Home Away From Home
Yesterday, on Day +14, Harvey was discharged from the hospital. This is a little sooner than we expected and sooner than most double cord mini-allo transplant patients are discharged. The reasons for early discharge:
- Robust and steady improvement in white blood cell counts
- No oral mucositis and ability to take all medications by oral pills
- No fevers
- No infections of any kind
- Strong support system at home
We are delighted to have him home. Harvey is just as happy to quit doing the infusion “pole dancing” and not be woken up every few hours for one more set of vital statistics. We brought home with us a grocery bag full of medications and a handy-dandy weekly pill organizer with dividers for four sets of medications each day. Actually, it sounds more intimidating than it is. Taking a little time to get things sorted out and organized makes all the difference.
As one of the prerequisites in getting Harvey weaned away from the 24 hour care of the transplant ward we went through an hour long training program on how to take care of his double lumen Hickman catheter. This is the surgically implanted catheter that allows direct access to his jugular vein. The Hickman was installed on Day -1 and it has made the whole process of drug administration much easier. Imagine nurses having to poke around to find yet another good vein for the dozens of intravenous medications that must be administered during the transplant process. Harvey needs to keep the catheter in place for quite a while longer. Now the need is not so much for iv antibiotics and the like – he gets them as oral pills now. But down the road he will be needing transfusions of red blood cells and platelets and that will make the Hickman very useful again.
Caring for the catheter is an important thing. Last thing you want is letting some infection set in there, with direct access to the patient’s heart and blood stream. Besides keeping it pristine clean, dry and free of infections, the other need is to keep it from getting clogged. Since blood has the built in capability of clotting, this means the catheter must be flushed with a heparin solution (anti-clotting material) each and every day. Clogged catheter is not a good thing. It may be possible to rescue it, but if that fails the usefulness of that particular catheter is finished and you may be looking at installation of another catheter. Who needs that hassle? While cleaning and heparin flushing of the catheter may sound a bit intimidating, it is actually quite simple provided people pay attention to the details.
For some days Harvey will be visiting the BMT outpatient clinic on a daily basis. They will be changing the dressing on his catheter at that time, doing the heparin flush, checking his blood work, giving him any transfusions that he may need. As of today, his WBC has inched up another notch to 1.6K. His hemoglobin is now at 8.4, still stubbornly higher than the hospital’s trigger point of 8.0 for a transfusion. However, for the past couple of days Harvey has been getting “classic” migraines, something he normally gets only once or twice a year. I asked the doctor we saw at the clinic whether the migraines could be due to reduced oxygen availability to the brain, on account of the low hemoglobin. He thought that was a novel but not unreasonable idea and therefore ordered red blood cell infusion for tomorrow, ahead of the weekend. Hey, you never get anything if you don’t ask. I am just as happy he is getting the red blood cell boost, I noticed his fatigue seems to be getting a little bit worse.
Here is another little detail about the blood transfusion that may be of interest to other patients going through the process. CMV (cytomegalovirus) is a nasty critter that stays in your body for the rest of your life if you have ever been exposed to it. Its reactivation during periods of deep immune function loss is a major risk factor for transplant patients (as well as patients undergoing garden variety chemotherapy).
Obviously, if both you and your donor are CMV seronegative, there is little chance of CMV reactivation since neither of you have ever been exposed to this particular virus. Cord blood is almost always seronegative for CMV. It therefore boils down to whether the patient has ever been exposed to CMV (seropositive) or not (seronegative). If both patient and donor are seronegative, it is important not to spoil that squeaky clean record by getting blood transfusions with CMV seropositive blood. At the transplant center they make sure they ask the blood bank to supply CMV seronegative blood for cord blood transplant patients who are seronegative to begin with.
That raised the question in my head, how do community hospitals treat patients requiring blood transfusions as a routine matter, say after their blood counts tank post chemotherapy treatment? Do they check to see if the patient is lucky enough to be CMV seronegative? And if that is the case, do they then make sure they keep the patient uncontaminated by giving him/her only CMV negative blood products? Something tells me this does not happen all the time. Do you know if you have been exposed to CMV? Do you know your CMV status? It might be worth knowing, especially if you are likely to need transfusions in the near future.