July 27, 2018
Yesterday marked 14 weeks that Pernell has been on the transplant list. We have had 1 dry run in that time. His transplant team has had offers, but they have not felt that they were a good match for him. When he was originally listed the average wait time was 4 weeks, since then the allocation process has been revised (larger region). This new process will need to be in place for a year or more for them to be able to calculate what the average new list time will be.
Pernell has lost weight and now has a 30" waist. He said that he hasn't been that small since he was in the 4th grade. He tires easily, his appetite isn't as large as it was, but he is continuing to remain positive.
We appreciate all of the positive messages, notes and cards, calls and donations that keep coming in. Please keep the prayers coming for him and our family. Need the prayer warriors to say extra prayers!
April 20, 2018
PR has been listed! Thank you so much for all the prayers and positive thoughts. Please continue the prayers for a perfect set of lungs. ❤
April 11, 2018
Last week on Tuesday and Wednesday Pernell had an Esophageal Manometry & 24 Hr pH monitoring test. The results for this test were not available on Monday when we met with one of the Thoracic Surgeons. We were told that results usually take a week or so. He also had blood drawn for an antibodies test.
Our meeting with one of the surgeons went well. He went over the procedure of getting listed, the process the surgeon goes through to check/secure the lungs, the lungs arriving at Northwestern and the actual surgery. He also reviewed all the risks and complications involved with this type of transplant. He also stated that 1 out of every 3 that are called to go to the hospital for transplant end up being a “dry run”. A “dry run” occurs because at the time when a patient is called to go to the hospital, the lung offer is preliminary to the Transplant Team. The team accepts the offer of the lungs with the understanding that final acceptance will depend on when the procurement surgeon arrives at the donor hospital and is able to view the lungs in person. If the lungs are turned down, we will return home. This will not impact Pernell’s place on the transplant list. There is no limit on how many dry runs a person can have.
Right now, according to his coordinator he is on hold until these last tests are reviewed, the recommendations are received from the GI specialist, and confirmation of insurance approval is received. They secure insurance approval prior to the meeting where they determine if he can be listed.
Pernell began with a cough Monday morning but is taking some medication that the transplant team recommended. Please keep the prayers coming so that the cough moves out of his body and that he can be listed soon.
March 26, 2018
Pernell spent 2 half days with the Allergy Specialist last week determining if he was still allergic to penicillin and if so, to what degree. Originally was scheduled to be one day of testing but was unable to get to a high enough dosage so they needed him to return the following day. Good news, the allergy to penicillin is no longer as serious as previously. That is wonderful news since penicillin is a drug that they would like to give to transplant patients. Due to 2 days of allergy testing his stem cell appointments have been rescheduled for this week. Stem Cell is most of the day. A blood draw, Stem Cell Team and Doctor appointments and then an infusion of IGIV for 4 hours. IGIV is a solution from human plasma that contains antibodies to help his body protect itself against infection. He receives this each month.
The Lung Transplant Team would like him to see a Gastrointestinal Specialist to evaluate him prior to transplant. The EGD that he had showed some esophagitis and they need to ensure that he is on the best treatment plan for this. We are waiting for confirmation as to when this appointment will take place.
That’s all for now. Feel free to sign the guestbook on the Hope Help Live site with a message. Please keep the positive thoughts and prayers coming!
March 17, 2018
PR had a few tests this week, a heart catheterization and an upper endoscopy. Next week will be a busy one. He will be having a test that determines his current lung function and a test that measures the oxygen and carbon dioxide levels in his blood. The 2nd test determines how well his lungs and kidneys are working. Along with the pre-transplant testing, he will also have his usual labs and appointments with his Stem Cell Transplant Team that he sees monthly. PR and I joke that we must have paid for a small portion of Northwestern over the years! Seems like there are only a few more appointments and then an important meeting with the Transplant Team and a Thoracic Surgeon. Once completed, hopefully he will be put on the list. Keep the prayers coming.
He says that he is ready for the transplant and can’t understand why they will not do it now. He is getting impatient. I think emotionally, physically and spiritually…now is the time for him. He has been sleeping quite a bit, gets tired very easily and breathing has become more difficult.
I’ll post an update when I have more information.
Thank you for all your support!
March 7, 2018
More tests and appointments with new doctors this week and next. He is a trooper with all that he is going through. One of the upcoming appointments is with an Allergist. He saw one back in 2012 prior to his Stem Cell Transplant. He needs to see one again since some of the medications that he is allergic to are the medications that he would receive after his lung transplant. They need to confirm if he is still allergic and to what degree. We are praying that he is no longer allergic to these meds or has grown out of the allergy. If he is still allergic, they will need to determine another combination of medications that he would be able to receive.
He does his breathing treatments at home, as needed. He also has begun exercising again. He is working on getting stronger for surgery. He has gained some weight, which is great. He needs to gain about 15 to 20 pounds according to the Dietitian at the hospital.
Thank you from the bottom of hearts for your generous donations and prayers.
February 27, 2018
Tuesday, February 27th, 2018
Pernell will be having a total of 7 tests/appointments between today and tomorrow at Northwestern. He still has many more to go prior to be put on the transplant list. Three times a week he is having Pulmonary Rehab at a local hospital. This is a requirement for the transplant.
Keep the positive thoughts and prayers coming!
February 19, 2018
I would like to introduce you to my husband Pernell Rion. On September 24, 2011, Pernell was diagnosed with Acute Myeloid Leukemia. We were happy that in February of 2012 they found a donor for him and he underwent a hematopoietic stem cell transplant. But his transplant was complicated by multiple infections and pneumonia, as well as the development of graft-versus-host disease of his skin, oral mucosa, and eyes. In June of 2015 he developed graft-versus-host disease of his lungs and was hospitalized for several weeks. His Pulmonary Team determined that he had developed Bronchiolitis Obliterans Syndrome of his lungs. The disease results in the damage of the small air passages of the lungs. Sadly, there is no cure.
His health has deteriorated greatly over the past two months. His Pulmonary Team decided to refer him to a Lung Transplant Team suggesting a bilateral (double) lung transplant. Without the transplant his life expectancy is one to two years. He has begun the testing for his transplant. If all goes well and he is approved, he will be added to the transplant list.
Pernell has gone through a great deal these past 6 and a half years, but he is a fighter and is determined to recover from his lung transplant and be able to spend many more years with our family.
