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 prayers!
God Bless!
Saturday, November 8, 2008
Friday, October 31, 2008
Spending 6 months Trying to get 2 doctors to talk
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 secratary M,W,F of this week. Called back every day he said to call back and he should know more about Arceci's schedule. Each time he puts me off even more.
Now starting to get bills from John Hopkins and nothing but speaking in generalities. Really starting to wear on me. I have put my treatment on hold to get more advice and it has been a total waste of time.
I don't know what to do.
I have hernia surgery scheduled for Nov 19th. Dr. I saw in June never called me back. Schedulular "I called you for 2 weeks straight" and the call woulnd't go through. COME ON! Phrase of the season, "ARE YOU SERIOUS!" Gime-a-break!
On a much better note my wife and I started the IVF process this month. Or should I say she started it. 3 weeks of shots sometimes 3 a day, lots of discomfort, retrieval, and we have 12 fertilized eggs at the clinic as of today. I ofcourse have given the short version. The fact is this was a difficult process for my wife. She handled everything so well. I am very proud of her. She's amazing. We are hoping for implantation Sunday or Day 3 which would be less expensive otherwise we will have to go Day 5 or Tue of next week. We are super excited. Kindof tempored because we have to keep a close watch on her in case of hyperstimulation. So far she has been doing pretty good. Lots of water, low sodium, some more pills. I think I ask her how she is feeling about every 20 min. I'm probably getting old.
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 secratary M,W,F of this week. Called back every day he said to call back and he should know more about Arceci's schedule. Each time he puts me off even more.
Now starting to get bills from John Hopkins and nothing but speaking in generalities. Really starting to wear on me. I have put my treatment on hold to get more advice and it has been a total waste of time.
I don't know what to do.
I have hernia surgery scheduled for Nov 19th. Dr. I saw in June never called me back. Schedulular "I called you for 2 weeks straight" and the call woulnd't go through. COME ON! Phrase of the season, "ARE YOU SERIOUS!" Gime-a-break!
On a much better note my wife and I started the IVF process this month. Or should I say she started it. 3 weeks of shots sometimes 3 a day, lots of discomfort, retrieval, and we have 12 fertilized eggs at the clinic as of today. I ofcourse have given the short version. The fact is this was a difficult process for my wife. She handled everything so well. I am very proud of her. She's amazing. We are hoping for implantation Sunday or Day 3 which would be less expensive otherwise we will have to go Day 5 or Tue of next week. We are super excited. Kindof tempored because we have to keep a close watch on her in case of hyperstimulation. So far she has been doing pretty good. Lots of water, low sodium, some more pills. I think I ask her how she is feeling about every 20 min. I'm probably getting old.
Monday, September 8, 2008
411
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 contacted Dr. Luthra's office requesting the films etc. Really impressed with how fast Dr. Arceci and his staff work.
My father has graciously offered to help us out with the money for IVF. We are shooting for trying IVF in October.
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 contacted Dr. Luthra's office requesting the films etc. Really impressed with how fast Dr. Arceci and his staff work.
My father has graciously offered to help us out with the money for IVF. We are shooting for trying IVF in October.
Sunday, July 20, 2008
A 2nd
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 according to what I consider normal. Trying to loose some weight. Run 6 days per week, Swim 2-3 days per week, right now Bike 1 x per week. Cutting back on calories and fat.
Still no positive pregnancy test. We are trying to keep our spirits up in this department. By the grace of God we will be blessed with a child soon.
I have been feeling pretty good or normal according to what I consider normal. Trying to loose some weight. Run 6 days per week, Swim 2-3 days per week, right now Bike 1 x per week. Cutting back on calories and fat.
Still no positive pregnancy test. We are trying to keep our spirits up in this department. By the grace of God we will be blessed with a child soon.
Wednesday, May 21, 2008
3 is a charm
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 another hernia surgery this summer, my third one. I know what to expect but not looking forward to it.
I Peter 4:12-13 Beloved, do not think it strange concerning the fiery trial which is to try you, as though some strange thing happened to you; but rejoice to the extent that you partake of Christ's sufferings, that when His glory is revealed, you may also be glad with exceeding joy.
Recently I found out that I will need to have another hernia surgery this summer, my third one. I know what to expect but not looking forward to it.
I Peter 4:12-13 Beloved, do not think it strange concerning the fiery trial which is to try you, as though some strange thing happened to you; but rejoice to the extent that you partake of Christ's sufferings, that when His glory is revealed, you may also be glad with exceeding joy.
Wednesday, April 16, 2008
Dakota Seeker M
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 fast friends with any a human or animal, protector.
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 fast friends with any a human or animal, protector.
A few of my fond memories are:
-Training with him on bird wing. I tracked the wing all over the back yard without him seeing me, then hid the wing in the gutter 7' up on the garage. He came out followed the exact path of the wing on the ground and went & stood under the gutter looking up.
-Him running through water at his shoulder height, he looked like a deer bounding. Even though he wasn't a water dog he loved to swim and play in it.
-Dog Run back home. In fear watching as he lept across a 7' wide creek. It was an amazing thing to see.
-In the last few months he figured out where the best place was to get sick - on the tile floor. Each and every time he would hide from me because he thought he might be in trouble, and then he would wait for me to tell him that he was ok.
Sooo many memories, too many to post.
These past few months he had been battling intestinal cancer. Doctors in November (same month I got diagnosed with ECD)gave him less then a month to live. But not him. He faught. He still had too much love to give out freely and he continued to pour it out for 5 more months. In the end I, the person he always looked to for comfort had to say goodbye. He went peacefully and quietly in my hands as I told him like I always have, "your ok, your ok, your ok".....
In peace, eat, sleep, play, make new friends. Can't wait to see you again my friend. "Mom" says to share a few tennis balls with some of the other dogs!!
Your buddy,
Doug M
-Training with him on bird wing. I tracked the wing all over the back yard without him seeing me, then hid the wing in the gutter 7' up on the garage. He came out followed the exact path of the wing on the ground and went & stood under the gutter looking up.
-Him running through water at his shoulder height, he looked like a deer bounding. Even though he wasn't a water dog he loved to swim and play in it.
-Dog Run back home. In fear watching as he lept across a 7' wide creek. It was an amazing thing to see.
-In the last few months he figured out where the best place was to get sick - on the tile floor. Each and every time he would hide from me because he thought he might be in trouble, and then he would wait for me to tell him that he was ok.
Sooo many memories, too many to post.
These past few months he had been battling intestinal cancer. Doctors in November (same month I got diagnosed with ECD)gave him less then a month to live. But not him. He faught. He still had too much love to give out freely and he continued to pour it out for 5 more months. In the end I, the person he always looked to for comfort had to say goodbye. He went peacefully and quietly in my hands as I told him like I always have, "your ok, your ok, your ok".....
In peace, eat, sleep, play, make new friends. Can't wait to see you again my friend. "Mom" says to share a few tennis balls with some of the other dogs!!
Your buddy,
Doug M
Saturday, April 5, 2008
A 2nd
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 MD Anderson in Houston or Dr. Arceci at Johns Hopkins both as it sounds have treated around 20 patients (according to their offices) with ECD, which is far more then anyone else that I have found anyway, and in speaking to other doctors these two names were continually brought up.
We have not committed to either as of yet. I still need to check on insurance etc. If anyone has any other suggestions on doctors please feel free to post a comment. What I have been basically looking for is how many patients they have treated, their name, phone number, location, misc past treatment info.
Warm days ahead!
We have not committed to either as of yet. I still need to check on insurance etc. If anyone has any other suggestions on doctors please feel free to post a comment. What I have been basically looking for is how many patients they have treated, their name, phone number, location, misc past treatment info.
Warm days ahead!
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