tag:blogger.com,1999:blog-85171553680846531512011-09-19T17:01:59.181-07:00Be of good courage, and He shall strengthen your heart, all you who hope in the LORD. Psalm 31:24 This a blog for Erdheim Chester Disease patients, friends, and family's. It's purpose is to provide a forum for ECD patients to come together to share information with friends, family, & other ECD patients. This blog allows one author per patient. Contact blog admin Doug M to become an author on this blog.Doug Mhttp://www.blogger.com/profile/10044947016952929909noreply@blogger.comBlogger231100tag:blogger.com,1999:blog-8517155368084653151.post-49984768764405367652010-12-22T22:10:00.000-08:002010-12-22T22:10:24.196-08:00

Trip went well. Didn't meet with Luthera because he has retired. Just met with Torres. He said that everything looked good on paper. My readings had improved slightly. We are to continue BP meds and follow up with blood work 6 mo's and return to Mayo 1 year. Nothing out of the ordinary to report about the trip. Didn't have bad weather.

Doug Mhttp://www.blogger.com/profile/10044947016952929909noreply@blogger.com0tag:blogger.com,1999:blog-8517155368084653151.post-77186849300388588972010-01-29T14:32:00.000-08:002010-01-29T14:34:32.568-08:00

Mayo trip in December. Most everything went well except MRI. Couldn't handle it once again so didn't get a brain MRI done this time. Frustrating. Everything according the CT scan looked unchanged kidney wise. They did notice what they felt was a new node or something on my left lung. Was a little disheartning going up there so many times with no change to have something new come up. Torres

Doug Mhttp://www.blogger.com/profile/10044947016952929909noreply@blogger.com0tag:blogger.com,1999:blog-8517155368084653151.post-90013372342824890852009-09-28T17:50:00.000-07:002009-09-28T17:50:01.894-07:00

Nothing new to post health wise. I have been in IM training mode for about a month now except for a couple weeks off for business and personal travel. My wife and I were blessed with the opportunity to go to Israel for 10 days. What a trip! If you asked me what I liked most I would have to say to big of a question. It was all amazing. I would suggest it to anyone. Want some info I will put

Doug Mhttp://www.blogger.com/profile/10044947016952929909noreply@blogger.com1tag:blogger.com,1999:blog-8517155368084653151.post-55888719755945087612009-08-13T10:05:00.000-07:002009-08-13T10:09:06.151-07:00

IM training is going well. Seem to be experiencing the normal soreness tiredness associated with IM training. Weight has been coming off well. Lots of base training for now. ECD I was supposed to go back up to Mayo this summer. Forwarded Dr. Torres my results from most recent blood tests and he said that he felt I would be ok to wait to come back until next Jan 2010. This was good news.

Doug Mhttp://www.blogger.com/profile/10044947016952929909noreply@blogger.com1tag:blogger.com,1999:blog-8517155368084653151.post-1428468850195070912009-06-23T08:25:00.000-07:002009-06-23T08:33:03.959-07:00

Been a while since I have updated this blog. Nothing major going on health wise. Making an appointment today to have kidney function checked and also to get back up to Mayo sometime this summer maybe early fall. I did have a stress fracture occur on one of the bones in my foot. I have been dealing with that for several months now. Being fitted for orthotics and having PT work done. We are

Doug Mhttp://www.blogger.com/profile/10044947016952929909noreply@blogger.com0tag:blogger.com,1999:blog-8517155368084653151.post-41262638538401323502009-03-17T13:09:00.001-07:002009-03-20T23:22:17.194-07:00

Back from Mayo. All looks good. Doctors decided to not only delay my going on cytoxan but also to take me off tamoxifen. Said that things had not changed in a few years didn't see why risk going on cytoxan a drug that could cause cancer. So this trip was a real blessing from God. Having hernia surgery #3 tomorrow morning. Not looking forward to it. You think I would be used to it by now.

Doug Mhttp://www.blogger.com/profile/10044947016952929909noreply@blogger.com1tag:blogger.com,1999:blog-8517155368084653151.post-55347615502704712572008-12-23T08:42:00.000-08:002009-03-20T23:20:21.706-07:00

So Dr. Luthra wants to see me back up at Mayo (Land of Pannekoeken)before he will Rx the new treatment cytoxan. I am scheduled to return to Mayo Jan 27-29th. So far have body ct, head mri, ekg, chest x-ray, blood work, appointment with Dr. Torres (chair of nephrology dept), appointment with Dr. Luthra, and a appointment with an ENT doc I have never seen. Worst part of the trip will be the head

Doug Mhttp://www.blogger.com/profile/10044947016952929909noreply@blogger.com1tag:blogger.com,1999:blog-8517155368084653151.post-58873865304712008452008-11-25T00:00:00.000-08:002008-11-25T00:06:40.405-08:00

IVF didn't work for us this time. We are trying hard to keep hold of the fact that God has a plan for us and it is good. We struggle to understand sometimes. May try again in Spring. Figured out why Dr. Luthra wanted me to contact Arceci. Luthra was leaving town till Dec. Arceci basically said they talked and he felt Cytoxan was a good choice in treatment and that it didn't have any more or

Doug Mhttp://www.blogger.com/profile/10044947016952929909noreply@blogger.com0tag:blogger.com,1999:blog-8517155368084653151.post-74655856477496046262008-11-08T22:10:00.000-08:002008-11-08T22:14:05.892-08:00

Finally! Houston we have contact! Both doctors spoke last Friday morning. Dr. Luthra emailed me telling me I needed to get ahold of Dr. Arceci. His email seemed a little odd that he wanted me to contact Arceci. Hopefully I didn't offend him. Emailed Dr. Arceci's secratary to ask what was the next step. Didn't hear back from him. Will continue squeaking Monday. Thank you for all your

Doug Mhttp://www.blogger.com/profile/10044947016952929909noreply@blogger.com0tag:blogger.com,1999:blog-8517155368084653151.post-6490743036523118882008-10-31T21:57:00.001-07:002009-03-04T11:31:00.146-08:00

Writing a bit out of frustration. I have been trying for 6 months to get Dr. Luthra and Dr. Arceci to speak. Dr. Luthra feels Arceci should contact him and Arceci feels Luthra should contact him. Tried to schedule in office appointment John Hopkins with Arceci and get the feeling that they are putting me off because he doesn't want to be perceived as stealing another Dr's patient. I called his

Doug Mhttp://www.blogger.com/profile/10044947016952929909noreply@blogger.com0tag:blogger.com,1999:blog-8517155368084653151.post-43012860826676183212008-09-08T08:43:00.000-07:002008-09-08T09:17:14.001-07:00

Well I started this 2nd opinion process 2 months ago. Supposed to head up to Mayo Sept 16th. Dr. Luthra is not going to be able to consult with Dr. Arceci prior to the visit to Mayo, which is what the goal was. We have decided to have Dr. Arceci look over my records and give a general opinion. I might be making a trip to see him this fall at John Hokpkins. Dr. Arceci's office has already

Doug Mhttp://www.blogger.com/profile/10044947016952929909noreply@blogger.com2tag:blogger.com,1999:blog-8517155368084653151.post-66887190951889901362008-07-20T22:53:00.000-07:002008-07-20T23:00:49.456-07:00

Decided to put off the hernia surgery until I have some other medical bills paid off. Finally was able to put Dr. Arceci & Dr. Luthra in touch or atleast I emailed them both each others contact information. I am out of the loop now. Will call in a couple weeks to check and see if they have made contact. Mayo visit got reschduled for Sept 17th.I have been feeling pretty good or normal

Doug Mhttp://www.blogger.com/profile/10044947016952929909noreply@blogger.com0tag:blogger.com,1999:blog-8517155368084653151.post-33655751779826394992008-05-21T07:42:00.000-07:002008-07-20T22:53:43.499-07:00

Been a while since I have posted anything. Nothing new to report ECD wise. Mayo is wanting me to come back up there July 2nd which will need to be rescheduled. Have in the back of my mind getting a second either at John Hopkins or MD Anderson but to be honest I don't really want to go through all the testing again and I can't really afford it. Recently I found out that I will need to have

Doug Mhttp://www.blogger.com/profile/10044947016952929909noreply@blogger.com0tag:blogger.com,1999:blog-8517155368084653151.post-77963336966095974522008-04-16T10:41:00.000-07:002008-04-17T19:35:14.376-07:00

I guess since I am the only one posting at this time. I will post something that is near and dear to my heart which is not related to my physical health.This morning I had to say goodbye to a very good friend of nearly 11 years. My buddy Dakota Seeker. I could not have asked for a better friend, dog. He was so smart, quick with love and attention, slow to anger, always excited to see you, made

Doug Mhttp://www.blogger.com/profile/10044947016952929909noreply@blogger.com1tag:blogger.com,1999:blog-8517155368084653151.post-86035749589475313612008-04-05T08:52:00.000-07:002008-04-11T08:11:29.672-07:00

So the thought is being tossed around about getting a 2nd on the disease diagnosis and the treatment. Not that Dr. Luthra is not capable but that this is very important and we need to know that we are getting the best possible. This disease is so rare, so the more information, the better! After making many calls to doctors who have treated ECD I have pretty much narrowed the list down to either

Doug Mhttp://www.blogger.com/profile/10044947016952929909noreply@blogger.com2tag:blogger.com,1999:blog-8517155368084653151.post-33254200169408637582008-03-22T20:14:00.000-07:002008-03-30T10:17:09.844-07:00

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

Doug Mhttp://www.blogger.com/profile/10044947016952929909noreply@blogger.com3tag:blogger.com,1999:blog-8517155368084653151.post-6792038450767070222008-03-21T10:03:00.000-07:002008-03-30T10:17:41.720-07:00

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

Doug Mhttp://www.blogger.com/profile/10044947016952929909noreply@blogger.com0tag:blogger.com,1999:blog-8517155368084653151.post-39716770219359780812008-03-20T19:50:00.000-07:002008-03-30T10:17:58.644-07:00

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.

Doug Mhttp://www.blogger.com/profile/10044947016952929909noreply@blogger.com0tag:blogger.com,1999:blog-8517155368084653151.post-70050932482834748762008-03-19T21:30:00.000-07:002008-03-30T10:18:12.149-07:00

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

Doug Mhttp://www.blogger.com/profile/10044947016952929909noreply@blogger.com0tag:blogger.com,1999:blog-8517155368084653151.post-67889433992814759852008-03-18T22:25:00.000-07:002008-03-30T10:18:26.541-07:00

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

Doug Mhttp://www.blogger.com/profile/10044947016952929909noreply@blogger.com1tag:blogger.com,1999:blog-8517155368084653151.post-27842394712080126952008-03-16T21:32:00.000-07:002008-03-30T10:18:40.238-07:00

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

Doug Mhttp://www.blogger.com/profile/10044947016952929909noreply@blogger.com0tag:blogger.com,1999:blog-8517155368084653151.post-66910241584654473142008-03-15T18:58:00.000-07:002008-03-30T10:18:52.647-07:00

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

Doug Mhttp://www.blogger.com/profile/10044947016952929909noreply@blogger.com1tag:blogger.com,1999:blog-8517155368084653151.post-67461404137740564952008-03-14T08:51:00.000-07:002008-03-30T10:19:07.345-07:00

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

Doug Mhttp://www.blogger.com/profile/10044947016952929909noreply@blogger.com0