of her blood thinner for some time now. She is sleeping well at the moment—my hope is that she'll sleep till noon. Thanks so much for your prayers.
Yesterday was a calming day. Michele slept a lot. She ran a light fever but did not vomit or bleed internally (from what we can tell). She was released from the ICU back into a normal room—which is a hugely encouraging step of improvement. Praise God for that! The care is not the same, as the ICU has 1 nurse to 2 patients, where the normal floor has 1 nurse to 9 patients. Even so, it is very encouraging progress. Trusting that she continues to normalize over the next few days, the doctors will switch from crisis mode back to diagnostic mode—meaning that they will begin to do more tests to investigate the root of her liver issues. The biopsy came back clear, but her enzyme levels have been bouncing around between normal and very unhealthy levels (10-20 times normal) for years now, and they feel this likely plays a major role in what have been her ongoing challenges. She is still in a lot of pain and struggles with severe nausea. She is sleeping soundly now. Please be praying that her pain and nausea levels would go down and that the roots of her body's issues would be revealed. Job 12:22 "He reveals mysteries from the darkness And brings the deep darkness into light." Thank you so much for trusting God with us. You have no idea how much your prayers and encouragements mean to us. Please keep it up. For those that are able to visit, the next few days should be perfect. We know she will be in the hospital till at least Monday. She is not sleeping all that well, so her sleep schedule is late into the morning. The best windows to visit are noon-2pm and 5-8pm. We are at Presbyterian Dallas in Room 649.
Since the last update, Michele's bleeding has continued so the doctor chose last night (3am this morning) to move her to the ICU (Intensive Care Unit) where she could get better care and more routine labs. This is a good thing. The care is considerably better and the environment is day and night nicer and more calm. She is resting well. Thanks again for your prayers.
Later June 25
After throwing up a significant amount of blood this morning, the doctor did an endoscopy. Because of the concern of getting blood in her lungs, they put her on a breathing tube for the procedure. They found a large amount of blood in her stomach—which they pumped out. They found that her liver is bleeding into her stomach. They assume the liver is bleeding from the biopsy from earlier this week. She was given a blood transfusion and taken off of her blood thinner.
They are watching her carefully. She is off the breathing tube and back in the room. She is resting well and recovering. Goodness, she is beautiful. The doctor believes that the duct between the liver and the stomach is not only the route of the blood and clots that were in her stomach, but that blockage of that duct might also be the source of some of her ongoing problems. We will keep you posted. Thank you for continuing to pray.
Long story short, she was admitted to the ER on Friday (they thought there was blood in her urine) and later to the hospital that night. It turns out that what she was dealing with was excessive bilirubin, a byproduct of overproducing liver enzymes (hers have been 10x normal at times). Elevated liver enzymes is a main reason Michele has been having tests (endoscopy, colonoscopy, etc.) over the last week. It has also been a common symptom during all of her strokes and health issues over the last decade. It has caused us to deeply study the liver (including the liver biopsy she had last week).
The doctor has been quite concerned about how she has been feeling—severe pain and nausea and he has been coming up throughout the weekend in spite of having the weekend off. Twice now since she has been here, she has thrown up blood. The latest has been this morning and it was a significant amount. They are prepping for another endoscopy this morning to see if they can learn more about the source of the blood—it could be severe and related to the liver or could simply be trauma in the intestines from excessive vomiting.
Needless to say, we've been in Presbyterian Hospital all weekend and will likely be here for several more days. Please be encouraged. We believe that what we are to find out about the liver will give us great insight for how to handle her health issues. Please pray that God would reveal the source of the issue in full. Please pray for an infusion of strength and faith for Michele from the Spirit. As you can imagine, this has been incredibly draining on her.
They are now working to get blood out of stomach. Serious procedure. Thanks for praying!!!
Just wanted to give you an update on Michele. Pain and nausea increased yesterday and we thought she had blood in her urine. Turns out her liver was overacting and producing excessive bilirubin. We went to the ER per doctors instructs and they ran tests all night. They admitted her to the hospital (presby) for at least a day or two. All is well. Doctor is just waiting to hear from liver specialist about what tests he can run while she is here. Liver enzymes have been off the charts. Just letting you know so you can pray. No urgent action needed. I'm propped up by her side and we are chillin.