Saturday, March 22, 2008

Home

Arrived DIA about 11:45pm lastnight. Flight was delayed because the flight crew for our plane was delayed coming in from Detroit. Long day.

Ended up meeting with Dr. Torres 1:15pm or it was 2:30pm before he got in the room, so technically 2:30pm. He recommended that I see a local ENT about my nasal issues. He was going to have a copy of the most recent MRI forwarded for me to give to the local ENT. He did note that the radiolgist commented that the MRI of the brain, sinus area did not look like anything had changed. He called Dr. Luthra while I was in the room, and Dr. Luthra would like to see me back in 3-4 months, as well as doubling up on the tomoxiphan. I was told that the side effects should not be double. So double up on the drugs and lose some LB's!!!

So that's where we are now.

I want to thank everyone for praying for me, and Heather & I. All the prayers and kind words have been overwhelming. Do me a favor send some of my prayers toward Andrew Demey. Some of you might not know him but that's ok; you don't have to know someone to pray for them. I will tell you however, he and his family are simply the best. We want to get this great kid out of the hospital and moving forward to a complete recovery. (Note his condition in previous posting.) So if you would, please pray for him.

Happy Easter!

Friday, March 21, 2008

Snow

It's snowing in Rochester today! There was talk in the tunnels of 6-8" overnight and today. Right now it seems to have stopped and I don't think there is more then 4". Hard to tell, I have not been outside but once in 2 days and that was to walk 1/2 a block. Yes, I was lost underground.

This morning brought an early morning MRI of the brain and sinus area. I explained again to the nurses that I can't have gadolinium as a contrast because of the kidneys. They went ahead and did an IV waiting on the radiologist to arrive to see what to do. With the IV ready they whisked me away to a changing room. There are so many advances in the medical world these days one of which I found in the changing room of all places. They have these cool new gowns probably developed for dudes who are not used to tying behind their back. The gown has a double sleeve on one side so you can put the front on and wrap the extra sleeve behind across your back and onto the opposite arm. No tying! Ok maybe this has been around for a while. My first time using them and needless to say I was really happy to not have my rear hanging out for the world to see.

MRI was interesting. Was the first head MRI I've had since the last head MRI where I freaked out and had to squeeze the button. Started to panic a bit again but just worked on my breathing and counting the minutes of each scan so I knew how much longer I had. Being in isn't so bad but when you throw in the banging of the MRI it can drive one crazy, as I explained to Heather. She replied, honey you could get a job as a MRI sound effects person. She is so wise:-) Love you honey! :-) Anyway, pretty soon the nurse says only three more scans to do. Time for the game face, you can do this Doug, offer it up, offer it up. 2 min, one down, 7 min, two down, 4 min 3 down, "ok we have 1 more 5 min one" I replied, "THAT WAS 3!" Needless to say I didn't get out of the 4th (extra) one! So they pulled me out waiting on what the radiologist said about the contrast. Praise God she said they didn't want to give me the contrast and risk problems. So I was done!

Next appointment was 10am ENT doctor. I showed up to find out that it was 10am Monday. Ouch. I had told Dr. Torres I didn't intend on staying over Easter weekend. Apparently the message didn't get passed on to the scheduling nurse. So they are still working on ironing that out. If I have to I guess I'll just leave without seeing an ENT here.

Gotta pack and get ready for hopefully final appointment with Dr. Torres.

Thursday, March 20, 2008

Results Are In

Met with the doctors this afternoon. Basically Dr. Torres said that all my blood work came back normal for me. The radiologist read the CT scan and commented that it was hard to tell if there was a change because this CT I had with contrast, where the last one I did not. So they are hard to compare, however he did say that it appeared that the right kidney might have some decrease in scar tissue. Dr. Luthera felt the same way. Between the two doctors they feel comfortable allowing me to stay on Tomoxiphan for 3-6 months. At that point they are asking Heather and I to make a commitment to going on Cytoxan.

We asked Dr. Luthera about the Bone Marrow transplant idea and he said that the problem was what drug to use to totally kill off the bad cells? It would be a big risk with unsure results.

As Dr. Luthra explained there is so little known about ECD, including treatment, how it progresses etc. He felt we could track the kidneys and other bodily organs with ease because they are easy to CT or MRI. His concern was the long bones of the legs and other areas such as my left wrist and my elbows. Basically the histiocytes cells that are out of control in my body set up shop inside the bones and basically replace the marrow tissue with scar tissue. This means the biggest problem with the condition is killing off my cells. Bones produce cells, red blood cells (o2 carrying cells), white blood cells etc. So if the ECD was to take over the bones I could run the risk of sickness, lack of O2 cells, and such, which is why he is concerned about the bones and doesn't want us to wait too long to go on Cytoxan, as he knows this will help with the ECD in the bones. It's not that there is a major problem there right now, but there is no accurate way to track changes in the bones, so we are gambling in a sense that the condition will not take over the bone marrow.

I explained that we are in a difficult position weighing options. On one hand we want Doug to stay healthy and on the other hand we would like to have a baby. If I go on cytoxan, it will cause sterility and having a baby will not be an option. Again, he did feel comfortable giving us another 3-6 months to try, but he would like us to commit to going on cytoxan, and not wait a year from now.

Tomorrow I am having a MRI of the brain and face. Dr. Torres recommended doing so since I have been having problems breathing out my nose the past 4 weeks. I will meet with him later in the afternoon to review those and return to Colorado late Friday night.

Today we did not get the total results we wanted but it was a good day hearing that things have not progressed and that we do not have to go on Cytoxan, right now anyway. Gosh we are sure excited to have a baby. Please pray that it happens for us soon.

Side note: Please pray for our friends Dan and Kim and their son and daughter. There son Andrew has been in the hospital the last week or so suffering with a condition called ADEM. Please pray that Andrew takes a turn for the better and soon. Pray for peace and supernatural rest.

Best!

Wednesday, March 19, 2008

Rah Rah Rochester!

No I didn't! The title came from one of those handy "Experience Rochester" guides at the sprawling airport known as Rochester International. It's so funny to think of how sprawling this Mayo complex is downtown yet the airport I think has 4 maybe 5 gates.

So made the trip once again. Went smoothly, except I thought the plane in Minneapolis was going to just give up on getting a run way and drive us there. I swear we could have drove there faster. Felt like we taxied 10 miles. We never broke 10,000 ft before we started coming back down. It was funny. If you have to connect in Minneapolis ever make sure you get on the tram for your connecting gate because chances are you will be walking to Canada for your connecting flight. Here I thought putting Denver International in Kansas was bad. LOL.

Chose to stay at the Holiday Inn Express this time vs. Kahler Inn and Suites. I've stayed at the Kahler Inn probably 5-7 times since starting to come up to Mayo and each time the service and hotel has gotten worse and worse this last trip in Nov 07' was the straw that broke the camel's back. HIExpress room is great - cheaper, continental breakfast free and they have hard wire internet, none of that wireless stuff. Only possible drawback is the distance I have to walk to get to where I need to be when the rooster crows. Guy at the desk, not his name, tried telling me. "Well you come down to the 2nd floor go down that hallway take the skyway to this building, turn left take the skyway to this building, go downstairs turn right, turn left, go through this building and your at Mayo!" This should be interesting, they have this place set up! There's food, shoe shine, haircuts, you name it, all underground! It's like a maze down there. Lucky thing they have workers EVERYWHERE you can ask directions from.

Mayo in general. What can I say? I am just speaking for myself, but I think this place is simply amazing. I have never been to a hospital which is so organized, so patient friendly, so full of experts, so analytical. I guess in some ways they have to be the best around. Mayo is this town. As goes Mayo, I'm sure goes the town; so people really seem to take pride in helping others.

Tomorrow bright and early I have scheduled blood work, give them some other bodily fluid, and a Body Ct scan. I am praying to God that is all they need me to do. I am also praying to God that the results of the last 3 months have been nothing short of a miracle. In the afternoon, I meet with Dr. Torres, I think just mainly cause he wants to see me, see how things are going. I think the world of this guy. He has really pulled out all the stops in my treatment. When others said we need to go where no man has gone before, inside Doug, he said Waaaaaait a Min! Is this really necessary? I like doctors who slow down, consult with others before coming to conclusions. Following that I meet 3pm with Dr. Luthera to go over the results.

I had better sign off for now don't want to fall to sleep in the Ct machine, bang my head or worse!

Best!

Tuesday, March 18, 2008

ECD def

Erdheim-Chester disease (ECD) is a rare multisystem disorder of adulthood. It is characterized by excessive production and accumulation of histiocytes within multiple tissues and organs. Histiocytes are large phagocytic cells (macrophages) that normally play a role in responding to infection and injury. (A phagocytic cell is any "scavenger cell" that engulfs and destroys invading microorganisms or cellular debris.) In those with ECD, sites of involvement may include the long bones, skin, tissues behind the eyeballs, lungs, brain, pituitary gland, and/or additional tissues and organs. Associated symptoms and findings and disease course depend on the specific location and extent of such involvement. The specific underlying cause of ECD is unknown.

Diagnosed in 1-200 people in the world. No standard treatment.

Sunday, March 16, 2008

Past

During my High school years I was very involved in sports, Football, Wrestling, & Track & Field. I lettered in Football 3 years, Wrestling 2 years, Track & Field 3 years. Following high school I attended the University of South Dakota on a full ride football scholarship. Out of high school I got very involved in the sport of Triathlon. My greatest accomplishment in this sport was completing Iron Man Wisconsin in 2001. During my sports career I never had an injury or any health problems.

1995: The story begins in my father's office. I had been mentioning some light-headedness. He thought I should see a doctor for it. We made an agreement if he would get a physical I would go to the doctor to get checked out.

Soon after, I found myself in my family physician's office. He did some basic blood/urine work. He noted that my blood pressure was elevated and that my creatinine levels were elevated as well. Creatinine is a by product of kidney function. He referred me to a local nephrologist. From there I had a CT scan and (possibly) MRI, all abdominal. Dr. Marple felt that I had multi cystic dis plastic kidney disease, which is basically cysts inside the kidneys. He prescribed blood a blood pressure med, in hope of prolonging the life of my kidneys.

2000: For five years I went with this diagnosis. I have a very good friend and shot put coach, Gus, whose brother was, at the time, the chair of the neurology dept at the mayo clinic in Rochester. Gus thought his brother could get me in for a second opinion with his friend and colleague Dr. Torres who is also the chair of the nephrology dept. Upon my visit many ct/mri's and misc testing, Dr. Torres felt my condition was not multi cystic dis plastic kidney disease but just damaged kidneys from an unknown origin. Basically my right kidney is non functioning and my left has damage as well but has grown to compensate so I have fairly normal kidney function. Dr. Torres' goal was to keep my kidney function from getting worse, which was helped by controlling the blood pressure, a basic physiology kidney stuff.

Following the initial visit with Dr. Torres I returned to the Mayo Clinic approx 3-4 times for maintenance checking Mri/ct scans, blood draws, x-rays, etc to confirm that the kidneys were staying the same, function wise as well as damage wise. The last time I visited Dr. Torres was 2005 when I moved out to Colorado. Living in Colorado I found a local Nephrologist and followed up with her for routine check-ups on the kidney function.

By the grace of God in 2007 I made friends via a business "adventure" who was a neurosurgeon. He, knowing I had sinus issues, recommended a ct scan to check them out. He happened to volunteer to read them and have a fellow colleague of his, an ENT doctor, check them out as well. They both noted sinus irregularities as well as lesions on my brain and a mass located behind my right eye.

June 2007, the ENT and an ocular plastic surgeon went in to remove as much of the mass they could and clean up/open up my sinuses. The Biopsy on the mass revealed a scar tissue type mass, not cancerous. No explanation as to how or why it was there. Before or after the neurosurgeon sent me to a disease doctor to check if I had some autoimmune disease. More blood tests, and a spinal tap later I couldn't get her to follow up with me. Apparently rather then saying she had no idea, and admit she was human, she opted to not return my many phone calls hoping that I would just go away. Her name is Dr. Messa and I have no qualms about letting the world know I think she is a poor doctor.

Also summer of 2007 I had surgery by the same ocular plastic surgeon to repair my defective tear ducts. All my life my eye water would not drain properly through my tear ducts. He performed the surgery in 2 hours which was scheduled for 45min. He ran into more of the scar tissue similar to the mass behind my right eye.

About the same time my local nephrologist had presented my charts at a conference in Aspen and it was suggested to her that I may have a rare form of kidney disease. She asked me to see a local urologist to come up with a plan with her and to confirm the disease she suspected. Dr. Kim is his name. I call doctors such as Dr. Kim, knife doctors being that usually their only solution is to cut on people. I overheard him speaking with another patient nearby, "We must go in and remove the kidney", the patient repeatedly replied "is this the only option?" It seems kind of drastic but he stuck to his guns removal was the only option. Shortly there after he came into my room to note some irregularities and a need to remove the right kidney and that I might have colon cancer. No worries he called me in the parking lot to let me know he read his brain ie a book and I do not have colon cancer. He made a phone call and realized that the numbers were normal for my height and weight - a phone call that should have been made prior to meeting with the patient! One ultrasound and 1 ct scan later. Needless to say Dr. Kim isn't on my top doctors list.

November 2007, armed with all the latest medical records I took a trip to Mayo to see what they could say. I visited once again with Dr. Torres. I wasn't in his office more then 10 min and he told me that he had consulted with some other doctors and he feels I may have ECD Erdheim Chester Disease. He referred me to a Dr. Luthera who has treated others with the condition. So the tests to confirm the diagnosis began. This was my most grueling visit to Mayo to date. Two Mri's one I was inside for 1 hour 45min which was at the time the longest they had done to date at that location. One I fell to sleep in and freaked out, got very claustrophobic and had to push the panic button. Body bone scan where they inject you with some chernobyl. One kidney function test with a catheter and lasics which was by far the most fun, chest xrays, ekg, ct scan, blood work, urianalysis. All the testing came back to confirm ECD. Heather flew up to meet with the doctors and I. Basically Dr. Luthera spoke of what he had had success treating patients with ECD. Two drugs were mentioned, Cytoxan and Tomoxiphan. He suggested that I go on Tomoxiphan being that we were trying to have kids and Cytoxan runs the risk of sterility.

Dr. Luthera gave us basically 3 months to try tomoxiphan then I was to come back and check the results. My belief is he will suggest cytoxan if he is not seeing results. These 3 months were a way for us to get some sort of treatment and still have 3 months to try naturally to get pregnant.

Upon returning we immediately tried to get in with a reproductive clinic called Conceptions and spoke with a doctor Albrecht. Dr. Albrecht basically said we need to have a sperm count check on Doug and some blood work on Doug. About the same time Dr. Torres wanted me to have another MRI they didn't get done up at mayo. This one was an MRI to check if the ECD had affected my reproduction status. Dr. Albrecht came back with the results not very good count and very abnormal FSH levels in my blood. FSH is an indicator of testosterone levels. This told him that the ECD had in fact affected my reproductive ability. He basically believes that it would be a miracle for us to get pregnant naturally and that IVF is the only option due to the low sperm count. He left us to try on our own for 3 months and wanted me to start banking sperm 2-3 days per week. We have been trying for the past 3 months but all the praying and trying has not worked. So here we are facing another trip to the Mayo clinic. We are financially unable to afford the IVF so needless to say we are concerned.

Dec 2007 Following the last MRI at Mayo and the one at Littleton my arms started hurting real bad. Lots of pain. From some internet searching I found that the contrast they gave me in the last two MRI's, gadolinium, is said by the FDA not to be given to those who have kidney function issues. That would be me! Basically the drug created blockages in the superficial veins of my forearms. Found that out/confirmed with a couple Ultrasounds on my arms and a couple more doctors visits. It would have been nice if they had listened to me after the first MRI!

The last 3 months I have felt fine overall. There have been a few side effects but nothing major like blood clots in my legs or anything.

Saturday, March 15, 2008

Hesitation

When I think about this blog part of me is excited as I enjoy tinkering around with things such as this. Part of me feels like a cry baby, why do I feel special enough to post my here & there for all the world to read? I am kind of a proud guy (which can be a fault) and I don't usually like talking about myself, especially trails, and cringe when the focus of attention is on me. This is not because I am shy but maybe more so a tinge of feeling unworthy of the attention or a feeling of being unsure how to act. It is a weird feeling being told you have something major wrong with your health, especially when for all purposes you feel ok. It is a weird feeling having friends and family being sincerly concerned about your health. Hard to explain when you are used to for lack of a better, pointing at someone else but now three fingers are pointing back at you. Not to mention the obvious there are so many people in the world suffering worse then me. I haven't even got into the nitty-gritty but yet I still find myself thinking that I am a whiner, after all real men are to hold it in and act like there are no issues.


Tonight at church http://www.jfc.org/ our pastor spoke of being humble and that God is on the side of those who are humble & express humility. Could it be that the best people take risks, open up. I have all my life felt the truly strong, powerful, wise were those who wore their feelings on their sleeves. They allowed themselves to take risks where they might get hurt or look like a fool, express humility. People may think this is a Woe is We blog but I can't control that. If they can't see I'm just a guy with a unique condition talking about my life then so be it. It is what it is and nothing more.


So I guess before going to the current or future I should post on the past.

Friday, March 14, 2008

GO!

I've had in the back of my mind, since being diagnosed with Erdheim Chester Disease and coming to the realization how rare it is, an idea of how to explore my "feeeelings", get more information out to the public, allow friends and family to hear word for word, and possibly allow others affected by this condition to vent.

I think I may have found it with a blog. Being this is all new not sure how this is going to work or if it will at all. There's always the "delete blog" button if things need to go a different direction.

So from time to time I will post "thoughts," "feeeelings," "experiences."