Heading Home!

Here are some disturbing facts that I have learned today. Apparently, we are supposed to travel naked! We just paid $80 for us to both check two bags. Even more concerning, Sky Mall now sells a portable microwave for those who want to carry it around like a brief case. That cannot be safe. Speaking of safety...they also make a stainless steel wallet. How do you get that through security. Our new friends sent us home with a tiny jar of homemade raspberry jelly and it was almost considered contraband! Haha

Okay, for the serious stuff: We arrived at the Clinic at 7:30am to try standby one more time. About 9:30am, Penny...an amazing nurse, came and told me they were going to see me. We met with the urologist who rushed testing for us too. We left the clinic and arrived at the airport with plenty of time to spare. Speaking of blessings, they were able to switch our seats so John and I could sit together, and we arrived 30 minutes early to Chicago! It has been an awesome day! We are expecting to land in SA around 9:40pm where we will be met by my parents and presumably, very tired children.

Within a week or two, we should receive all of our reports and instructions from all of the Mayo Clinic specialists. Then we will schedule our meeting with a rheumatologist and start the immune suppressant drugs....and about 20 other new meds that they are adding to the list. I may need a schedule board like at the airport to keep them all straight. Jk

Thank you again to everyone for your prayers and support. I ask that you continue to pray with me for my amazing family. This hasn't been easy for any of them, but they have all handled it with grace and loving support. I know how blessed I am to have each of you in my life. God Bless!

Thursday Update

Today is my Bradie's 10th Birthday! Happy Birthday sweet angel. It sounded like you had a great day today when I spoke with you. Your birthday must have brought the lucky rain I heard about!

We started the morning with our follow up with gastro. We got great news. My ulcers haven't actually flared. The pain that I have is from the auto immune disease attacking my stomach and intestines. We will be able to treat this with medicine and surgery will not be required. Whoo hoo!

We did spend the next 7 hours waiting for neurology...but to no avail. They have asked that we return in the morning and give it one last try before we leave tomorrow. If we cannot get in, we will need to see a urologist in SA. They are farely confident that because of the neurological disconnect, that I am having reflux back into my kidneys. This too, we expect will be treated with medicine.

Late this afternoon, we went for our final meeting at neurology. We first met with a wonderful doctor who is an MD that specializes in auto-immune diseases. She is partnered with the main neurologist here that we have been seeing. After she reviewed the reports from all of my other specialists I saw this week, and reviewed the labs that were run, she agreed with our feelings about triggering a relapse. She agrees that the risk and the detrimental set back is too much. She stepped out of the office to council with our main neurologist before he came in, and she went-to-bat for me! He said that if I were staying in town and he was going to be implementing the plan, he would still prefer to trigger the relapse and run the other tests, but agreed to just move forward.

When we return to town, we will meet with a rheumatologist and begin the immune-suppressant therapy. It will take several months to get the dosing right, and they do expect some set backs with my immune system being so temperamental...so we will begin as soon as possible. After 3 months, we will try to take away the steroids and see how my body responds.

It will be a continuous battle, but not one that we feel we cannot handle. John and I have been blessed by the Lord, our family, church, and friends! I hope everyone knows how much we appreciate this support. I have a restored faith, strength, and will to keep fighting. Lots of love!

P.S. John and I stepped outside the hotel this evening for a fun event. They call it "Thursday on 1st". They line the patio outside our hotel with vendors and set up stage for entertainment. The white building in the background is affectionately nicknamed the "terrorist tower." It is the tallest building in Rochester. An Arab family walked up to the contractor and paid for the building in full with a roll of cash. We have been informed that there is a plan to add on to the Mayo Clinic's Gonda Building to make it surpass in height.

Productive Wednesday

Let me start by telling everyone about my rockstar family! My mother and sister took the kids to Sea World yesterday. Bradie got too hot and threw up on a lady in line for one of the rides. My family never fails to step up to the plate...even when it is less than glamorous.

We woke up at 5:30 again to go have more lab work done. We then went and met with the gastroenterologist. He immediately sent me for an endoscopy and biopsy of my stomach. After I woke up, we moved down to urology. They still were not able to fit us in, but did tell us that there is a good chance that they will be able to see me tomorrow.

We will meet back with gastro in the morning to review the biopsy and pictures. Then we will return to standby at urology. Keep praying for doors to open. It is crucial that we rule out or resolve complications so that we can begin our ultimate Care Plan with neurology. The Lord has opened so many doors since we have been here. I have faith that he will hear our prayers. We will end the day tomorrow with a follow up at Neurology.

Tonight, we are being taken to Rochester's famous steak house Michael's. We are looking forward to the time away from the hospital and the time to feel like something other than a patient. I cannot tell you how amazing everyone here has been...especially my husband!

In the pictures above: John and I are standing in the Gonda Building(part of the Mayo Clinic) overlooking our hotel. The second picture is of the Plummer Building. This was the original Mayo Clinic. The other 23 buildings were built around this one as the corner stone.

Tuesday Update

John and I met with the Endocrinologist this morning after our lab work and MRI. He also confirmed the diagnosis and doesn't feel the need to adjust the Care Plan that Neurology has designed. He does want to start monitoring bone density due to the steroids and possibly add some Vitamin D for the bone strength. We are also running more tests to check on the pancreas. Since I was pre-diabetic prior to the steroids and insulin dependant on them, they want to predict what will happen down the road.

We then went down to gastro and met a wonderful nurse named Shelly. She told us that there were not any appointments available. She knew that we also were trying to get into urology. She took my cell phone number and sent us on our way. After we left, she went to the back and pulled strings. She called me and said that we now have an appt at 8am tomorrow morning. God is good!

We are still trying to get into the urologist. Unfortunately, they have told me there are only two that can work with my condition. We are going to go sit on stand by and pray that an opening comes free before we leave. Come on prayer warriors!

We spent the evening at a friends farm. We sat on the deck and watched the cattle in the GREEN pasture before enjoying a great dinner. The weather has been in the mid 70s with a cool breeze! Minnesota is showing off its best while we are here.

Lots of love to everyone! We are heading to bed early for another full day. God Bless!

Morning Update

We knocked out an MRI and blood work all before 9am. We got our next schedule of events. We will meet with an endocrinologist at 9:45am. I am sure he will order more tests. Right now, they have scheduled the gastro consult for Friday morning and Urology for Aug. 27th! So....we will be spending the next couple of days in the lobbies trying to get in on stand by. We will let you know more when we do. You are all so amazing! We feel truly blessed to know that we have your support...despite how cheerful I look here! JK

A date with Neurology

Quick personal indulgence...I love you Bradie and Logan! Here is a picture of mommy doing fine! I will see you on Saturday. Be good and make me proud. Logan...keep your chin up and be strong. Bradie...I am so proud of the help you are giving Nonnie! Now you both quit reading The rest is for the adults!

We spent the day with our Neurologist, Dr. McKeon. He is a very serious little Irish man! At the end of the day, he feels fairly confident confirming the diagnosis of Hashimoto's Encephalopathy. When it comes to treatment or management...that is where it is going to get complicated. There are still a couple other neurological diseases that must be ruled out in order for us to follow the treatment plan. Unfortunately, these tests cannot be done while I am on steroids. I have been asked to come off of the steroids, allow a relapse to occur, and run the required tests. At that point, I could return to the steroids and add an immune suppressant drug.

Here are the points of concern: With a relapse, I run the risk of coma, stroke, or death. My doctor feels the risk is necessary. When the relapse occurs, I will have a set back that slows down my ultimate goal of living in remission. Once we are able to restart the steroids, the immune suppressant drugs will bring their own complications. I will be at a high risk for infections and increased chance for cancer. I will have to receive the drugs through IVIG which will mean going in for the intravenous treatment, then daily...weekly...monthly blood draws to monitor about a 1000 complications that can occur.

Here are some positives: I will be able to come off of the steroids gradually once on the immune suppressant drugs...we hope. After a few years of the immune suppressant drug, we can attempt to come off of these drugs. One great point is that this neurologist is comfortable with designing a plan, but allowing my local neurologist to manage...yet remaining on the case.

What we still do not know: I will meet with endocrinology, gastroenterology, and urology over the next couple of days. They will run their own tests. While we suspect that there are issues to address, we are praying that it will not be anything that will delay our new Care Plan. I would not be able to come off of the steroids or start immune suppressant drugs if surgery or aggressive treatment will be required. He also admits that we do not know what will happen long term. We have been informed that most of the studies that have been done are after the patient has died. There are very few...possibly only one, other case tracked through the treatment. We do not know anything about what the future will hold.

We have an MRI at 6:50am followed by more blood work tomorrow. We should know more about our schedule after 9am. We will keep you posted! Love you all.

We are here!

Surprised by how much the travel took out of me, we are so happy to have made it to our hotel. The only side effects that I had from flying was weakness and balance problems. They lost one of our bags...but getting 3 out of 4 isn't that bad. Don't worry mom...I won't have to be naked! It was only my bag with foo-foo stuff. I can live for one day smelling like hotel soap with dry skin! Haha We had a great nights sleep and are about to meet Sharon Byrne for breakfast. Sharon is a contact that I made through one of my amazing couples at work. Sharon is a retired nurse and knows the Mayo Clinic well. She is going to give us some pointers and show us the ropes. We are so blessed by our families and friends. This is a picture of the Mayo Clinic which is literally outside the front door of the hotel. We will keep you posted. My phone charger is in the bag that has not arrived, so email or call on John's phone if you need us! Lots of love.

Security, Airports, and Airport Food...Now that's romance!

John and I spent yesterday, which was our 11th anniversary, running last minute errands and packing until 11:30 pm. We were up at 3am this morning to catch our flight. We checked bags at the curb and had wheelchair service straight through security and to our gate!

I have to admit that I have a little guilt. We saw John's uncle Jack and a bunch of friends from church at the curb. They were leaving for their Africa trip at the same time. John and I ate breakfast and watched for our friends to show up at their gate just across the isle...but they weren't coming! Their plane loaded and they still weren't there. I called Jack and he was cool as a cucumber. Apparently, their 17 bags slowed things down and there were a few hiccups...but they did make the flight. In fact, Teresa Moore just texted me that they are putting bags in lockers and considering heading into New York City. Does Jack know what he is doing? Joanie...your husband is a brave man. I asked him what gate he was flying out of. He asked Linda and she gave him the terminal number, then the flight number, then the day they return. Jack and I laughed!

At this time, John and I are at O'Hare airport for a 4 hour layover. We should arrive in Rochester,MN close to 4pm this afternoon. Okay kids...here is a picture of what the top of clouds look like from the plane. Hill Country friends...this is why we do not live in the city! ( houses.) Sorry OBama, you can keep Chicago! Oh, and John thinks the wheelchair bit is hilarious and had to post a picture!

What is Hashimoto's Encephalopathy?

Hashimoto's Encephalopathy is a neuroendocrine auto-immune disease. The bodies immune system produces antibodies that attack the neurons in the brain. There have only been about a dozen cases in the U.S. diagnosed since 1966, though quite possible many cases have gone undiagnosed. Some of the most common symptoms of Hashimoto's Encephalopathy include: disorientation, psychosis, coma, stoke episodes, tremors, concentration and memory problems, jerks in the muscles and lack of coordination, headaches, partial paralysis on the right side, and speech problems. Sometimes, patients are mistakenly diagnosed as having had a stroke, or having Alzeimer's.



Of the few patients with this disease, the presentation and origin of the disease varies. In Kimberly's case, HE is a rare progression of her Hashimoto's Thyroiditis that was diagnosed in March of 2008. Looking back, we now recognize that there were signs of neurological distress at that time, but coincidentally was treated by steroid treatment to reduce inflammation in the thyroid. Hashimoto's Thyroiditis was named after the Japanese physician Dr. Hakaru Hashimoto, who first described this condition in 1912. Hashimoto's Thyroiditis is the most common cause of hypothyroidism in the U.S., and is an autoimmune or chronic lymphocytic type of thyroiditis. Hashimoto's Thyroiditis is not uncommon. The thyroid gland typically becomes enlarge and the antibodies the body normally produces to protect the body and fight foreign substances such as bacteria, are found to 'attack' their own thyroid tissue. Kimberly's thyroid is filled with hundreds of non-threatening cysts.

June 30, Kimberly drove to a Neurologist's office to meet and discuss some symptoms that were troubling her. While sitting in the office, she began to shake uncontrollably from head to toe. They call these myoclonic jerks. This is similar to what patients of advanced Parkinson's experience. After a short visit with the doctor, Kimberly was admitted to the hospital where they confirmed the diagnosis of Hashimoto's Encephalopathy and began high doses of IV steroid.
After several days, Kimberly's symptoms were controlled and she was sent home on oral steroids. Unfortunately, the steroids have forced her to be insulin dependant and have reopened stomach ulcers. Another coarse of treatment will be required to put the disease into full remission and to keep her from relapsing. However, there is not another drug identified that will accomplish this goal.

Kimberly and her husband John will be flying to Rochester, MN to meet with doctor's at the Mayo Clinic on July 27. They are praying that the doctors and specialist will give the answers that they seek.