2012 Goal Reset – Keep my wife ALIVE!
2012 goal reset – keep my wife alive.
I have been part of team EN now for 4 years. The team has helped me lose 76 lbs and achieve life time goals of completing an Ironman and then qualifying for and finishing Kona. Through these seasons EN has become to me an extended family. My 2012 season goal was to make it back to Kona.
This Goal has been replaced with keeping my wife Sandra alive. Many of the team have meet her at the IM events I competed in. She is a nationally recognized wildlife photographer that was training last summer for her first ½ marathon. Then the wheels fell of the cart. The journal below is an update I have been sending her family.
I reach out to my extended EN family for the support. Please send positive, thoughts healing MOJO and prayers Sandra’s way . The challenge has step up another notch for her.
EN I am thankful for what EN style Ironman training has done to prepared me for the biggest challenge of my life. That training has given be a grounded understanding of how my body deals with extreme fatigue, where the breaking points are, when to back off and how much. Plus the ability to stay mentally focused on the primary objective when in that fatigued state. Spending months at mile 18 has been hell.
Thank you EN!!
Side note – I hope nothing I write below rubs any of our medical professionals the wrong way. The issues I ran into, my corporation has in spades. Sandra has been blessed to be at a world class teaching hospital with amazing resources and people. But people are human and as the complexity of the situation increases, often processes and communication start to break down.
Matt
The following is a rough journal I updated periodically for family:
1/25 update
Ever since we came back from IM AZ last November Sandra did not feel good. Over 2 months of testing with dozens of scans of most parts of the body to try to figure out what is wrong. Finally they focused on the liver and after the 4th scan of that did a biopsy. It took the pathologist a week to figure out the results. An extremely rare liver tumor ~ 240 cases found with it first being identified in 1984. The gastroenterology group had 90 years collective experience and they had never heard of it.
So from there we head to the liver specialist. Met with them last Wednesday. The good news, He had dealt with 4 cases of this stuff. The bad news – no drugs or chemo are known to work on it. His team of 8 experts then reviewed all the prior scans and tests and Friday we get the news that the tumor had cover the liver and a transplant is the only option.
Ok Sandra is good with this “I have a path forward and I know what I have to do”. Next step is 2 days of testing on Feb 7,8th to check all systems and the see if she is strong enough to survive the transplant operation. Once on the transplant list – will likely wait 3-12 months for an organ. This will be the hard part as quality of live has declined and will continue to do so.
It is amazing many symptoms a poor functioning liver can create. Extremely low energy levels, poor cognitive functions, balance , appetite, …..pain. This may be the cause of the seizures. She first had similar pain back in 2005 then could not figure out what the issues was back then. They saw some anomalies on a liver scan but thought nothing of it.
I was supposed to travel to India this week for work and had to pull the plug on that.
Mid week her stomach and legs started to swell up significantly – edema. The specialist gave her some pills to reduce the water in the body. Saturday AM I am packed and ready to fly on Sunday. She wanted me to go, so we had a local support network in place for Sandra. As Saturday progressed the pain increased significantly and she could not keep any food down. At 10 PM I made the hard decision to pull the plug on the trip. She was very unhappy that I was not making the trip. I researched the side effects of the water pills and yep on top of the list was nausea. So Sunday no water pills and she was able to eat. Over the last few days it was clear I made the right decisions to stay.
She is a strong person and as you know I am stubborn so we will get her though this!
Tuesday 3/26 she was admitted to the hospital to find a way to get water off of the body that had built up over the prior 2 1/2 months. She had gone from 112 to 154 with the gains being all water. She was barely able to walk and due to swelling in the leg joints could not reach her feet to put on socks, They found a new combination of diuretics that worked. Sandra was released late Friday. The new water meds are getting it done. On the positive side as of today Sandra is done from 154 lb to 140.
That was the easy part, The real fun was on Wednesday, the liver doc came in and said the heart is still a real issue and he was concerned that she would not make it through a liver transplant. He needed to understand how much the heart was impacted this water gain issue and how much was the liver. Also they saw a tell tale - the vanes were throbbing visibly on both sides of her neck. This I had seen get worse over the last 3 weeks.
So they did some more scans of the heart. Thursday the liver team came back in and said her tricuspid valve was leaking significantly and this had to be resolved for a transplant to likely be successful. I ask did he talk to the heart experts that 2 hrs ago said all was fine!!!!! He said yes and he disagrees with them. My response was how do we get all on the correct page???? He explains that the cardiologists are looking at this situation for a normal person , not with the understanding of the stresses that a liver transplant puts a body through. He said he would get the team together and get it sorted out. I ask is this something that can be fixed without major surgery he say no not in the time frame she would need. So at this moment we have a heart that may not make it through the stresses of a liver transplant and we can't fix the heart and recover in time to get a transplant. Wow!!!! I'm not sure Sandra understood the implications of this discussion.
We get to Friday. Sandra is feeling better, the water is starting to reduce and the kidneys are tolerating the process. The liver guy comes back in and says the heart wizards have done a more detailed review of the scans. They now see the pulmonary valve is leaking causing the left side of the heart to works to hard to get blood to the lungs. This has caused that side of the heart to expand and the tricuspid valve not seal any more. This can be made worse by the high pleasures that are I place due to all the water in the system. The pulmonary valve is the cadaver valve that was place into her 15 years ago as part of a process to repair a congenital defect with her aortic valve. This was done by one 3 people in the country who did this procedure. Yep in St Louis. Well now again we are blesses to be in St Louis.
The cardiologist comes back in and explains that because Sandra has that procedure to 15 years ago she has additional structure that was put in place when the valve was implanted. This extra structure opens the option for a new procedure to fix the valve. Children's hospital was the first in the country in 2010 to be approved by the FDA for this procedure. They procedure is a just bit more complicated than putting a stent an artery in a person. This procedure allows for a normally healthy person to go in for valve repair and be out the next Day!!!!!! The only incision is to stick a tube up an artery in the leg. See the video below. Amazing!!
http://www.youtube.com/watch?v=XrTAjjVl9zw
The expert that does these procedures came in and we had a 30 min discussion. He did agree with the path for Sandra and why, procedure and risks...... He knew his stuff. From what I can see he has dose ~30% of the procedures for the US. I left that discussion feeling much better.
Heart valve repair surgery is next Tuesday AM and she should be out Wednesday AM if all goes as planned.
Thank you all for the thoughts and prayers, its working!!!!
Week of 4/9
Thank you for continued thoughts and prayers. This week has not gone as planned!
Writing this is good therapy for me and it helps me see if I missed anything, or need to follow up on a part of the saga with the medical team that does not make sense.
On Monday we went to the hospital for prep for the heart valve surgery scheduled for Tuesday. They found an infection in her system that they needed to treat before the heart surgery. So they sent her home on strong antibiotics and rescheduled the surgery for Friday.
Tuesday Sandra continued to feel worse. Mid day Wednesday the 11th they admitted her to the hospital. She had not urinated anything significant in a couple of days and muscle twitches / spasms were increasing along with cognitive function heading south. My guess was a electrolyte imbalance. They quickly found that her potassium level was extremely high. Your blood potassium level is normally 3.6 to 5.2 millimoles per liter (mmol/L). Having a blood potassium level higher than 7.0 mmol/L can be dangerous and requires immediate treatment. She came in at 6.9. They started her on a set of meds to adjust it lower. Their main concern was this can cause a heart arrhythmia. By 9:00 PM it was down to 5. I left at 12:30 feeling we were out of the woods. I get home 30 min later and the hospital calls and says on the way to the bathroom with a nurse she got dizzy and passed out, breathing and the heart stopped. They quickly revived her ~ 2 min. She knew where she was and was fine. Wow deep breath time.
I get back to the hospital and they had mover her to an ICU room just to have the best monitoring and response capabilities. The meds had moved some of the potassium out of the blood stream and into the cells. This should minimize this heart risk but the potassium was still in the body. The only way it leaves the body was though the kidneys and out in urine. They decided to go with dialysis to quickly get the blood cleaned up, the potassium level corrected and other toxins out of the system. By 6:30 AM that process had been completed and I could see a notable improvement in her state.
Wednesday and Thursday have been spent working to figure out what has caused the kidneys to stop functioning. The most likely scenario at this time is the liver disease is the cause, this is not uncommon. The pressures in the veins are raised by this type of tumor. The kidneys see this as the body is dehydrated and out of water (even with 50lbs of extra water in her tissues), so the kidneys say to keep the body alive it should not eliminate any more water – and thus no toxins leave the body. In the short run dialysis is the workaround. In this scenario, if you drop in a new liver, the pressures in the veins go back to normal and the kidneys turn back on. The second scenario was the advance course of diuretics to get the water out of the body over stressed the Kidneys.
This set of events may turn out to be in Sandra’s favor. No its not sleep deprivation talking.
Livers are given to the “neediest / sickest “people first. The Model for End-Stage Liver Disease (MELD) system is used to prioritize patients waiting for a liver transplant. The range is from 6 (less ill) to 40 (gravely ill). The individual score determines how urgently a patient needs a liver transplant within the next three months. The number is calculated using the most recent laboratory tests. To get on the transplant list you need at least a 12. Sandra was a 14 when first put on the list back in February. One short coming with the MELD systems is some liver cancers don’t make produce the needed blood numbers to get a high meld score. Sandra’s is one of those. So the MELD system allows for exception points to be applied for. This was done and it mover her up to a 22. This is not high enough to get anywhere close to the top of the list. So now the system adds 10% every 3 months. So this translates to a 6-9 month wait for a liver. BUT this week’s events changed that significantly.
With the liver not working this significantly impacts one of the blood test elements in the MELD score. It was 27 on Wednesday. This gets her in striking distance. Now if one gets dialysis twice in one week you add 6 more points and now your are at 33. This would likely get her to the top of the list!
So the view from the Liver team is get her blood clean and stable over the next couple of days, let the heart recover from the stress early in the week. Get the heart valve fixed – target next Wednesday. Go though the minor recovery from that and then find a liver in the following few weeks (timing is my best guess – they won’t say). Put the liver in and let the kidneys reset and get on with life. This could be a whole lot better than 6-9-12 months of poor poor quality of life waiting for the MELD score to increases enough to get her a liver.
Update 4/30/12
This has been a long 2 weeks. We are making progress.
The week of the 15th still in the ICU, and Sandra’s mental alertness slowly declined. I was seeing some symptoms I had seen before – what is going on?? On Saturday I asked the nurse practitioner to have a test for her seizure medication levels pulled again. She said “we don’t worry about that stuff here”. I explained that they needed to and made the second request, she agreed to do the test. This darn test takes 3-5 days to get results!! On Sunday I again went through the meds they were giving her. I found they had dropped her birth control pills on admission. This seams insignificant right, wrong! I looked up the key seizure med and it said dropping birth control would raise the levels of the medication by 50%. I called her neurologist’s cell and he said yep that will screw her up. He gave me target blood levels and what the meds should be reduce to. I wrote this all down and his cell on office number and gave it to the attending team and told them to call him now. The attending physician came around to see what was up, and he said this typically is not an issue. I asked him what about Sandra’s case was typical an I wanted a neurologist team on the deck Monday am with a plan for new med levels and a testing protocol to keep the levels under control.
First thing Monday some a new Doc comes in and asked for the Neurologist number. I asked what happened to all the info I gave you yesterday??? An hour later a team of six neurologists showed up. We put the new plan in place and by Tuesday Sandra was back with us. Through the week they continued to do dialysis to clean the blood and also to pull water of off the body. The kidneys were still not working. The key milestone for the week was to get her strong enough to do the heart valve repair on Friday the 20th.
Also over the weekend I noticed her right arm start to swell up!!??? On Monday they found a blood clot in the right arm so they started her on a blood thinner. They thought the clot was caused by the Dialysis taps on that side of her neck causing a decrease of blood flow to that arm.
By Friday they had pulled ~ 20 lbs of water of her with the dialysis machine to help get her ready for the valve repair procedure. The 4.5 hr procedure went as planned. The surgeon showed video of the valve leaking before and not leaking after. Nice!!! He commented that the right side of the heard was “still very sick” and was concerned that the heart was not strong enough for the liver transplant. We again talked though the hope that with the one valve fixed and some water off the body to lower pressures on that side of the heart that is would resize itself and the leaking Tricuspid valve would work better.
The Washington University medical campus is a 6 city block set of 20+ high rise buildings making up the medical campus. The valve procedure was done at the Children’s Hospital 1 block from the hospital she was admitted into. Once the procedure was done and they felt she was stable, they rolled her back to the main hospital. The 2 surgeons, the anesthesiologist, and 3 nurses rolled her bed and all the monitoring gear down the halls and through the main lobby of Children’s and over to the main hospital. We got a lot of looks during the 10 min fast walk.
Friday evening Sandra had more color in her face and she said her breathing was easier. On Monday they did an echo scan of the heart to check the functions of the valves. The repaired one was good and the tricuspid valve flaps were now touching. This was a major improvement as they were nowhere close to touching prior to the surgery. The cardiologists were surprised and please at how quickly the heart was resizing itself.
A core challenge for me each day was dealing with the 5 teams of doctors that would come by and do their 3-5 min assessment. The teams were , medical, liver, kidney, cardio, and neurology. You never say the teams together. At times it appeared their focus was of trying to locally optimize their area of focus. My mission was sharing with them the changes in Sandra from the prior day, both good and bad. She often was not aware or did not want to tell them if she though they would see it as a negative. Feeding back to the teams what the others were saying helped drive some collaboration and follow up discussions.
I had started a marketing of Sandra campaign on week 2 of this adventure. I used an ipad with many of her world class wildlife pictures to show case see her as someone special and not just a set of lab report results. I was fighting for any extra mind share to be focused on her. I couched her on using her bright smile to answer their questions. In week 3 I brought in a large calendar of some of the best Alaska and Galapagos island work. This was working, they docs started to spend extras time, a new nurse would come in and say “ I had heard about you at lunch yesterday”.
For the rest of the week the game was rest , dialysis every other day and keep pulling fluid off the body. On Tuesday we moved from the ICU to a normal room. By Wednesday the kidneys started to show some signs of waking back up. They continued to improve as the week went along.
The impact of being so sick, the surgery, the dialysis and being in bed 20 days has really taken a toll on her physical strength. The Saturday after the surgery she was not even able to lift her head off the pillow let alone make any major body parts move. By Wednesday with help she was able to sit up and move to a chair and almost able to stand on her own. A Physical Therapist works with her every other day. The therapist said it would likely take 3-4 weeks at a rehabilitation hospital to get her back to self sufficient.
On Wednesday the Liver team came back in and said that she is on hold status for the liver transplant due to being so weak. They said take 4 weeks to recover and get stronger plus let the heart continue to improve. Then come back in for review to go back to active status. Sandra took this news in stride.
As the rest of the week played out the kidney continued to slowly improve. But on Thursday breathing was again labored. An X ray showed some fluid on one lung, so the used the dialysis machine to pull more fluid off. After the 3 hr process breathing was better. On Friday the renal team added a diuretic back in to see try more water off the system via the kidneys.
Pain in the abdominal area has been an issue over the weekend. The docs say this will be an ongoing problem until the liver gets replaced. Fun.
Eating continues to be a huge challenge. The liver and drugs have the taster all screwed up. Everything is too salty, or too sweet and too dry. The only way to get calories into her is with a liquid meal drink that she tolerates.
I went and did a recon on the 3 rehab facilities they have recommended for her to move to once she is discharged from here. One should work out well. Now just to get her strong enough to make the move. I hope by mid week we can get her out of the hospital.
Monday 4/30 a new week starts. The breathing again labored, fluid building up again. She weights 2 lbs more than Friday. The kidneys continue to improve but can’t yet get the water of the system. The renal team makes the smart decision to pull ~5LB of water off each day over the next 3 days using the dialysis machine. They hope this will get her ready to release to the rehab hospital.
Monday, 2.5 L fluid pulled, Tue and Wed 3 L each day pulled. She now has knee caps where there were basketballs a week before. The head of the liver team came in and said “she has been their star patient, with a great attitude, personality and smile and had done anything they had asked. The whole team is pulling for you to get strong enough to get a new liver”. The special person she is had shown through!
Thursday May 10th , 29 days in the hospital with 20 in ICU, Sandra is finally released to a rehabilitation hospital. These are a step down what the normal high capability hospital. Their focus is on rehabilitating the battered body. Common rule of thumb is for each day in a bed it takes 3 days to recover what strength was lost.
I looked at 6 facilities and settled on this one due to the quality of care (2 personal references), pleasing colors and layout, plus the food choices. The first days of rehab go well. On Friday she went outside and felt the sun on her face for the first time in an eternity for her. She was so happy to be outside again!
6/27 Sandra Update: Progress, Ups, Downs and then over the cliff.
The rehab hospital had its ups and downs. Ammonia levels wet high in the second week and sent her into a mental function ditch for 2 days. Water weight gain spiked early in the stay and it had to get back under control. Each day they schedule 3 hours of therapy. This was a mix of Physical therapy – focused on trunk and lower. Occupational therapy – hands arms – getting dressed, and Speech therapy. This was neck up with the brain being the key target.
Putting on socks and shoes was a real challenge. She could not bend over the huge abdomen so helper tools were used. If no one helped her it takes ~1 hr for her to do socks and shoes!
Sandra was a star student for the therapists. They loved her smile and willingness to work attitude. She made steady progress with the help of excellent therapists. By the second week she was walking with a walker and started to try stairs. Getting in and out of bed was still a challenge that required assistance. The speech therapist would do metal games / exercises to help strengthen the brain function. It is a sobering moment to sit and watch your loved one struggle with tasks a 5 year old could do.
Eating continued to be a challenge with everything too dry, too salty or too sweet. We managed to get the calories in with most of it still being liquid.
By the end of week 3 she was able to walk with a walker 150 ft and able to climb a flight of stair. She still struggled getting into bed. As the water slowly built up in the legs this became a bigger challenge.
She was release to go home on Friday June 1st. She was pleased. That afternoon she said she felt like someone had drugged her. By 5AM after a long night, the mental process were in the ditch again. I call rehab and asked for the doc to call when he came in. At noon still no call. So I followed up again and finally got a call at 2PM. I explained to the doc on call that she was displaying the symptoms of high ammonia again and that I needed a prescription for Lactulose. This is a sugar that pulls ammonia out of the body and makes you crap it out. They had used this many times before both in the hospital and at rehab hospital (In countries other than the US this is available over the counter).
The doc said she they had discharged her, I should call primary care or the liver team. I explained it was the weekend and nothing would happen from that end on the week end. Next she said take her to the ER. I said no way would I do that and have people not familiar with this complex case screw things up even more! She said she could not write the prescription without seeing her and needed tests. I asked for a home care nurse to come draw blood now and get it tested. She finally agreed. By 10 that night the tests came back – high ammonia levels. We got the prescription and she was much better the following afternoon.
Being home presented new challenges but we worked though them. During the next 2.5 weeks she got a bit stronger. Then the water started to accumulate at a faster pace swelling the legs and making it more difficult to walk and go up stairs.
June 6th we meet with the liver team to see if she was strong enough to get relisted as active on the transplant list. They said yes BUT. They still needed the heart team to say she was good and talk to the surgeons’ and the anesthesia team. So June 12th back in for scans of the chest and heart. We meet with the Cardiologist on June 14th. He said all was good. So the last steps in review to get active again was meet with the surgeons and anesthesia team, this was scheduled for the afternoon of June 20th.
The week end present increased challenges, my sense was potassium going high again, plus water gain was accelerating. Monday Primary care agreed to get blood drawn and we were set for Wed 14th AM review with her before the afternoon meetings with the surgeons and anesthesia team. So we meet with Primary care and go over the blood test results. Yes Potassium is high again, not to critical levels but outside the normal range. Blood pressure is low 90/50. She ends up saying that the tools she has available in her tool chest were not up to the task of fixing Sandra’s water issue and keeping blood pressure at an acceptable level. She stepped out and called the liver team. 15 min later were are told to go to the main hospital and be admitted. I think great, get the water off in couple of days home and wait for news on reactivation. Wrong!!
We get checked in Wednesday afternoon. We were back into the discussion is the heart the problem causing the water to build up. My comment to them was why do we really care. Keep the water of to keep her strong enough to get a liver and see if that doesn’t fix it. If it doesn’t the fix the heart. Nothing happens until Friday. Needless to say my patience was in short supply by now. They did another heart scan and for the 4th time the heart experts said the heart is good and it is not the issue with the water!!! Ok let’s do something to improve her medical state please! They then tapped 3 liters of fluid (6.6 lb) off the abdomen. This helped with some of the pain in the region. We also start a new diuretic protocol. By Sunday she is down 14 lbs from the peak. Ok things seemed back on track. Monday June 25th she meet with the surgeons and the anesthesia team. Both said she was good to go back to active on the transplant list. By Monday evening I felt something was wrong. Her motor skills and mental ability were heading south again. Tuesday AM was worse. She is becoming less and less responsive, eating is only liquid and I have to force it.
We started a new fire drill as to what was going on. White blood cell count had skyrocketed to a new record high. They search for infections. Tuesday evening at 7PM I get the call that she is back active on the transplant list with a MELD score of 25. A solid score but not one that will get us a liver in the next couple of weeks. In 3 months her score will move to a 28 and this should get her a liver in relatively quick time. My excitement was dampened under a deepening cloud of concern.
By Wednesday AM Sandra is non communicative and semi aware between length periods of sleep. The medical team makes their morning rounds and have found no infections at this time, so they can’t explain the elevated white blood cell count. The liver team makes their rounds and says he believes the issue is Hepatic Encephalopathy. This is a worsening of brain function that occurs when the liver is no longer able to remove toxic substances in the blood. Symptoms many begin slowly and gradually worsen, or they may begin suddenly and be severe from the start. It looks like we just had a step function change!
The head liver doc proceeds to say he does not expect that she will be able to leave the hospital without getting a new liver. Plus we are in a race to get one in the weeks that he feels she may have left. Wow how does one go from walking into a hospital and 1 week later being marginally functional and told you may have weeks to live!!
This is more and more becoming a “In God’s hands” situation.
Thank you in advance for the continued prayers and support.
Matt
7/1 Update - Climbing Back up the Cliff
7/2 AM Update
We made it through the night with no additional pain meds, Yea!!!! The Lactulose did is fun work 4 times. Each time she got out of the bed to the bed side commode. Keep using those legs. The early Doc cam in at 6:30 and was very prleased with what she saw. Sandra asked her 2 questions – when do I get the feeding tube out and how do I get to rehab. The doc was impressed.
The answers – will see what the liver team says.
Keep the thoughts, MOJO and prayers coming it is working!!!!
Matt
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Comments
Matt - my prayers are with Sandra and you. So sorry that your family is going thru this. God bless all of you.
Matt, my heart aches for you and Sandra. There are no words to console or encourage...only prayer. Thank you for sharing your gut renching real life story and thank God that Sandra has a husband like you.
Praying for you both.....
Matt, what an unbelievable turn of events for Sandra and you to endure. I can only imagine the stress you both are going through. We will definitely keep you and Sandra in our prayers, and send some serious EN MOJO your way. God bless you both.
Ed Shimon
Oh, dear Matt. You and your wife are in my prayers and giant thoughts for a new liver and very good health to be on their way with all due speed. And strength for you!
I'll hold you, Sandra, and your family in my thoughts and prayers.
with all my love,
Bill
I pray for healing but also comfort and peace for Sandra, yourself and your family. May God comfort you and feel His love during this difficult time.
Oh, Matt ... hopes and prayers, hopes and prayers...
The best of thoughts to you both.
Matt,
You and yoSandra are in my thoughts and prayers.
Gordon
Matt our thoughts and prayers are with you Pray for a speedy liver transplant.
Our best to you and Sandra.
Call if you want to talk. Like we've talked about before, you are not alone in this.
Your friend,
Joe
602-312-7373
My thoughts are with you and your family.
Cary
Matt, thinking of you and praying for strength and healing for Sandra.