Mayo November 2010

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.

Update 2010

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 wasn't too concerned about it, Luthera said it may or may not be something new he suggested a repeat CT scan locally in 6 months. Left feeling a little uneasy. Since then have spoken to Torres about my concerns he spoke with a couple other radiologists and they felt it was nothing to be too concerned about and actually would be comfortable with a repeat CT in 12 months. I think I will still go for the 6 months repeat CT on the safe side.

So other then that the new year has begun. Family is doing well. Kids are involved with many different activities. I am in full swing Iron Man training for St. George UT Iron Man May 1st. I feel lucky having this disease and being able to do what I am able to do. Run, Swim, Bike. I hope that by me doing this race gives others less fortunate then I hope and courage that they can overcome the challenges which come with ECD.

In the future I will try to be more on point about posting more regularly so check back for updates and follow me on race day ironmanlive.com will forward race number down the road.

Bless & Best!
Doug

Nothing New

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 you in contact with our church. They put on a top shelf trip!

My wife and I are back in IVF mode. Got some good news today regarding the plan. Will post more in weeks to come. Pray for us that God may bless us with a child.

Update

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.

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 still trying to have a baby no luck yet. I have been having accupunture done to "maybe" help with fertility issues.

I have signed up for another Iron Man race. Well not really a race more like a long workout that is a race for a few. It's in May 2010 so hopefully I can get my foot and body back in shape over the next year. I've been swimming 3 days per week and biking on the trainer 6 days per week. Very little running due to my foot issues.

Skinny

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. Oh well.

Thats all I know for now. Maybe post some pictures from Mayo if Wife emails to me.

Thank you for all your thoughts and prayers,

D

Return to the Land of the Pannekoeken

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 MRI. Already starting to bug me. Never had an issue with the tube until lately. As I have found once you have an issue it is difficult to forget. Thinking I will ask for some drugs this time.

Been feeling well. Just trying to lose more lbs. Wish it would warm up a bit I don't care for running in the cold.

Family is doing well. Kids are on break now. Christmas is nearing so they are very excited.

Bless and Best!