Home again

The CMV level did indeed fall below 600 so Elizabeth was discharged and is once again at home. Her main challenge now is recovering muscle strength and tone which hopefully will reduce and eventually eliminate the back pain. Now we start back on a rigorous series of outpatient visits starting with Lab work and a possible platelet transfusion Sunday morning at 8 AM. The doctors aren't quite sure why her platelet level continues to fall after each transfusion but have several theories. To test one they have tentatively scheduled another marrow biopsy for Thursday to see if the CMV has actually lodged in the marrow and is inhibiting platelet production.

A little longer

Sadly, the CMV level came back just above the magic 600 mark so they want to keep Elizabeth in the hospital to continue the double Foscarnet treatment for another few days until the next test on Thursday. We expect that this will mean that she will come home on Friday or (more likely) Saturday. Since there has been no resurgence of the GVHD -- her appetite and digestion have been fine -- they continue to taper the steroids and are terminating one drug (Enbrel) that she has been getting for 6 weeks.

We are coming to understand (at least I am) that the back problems are part of a larger syndrome of general muscle weakening brought on by the high-dose steroid treatments. The physical therapy people she has been seeing believe that the support muscles in the back have been so weakened that they don't support her back properly. Furthermore, she seems very weak all over and this is a standard result of steroid treatment. So the therapy is exercise to build the muscles back up. This will probably take a long time, but at least we have a direction. But it leaves her feeling much less well than she really is otherwise.

Some progress

The reason for this hospitalization was the surge in Elizabeth's CMV levels to over 9000 (whatever the units are). This is now being well-controlled with the drug Foscarnet; CMV levels were down to around 850 at last sampling on Thursday. She should be discharged when they get down to less than 600, which they regard as undetectable, and will continue on a reduced dose of IV Foscarnet at home. The steroids that were introduced to treat the GVHD are being steadily scaled back with no apparent ill effect. This will also help with the CMV control.

So in a sense all is well on the main front. But the back pain is continuing unabated and is really the main current problem. She finally got a CT scan of her back on Wednesday. This showed nothing terribly abnormal in the spine and provided not much in the way of suggestions for how to treat the problem. She gets very stiff and can barely walk. She is doing exercises to stretch and develop the muscles in the back, but it is so far not improving much. There seems not much more to do for the time being.

Hospital rules

A hospital can sometimes be a bizarre place. As you all know, one of Elizabeth's afflictions is quite debilitating lower back pain. At home her best remedy has been extensive use of an electric heating pad. Of course, we knew instinctively that we would not be permitted to bring such a device into the hospital -- that would be too simple. So immediately upon her arrival on the floor on Monday, E. asked for some source of heat for her back. On Tuesday there arrived in her room a machine about half the size of a large washing machine which works by circulating hot water through a pad. This was duly hooked up. There was some difficulty for the nurse to figure out how to program the machine, but eventually heat began flowing. However, it was soon decided that the pad was the wrong size and it was turned off to wait for a new pad. Then it was decided that the machine was the wrong one and a new one was ordered. Worse, the nurses and even the doctors ordered that this machine could not stay connected -- apparently there was a rule that a patient using this machine had to have vital signs (blood pressure, temperature) checked every 15 minutes to make sure that she was not being adversely affected by the machine. So no heat.

The supply unit then sent up an "new" machine -- identical to the first one! That was sent back and finally there arrived a much smaller machine -- about the size of a toaster. This also works by circulating hot water through the same pad. However, this didn't seem to provide much heat -- there was an adjustment for the temperature, but it needed a special key to adjust. It looked rather like a socket for an Allen wrench, so I took in a set of these, but before I arrived they found a technician who had the official key, and at this point it seems to be working fairly well. But what an effort for a simple thing.

Otherwise, things a proceeding according to plan, but we don't yet know how well the treatment is succeeding in controlling the CMV -- we may get a reading of those levels today. They are continuing to taper the steroid dose,which should also help. Meanwhile, except for the back pain, Elizabeth feels relatively well, although I think she does suffer simply from the large number of medications she is taking -- it's a really terrifying list.

Hospital Round Five

Elizabeth was admitted to the hospital again this evening. Her phone number is 734-936-8117. The proximate cause is a dramatic spike in her CMV (cytomegalo virus) level and the need to treat this more aggressively with higher levels of Foscarnet, which she had already been administering in IV at home for some time. The main reason for doing this in the hospital is so that they can monitor closely her electrolyte (magnesium, potassium, sodium) levels as well as kidney function, which can be depressed by Foscarnet. We are hoping that this can be controlled quickly to the point that she can continue treatment at home, but this is not clear for now.

It is often said of this (and other) diseases that the treatment is as bad as the disease. But the chain of effects we have been seeing is quite amazing. Consider the following analysis.

1. Leukemia develops and is treated with chemotherapy. This destroys the cancerous cells, but also the rest of the bone marrow and along with it its products: red cells, white cells and platelets. These losses require transfusions of red cells and platelets and antibiotics to replace the defensive action of the white cells.

2. A marrow transplant is the permanent solution to the marrow destruction. However, the new marrow sees the rest of the body and "foreign" and thus requires

3. treatment with immuno-suppressive agents, milder at first, but eventually steroids to suppress specific attacks. The new marrow pumps out all three types of cells, but the immuno-suppressants prevent the white cells from acting effectively (which they need to do) and thus permits other infective agents, such as CMV, which is present in most humans, to grow uncontrolled.

4. Anti-viral agents are then used to control the CMV, but these in turn have destructive effects as mentioned above on electrolytes and kidney function and also in suppressing the actual production of all three types of cells.

5. These effects must then be treated in various ways with direct IV administration of electrolytes; the kidney problems have yet to develop, so I don't know what that might entail.

So at this point we are monitoring and treating fifth-order side effects -- how far can this go?

Very positive overall with speed bumps

The very good news is that the 100-day marrow biopsy showed that Elizabeth's marrow is still 100 % donor and there are no detectable leukemic cells. That means, we think, that once she gets through the rigors of the treatment to ward off GVHD, she should have a good prognosis for the future.

Her gut is making a steady recovery with a much improved appetite and the ability to tolerate a steadily growing list of foods. She still has considerable edema from the steroids (which are still being administered at reduced doses). The worst current problem may or may not have much to do with everything else -- she is suffering from quite bad lower back pain, enough to make it hard for her to get around and impossible to get the exercise that she needs to strengthen her leg muscles. One theory is that this was brought on by a brief period just after the hospital stay when she was getting IV nutrition in a 1.5 liter bag that she had to carry around, together with a pump, in a backpack. But since it's a problem she has had before, it may also be coincidence that it is showing up now. She is continuing to get the ECP treatments twice a week, various shots, weekly clinic visits, other tests, and frequent blood draws -- we seem to have some sort of appointment every weekday (often including lengthy stays in waiting rooms) and sometimes more than one. It does occupy a good part of our time.