Post-Transplant: Home Care Routine

(Unlike I previously indicated, I decided to limit this blog to just the home routine while healing. I decided it was best to keep the Kidney Clinic , doctor visits and tests on a separate entry, so be looking for that one next!)

Once home, I made the couch my new bed for the next two weeks. With the Ottoman in front of me, I was only comfortable 24/7. Sitting in a semi-recumbent position was perfect for me because it put less pressure on the scar, and allowed me to easily push the ottoman away whenever I needed to urinate...which was frequently, both day and night.

For the first couple of weeks the Transplant Team wanted me to keep track of both my fluid input and my urinary output. On average, my daily intake had to be at least 2.5 liters. The goal was to see output totals equaling 2.0 liters per day, or .50L short of my total input. The most difficult part of this was retraining my brain to stop sipping small amounts--you remember, what I had to do while I was on dialysis so I could better restrict my fluid intake for the past three and a half years; ever since my kidneys were removed--and begin actually drinking fluids again. I found that by using a straw via the hospital mug, I was having a difficult time reaching my intake goals day after day. The easy solution was to stop using the straw and mug and just start downing my fluids straight from a glass. This was a great decision for me because on my very first day of drinking fluids like this, I completed my daily goal before the afternoon was out.

With the increase of my fluids I was still getting up every 45 minutes to urinate, and each time having to be assisted up from the couch so as to keep from aggravating my new abdominal scar. Getting my bladder to increase in size was going to take time, and with the stent in my ureter (at the bladder), I was instructed to never try to 'hold' urination. When I felt I had to go, I just needed to get to the restroom. This would go on for the next three weeks after my return home.

For those of you who have had surgery, you know that one of the best things for any patient to do is get sleep...as much as possible. As a result (and due to the pain meds), I was getting a LOT of sleep...far more than I ever could at the hospital where any rest is seemingly interrupted on a constant basis. So, when I wasn't eating or taking my pain or daily meds, I was usually asleep. This went on for about two weeks. It was at this point that I finally moved to my bed for sleeping where I got better rest so that I didn't have to sleep all day and night.

Food was never an issue at home. My wife was attentive to all my needs and as I slowly improved, she gradually let me fix my food as I was able, but would also step in if I was having a particularly tough day, pain wise. Plus, she also slept on our rather large sectional couch so she could help me, or get anything I needed.
As far as food went, I was actually beginning to smell foods again (for the first time in several years) and actually tasting foods again! This was a new and wonderful experience! I had been told that foods would taste far better, and everything would be appetizing again once I had the kidney, and I was seeing that come to fruition! The biggest single factor in everything I was eating was that it had to be fresh. Because of this, my wife bought sandwich ingredients and that is pretty much all I had to eat in the afternoon and evenings for nearly three weeks. My mornings were still limited to hot chocolate, milk, and anything I could make in the toaster. Whatever sounds good, right?

The only interruption to my daily routine was anytime I had to attend Kidney Clinic, or go to a physician appointment or some test. I will talk about those in the next installment.

In my third week home, as I stated above, I began sleeping in the bed; though what I call sleep, was often interrupted with having to use the restroom. In fact, until 12 June, I was getting up about every hour. If I went to sleep early enough, I was still able to get a decent number of hours every night. For my first week in the bed I had a hospital pad under me...just in case I was sleeping so deeply that I failed to wake up when I needed to urinate. Fortunately, this never happened; not even a little bit.

Getting in and out of the bed was easy, so I could actually let my wife sleep; though she did wake up when she'd hear me struggling to sit up.  Our bed is on risers because of my previous back injury and surgery. Being able to gently slip in and out of bed was essential to my sleeping comfort. So the risers came in hand with my new surgery. Not struggling to get up from the bed--then down again-- has been wonderful. Plus, it has aided my healing by my NOT having to strain and tighten my abdomen too much.

On my second week home, I had to get in more walking than jaunting around our small condo, so my wife gently guided me downstairs to the front door so we could walk outside. Those first number of walks were slow, steady and pretty short. No matter how you feel after surgery, getting out walking is essential to healing and strengthening your body. Yeah, it can really suck having to walk, but the alternative of lingering pain for possibly months is just an unappealing thought. Besides, I had already been through three previous abdominal surgeries, plus my lower back, and I will always be the first to tell anyone that getting out walking is horrible. However, I have also learned that walking is incredibly beneficial to you! So, there is no internal debate...you just decide to get out walking every day, increasing the distance a/o pace as your body dictates to you.

As of today, just a day short of two months post-transplant, I have been walking further (about 3/4 of a mile) and faster (in about 7 minutes, now) every day. Plus, I have added walking up a hill for a short distance of about 50 yards before turning around. Both distances will only increase, and my time doing so will decrease.

The oddest part of sleeping in the bed is for me, laying down every day. For those of you who have been following my blog, remember that for the six plus months prior to surgery
I was only laying down to sleep on the afternoons following dialysis because of the fluid buildup underneath my diaphragm. That was just three days per week. The rest of the week I slept sitting upright just so I could breathe. Now, after getting a kidney, all my fluids are being properly routed throughout my body which means no more sub-diaphragmatic fluids, no more struggling to breathe, no more being afraid to wake up in a darkened room. What a complete relief!

Finally, once home from the hospital, I had to get used to the daily meds routine. The Transplant Committee has set your daily [anti-rejection] meds for 800a and 800p. You have a half hour leeway timeframe to take them, but it is generally best if you take them right at eight. The mornings have the largest number of pills, and getting them down can be difficult. For me, I just dislike taking a few at a time; I'd rather just down them all at once. So I quickly learned that downing the meds with a few big gulps of fluid (water, milk/chocolate milk, juice, etc) that equals at least 10 oz, is best for me. I drink a total of 20 oz of fluids whenever I take my morning and evening meds. Also, I have found it best to drink milk because for me, it helps avoid an upset stomach from so many meds hitting your system at one time.
Also, set an alarm on your phone, watch etc, and when it goes off, be sure that you stop whatever it is you are doing and go take your meds! NO EXCEPTIONS! If you put off taking your Immunosuppressants for any reason, you run a very high risk of forgetting to take them at all! So again...take your meds as soon as your alarm goes off!

One last time...and I cannot stress this point enough...
**BE SURE THAT, IF YOU HAVE HAD A TRANSPLANT, YOU TAKE YOUR TWICE-DAILY IMMUNOSUPPRESSANT MEDS ON TIME AND ON SCHEDULE! MISSING A DOSAGE CAN HAVE SERIOUS CONSEQUENCES, SO IF YOU ARE AWAY FROM YOUR HOME AROUND MED TIMES, ALWAYS HAVE YOUR DAILY PILL BOX WITH YOU SO YOU CAN TAKE YOUR MEDS ON TIME!

(In fact, as I was typing this last part up, my 800a alarm went off, so I immediately stopped typing, prepared some chocolate milk and took my meds; after which I resumed this blog. See? Easy to do!)

That's all for now! Remember, this whole series of my transplant is about MY EXPERIENCE only. Anyone else might have a wholly different experience, so be sure to follow the guidance of your Transplant Team and various physicians!

Good Health to All!

ScottW