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Sioux Falls


Health Interests
Cancer, Kidney and urinary tract disorders, Men's health issues

Posts (178)

8 hours ago · Total Pancreatectomy in Pancreatic Cancer

There is also a Facebook group called Whipple Surgery Survivor Group. I sure you would find someone like you in that group.

I had my Whipple 5 1/2 years ago. The surgeon did not remove my entire pancreas, but the part that was left was so bad that it was not reattached to my digestive system. I asked the surgeon why he didn't remove the entire pancreas. He told me that my surgery had already lasted 8 1/2 hours and he didn't want to take the time to remove the rest of it.

I had been a Type II diabetic for 5 years before I was diagnosed with pancreatic cancer. I had learned to control my diabetes with exercise and diet. The only real difference now that I am a Type I diabetic is that I now use insulin as well as watching what I eat (along with Creon).

I also have to deal with fatigue. I have not been affected by nausea and sickness.

I was able to get on Social Security Disability. My understanding is that pancreatic cancer just about guarantees that you will qualify for disability. I filled out the application online. It may take some time, but don't become discouraged and give up trying.

I hope that you will find some answers with testing that you have scheduled.

Thu, Jan 16 6:19pm · Living Donor Process in Transplants

I received a call from my transplant coordinator at Nebraska Medicine this afternoon. She informed me that the transplant committee has approved placing my name on their transplant list, however I will be inactive at this time. We recently moved and i had to find a new oncologist. One of the first things he did was to order a PET scan. After the scan, he called and told me there were "shadows" in the area of my Whipple surgery. He recommended that I have another PET scan in 3 months. Nebraska Medicine said they wanted to see the results of that scan before they would make me active.

Fri, Jan 10 6:32am · Living Donor Process in Transplants

@gingerw Nebraska will transfer my time if I ask them to. I have not decided whether or not to do that. The out-of-pocket costs at Nebraska will be significantly higher. At Mayo, I would have to stay in Rochester for 3-4 weeks and I can stay at Gift of Life House where Mayo comes and does your blood work. In Nebraska, I would have to stay in Omaha for 6 weeks in a motel or other housing I could find. My wife would have to drive me to the hospital for all my blood tests and appointments. She is not excited about all that big city driving.

My sister begins her procedure next Tuesday. She will receive several rounds of chemo as an outpatient to kill off her stem cells. Then she will have her own stem cells (harvested a couple of weeks ago) transplanted back into her body. The whole process will take several weeks.

Fri, Jan 10 6:50am · Living Donor Process in Transplants

@contentandwell If Nebraska Medicine approves me, I will be listed at both. The system is designed to give the sickest people a greater chance for a transplant, but length of wait time still plays a significant role. Mayo has 800 people on their wait list. Nebraska has 200. I got that information from SRTR.ORG. Also from that website, the 2 major transplant centers in my area are Mayo and Nebraska Medicine. I know I've looked at that website before, but thanks for reminding me to review that information.

During the transplant education appointment on Wednesday, the nurse shared the story of a gentleman who received the call just months after being listed. He said it was too quick for him and he was too busy at the time. Now, 4 years later, he is still waiting for the second call.

Thu, Jan 9 5:20pm · Recent diagnosis of pancreatic cancerous tumor - awaiting PET in Pancreatic Cancer

In the last few years, doctors have made a lot of progress in treating pancreatic cancer. I recently read about a new medicine that has been approved for treating pancreatic cancer. I won't say that your journey will be easy, but more people, even those with those with more advanced stages, are surviving this cancer. After being evaluated by a doctor, an individualized plan will be developed by the team. My treatment included the Whipple and 6 months of chemo. That was 5 years ago. I know fatigue is a problem, but if you can get him up and walking and building his strength, it will help with recovery after surgery.

Thu, Jan 9 4:54pm · Living Donor Process in Transplants

Just got home this afternoon. While my sister was being evaluated for a stem cell transplant at University of Wisconsin, I was being evaluated for a kidney transplant at Nebraska Medicine in Omaha. Yesterday was the big day. We arrived at the hospital at 6:15 AM, had 11 appointments and left around 4:00 PM. I was scheduled for 6 appointments today, but my transplant coordinator talked to the kidney doctor and explained that I had an echocardiogram and a heart stress test done at Mayo last summer. He looked at the reports from those tests and cancelled my tests at Nebraska Medicine. They then rescheduled my remaining tests for earlier in the day, so we were on our way home by 10:30 AM. The transplant committee meets next Thursday and my transplant coordinator said she would call me on Friday to tell me the results of that meeting. The current wait time for a kidney at Mayo is 3 to 7 years. I have been on Mayo's list for about 1 1/2 years. The current wait time at Nebraska Medicine is 1 to 3 years. Having a living donor would change the wait time to 2 to 4 months instead of years. At this time, to my knowledge, I have no one working on becoming a living donor.

Sun, Jan 5 8:09pm · Living Donor Process in Transplants

@contentandwell @retiredteacher @rosemarya @1bigblacksuv Thanks for your thoughts and prayers. My wife and I will be driving to Omaha on Tuesday with tests on Wednesday and Thursday. I am not sure when their transplant committee meets, but I am sure I will find out all about their process later this week. Will let you all know once all the tests are done.

Thu, Jan 2 2:15pm · Anyone know of long distance transportation assistance? in Just Want to Talk

I was 3 1/2 hours from Mayo and for 4 months had to go once a week for treatments. People from my church took turns driving me to my appointments.