December 22, 2024
James ended up getting a nocardia lung infection and got taken to Wesley then flown to KU Med on Nov 7th. He came home a month later on Dec 4th.
James is on IV antibiotics that we do at home until the 25th. His IV port will be removed by home health the next day at the house.
His new kidney is still very impaired so James is also doing hemo-dialysis 3 times a week until rhe kidney numbers improve and his urine output increases. Yes, we are back to measuring his urine everyday. Ugh.
We hope the kidney will recover but we just have to wait. So far, it doesn't look good but too soon to tell.
November 8, 2024
James has been coughing for a more than a month. He had to put off diagnosis because insurance pays for "step therapy". He has to try the cheap stuff first.
Xray finds something, treat with antibiotics, xray 2 weeks later, different antibiotics, no help.
Resident prescribes a CT but doesn't know how to so the order wasn't honored. Finally got it right and CT showed the same mass was still there.
Next step bronchoscopy. Resident also had no idea how to order it so Lori called a few pulmonolgists until she found one that could see him the next day. Bronch was done on Halloween. Results informed Nov 6. Nocardia infection. No, you've never heard of it because it only strikes immunocompromised people.
Already advanced because no one would treat him properly.
Brought him to ER Nov 6 morning. He's since developed tachycardia but cardiologist is treating it. He just needs to stay quiet.
May lose kidney unless this inflection gets controlled.
Treatment can last 6-9 months to kill the bacteria for good. Kidney can bounce back. Numbers terrible right now.
He was flown to KU Med and we are hoping insurance will cover all that $40,000 cost.
KU Med now has him on an insulin drip because his sugar was very high due to infection. We learned after the transplant that 40% of recipients then become diabetic and James did.
They probably will diagnose him with periocarditis they have a cardiologist seeing him.
He also just saw the Infectious Disease doctor for his lung infection. They are also testing for sepsis but that takes 3 days for the culture to grow.
He woke up with a low body temp of 95.8°, so they are putting him on a "bear hug" to warm him up, which will make him very happy! He has been cold all the time since he started dialysis in February of 2023.
They do labs every 4 hours and have started him on a new antibiotic and will soon start him on a full spectrum antibiotic for whatever it is that he's got in his body.
His family is hoping for a full recovery but he still may lose the kidney.
June 23, 2024
James' new kidney is waking up! It's 4 weeks later and his urine output has increased a lot! His labs keep showing he is able to go without dialysis so we are hoping his catheter in his chest will not be needed much longer.
He is traveling to KU Med weekly for now. He had to have a drain placed where he is retaining fluid over his new kidney and that will likely stay for a few weeks until it's all drained off. His staples, his dialysis catheter and his drain still need to be removed and he is unable to drive himself yet so family members are taking him on the 6 hour round trip!
We are using the donations to his HelpHopeLive fund to pay for mileage, tolls and a per diem and we are very grateful to have this fund to use for his needs since insurance doesn't cover this part of his transplant.
May 31, 2024
James got his kidney!! And today is the day for his fundraiser!
Save the credit card fees so your donation goes farther and James gets money to cover his trip to Kansas City. He's been there a week but will be another week in a hotel before he can go home.
May 2, 2024
Keep watching for the HelpHopeLive fundraiser starting at midnight on the morning of May 31st! HelpHopeLive is taking care of all the credit card fees from 12 am until 3:00 am on June 1st so everything you donate will go directly to his fund. Perfect!
Here's the link to the Facebook Event Page. Say you are Going to get all the details: https://www.facebook.com/events/1811623345987111
March 30, 2024
James has started on dialysis a little more than a year ago. He does it at home which is called Peritoneal Dialysis. He hooks up to a machine every night at bedtime and unhooks when he wakes up each morning. It's a pain in the you know what but he is still alive and feeling well.
He has gotten two offers of kidneys so far but the sugeons have decided that the donor wasn't viable so we are still waiting. The good news is that means He Is At The Top Of The List for a transplant.
We will be doing a fundraiser on May 31st that is removing all the fees from your donation so 100% of it will go to his fund! Keep an eye out on FB and on here for the link to donate on May 31st!
February 6, 2023
James is now starting dialysis. The transplant did not come fast enough. Lori and James are learning how to do peritoneal dialysis from home so he can start feeling better. His levels have declined and he is now feeling unwell.
He is still a good candidate for a transplant if they can just find a match.
July 5, 2022
James had his transplant review last month and we are waiting for some more testing but he seems to be good to go. The only problem is his blood type. He is O+ so it will be hard to find a match.
James is doing well enough but it might be another year before he gets the call. No dialysis at this time so that's good.
January 28, 2020
Thanks to all who donated to my Facebook Fundraiser in December. The total from you all was $1,055.00! Looks like we missed out on the Facebook match but this is still fabulous!!
Thank you all so much!
December 9, 2019
Thank you so much for everyone who donated through the Facebook fundraiser! We do not have that deposit in his account yet so do not know if Facebook matched any of it. I will post an update once we get that done! Thank you again!
January 8, 2019
James just saw his nephrologist last Friday after having a kidney ultrasound done that showed his bladder was emptying properly still. The doctor said his kidneys now function at 22%. This puts him in Stage 4 kidney failure. Stage 5 is when the transplant will be needed and dialysis will start. His level will be below 15% at that point. Normal kidney function is 60% or higher.
November 23, 2018
Latest News: James has a new doctor who is watching him closely. His GFR levels are sinking so we may need this fund sooner than we thought. This Tuesday, November 27th, HelpHopeLive will cover the credit card fees so your entire donation will go to his fund! Please plan to help!
August 3, 2016
We got news a few months ago that James' levels have dropped. He has stabilized and for now is being closely watched. He is now right on the brink of Stage 4 kidney failure. We have a long ways to go raising money before the day comes when he needs a transplant. It looks like that date has been moved up. Any help or fund raising ideas would be wonderful.
Thanks for your support!
September 29, 2015
Thanks to Tom James for donating his talent and to Jane Byrnes for hosting a concert on Friday, October 16th starting at 7 pm. Please go to the Facebook event page to register and get the number to call for the address:
https://www.facebook.com/events/1505032923152478/
September 7, 2015
Total donation from Mooyah for burgers, shakes and fries sold: $100. Store owner Anthony Powell also had us put a donation jar by the cash register and we got another $42 donated there. Thank you all for coming!
September 2, 2015
Thank you to all who are donating! We do appreciate all the help!
The fund raiser at Mooyah on Sunday had a lot of burgers sold! I do not have the total yet but will post it when we know. I also got a promise from owner Anthony Powell to give a personal donation. Nice guy!
August 12, 2015
To qualify for a transplant you have to be proven to otherwise be healthy. The best candidates for kidney transplants are those who are well and no on dialysis. One of these many tests was done last week.
James saw the cardiologist and had a stress echo-cardiogram done and passed! We knew his heart was healthy even if his kidneys aren't. There will be more meetings and testing done. As the process continues we will need your help.
James' insurance only pays for 20% of all testing. We may need to draw on this fund to pay for it all. Please share this page and help if you can.
July 27, 2015
James saw his nephrologist (kidney doctor) on July 20, 2015. Doctor says he is stable for now but still wants to see him every 3 months. Told him to continue with the transplant efforts and had a long discussion with James and his wife Lori about kidney function levels and how soon a transplant will be required.
July 20, 2015
SAVE THE DATE
We have a fund raiser planned in Wichita! Please come hungry and have a meal with us. A percentage of the proceeds will go to HelpHOPELive in honor of James. The more they sell the higher the percentage!
Sunday, August 30th, 4:30 - 7:30 pm
Mooyah Burgers & Fries
352 S. West St, across from Star Lumber, Wichita,KS
https://www.facebook.com/events/1607634069512350/
