Clay has now been home for one week; it is amazing the progress that he has made. We were all a little nervous coming into the house, all our professional support was gone and it was now up to us to settle in and work out a new schedule for our lives. Our friend Opal took this photo in almost the same spot that I took of Clay as we were leaving for the hospital. He looks much better here. And much lighter! Not only is the portable oxygen tank gone, he also weighs about 25 lbs less.
We were sent home with a new medication regime of 20 different prescriptions a day for a total of 52 pills. Of which; 3 are anti-rejection, 3 anti-infection/anti-fungal, an anti-osteoporosis, a cholesterol reduction, a pill to lower heart rate/BP, another for blood clot prevention, some antacids, and various supplements and stool softners. The easiest way to keep track of them has been to just number the bottles. The anti-rejection dosages are going to change weekly as blood work is tracked for a month or two. We are told that the levels will settle down and changes will be less frequent; but we should always be prepared for med and/or dosage changes. He takes his medications only twice a day; morning and dinner time, which is nice since it means he isn't constantly looking at the clock to make sure he doesn't miss a timed med.
The entire transplant team at UWMC perform like a well oiled machine (usually! LOL). The pharmacist came in several times to go over the medication list, explaining what each medication is for, watching Clay and I load his gi-normous pill box, have us state again what each med does, how many he takes per day, etc. And gave us a sheet with photos of each medication so we know what to look for. Of course, the medication appearance may change depending on generics and manufacturer but it's a great help in the beginning.
We also have to take, and record, his vitals twice a day. Organ rejection begins in subtle ways that a person isn't going to feel - until it's probably too late to stop it. Which is why tracking these vital signs is so important to do twice a day.
First is his weight, and the only vital to be taken just once a day. We have been astounded that he actually started having a problem by loosing weight daily in the hospital. This went beyond just getting rid of fluids too. He is currently at 198 lbs, finally seems to actually holding there, at least for the last several days, whew! Who would ever have figured that Clay would have that problem? So watching his weight is an indicator that he might be retaining fluids which could settle into his lungs causing any number of issues.
Then twice daily we take his temperature to watch for any increases that could indicate the beginning of an infection. Then is the blood pressure and heart rate.
Finally, Clay has to use a micro spirometer that measures two things; how much forced air capacity he can exhale in 1 second, and also how much he expells altogether. This requires him to blow as forcefully as possible, and as long as possible, into a tube attached to a hand held meter box. He puts so much effort into this that his face turns bright red and I get a little nervous that he might faint dead away to the floor.
After watching him doing this several times I tried it myself, thinking of course, that I would be blowing much higher numbers than he does. Wrong! I wasn't even close! My face was certainly red but obviously not from the effort I had put into blowing! LOL. All his numbers are pretty consistent, however, we are still establishing his true baseline.
The first couple of nights at home neither of us slept well. Clay kept waking up in a panic, worried that he couldn't breath. Which woke me up each time to talk to him. By the 3rd or 4th night everything settled down and I can gladly announce we are sleeping through the nights now.
Another adjustment has been Clay's body getting used to the bombardment of medications. Suffice it to say that he is responding well as of today, his tremors are almost unnoticable, and many of the other scary side effects are gone. I will be blogging about our hospital experience later, covering how his body reacted to medications there, along with his reaction to having a new lung that I don't think any of us had anticipated.
Finally, Clay was told to walk, walk, and then walk some more in order to build his strength up. At discharge a week ago instructions were to walk three times a day for 5 minutes each time. From there he is to build up to 30 to 40 minutes a day within a month. Between the major surgery assault on his body there has also been a huge amount of steroids given to reduce rejection. Both of these have been zapping his strength and immediately taken energy from muscle mass. He has felt so weak and washed out that it has been difficult to muster the energy to do even the 5 minutes at a time. This picture was taken (again by our friend Opal) as we went for our 1st walk out on Alki Beach in quite a long time. Our conversation was no where near as serious as it appears in this photo however! When we got back to the house that day Clay felt more energy and focus than he had in some time. We went for another outside walk this past weekend in a nearby park but it wasn't as invigorating as Alki was. I tell myself that the fact that Opal and Bruce were no longer here visiting has absolutely nothing to do with it, but I'm not totally convinced. Clay had plenty of walking today also, none of it outside, and he again came back invigorated. Hmmmm, daughter Georgina was there with us today. Well, let's just say that if he has the same lack of energy after the next walk with me alone then I may have to speak to him as sternly as it looks above!
Received an email today from a friend of Clay's that brought up something I hadn't even thought about; Clay is getting very close to being able to take the trash out again! Hurrah!
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