David Johanneck David N. Johanneck

First post: Mar 21, 2018 Latest post: Aug 10, 2019
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On November 30, 2017, Dave went to his routine check-up in Springfield, MN. He had been going in about every 6 months since the fall of 2014 when he developed a deep vein thrombosis (DVT) or blood clot in his left calf. This visit was going to be different.

Dave had new concerns he wanted to address with the doctor: weight loss, and fatigue. He began a diet in the early part of 2016 and it had gone as expected at first. However, in July of 2017 he remarked to his wife (Sue) that he couldn’t figure out why he was so fatigued even after losing 40 lbs. After a trip to New York in late Sept – Oct 2017, he came down with bronchitis and had a difficult time fighting it off.  He was also taking several naps a day and sleeping through the night, which was unusual for him. The weight was still dropping effortlessly and his appetite had decreased dramatically.

At his November 30 appointment Dr. White informed him his blood work was abnormal and his spleen was enlarged. His red blood cells (RBCs), white blood cells (WBCs), and platelets were all low. At those levels they indicate, almost definitively, cancer. The thinking was that some kind of leukemia or lymphoma had developed. His RBCs were so low in fact, that he needed a transfusion.

On Friday, December 1, he went back to Springfield for an outpatient blood transfusion. Just before they began the transfusion, it was discovered he had a temperature. With his WBCs so low, infection could be deadly, so he was admitted to the hospital and kept there until he could leave for his hematology/oncology appointment in Rochester. He received intravenous antibiotics and a blood transfusion and by Monday the infection was under control and he was discharged.

His appointment on December 5th at Mayo Clinic in Rochester was for a bone marrow biopsy and other blood tests. We didn’t receive any results of the tests, so Dave and Sue had to make another trip on December 7th. Unfortunately, they still had no diagnosis. The medical team had ruled out leukemia and lymphoma and various other fairly common conditions, but they were going to need more time to make a definitive diagnosis.

Dave finally received his diagnosis of Primary Myelofibrosis on December 12, 2017. Myelofibrosis is a rare bone marrow cancer that causes the stem cells that would normally create functioning blood cells to create scar tissue instead. This is why his RBCs, WBCs, and platelets were all low.

In addition to this unfortunate diagnosis, the hematologist/oncologist, Dr. Ashrani, informed him that he is considered to be in an advanced stage of the disease putting him at high risk of developing secondary cancers such as acute leukemia. This is because Myelofibrosis is usually a slowly progressing disease, but Dave’s condition seemed to be advancing at a rapid rate. Only a year prior his blood counts were completely normal. People within this high risk category have a 50% chance of surviving 1.5 years after diagnosis.

Dr. Ashrani gave Dave options for medication to help relieve his symptoms. Unfortunately, there is no medication to treat the disease. The medication can help increase his blood counts and improve his energy, but the disease will still progress and eventually the medication won’t be able to keep up with it.

There is only one option for a cure, a bone marrow transplant (also called a stem cell transplant). We were told that because of his age, he may not be considered a candidate for a transplant. The usual cut off is 70 yrs and he is 71.  Dave chose to start taking a mix of steroids to improve his symptoms, but also wanted more information about the transplant option, so he set up an appointment in January with a transplant doctor.

By Christmas Dave was feeling pretty good. His energy and appetite had increased and the color was back in his face. On January 5th he met with the transplant doctor, Dr. Shah. He was able to offer us some relief by telling us they don’t hold a patient’s age against them. The biggest challenges to receiving a transplant are funding (insurance will be covering most costs), finding a donor, and the health of the recipient. The most ideal donors are siblings as they have the closest genetics to the recipient. The doctors ruled out Dave’s siblings, though; due to other health concerns and age (they are all older than him and the ideal age for a donor is 18-45). Children of the recipient are also not considered unless there are no other options. This is because they already know the children are only a 50% genetic match. Dave’s best option would be to check the national and international registries of unrelated donors. Apparently, there is an 85% chance of finding only 1 matching donor. He will also have to pass a series of health tests to determine if he is in the best condition to take on the effects of the chemotherapy and the transplant.

Dave decided he wanted to be around as long as possible, and despite the risks involved with the transplant he wanted to move forward with the process. On Feb. 2nd he met with both Dr. Ashrani and Dr. Shah. Dr. Ashrani told him he was responding well to the medication. Dr. Shah also had some good news. Dave’s pool of donors was considered to be very strong. He had 10 good matches.

After all this good news, Dave and Sue decided to go out to Washington to visit their daughter, Janelle, in Seattle, and other relatives and friends along the way. It was a great trip and Dave felt great even while driving 3,000+ miles.  A few days after they returned, Dave noticed that he wasn’t feeling as well as he had been recently. He decided to go in to have his blood counted and found out his numbers had dropped again. On March 16th he went in to see Dr. Ashrani and take a multitude of health tests to determine his fitness for the transplant. Dr. Ashrani addressed the lowered blood counts and felt they were still in an acceptable range and recommended putting off the transplant and remaining on the medication. This course of action would not be treating the disease, however; and there is no guarantee of receiving the transplant at a later date due to possibly deteriorating health conditions. It has been a difficult few days for Dave to weigh his options, but he has remained confident in his decision to pursue the transplant.