485942_4709598263181_2012131739_nTo take up right where we left off… I’m pretty much maxed out on Prednisone to control the GVHD, but the insurance has finally agreed to pay for the treatment of IV-IG three weeks late (we have scheduled that for the same day I get my bone marrow biopsy). And I said this level of Prednisone has harmful side effects. One of them being I am very susceptible to infection, because the Prednisone is an immunosuppressant, and even though my white cell count is in the normal range it can’t do anything to fight off disease. And that is exactly what happened…

On Friday, Day 91, I called my med team because something wasn’t right. Without going into extensive details, I have a bladder infection. As of that day, it was not painful yet, just annoying. Siteman calls my local doctor and off I go locally for labs and antibiotics. By Wednesday, it is painful and the oral antibiotics have not done a thing and I’m peeing blood and dehydrated. I called my med team in St. Louis again and make arrangements to see my local doc again. We switch over to IV antibiotics to knock down and hopefully kill the infection. I’m on pain meds for the first time since I left the hospital, so I definitely can’t drive. But on the positive side my platelet count is low, but “stable” bouncing around 30k.

Saturday evening changes all that. The pain has gone from bearable with pain meds (Oxycodone) to off the scale. Terri and the kids rush me to the emergency room. It takes two doses of Dilaudid just to get the pain under control and Terri made arrangements with Gwen and Steve to have a sleep over with their kids for the night, so the kids were not stuck in the ER all night. Thank you Gwen and Steve! Terri had already called Siteman ahead of the ER just to make sure that is where we should go, and yes going to the emergency room locally was what they wanted us to do. Boone Hospitatl (local, where we went) called Siteman to arrange a room and transport. I slept through most of the ambulance ride to St. Louis.

So I wake up not in my own bed on Father’s Day, but in a hospital room without my family and definitely not knowing what the hell is going on. I barely remember Saturday, and they say I am going to have some tests done… ha ha! Its Sunday, its Father’s Day, there is no one to look over my tests unless I have to go to surgery, so they opt to control the pain until Monday. I did see two doctors before 1pm, but they did not listen at all to what I had to say or answer any questions. One doctor said, and I quote “let’s cut to the chase”… this is what you are doing tomorrow despite that I have previously scheduled appointments with MY Doc, a bone marrow biopsy and a 4 hour IV-IG treatment. Yes, insurance finally approved that.

I fully understand that my bladder infection is serious, but the biopsy and IV-IG is just as, if not more important, than canceling those so they can take an ultrasound of my bladder. My platelet count dropped again to 21k. I most likely have a BK virus infection which is somewhat common in transplant patients and the most effective treatment is… To reduce the Prednisone, so my immune system kicks in to kill it off and flush my bladder with saline. Almost everyone has the BK virus, but it is activated when you go through chemotherapy. Isn’t that just peachy!

~ Mark

✣ ✣ ✣ ✣ ✣ ✣ ✣

Hi, It’s Terri. It is Monday morning. They just did an ultrasound of Mark’s abdomen and couldn’t find anything that could be the source of the pain. There is a small cyst on one of his kidneys, but they don’t think that is what is causing the pain. They couldn’t find any blockages. We won’t have the results of the test for the BK virus for a day or two. It is a culturing thing. The painkillers are making his brain fuzzy and he is unsteady on his feet. We are now waiting for the floor docs in the hospital to consult with his primary care doctors as to what the next steps should be, including can we do the IV-IG today inpatient, do we go ahead with the biopsy or hold of for a day or two, and can Mark actually talk to HIS doctor. Part of the problem with the biopsy is that Mark has to lay face down and be still for about 45 minutes and that is kinda tough right now with having painful urination every 15 minutes or so.

On Saturday night, thank goodness Gwen dropped everything to come pick up the kids when we were in the ER. I had no idea how long we were going to be there. There was no way they could see Daddy in that much pain, and I didn’t want them just sitting around the waiting room. When they transported Mark to St. Louis, I didn’t think I was up for driving to St. Louis at 11pm. So I just planned to head up in the morning. Mark wanted to see the kids, so I brought them with me and they brought their Father’s Day cards. My parents drove up to pick up the kids and take them back home so I could spend the night in St. Louis. Thanks Mom and Dad. I left the house in such a hurry it is in a very sorry state and nor really fit for company.

The  hotel I stayed at was nice enough, directly across the street from the hospital and gave a discount for people that had family as patients in the hospital. But there was no wi-fi! Can you believe it? It is amazing how used to our creature comforts we get. As usual, I have now hit the babble stage, because I am not sure what else to say. I am torn between staying here with Mark because he is in pain and we don’t know what is going on and he needs me, and going home to be with the kids because they need Mommy.

Bottom line: Mark is in severe pain unless hopped up on super-painkillers. They don’t know for sure what is causing it exactly or how to treat it. He has a UTI that is not responding to antibiotics. He should be able to get his IV-IG today. We don’t know if he will have his bone marrow biopsy today. His platelets continue to decline and there is not a definite answer why. The UTI and abdominal pain is likely the BK virus. The platelet drop is likely the Graft vs Host Disease. We are hoping to get some answers today and hoping the IV-IG treatment will deal with a lot of what is going on.

My head is starting to hurt and I left my ibuprofen at home. Time to go find the gift shop. More updates as they come…

7 Comments

  1. kathee zurian

    Hi Mark and Terri, Just read your blog post…I’m so so sorry you are going thru this pain. Please know that I think of you and your family all the time…and pray for your health! I wish there was more I could do from my end! Just saying my prayers! Luv to you all! xoxok

  2. Linda Senenfelder

    We are so sorry to hear about all that is going on. We send our prayers and positi e thoughts your way. God Bless You both

  3. Kathee and Linda,

    Yes, this is far from what we expected on Day 100, but it’s temporary and will soon pass. Sitting in this hospital has fortunately given me the perspective I need to see the forest again, and that this is really just a speed bump.

  4. Sunbeam Magic

    awh! so very sorry to hear of the Father Days hospital stay! Blessings and prayers that all is found and fixed pronto!! we pixie’s are very impatient! Healing Pixie dust sprinkled everywhere you go and exxtra helpings for your staff of physicians! HUGGLES