Memorial Day

Liz and Becka arrived at the beach late Saturday night with J and Nillie (Durkee dogs). Mike sure was glad to be back together with Becka! They had two really good days on the beach but Mike got a sunburn on his face and the top of his head. Ouch! Becka started a bootcamp routine and both Mike and I have been trying to keep up! Actually, since the drs told Mike exercise can reduce the frequency of headaches he has been very diligent at working out. We are all proud of him! He is very determined. We are expecting to hear from the headache dr. from the Mayo this week to get the plan of action he recommends. There has been talk about doing botox injections in his skull which has reportedly been quite successful for headaches. Will let you all know if we hear anything new from drs.

Mayo: Headed Home

Drs. came in to see Mike this morning. They are certain, based on the EEG results, Mike does not have epilepsy. We actually already knew that but there was some question in the Drs. mind whether the last EEG was read accurately, which is why they wanted to do another one. Because it is not epilepsy and they are the epilepsy team, they now refer back to the original neurologist who saw him for what to do next. He is out of town this week. (of course he is!) When he gets back, he will have a phone consult with Mike and discuss what he recommends.

Headed home this afternoon and off to the Cape tonight!

Mayo: Day 7

We arrived at the hospital at 8 am and by 9 Mike was all hooked up. He took a nap and accommodated the EEG video people with 2 seizures! They always happen while he is sleeping. Pretty impressed with how quickly this hospital team responded. He is on the epilepsy floor and you can tell the staff knows what they are doing and what to look for. The neurologist came in shortly after and talked to Mike and asked some questions. He then asked Mike to put his chin to his chest and sure enough he passed out. We were glad the doc was there to see it first hand, he was glad it was captured on video and the EEG. Later the head neurologist came in and told us they would gather info throughout the night (we assured him Mike would have another one while he slept tonight)
and would see us in the morning during rounds. So we don't know anything yet but are hoping they at least have a plan to send him home with. We leave the hospital at noon and then head to the airport. It may be a couple of days before we are able to post an update. We are traveling all day Friday and Liz will be traveling all day Saturday. I will try to do an update on Friday so Liz can post it before she leaves. If there is no post until Sunday, don't be worried, it doesn't mean bad news, it just means one of us couldn't get to it sooner.

Mayo: Day 6

Mike saw the neurologist who specializes in epilepsy this afternoon. He didn't have much to offer but wants Mike to have another monitored EEG. So tomorrow he will be admitted to the hospital, get all hooked up...one more time. This is the third time... and they will video his episodes and hopefully figure something out. They will also try to induce an episode of passing out when he puts his chin to his chest. They want to see if there is a change in brain waves on the EEG when he loses consciousness. It will be a long day of sitting around but hopefully it will be well worth it. The plan so far is still to fly home on Friday.

Moving on to day 7!

Mayo: Day 5

Late last night we had to decide whether or not to extend our stay just in case the epilepsy doctor, who we see tomorrow, will want to hospitalize Mike and do an overnight EEG. We decided to stay until Friday to get all the app'ts in so we won't have to come back. We saw the endocrinologist again today. She confirmed Mike has a low cortisol level which means he has adrenal gland insufficiency but the cause is unknown but treatable. Apparently, that is not uncommon. He will stay on the hormone replacement and do follow up app'ts at home with an endocrinologist. So we are done with endocrine visits while we are here and now we move on to neuro. There is some talk of treating the headaches with botox of all things! Should know more tomorrow.

Mayo: Day 4

Loooooong day at the Mayo. Waited all day, along with a lot of other people, for an app't to open up with a neurologist. Didn't get one. We do it all over again tomorrow. We have an app't on Wednesday afternoon but hoping to get in sooner. We were told they may want to hospitalize him to do an overnight EEG and video tape him sleeping. We are supposed to fly out Wednesday night. Don't want to extend our stay, but if that is what we need to do so we won't have to return at a later date, we will. Spent the day reading, listened to 4 sessions of Beth Moore on line and talked to people who also were waiting and bored. Mike was tired most of the day. Only slept about 3 hours last night but held up pretty well...tomorrow we'll play cards while we wait and I plan on whipping him at aggravation rummy! Hope there is more to report tomorrow as we move on to day 5!

Pics of Mayo

Mayo: Day 3

Got back to our hotel a little earlier today. That was nice! We arrived again at the clinic around 7:15 this morning. Have I mentioned how I am not a fan of early? Mike went right to his app't at the lab. Then we got on the wait list for the epilepsy dr. but did not get in. The best we got was an app't for Wednesday. We are scheduled to fly home that night. There has been some talk about the possibility of hospitalizing him to do another overnight video EEG. That has not been scheduled at this point. We will return early again on Monday to try to get in to see the epilepsy doc by going on the wait list again. We would like to get in to see him ASAP so if they do want to hospitalize him they can do that while we are here and so we won't have to extend our stay. The only things scheduled for Monday so far are more labs. Today we saw the endocrinologist and went over lab results. We know that his endocrine problems do not come from his pituitary gland so now we look to see if they are a result of the adrenal glands. He had another neck extension x ray done to determine if his dens bone (in the neck area) is unstable and causing him to pass out. If you remember, he had passed out on 3 other occasions when they tried to do this...well not wanting to disappoint...he passed out again during the procedure...3 times. He wasn't out for long but still the results are the same when he puts his neck to his chest. According to the radiologists his dens bone is stable. Hoping the neurologist has some answers. The last test that was done today was an EEG, but this one was much different than the ones done in the past. While he was hooked up they had him do various activities, like reading and looking at illustrations. Then they flashed strobe lights all around him but left out the disco music! He did sleep about 20 minutes during the test (before the lights) but he did not have a seizure. Not sure what we will do over the weekend. I know sleeping in is on the schedule! Other than that, we might check out the Mall of America.

More on Monday!

Mayo: Day 2

We arrived at the Mayo this morning at 7:15 (did I mention I hate early?)

Mike was pretty tired as he did not sleep much, too many seizures... kept waking him up.

He put his name on the wait list and after about 10 minutes he was given an app't for 1:45! We were very thankful! We had 6 hours to wait so Mike decided to go to the patient resting room and sleep awhile. This is a really great idea they have...there is a room without windows so it is nice and dark. The walls are lined with recliners, shelves are lined with blankets and anyone who needs to rest has a place to go. Many of the patients here have more than one app't on the day they are here. For instance Mike has 3 app'ts set for tomorrow so if he wanted to rest in between he can. Many people we rode in with on the shuttle rode back with us at the end of the day. They looked as tired as we felt. It's been a long day for all of us. We're all starting to look familiar to each other at this point. One elderly man, who took the shuttle with us yesterday, was on the return trip with us today, only this time his wife wasn't with him. She may have been admitted to one of the hospitals. He looked sad and lonely today. The neurologist scheduled to see Mike was an hour behind schedule but that was fine, he spent an hour and a half with us. The first hour was to take medical history and to get very detailed information about what has been going on for the last almost 8 months. He ordered a few more tests, some have already been done and he suggested he see the neurologist whose specialty is epilepsy. When we asked about help for the headaches he indicated that there were meds that could be tired but because we are just at the diagnosing stage he didn't want to suggest anything yet. When I asked if there would be a plan before he returns home, he said there would be. We couldn't get an app't with the epilepsy neurologist until June 6th but we were told to put his name on the wait list and try to get in while we are still in town. We will try to do this in between app'ts tomorrow but may actually have a better chance of getting in on Tues since he doesn't have anything scheduled on that day. We leave Wednesday night so Wednesday could be a possibility as well. So today was a long day and we still don't have an answer but the doctors want to do their tests and then put together a plan.

On to day 3...

Letter From Mike

Hello from the Mayo Clinic. I just wanted to share some thoughts that I have had lately with all who read this. I have struggled with all of this mightily. Its been hard to have things that I took for granted taken away from me. I haven't driven since October, haven't worked, haven't been a provider for my family, I haven't even been able to go to the bathroom without somebody calling out and asking if I am ok. As I got really down about all of this I realized there is something that illness cant take from me. Illness cant have my relationship with Jesus, it cant take my ability to pray and communicate with Him, and most of all it cant take away how much my Heavenly Father loves me. I hope that everybody who reads this has a chance to experience this love that I talk about. I was walking around the halls of the Mayo today and I saw some pretty sick people and the Lord reminded me that He has purpose in each and everyone of these people. God has purpose for me as well. SO I ask that tonight you pray what Gods purpose for you is. I then beg you to follow that purpose!! Thank you so much for praying for my family I couldn’t have made it without them!

Love you all!

Mike Durkee

Mayo: Day 1

It's been a very long day. We left the hotel about 6:45am and arrived back around 6:00pm.

It's hard to describe the the magnitude of the Mayo Clinic and the two hospitals associated with it. One of the hospitals seems like a city in itself and the Mayo Clinic is not for those, like myself, who are directionally challenged! The place is huge but well run. It looks more like a mall and hotel lobby then it does a medical building, and that is just in the area we were in.

Mike's app't with the endocrinologist went well. We both liked her a lot. She ordered a ton of blood work and follow up appt's for Friday and Monday. She will be checking all endocrine levels and compare them on the follow up app'ts. This will give her some idea of how much everything fluctuates and hopefully give her time to put together a treatment plan. She also wants him to be seen by a neurologist who specializes in headaches and one that specializes in seizures. There were no openings today but they have a policy for patients which is like flying stand by on an airplane. We went to the neurology department and put Mike's name on a list. The thought is that if there is a cancellation or if someone doesn't show up for their app't then those on the list can take that app't. You can put your name on the list between 7-11 and 12-4. Mike had his name on the list at about 12:30...and so the wait began...and we waited and we waited...nothing opened up today. We will try again tomorrow. We will take the same shuttle in the morning and arrive just before 7:30 and wait and wait some more if need be. Mike will contact the endocrinologist in the morning to see if she is able to expedite the app't with a neurologist.

I was so taken with the thought of how many people are sick...some very sick. We saw much diversity among patients, some old, some young, people from different countries. I watched so many elderly come to the clinic with as much hope as we did. Some were alone and sick, that was hard to watch. Some had such a hard time walking you wondered if they would make it to their appointment on time. The was one man who got on the shuttle with us this morning who suffered with an obvious movement disorder. He struggled just to take one step but the look of determination on his face and the constant smile was inspiring. I wondered how his appointment went today. Many of the older patients were so cute holding hands and clinging to each other. Some were women who were sick and accompanied by their husbands who seemed to be carrying the weight of the world on their shoulders. Some were men being supported by their wives who carried all the medical records and seemed to be the one trying to figure out which direction to go to get to their app't.

Some were a long way from home and for some this wasn't their first trip to the Mayo. You could tell from the look on some faces that today was a hard day, maybe they received bad news. And I wondered what it would be like to be them today...realizing some day that very well could be Dick and me. What would it be like? I am sure we would be holding hands and I know if either of us were seriously sick we would be there for each other but if finding our way around was up to me ...we'd be in big trouble! But what if one us has to go through a medical crisis without the other? Then I was reminded of the encouragement I slipped under Mike's door this morning from DT 31:8...The Lord Himself goes before me and will be with me. He will never leave me nor forsake me. Do not be afraid, do not be discouraged! No matter what season of life we are in, no matter what the condition of our health is, we are never alone if we know Him!

More on day two...with less rambling!

Tuesday Night Update from Minnesota

We made it to MN safe and sound. After taking the bus to the airport, then the flight to MN, then the shuttle to our hotel, we traveled about 6 1/2 hours... not too bad. Even though Mike doesn't like to fly, he did great! Not sure how his head is, he didn't say and I didn't ask, he must be tired of me asking. He seemed pretty tired when we got off the plane and I'm relatively sure he had a good headache going on. We got to our hotel, settled into our rooms, got dinner, relaxed for a bit (I watched American Idol) and we went to the fitness room and worked out. Mike has done the treadmill now for 8 straight days! He is trying really hard and I am so proud of him! Docs say exercise can reduce the frequency of headaches. MN is 1 hour behind NH and OH. Tomorrow will be a really early morning for us. Have to be ready to take the shuttle at 6:30 am. UGH! Other than his early morning app't we have no idea what tomorrow will look like. Don't know if they will do everything as an out patient or if they will admit him. Mike is really hoping that after looking over everything and hearing his story they will put their heads together and work as a team to come up with a good treatment plan. That's our prayer...plain and simple...

Monday Night Update

The last couple of nights have been rough ones for Mike. Headaches have been bad and seizures have been many. We leave in the morning for the Mayo Clinic. Should arrive about 3:30 in the afternoon. Mike is a little concerned about flying because the last time he flew his headaches got really bad. His app't at the Mayo is at 8:30 Wednesday morning. Don't know yet if they will hospitalize him or do everything as an outpatient. Will do an update after we arrive and have more info. Thanks for praying!

Friday Night Update

Mike has had a couple of really good days this week! He actually had one night without seizures. The first in about 6 weeks. He still has bad headaches but had a couple of days that they weren't as intense. Yesterday, we had a great day visiting a pastor friend in RI and his family. Mike and he had some great conversation and he was so encouraged from their time together. He thoroughly enjoyed the day and held up pretty well. As the day progressed his headache got worse and he was pretty tired but I think it was a good kind of tired! By the time we got home his head was pounding but he was so glad to have made the trip. He had a number of seizures while sleeping last night and bit his lip pretty good during some of them. They look pretty sore and red today. Actually...we told him he looks like he had a really bad lip job done and looks like he is wearing bright red lipstick! Don't think he appreciates our humor yet! It has been much more relaxing not worrying about him passing out and hitting his head all the time. Now that the syncope episodes (passing out) have turned into seizures at night, he has more independence and is getting hurt less often. This has freed him up considerably. No more wheelchair, can go into stores or restaurants etc without an escort and has even started walking a couple of miles a day! We are so proud of him!

Even though he is tired and his head hurts, he is pushing past it and trying to get in shape. He would like to do a 5k with Becka in July if the doctors give him the ok. Our final stop on this medical journey will be the Mayo Clinic in MN. We leave on Tuesday and will be home Wednesday of the next week. His app't will be with an endocrinologist and we are hoping that along with neurology they will be able to put together a plan that will reduce the intensity of the headaches and control the seizures. We would also like to know why the entire left side of his body has neurological deficits. So far, no one has been able to answer that or why the protein level in his spinal fluid is high or why the last time they tried to do a spinal tap they could not extract any fluid. You can see we have lots of questions and we are praying Mayo has lots of answers! We are overcome with appreciation for how the Lord, through so many of you, has taken care of so many of the Durkees' needs. A quick example (one of many): the flights to the Mayo and the 2 hotel rooms while we are there, along with breakfast, have all been taken care of! This is a huge burden lifted from Mike and Becka! Through so many of you and the love and tangible support you have offered, all of the medical bills that have come in so far have been brought up to date and are paid for! You can just imagine what a relief it is for them to be able to concentrate on Mike's health and not have the added stress of all the medical bills. None of us will ever be able to put into words what all of you mean to us or how we have so appreciated you journeying along with us! It has been a long and hard road and we still aren't at the end of it, but through it all we are learning the significance of His grace being sufficient! He holds us up and reminds us of who He is....

Mayo Clinic Bound....

Mike's headaches and seizures are still the same. We realize it may take time for the meds to work and we are hoping that in the next few days we will see some relief and improvement. We have been in prayer and discussion as to whether or not he should keep the appointment he has had set up a the Mayo Clinic. That app't is with an endocrinology team. When we asked the neurologists from MGH if his endocrine issues could be the cause of all his neurological issues...they said they weren't sure. That is why they want him to see an endocrinologist and get a full work up. He has seen 2 endocrinologists in Ohio but they also were unsure about how the neurological issues were related to the endocrine. Rather than wait for the app't / referral from Boston, which could take a few weeks, he has decided to keep the Mayo app't. He is tired of all the back and forth between docs who don't talk to each other, the back and forth app't between neurology and endocrine, and the different opinions. At the mayo he would have a complete endocrine evaluation, which he hasn't had yet and if the endocrinologist wants to pull in neurology they would work together to evaluate, diagnose and make recommendations. The neurologist in Boston referred to the Mayo twice (he didn't know Mike already had an app't) and how well they do the team approach. He said he is sometimes frustrated by the way Boston does the team approach. Kathy and Mike leave for MN on the 18th and his app't is on the 19th. The Mayo told him to plan on being there for a week. They will fly (the train is too expensive and takes too long) and are praying his headaches don't get worse like they did the last time he flew.

Friday Night: Discharged from Hospital

We knew from past experience that because the weekend is here there would be the possibility Mike would be discharged. We were correct. Here's what we know: Mike has a headache disorder which very well may be causing the seizures. We know the seizures are not epileptic so we know he doesn't have epilepsy. They confirmed he has a pituitary tumor that isn't large enough to warrant surgery but is causing his endocrine system to be all off. Here's the game plan: Get the headaches under control which in turn may help the seizures. Those are the two most debilitating symptoms and if they can control them he will feel a whole lot better and feel like he has somewhat received his life back.They are starting him on prednisone for now and may do some other medicine trials down the road. They are trying to get him in to see an neuro endocrinologist soon to get his endocrine system up and running properly. He will follow up with a neurologist. He is hoping to get back some kind of normalcy in his daily life. Will keep you updated soon to let you know how the headache meds are working!

Thursday Night Update

Mike really likes his neurologist. He came in today and said EEG showed his seizures are not epileptic seizures (we knew that) and that they are caused by something else. He wants to investigate different headache disorders. Since all his episodes of either passing out or seizures are always related to intense headaches he thinks it should be looked at and he wants to run more tests. Not sure what those tests would be. He said he has patients who have debilitating headaches that cause seizures and with the right medication they feel like a new person. One of the things that was mentioned at one time was the possibility of him having something called Melas which is a terrible and fatal disorder. We are very relieved he doesn't have it! His doc told him his brain looks too good for that! Phew! That was a scary one!

This doc seems really committed to figuring it all out and we are so thankful for his attitude. Hoping they won't send him home unless they can help. He asked Mike how he was doing with the stress of all this, Mike told him he believes in the power of prayer and that he was being prayed for by many, many people. He also told him that his friends who were so diligently praying for him were also praying for his doctors. So keep praying for the medical team and especially for Dr. H!

Thursday Morning Update

Mike finally got settled in his room about 6:00 last night. He spent over 24 hours in the ER! He is hooked up to an EEG once again (this is the third time) with a video camera (this is the second time) to see what his seizures look like.

(sleeping in ER with EEG hooked up)










We don't expect it to show anything, because the others haven't. We were told 20%-30% don't show up on EEG and those in the temporal lobe don't show because it is too deep in the brain. He is still having seizures every night, so we are sure they will be able to capture an episode on film. One of the head neurologists (no pun intended!) asked Mike how aggressive he wanted him to be in figuring out what is wrong. Mike told him to do what ever it takes. He wants to work and drive again and doesn't want Becka's day at home to be an extension of her day at work. He has been quite concerned for her and the heavy load she is carrying. Before he left Ohio to come to NH he talked to his neighbors (they have a great neighborhood) and asked them to watch out for her. They have done a great job! When her back was so bad this winter they actually were competing over who was going to shovel her driveway first! They have a very large yard which has to be mowed with a tractor. Two of their very good friends are faithfully taking care of that for them. The Durkee's are so thankful for you!

We don't know yet what other tests will be done but someone mentioned the possibility of doing a PET scan. Will do another update later today when I (Kathy) get to Boston and get more information.

Wednesday Update

It was about 1:00 am when we found out they were going to admit Mike. Thank you, God! They didn't have a bed for him so he spent the night in the ER. As of 7:30 this morning they still did not have a bed. They were extremely busy last night, but one of the nurses told me it is the same every night. While we were waiting to see a doc, and Mike was in a bed in the hallway, I counted 14 other beds with patients in them lined up along the hall waiting to get into the ER to see a doc. There were still 3 other rooms full of people waiting. And to think some people get mad if they have to wait 15 minutes to see their veterinarian! Geesh! Just a little perspective folks!

If you remember, Mike was admitted to Mass. Gen back in Dec. and it was not a very good experience. At that time he wasn't having seizures but was passing out, falling and hitting his head several times a week. When they discharged him they told him they didn't know what was wrong but go home, wear a helmet and stay in bed as much as possible...33 years old and they wanted him to give up! Good thing he has some fight in him...and if he didn't...Becka would smack him til he did! Anyway, back then he was not on the neurology floor so this time he requested that they not put him on any other floor. Somewhere at around 11:30 or so last night they did an MRI with and without contrast. Then the radiologist requested the neurologist come down to radiology. After they spoke awhile they did more films. Mike thinks they were looking specifically at the temporal lobe of the brain. We don't know why and we don't know if they saw something. As of 1:00 today we still do not have results... so we wait....will keep you updated as we find out more.

It has been enormously encouraging to be supported by all of you who care so much and are so diligent at reading this blog, keeping up with us daily. You've sent many well wishes and prayers on our behalf. We love you all for it and will never be able to thank you enough!

Tuesday: At Mass General

It is Tuesday night and we have been sitting in the ER at Mass. Gen for 6 1/2 hours. They finally got him a bed in the ER and one of the docs came in about 10 minutes ago. They are going to go over his blood work and send in a neurologist for a consult. Still don't know if they will admit him or just increase his meds. After the last increase he started a rash which is one of the side effects of the meds. He had 2 seizures while in the waiting room. His neurologist in Ohio told him he needed to have another video EEG. We are hoping they will admit him and do one. They are really busy tonight, apparently there were a couple of shootings, welcome to the city! Just hope that doesn't mean there are no beds for him. He has a massive headache and has been waiting about 2 hours for meds to relieve it. Will post more when we know more!

Monday Afternoon Update

So sorry for the delay in this update, haven't had internet for the last couple of days. Mike has been at the beach with us since Saturday; we will be returning to Nashua later today. His nights here have been really rough. Saturday night he had 6 seizures and 5 last night. Yesterday afternoon he had 4. He hasn't had one during the day for awhile. He called the doctor and he increased his seizure meds slightly. He has another call into the neurologist. He still isn't at a therapeutic level of seizure meds so we are hoping to do another increase soon. For the most part he just doesn't feel well during the day and has too many seizures at night to get a restful nights sleep. He has been sleeping mostly during the day which makes sleeping at night harder. May 19th, which is when the Mayo Clinic app't is, seems very far off. May call to see if they can see him sooner.