Its July 13th, Terri’s Birthday…. yea!!! So we are taking it easy, she is sitting on the couch and doing her own thing, The rest of us are making her life a little easier.

We traveled to St. Louis on Wednesday, July 11th to see NP Stephanie, and get the IV-IG treatment. During the last “bug”, I dropped 10 lbs, so we are working on that now so I can gain back my strength. Remember before I got hit with the BK virus and the last bug I was walking 2 miles a day and gaining strength. During those 3+ weeks I was barely able to leave the bedroom and that set me back. It was almost like getting out of the hospital after the transplant. But I’m taking it slow, walking around our cul-de-sac with Caitie each day and building up strength.

I'm a Virus _Argh!

I’m a Virus -Argh!

It appears to Terri and me that the second bug might have been my body finally taking on the BK virus and has kicked its butt. I have had no pain since and am off the pain meds. I’s sure its still lurking around, because it never goes away, it just goes dormant until something else triggers an outbreak. It can go dormant forever, it was not fun. NP Stephanie and I looked over my lab reports… I read each one so I can ask questions and research what each means. Its my life and I take an active role in my care. Anyway, I noticed that my CMV lab came back positive. They have been checking it since I got my transplant. Why? I was CMV negative, but my donor was CMV positive. There is a 30% chance of transfer from donor to host. Its just barely detectible so we caught it early! And that is a very good thing.

CMV, or Cytomegalovirus (an overview from the CDC), is a group of viruses that is part of the herpesvirus family, that you probably have had. 50 – 85% of the population has it. You get sick, and then it goes dormant ( just like the BK virus). In immunosuppressed transplant patients it is quite serious. It can affect many organs of the body, but primarily the lungs and gut. If you get pneumonia from it, there is a high mortality rate, the gut not so much. I’m not worried. We caught it early, and the Med team is doing something about it now! For starters, we dropped my Prednisone to 30mg/day to let my donor’s immune system help fight it off. We have to be careful though, so my GVHD does not come raging back. But we have been decreasing the dosage of the Prednisone for a three weeks now and so far so good.

The IV-IG treatment I got on Wednesday should also help. It does many things and is a treatment they sometimes give to patients fighting CMV. So that works in my favor as well. I truly believe that going with the flow works. If I had my IV-IG treatment 6 weeks ago, when I “should” have, it would not have helped to fight this virus off. Now it has a chance to.

Lastly, on Friday I received my first IV dose of an anti-viral med called Ganiciclovir. We are really happy that we were able to get the IV form. They have a new pill form, but the co-pay alone is $1000!!! Getting it in IV treatment gets sent straight to insurance. So instead, my local doctor was able to give it to me in the treatment room, they like to give you a new drug in clinic or a hospital just in case of an allergic reaction… safe policy… I don’t mind. The kicker is that they are sending out a nurse to my house today to administer it. She will teach Terri and I how to infuse the drug through my “central line”, so we can do it ourselves. The nurse will come out for the first few days to “train” us.

I don’t know if they will send out the same nurse every time, but the first one’s name is Kathy, she seemed pleasant on the phone and is coming around 2pm today (its Saturday) to administer the second dose. I get a total of 21 doses over the next three weeks. The nurse will come back every 3 days to draw blood and send it to the hospital so they can check on the status of the virus and my kidney function. Of course there is always a side affect to drugs. This one damages the kidneys. I already have a problem with them, so monitoring is going to be very important. I’m drinking a lot of water, so that should help flush the toxins out of my kidneys.

From what I have read, and this is from research journals, the Ganiciclovir does not kill the virus, but controls it in order to give your immune system time to build up killer T-cells to build up antibodies to fight it off. If all goes well, the CMV virus will go dormant, and they will monitor it for another year or two to make sure it does not come back, or until I’m off immunpsuppressing drugs.

All of the past four weeks of infections and drama is normal for transplant patients. I just got lucky and had my first ~90 days free of “illnesses”. Most transplant patients get hit sooner and it is spread out more. I got hit late and one after another.

We are on track with the treatment plan, which is to slowly lower my Prednisone and then wean me off immunpsuppressing drugs while making sure my GVHD is under control and does not come back. That is going to take time. And there will be more rocks in the river (switching to the new metaphor) to navigate around. Bottom-line: I’m back to going with the flow.

Going with the flow.

Going with the flow.

Huli pau!

~ Mark and Terri

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Even this beautiful flowing river has some “bumps” in it

This begins as a story and ends with what is going on and my treatment plan.

The Story

Day 115 (June 30th, in other words), life started off as a beautiful summer morning. I know because I woke up at 6am like everyday. I took pre-breakfast morning meds, and kicked back on my “lazy chair” to read. Got up at 6:45 to eat my breakfast protein bar (all natural and organic – see you can get those, they don’t have to be processed now, but that is another story). Grabbed a glass of OJ and took my morning meds that have to be taken with food. By then I was tired, usual for me and went back to bed.

Well, 9:30am rolls around and I wake up groggy, there is chaos racing through the house, because Terri is taking the kids south so they can hang out at the lake until July 4th, when we would all get back together again for my favorite holiday (I think I have infected Caitie and Kai with that same love). Anyway… by 9:45 I wake up enough to know I not just groggy, and have a low grade fever. I, of course, tell Terri and to go drop them off (the Loibl grandparents meet us half way, so its only a 1 and 1/2 hour drive each way, plus they have lunch together). Terri is feeling reluctant… I say its only 99.5, it will take hours before it gets high enough, if it even does, to get to 101 degrees, which is DO something immediately on the Orange Emergency Instructions colored card. Thank God, Terri is smarter than me and puts contact numbers in my cell phone to call if I need them while she is gone, and walks me though them so I know where they are. Off they go!

It’s a half hour after I took my first temp (99.5) and 10:30,  my temp climbed to 100.3. OK… still no big deal. At 11am its 101.2 and the bells on the Orange card go off. You are drilled not to medicate to “mask” the fever by the nurses during the first 30 days in the hospital. So that meant calling the BMT (Bone Marrow Transplant) Fellow at Siteman for directions on what to do. As you know we live 2 hours from St. Louis. After the last trip (also on a sunday, odd coincidence there), they tell you to go to the local emergency room (ER). We did this two weeks earlier, so I know what I should do. It usually takes them a half hour to call back, but I’m alone, and waiting as my temperature spikes; that does not seem like I good idea. I call Terri and tell her what is going on, but to keep going. In my mind, ERs take forever to get through (although, they do rush me in quickly now these days).

So I start on my list of people to call, and Gwen is at the top of the list (who came to our rescue the last time) to drive me to the ER. She is looking after her son and his friend, and ASKS me if she can bring them along. Hell ya, I say. Gwen shows up 15 minutes later without kids – she made arrangements that quickly – and was was at my door. Good thing too, cus I’m starting to not think clearly. Gwen helps me find everything I need to go to the ER and off we go. The BMT Fellow has yet to call back, its well over 1/2 hour, but I’m at the ER. My fever in the ER is 102+. Side note: You can’t make cell phone calls from the ER at Boone Hospital, you get no signal. Bless Gwen, she stayed with me the whole time until Terri arrived! Thank you Gwen from all of my heart.

They run a bunch of tests, chest x-ray, and the oncology doc comes down to talk. I have no idea what actually got said, but made it clear I had to talk to the BMT Fellow to do what was next. Gwen made a couple of calls outside(to get a signal) for me and its 2 hours since I called into Siteman to talk to the BMT Fellow. The oncology doc comes back and asks if I want to be admitted or transferred by ambulance to Siteman. No idea why, but I said, just admit me. Not long after I have a room and and am resting in bed. They begin to stabilize me – IV fluids and antibiotics. Terri arrives and I feel safe. The rest of the day is a blur. Except that I have an appointment to see My Doc tomorrow (Monday) and I have to get there, no ifs, ands, or buts about it. Terri and I are adamant about this to the nurse. By evening I feel back to normal. No fever.

The next morning at 7:30 Dr. R, my oncologist in town comes in and I tell him about my appointments with My Doc today (Monday, July 1st) and I want discharged ASAP so I can make that appointment. Illnesses do wacky things to your blood counts and my hemoglobin is at 7.9, where it should be around 13 and I need a blood transfusion. Well that complicates things. He is an excellent oncologist, but he is not a transplant doc, so he consults with Siteman and gives Terri the OK to take me there, but to drive like I’m an egg and not break me. That will be easy, Terri drives very safely, unlike me (unless I have the kids).

We come home and pack up like we are going back to the hospital for couple of days, just in case, and off we go to St. Louis.  We get there early, because that is what the BMT Fellow told Dr. R for us to do. After all, if something should happen I’d be there and not somewhere else. We wait around to do labs (2 hours); when you have an appointment they stick to it, plus it was busy. We had our iPads, so we had plenty to keep us from getting bored. Next appointment… to see My Doc.

Part Story, Part Treatment Plan

I’m an informed patient, I do my research (yes all internet, but only from government or university sites and I read research papers. I like to know what is going on, it’s my body and life we are talking about). But through the many appointments I have had, I always have a list of questions and don’t leave until I have all my questions answered. Unfortunately, I usually take the lead, because I have this list of questions. Not this time. I tell him we both have a set of priorities about what I should know and I want to hear what he has to say before I ask any questions. And I listened.

From the biopsy results, I’m 99% donor, which is really great to hear. On another test, called the FISH (fluorescence in situ hybridization), says I still have some chromosome 7 cells lurking about. Those are the really bad ones that turn into AML. But he doesn’t know if this is a concern yet, because they are barely showing up (0.5) and the high of normal range is 1.37; I am still unclear what that means, except that we need to just wait and see. Because right now there is not a thing we can do about it. He is concerned about my platelet count, and that my red cell count changing (possibly reacting) the way it did when I just got sick with the fever. But again he says its a case where we are just going to have to wait it out and see what happens. My GVHD is under control with the meds I am taking, but that leaves me without an immune system. We have to begin reducing the meds to see how the GVHD is progressing and if my gut and liver will play nice with my donor cells. He has answered half of my questions. Terri asks some clarifying questions as do I and we wait until he is finished.

I do ask all my questions, replacing the ones he answered with clarifying ones. We talk about the BK virus and IV-IG treatment, and I just have to deal with the BK virus until it clears up and he does not want to put me on anything yet. He wants to reduce my meds and see what happens for a bit and then take the best course of action. He talked about getting more cells from the donor to help infuse with what I already have. But that was a couple of months down the road. AND That is basically it. He left and gave NP Stephanie some directions to follow up with us, since we will see her next week. She ordered some labs, so I had to go back to draw more blood samples and said I would also be getting the IV-IG treatment that day (next Wednesday). We had thought he said he was going to wait on that and questioned her if she was right, but she said he just told her to go ahead and do it. So there you have it.

(terri: After that, it was over to treatment to get two bags of blood which took over 3 hours to infuse. When was all said and done, we didn’t leave St. Louis until 9:30. Then the two hour ride home. So, yep, a long day. Actually a long couple of days. You would think we would get used to this… but, nope. But we take each thing as it comes and deal with it.)

The treatment plan is to slowly reduce my immuno-suppressing drugs (Prednisone) and see what happens. We can always bring them back up, if the GVHD gets bad. And to see what the IV-IG treatment does. And wait to see what happens. But it looks like I am going to see him every two weeks and NP Stephanie every two weeks trading off for the next month or two. (So going to St. Louis every week) This is a pain in the butt, and at the same time reassuring because they are really looking after me. I  can read between the lines, its going to be a bumpy road for a while. It’s not the path we had hoped for. But the forks in the path I am on will lead me to health and wellness. For that I am sure.

~ Mark & Terri