JON

Jon has been very sick. He has been in the hospital for several days. This post just talks about what is going on with him. It is VERY long, it has several months of information. I am doing this post to answer questions as to what is going on, rather than repeat over and over and not give full information every time I talk to someone. Although, we still do not know exactly what is going on, we are getting there.

March 2011- Jon was complaining about joint pain and he started developing a rash on his face. We set him up an appointment to go to the Dr. The Dr. said it sounded like Osteoarthritis as far as the joint pain, and that he had eczema on his face that was infected. So he prescribed a medication for the osteoarthritis and an antibiotic and a cream for his face.


Approximately a week later he noticed that his legs and ankle area were very swollen. He went back to the Dr. The doc said that he had most likely had a reaction to one of the medications so he discontinued both medicines and was prescribed prednisone to counteract the other medications.

After 9 days of taking the prednisone the swelling had not gone down at all, and in fact had gotten worse. So he went back in and was prescribed a water pill to get the swelling to go down.

Two weeks later, the swelling still had not gone down. I (Holly) ran the Ogden Half marathon and got a foot injury (plantar fasciitis); I went in to see Dr. Beus, a different Dr than Jon had been seeing. While there, I began explaining what was going on with Jon. He said he wanted him to come in and wanted to run blood work. The next day (Thursday, May 26th), Jon went in to have blood work run. The following day, Dr. Beus called back and said he was severely anemic. His hemoglobin was at a 10 (should be 14-18), his platelets were 115 (should be over 150), and his white blood cells were low as well. As well as a few other issues. Dr. Beus said he wanted him to come back in a few days and re-run the tests.

Jon went back to be re-tested (Tuesday, May 31st). The next day the Dr called back and said the levels had dropped even lower. The hemoglobin was at a 9.6, the platelets were at 111, and the white blood cells had also dropped. He said he had scheduled an appointment with a hematologist, Dr. Stinnett. We went in to meet with Dr. Stinnett (Friday, June 3rd). He said that all the symptoms weren’t adding up. He was showing partial signs of leukemia, kidney problems, lymphoma, and autoimmune diseases.

Dr. Stinnett said he would need to start narrowing things down starting with a bone marrow biopsy. He did the bone marrow biopsy on the spot. They numb the skin, but obviously they can’t numb the bone. They go in with a thick needle and suck marrow out of the bone and then they also took two bone cores out to be tested. Jon got a call that evening saying the bone marrow came back clean and he didn’t have leukemia, but they were still testing the bone core. A few days later Jon got a call saying his potassium levels spiked and they needed more blood to check those.

His potassium levels were still high, so they told him to drink lots of fluids and he would need to go back the following week to be retested. In the meantime, they got the core samples back and they came back clean. So they scheduled him to meet with a kidney specialist, Dr. McDonald, and also said they wanted a chest x-ray, so we went to Davis Hospital to get the chest x-ray. The following day (Thursday, June 9th) we went to meet with Dr. McDonald and he said that all Jon’s symptoms were screaming Lupus. But they would need to do a kidney biopsy to know for sure what was going on.

They got us scheduled immediately for a kidney biopsy (Thursday June, 9th at around 2:30) and sent us immediately to Ogden Regional Hospital for the procedure, they also wanted a ct scan on his chest because there was something on his right lung. He went in to have the CT scan and biopsy done. The CT scan showed that the thing in his lung was just a calcium deposit and it was nothing to worry about. When they finished the biopsy, they went to put him into the wheelchair and he had an extreme surge of pain. The Dr, Dr Parr, said the kidney was bleeding internally and had Jon lay back down and had to put pressure on the kidney for the bleeding to stop. Jon said the pain was 4 times worse than the bone marrow biopsy; he started screaming and throwing up. The pain was excruciating. They brought him back to the room and he had a fever and was shaking uncontrollably trying to get warm. Originally, when they said he would need to have the biopsy, they told us we would stay for 4 to 6 hours just so they could monitor him. Because of the internal bleeding, they said he would need to stay overnight so they could monitor him, the bleeding did stop. They also gave him platelets and liquid iron and IV fluids. By 4:30 pm the next day we were still in the hospital waiting for any answers. While all of our loved ones are also stuck worrying.

Finally that evening (Friday, June 10th) the on-call kidney Dr came to talk to us. He didn’t give us much information; he basically just repeated exactly what he told us the night before, which was discussing the bleeding and levels. They told us they wouldn’t have the results from the biopsy until Monday, but Jon would probably get to go home in the morning. They discontinued his fluid, which was a good thing; I don’t think his body had any more room for fluids. His fever was also down and hemoglobin was very slowly increasing (which had dropped to 7.1 and was up to 7.4).

Sorry, the format will change here; these are emails I began sending to family members to keep them posted:

Saturday June 11th: Semi-bad news this morning. Jon’s potassium has gone way up again. They need to give him a medication to try to get it to go down. If it doesn't go down, he doesn't get to go home. Of course, we want them to take care of things as well. He hasn't been doing too well this morning. He has been feeling nauseated all morning. He has thrown up a few times. He also has a fever again.They are going to give him an anti-nausea medicine. We will keep you all posted.

Saturday afternoon June 11th: The on call kidney Dr (Dr. Mian) just came in to talk to us (Dr. McDonald is his actual kidney Dr). He is going to give Jon another dose of anti-nausea medicine (his nausea is not improving). Also, they gave him a medication last night to help him lose fluids, however, nothing happened and the swelling is actually worse today. So the Dr is also going to give him a high dose of that medicine to help him release fluids from his body. He is also getting his fever back which was gone last night. The hemoglobin levels have not gone up at all, but they haven't gone down either. They are going to do another blood test in a while to see if the potassium dropped.

** After I wrote the above, before I sent it, right after Jon had thrown up a ton, Dr Mian came back in. He is going to begin treatment. Jon will NOT be going home until at least Monday. The treatment begins with three days of steroid shots and then after that he begins an oral medication most likely for life. It is definitely a kidney problem; the steroids are used to treat that. But, the biopsy results are still unknown; he said they would definitely do the steroids for the kidney problem and then add another medication for whatever else is going on, whether it is Lupus or something else, like FSGS. When they get the results they will add whatever medication they need to add to the steroid treatment.

Sunday, June 12th: Jon is doing much better this morning. He has very little nausea. The rash on his face is going away. He is still swollen, but that is going down as well (this morning we discovered that he actually does have ankles---crazy!) He also is able to eat, he has just eaten a few bites the past few days, but this morning he ate his full breakfast! His potassium has also dropped quite a bit-- still not in a normal range, but it is lower. We aren't sure about his blood counts, I am sure they aren't going down because they would have told us if they had dropped more. This is all very encouraging that the steroids are already beginning to work. Yesterday was not a good day, but we can tell today will be great! I am getting small glimpses of the real Jon!

Sunday afternoon June 12th: Jon is still doing well, however, by 10:00 the swelling was back. The Dr. who performed the biopsy wants Jon to have a transfusion, but his kidney Dr said since he's so young, he thinks they can do other things to raise his levels. The nurse just came in with a whole list of medications he will be getting. He will get more liquid iron, they also gave him a blood pressure pill, and a pill to help his stomach, and they are also giving him a shot called procrit. Procrit is what they give cancer patients to increase the bone marrow production of blood cells. They also give it to kidney patients. He will be getting his second round of steroids in about half an hour. But for the most part, he is still doing far better than he was yesterday.

We will post things as we hear them. Thank you everyone!