Wednesday, April 17, 2013

Our First Week at Home

Hello Everyone!

Today marks a week of being at home! I sure don't feel like I've been home for a week, rather tired actually... but then again, so is Tom. It's been a week full of a lot of balance in the sense of for every good thing there seemed to be a trade off.  For example, Tom's counts were doing so well, but the list of ailments he's encountered in just the last seven days is quite astonishing.

Speaking of counts, I find that I'm often rejoicing or sharing the current standings of them, but perhaps no one knows what they mean.  That said, brace yourselves as I'm about to elaborate.
The top number is the White Blood Cell (WBC) Count the column immediately after each named item shows the "normal" range for each item.  The third column shows his previous lab draws number and the farthest right column shows the most recent (current day's) lab numbers.  So, white blood cells, if you remember from previous blogs Tom was at 0.0 for a few days while in the hospital.  This sheet shows him at 8.0 on April 14th. 
When I refer to Tom being "neutropenic" it means that his WBC is less than 2.0.  To paint the picture a bit more, the amount of chemo Tom had done between July and his transplant time, took such a toll that when he first started chemo in July he would bounce back out of neutropenia and into "normal" numbers in a matter of a couple of weeks.  Since probably November, Tom has not been in the "normal" range at all.  Definitely since December onward he was considered neutropenic.  Now, usually they will give shots called "neupogen" to stimulate the production of white blood cells for normal chemo patients.  They do not do this for bone marrow transplant patients however, because they want to see your marrow responding on it's own by producing the new persons cells without intervention... this displays engraftment which means the new persons cells are taking.  So, to say that Tom has been less than 2.0 for a matter of months and then after having a transplant he was up at 8.0 without intervention (such as neupogen shots) is seriously remarkable. 
The kicker with these numbers:  Yes, it is completely amazing to see such a come back and the doctor says that Tom's own marrow was so shot from all of the chemo that there is no way that the cells being reproduced are that of his own which shows engraftment of the other guy's cells... but now we must be careful on a different level.  Before we would have to take "neutropenic precautions" which meant that when Tom's numbers were simply low (below 2.0 wbc) he would need to use a mask, not be around young children, no sick people, and avoid certain foods. Now Tom is not neutropenic but he is immune-compromised. This means that while he has "normal numbers" those white blood cells aren't like yours or mine.  His cells are comparable to a new born baby's, but even more susceptible because a new born baby at least carries mom's immunity for a given period of time. 
Tom's white blood cells have absolutely zero built up immunity or immunization related immunity. To boot, his anti-rejection meds work because they too are an immune-suppressant to keep his old system from attacking the new cells. This means that he is susceptible to anything and everything as his body will not have any recognition.  Things like chickenpox, mumps, rubella, pneumonia, flu, etc... total possible killers now.  His cells are not mature enough to receive vaccinations and vaccinations will not begin until 12 months post transplant. 
What does this mean? Well, for starters, Tom is not allowed around children (sorry all of you new mommies and daddies!).  For patients who do have children it is recommended they pull them out of school for the year to minimize carrier-contamination and for those without, they're told to avoid them.  He will not be allowed around anyone who has recently been sick or immunized for anything within 5 days.  He is to avoid large crowds and be cautious in what he eats (ie. freshly prepared food rather than heat lamped Mc Donalds).  Izzy is also having to keep her distance and Tom to be washing his hands after any contact with her.
So there's that. He is under constant watch for risk of infection... so while the numbers are great, they aren't the only factor into his immunity.  In a year he will begin to be immunized and will eventually be good to go again, though he will never have the immune system he once did as his new immune system will always be someone else's and not 100% compatible so to speak. That's the white blood cell count everyone! The rest is pretty straight forward.
Second, they look at his "hemoglobin" which is just regular old red blood.  They want his body to be producing it on it's own and so far it has! They give him blood transfusions when he reaches 8.5 or lower and he has not needed one since before leaving the hospital! He also has not quite made it to the "normal" range yet, but he's getting pretty close!
Platelets: the clotting factor.  These are definitely important though they don't actually do a transfusion unless he's at 20 or lower.  So a much lower transfusion level comparatively, but still a very important thing to factor in because it can put him at risk for internal bleeding, bruising, or general bleeding if he were to cut himself and not have enough platelets to clot.
Lastly, they monitor potassium levels (which they just adjust with pills) and magnesium (which they will do an IV infusion).  These levels (especially magnesium) will frequently be low because not only will chemo cause that (and he's still dealing with after effects of chemo), but also the gen-graf (his anti-rejection meds) tend to burn up the magnesium.  So currently Tom has been receiving a bag of magnesium daily.
So there's your tutorial everyone! You're all professionals now and when someone else mentions it you'll totally know what they're talking about!
How's Tom? warning, this next bit is a little detailed ... if queasy... don't read!
Tom is happy to be home, but as I said... it's been one rough week.  First we had the general issue of him being nocturnal from the hospital and the overnight interruptions.  He came home with some remnants of strep throat and when he would cough it would sometimes cause him to vomit randomly having had no preemptive nausea.  The day after coming home he started with dry eyes (dry eyes and skin are normal, but he hadn't experienced them in the hospital)... his eyes were so incredibly dry that he was having to use the drops something awful in frequency.  The skin all around his eyes was red and his eyes were so blood shot- honestly, it made you hurt looking at him.  If that wasn't enough, it began to go away and then he was super sick to his stomach and they thought he might have C. Diff (a bowel infection often caused by taking antibiotics... like he was for the strep throat), luckily that came back negative (as we actually know of a guy who just spent 1 1/2-2 months in the hospital with a really bad case of C. Diff and colitis). So that went away, but Tom was still vomiting without warning.  We finally think we may have got a hold on that via medications around the clock as he's been vomit free for 48 hours now. Hooray!  However, he may possibly now have a virus of the bladder! Results will hopefully be back in tomorrow.  So he's in extreme discomfort. Seriously, look at this overly long paragraph and all of this was in the last seven days!!!!
So, long nights... tiring days. That said, it's time I go give him his last round of meds for the day and hit the hay myself. Sadly, Helen left today.  This last week that we had time to spend at home with her went by way too quickly.  On a brighter note, her brother will be arriving late Tuesday night to take her place for a few weeks!
Sorry for the long blog, but as the counts are constantly mentioned, I thought people may want to know what the heck I'm talking about!  Also, there's just so much we're finding out now that it really is just a new beginning with new challenges... it didn't all end on March 22nd (and thank God for that!), but rather a new start. Tomorrow we meet with Dr. Carroll, keep you all posted so these things aren't so long!
Lastly, I tell everyone about our ducks that live around the lake at our new apartments.  The two we are most fond of we call "Mr. & Mrs." as they are two younger ducks and are always together!  They waddle along quacking in what I imagine is duck conversation... Mister is quite chatty!  Misses is a lady of few quacks.  Today, just before we had to take Helen to the airport, they paid a visit to our porch for a bit and I was able to snap some photos!  Later this evening they came back by too and were clearly looking for some snacks. Just to put a little smile on your face :)
Good Night!!!!

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