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.
Monday, September 8, 2008
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!
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!
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.
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.
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