Dear Family and Friends,
Today (July 12) is 3 months ago that Gary received his new Kidney and Pancreas. When one thinks about it, it's really not a long time, but yet, in other ways, it seems so long ago. We've kind of gotten into a "new" normal for us i.e. what is normal?
So often I find myself saying about our life and hear others say about their lives, "When will life be normal again?" What is Normal? For each of us, that is different. I looked up the word "Normal" on the on-line Merriam-Webster dictionary and there were quite a few different meanings. The meaning that I found to be most similar to what I think most of us are referring to when we ask "When will life be normal again?" is: "conforming to a type, standard, or regular pattern."
When I think about that definition, I guess our life is "normal" in that we seem to have "conformed to a regular pattern" in our life based on what Gary needs. Now I don't mean that in a bad way, but for us, right now, keeping Gary healthy is very important. Part of what that entails is making sure he takes his medication on time 4 times a day -- 9AM, 12PM, 5PM, and 9PM. Certain medications have to be taken 12 hours apart, particularly his anti rejection medication. Some of his medications he takes 4 times a day, some 3 times a day, some 2 times a day and some 1 time a day. When we came home from the hospital, one of the things they sent us home with was a very large pill container with 4 slots for each day. Right now (today), he takes 12 pills plus a packet of another medication at 9AM, 2 pills at noon, 1 pill plus a packet of medication at 5PM, and 12 pills at 9PM. We all have our cell phones set with these times as alarms so that we make sure that he takes his medications on time, so, if we happen to all be in the room at the same time when these alarms go off, it's quite a chorus or, if you happen to be with us somewhere and our alarm goes off, don't be surprised when we say something like -- "it's pill time for Dad" and depending who's home with him or if we've left him home by himself, I might call home to make sure he takes his medicine or that someone helps get it for him especially when he's lightheaded or shakey since I don't think any of us want to "refill the pillbox and make sure the right pills are in the right slot. :)
Although the number amount is the same at 9AM and 9PM, the kinds of pills are not all the same so when I fill his pill containers, I have to make sure I have the correct pills and the correct amount of each pill (one of them he takes 4 of in the am and 3 in the pm) in each pill slot. Thankfully, that is a challenge I can handle and don't mind handling. I have taken care of making sure our pill containers (yes, I also have to take a lot of medication for my health issues) are filled each week for many years already because even before the transplant, we both were on a lot of medications.
Years ago, I made a medication list on our computer that I try very hard to keep updated with RX #, Medication names, pill strength, alternate names (since sometimes they are referred to by a Brand name and sometimes by Generic), dosage instructions, when last filled and how many refills left until what date. Having it on the computer made it nice to be able to take it with to all of Gary's and my doctor appointments since most doctors want to know what medications you are on and this way it was easy for me to keep on top of it ourselves, but also was a good way to go over what medications we were on when we would go to the doctors.
Since Gary's transplant, I've had to change things a bit to keep my list for Gary similar to the way that the transplant clinic's list looks that they send home on each of our visits. Peter helped me to set up a new document, because as I mentioned in an earlier post, when Gary came out of the hospital, his medications were at several different pharmacies which caused me a lot of angst. On our new form we've also added what pharmacy the medication came from, how many pills I have left after I fill the pill containers, how many days does that equal to and how many pills of that particular kind does he take per day and then per week. This helps me know when I need to reorder pills so that we have refills on time, since not all of his medications are common medications and may have to be ordered.
Another thing in our now new "normal" life is making sure that Gary drinks enough fluid each day. Since both Gary and I have Sleep Apnea, and both of our machines require using distilled water, we tend to go through lots of distilled water bottles. Anyhow, since we were having trouble keeping track of how many of the special cups we've been using for Gary to drink from that we had filled each day, Peter one day took one of these empty distilled water bottles, measured water into it by 1/2 liters, and used a black permanent marker and marked lines on the bottle for each 1/2 liter so that there are measurements for 3 1/2 liters on the bottle. I try to make sure it is filled each night before I got to bed or if I don't get it done at night, first thing in the morning whomever gives him his first glass fills the bottle. As we give him a glass of Crystal Light (or any other generic type of Crystal Light) we measure from that amount of water from the bottle and either use that water to make him a glass full or measure the amount out before we pour from a pitcher that we might have ready in the refrigerator. This way, as the day goes on, we have an idea as to how much more he still needs to drink and how much we need to encourage him to drink more so that he can get his 3+ liters a day in. As time has gone on, he has gotten better at being able to drink the amount that he needs to drink.
When we go somewhere, we take a bagful of a variety of individual Crystal Light packets (or some generic kind) a long. At the beginning, I would make up a bunch of water bottle types of measured drinks along in my rolling back pack so that I would have it measured out and be able to know how much he had drunk. After having one of those bottles of "red" colored crystal light "spill" in my backpack and get all over things that of course I didn't want it to "hit" (isn't that always the way with red juice?), I decided I needed to find a new way to carry his drinks and keep them measured. I started carrying bagful of individual packets as well as several water bottles (not always near a drinking fountain or water cooler), and as I make a new bottle, I keep the empty packet so that when we're home again, I can know how much needs to be measured out of the measured jug at home. It has made keeping track of his fluid intake much easier.
The other thing is that each day we take his vitals -- temperature, blood sugar, and blood pressure and pulse rate both sitting and standing. We do this first thing in the morning. When he first came home, we did it 4 times a day and sometimes more often, but that has been coming down in numbers as time has gone on. If Gary runs a temperature, that is one sign that something is wrong and he could possibly be starting to reject his new Kidney and Pancreas. We are happy that since his last hospital stay in mid May, his temperature has been great. We usually take his blood sugar first thing in the morning before he eats so that we can have his fasting blood sugar. We have never seen his blood sugars so good and so consistent!!! If they weren't, it could be another form of his Pancreas rejecting and diabetes coming back. We take his blood pressures and pulse rate both sitting and standing because of the large difference between the two and because he is has problems with being dizzy and lightheaded. We have a chart from the Transplant Clinic that we keep track of these vitals and can write any comments that we feel should be added for example how he is feeling. Andrew has probably been my biggest helper with this especially if I have to be somewhere before Gary is up.
Do I (we)mind doing this? No, but it is time consuming. Sometimes I get frustrated feeling like I'm not doing anything but yet, there are a lot of things that I (and the rest of us) need to do to keep Gary healthy and it is worth it! :)
I know there's more to say, but will write another time. I had started this a week ago but am just finishing it today, and want to write a different post about our visit to the transplant clinic yesterday.
