Our Meeting with the Kidney Doctors was Fascinating and Rewarding
@DeborahDiane (40853)
Laguna Woods, California
November 7, 2015 12:08am CST
As I wrote the other day, my husband and I have been in San Diego at the American Society of Nephrologists convention. Those are kidney doctors.
Because my husband has been using an experimental drug for kidney disease related anemia, he and I were invited to the convention. No one in the world has been on the drug longer than him, so the scientists wanted to know how he was doing. They were impressed. It was really interesting.
Last January, the pharmaceutical company made a seven minute movie of my husband and me talking about how the drug had improved the quality of his life.
This week, that movie was shown to kidney doctors from around the world. It was translated into other languages.
Then, yesterday afternoon we were interviewed by doctors from China. They had already seen the movie and one of them said he thought the people in the movie were actors. They were excited that they got to meet us!! They even wanted to get their pictures taken with us ... which we thought was very flattering.
Last night, we were taken to dinner by a group of doctors and researchers from the United States.
This morning, we met with a group of doctors from Europe ... and then saw the Chinese and American doctors and researchers again.
What surprised me was that the doctors from all the countries were very open and honest about the strengths and weaknesses of the medical systems in their countries, how to get the drug to market, how to improve patient compliance, etc.
It was very interesting. It was a very worthwhile way to spend the past couple of days, but now I'm exhausted.
I'll catch up with notifications as soon as I can! 
29 people like this
23 responses
@crazyhorseladycx (39503)
• United States
9 Nov 15
how fortunate to've that 'xperience, meetin' the doc's 'n researchers from 'round the globe. i'd been pickin' their brains, lol. so glad yer hubs's had such great luck with this 'n hopefully it'll help others in the future.
2 people like this
@crazyhorseladycx (39503)
• United States
9 Nov 15
@DeborahDiane that's wonderful, ms. d-d! so many seem to be closed minded 'n closed lipped. to find those that'll speak with ya is near priceless!
1 person likes this
@DeborahDiane (40853)
• Laguna Woods, California
9 Nov 15
Yes, we were definitely picking their brains while we had the chance. They were very willing to answer our questions, too!
2 people like this
@DeborahDiane (40853)
• Laguna Woods, California
10 Nov 15
@crazyhorseladycx - It was a wonderful experience and we felt that we are really contributing to the improvement of life for millions of people in the future.
@celticeagle (190127)
• Boise, Idaho
8 Nov 15
Sounds like you have had some interesting last few days. Glad the medication is working so well and that the doctors were so nice.
1 person likes this
@celticeagle (190127)
• Boise, Idaho
8 Nov 15
@DeborahDiane ...Well, that is just wonderful. Feeling better making the whole thing bearable I think.
1 person likes this
@DeborahDiane (40853)
• Laguna Woods, California
8 Nov 15
The experience was very interesting. We are so fortunate that this medication has worked so well for my husband. It has also worked for the other people in the trial more than 90 percent of the time. Once it gets approved, it could help millions of people with kidney disease have a better quality of life. It doesn't cure it, but it sure made him feel better!
1 person likes this
@celticeagle (190127)
• Boise, Idaho
9 Nov 15
@DeborahDiane ...That is wonderful to hear.
1 person likes this
@jaboUK (64346)
• United Kingdom
8 Nov 15
@DeborahDiane That's great to think that others will be helped, no matter where they are.
1 person likes this
@softbabe44 (5815)
• Vancouver, Washington
7 Nov 15
Thanks so great that you could give good treatments mabe this way more kidney patients will recieve the same strenght to go on.
1 person likes this
@softbabe44 (5815)
• Vancouver, Washington
8 Nov 15
@DeborahDiane Thats a good way to get the word out.
1 person likes this
@softbabe44 (5815)
• Vancouver, Washington
9 Nov 15
@DeborahDiane And its a great thing to do letting others know that there are medications out there that work.
1 person likes this
@rakski (157081)
• Philippines
9 Nov 15
@DeborahDiane that is good to hear that his disease is responding to the medicine. I am hoping for the best for him.
1 person likes this
@DeborahDiane (40853)
• Laguna Woods, California
9 Nov 15
Yes, we feel very fortunate. My husband is doing very well with his kidney disease, all things considered.
1 person likes this
@DeborahDiane (40853)
• Laguna Woods, California
10 Nov 15
@rakski - It has already lengthened his life and improved his quality of life. He doesn't expect to live forever, but this medication has made an amazing difference.
@poehere (15123)
• French Polynesia
8 Nov 15
@DeborahDiane That is fantastic and you are very lucky they did this for the two of you. I am happy that you had a chance to go
1 person likes this
@DeborahDiane (40853)
• Laguna Woods, California
9 Nov 15
@poehere - We were very excited to be there. We learned a great deal about the medication he is on.
1 person likes this
@DeborahDiane (40853)
• Laguna Woods, California
8 Nov 15
As far as we know, my husband was the only patient at the entire conference. It was only for doctors and scientists, and they paid for us to come. It was very flattering!
@GardenGerty (169603)
• United States
8 Nov 15
That was probably quite an education for you as well.
1 person likes this
@DeborahDiane (40853)
• Laguna Woods, California
8 Nov 15
This was a very educational experience! We learned a great deal and the doctors seemed to really appreciate the fact that we went down there so they could see my husband and talk to him personally.
@lovinangelsinstead21 (36847)
• Pamplona, Spain
10 Nov 15
Really good news that. Anything where others can get together to contribute and make life worth while for others is really great. Hope it all goes well and saves many many lives.
1 person likes this
@lovinangelsinstead21 (36847)
• Pamplona, Spain
11 Nov 15
@DeborahDiane
Hope so too. We can all complain about our bad times but I saw a lovely Spanish lady with brittle bone illness and she is so small and yet has so much heart makes me feel no bigger than a little toe. So much courage to have to live like that.
@DeborahDiane (40853)
• Laguna Woods, California
14 Nov 15
It was a very exciting trip, and I am glad we got to go.
1 person likes this
@Tampa_girl7 (54744)
• United States
7 Nov 15
I am so happy for you and your husband that this treatment is helping him.
1 person likes this
@DeborahDiane (40853)
• Laguna Woods, California
8 Nov 15
Yes, this treatment has dramatically improved his quality of life.
@jillybean1222 (6406)
•
7 Nov 15
I'm glad you were able to attend this. I am sure it was interesting!
1 person likes this
@DeborahDiane (40853)
• Laguna Woods, California
8 Nov 15
Yes, it was very interesting and we are hopeful that this will help all these different countries help the kidney patients in their nations.
@just4him (323168)
• Green Bay, Wisconsin
12 Nov 15
@DeborahDiane That would be wonderful
1 person likes this
@tuttiharris (1338)
• Chattanooga, Tennessee
7 Nov 15
@DeborahDiane(1217), Sounds like you had a great, and a wonderful experience, and I am so glad your husband is doing so well. And sounds like he also helped other people in the same situation. Blessings to you both, and just lay back and relax from the trip. ((hugs))
1 person likes this
@DeborahDiane (40853)
• Laguna Woods, California
8 Nov 15
One of the reasons we are so willing to talk to the doctors, be filmed and answer all their questions is because we would like to see others benefit as much as he has.
@DeborahDiane (40853)
• Laguna Woods, California
8 Nov 15
You have summed up how we feel very well. We really appreciate being able to contribute to medicine in this way.
@DeborahDiane (40853)
• Laguna Woods, California
7 Nov 15
I agree! Everyone has been very encouraged and excited about this new medication.
@Blondie2222 (28610)
• United States
7 Nov 15
That's awesome glad you had a good time and this medicine is helping your husband. It's definitely a great experience and good memory for you both. I hope it continues to work well for him also
1 person likes this
@DeborahDiane (40853)
• Laguna Woods, California
7 Nov 15
Thank you. We hope it continues to work, too. They said that their animal studies indicate it will continue to work!
@slund2041 (3314)
• United States
7 Nov 15
Sounds like an interesting trip. Nice that the doctors took you all out to eat. I am glad you are back.
1 person likes this
@DeborahDiane (40853)
• Laguna Woods, California
8 Nov 15
The scientists involved in this were very interesting. I am so glad we have had the opportunity to be part of it.
@wetnosedogs (1533)
• United States
7 Nov 15
Oh wow, You are meeting all kinds of doctors and it all sounds good. So now they know you aren't an actor, lol, but the real thing. Continued success for your husband.
1 person likes this
@DeborahDiane (40853)
• Laguna Woods, California
8 Nov 15
Yes, we are definitely not actors! LOL We enjoyed being able to answer all their questions!
1 person likes this
@ElizabethWallace (12069)
• United States
7 Nov 15
Great, but also let us know what you learned from the people who were so open and honest. It is fascinating.
1 person likes this
@DeborahDiane (40853)
• Laguna Woods, California
7 Nov 15
I look forward to seeing you Tuesday and telling you personally.
@DeborahDiane (40853)
• Laguna Woods, California
8 Nov 15
Thank you! I finally recovered today. We spent a lot of time walking, standing and talking the past few days.
