Update #4-September

I left off my transplant journey with being released from the hospital on August 30 and coming to stay at our condo in Foster City. This was set up through Stanford via a wonderful social worker who knew we wanted to have the ability for the kids to visit us.  The apartments closest to the hospital were not conducive to having the kids visit.  Here are pictures Scott took of the condo to show me the day he moved in which was August 19^th.  It is fully furnished with everything one would need except food and supplies (and my girlfriends hooked Scott up with those the following day!)

We even had our own laundry facilities!

There were two bedrooms on either side of the living area that were similiar

Short walk from our condo to this waterway area

It felt surreal being out of the hospital.  I spent a total of 20 days in the hospital including admission day.  To be out in “the real world” felt like freedom and uncertainty at the same time.  I’d like to clear up a few misconceptions about heart transplantation (or any organ transplantation for that matter).  It seems it should be a “simple” fix; remove the diseased organ, replace with healthy organ and the recipient continues with life as if they had never been sick.  I wish it were that simple. 

Here are pics of me at the condo when we arrived.  I also have some pics of all the medications I came home with!  21 medications/supplements total; not including the 2 different insulin meds. One medication was for pain-as needed.  I’ve rarely needed it.  Fifteen are prescription medications and the other five are supplements required because the medications deplete the body of these essential vitamins and minerals! 

Filling my Giant pill box!

And just so you realize-I said 21 medications/supplements, but for quite a few of them, I take multiple pills-twice a day!  So for example, in the mornings I would have to swallow a total of 18 pills,  2 liquid medications, suck on one lozenge and receive 2 insulin injections.  By the time I finished swallowing the pills-an hour had passed and I was too full to even eat breakfast!  I had 3 mid-day pills and at night I had 16 pills and 1 liquid medication.  The insulin shots are 4 times a day: before breakfast, lunch, dinner and at bedtime.  The before breakfast requires 2 different insulin types/injections and then depending on my numbers before bed, I may require 2 injections, but typically I get just 1 injection before lunch, dinner and bedtime.

Each morning upon waking, I’m required to record my weight, blood pressure, temperature, and the blood glucose test results are recorded prior to each injection.  This record is brought in for each clinic appoint for the coordinator and docs to look over.  At this point I’d like to explain how important it was for me to eat.  I had hardly any appetite pre-transplant and had an admission weight of 104 lbs.  On discharged I weighed 100 lbs. but a lot of that was fluid retention. 

Over the course of the next couple of weeks my weight varied on the spring scale given to us from 100 to 108-most of it fluid retention because I certainly wasn’t eating that much!  The docs changed my diuretic and we finally purchased a more accurate digital scale a couple days later.  My feet were so puffy that I could not fit in to any shoes that Scott brought for me to wear.  A friend ended up buying me some flips flops which I wore for weeks whenever I left the condo.  Once the water came off, I was averaging  97 lbs a day for the next few weeks.  My dietitian had me shoot for a goal of 1800-2000 calories a day and put me on an appetite stimulant.  She'd also introduced me to this Orgain Shake to drink and I used those shakes in the morning and evening to take my meds with.

During those first 3 weeks out of the hospital, I had two caregivers come relieve Scott.  The first caregiver was one of my dear friends from back home.  My girls and Scott had set up a “caregiver” calendar for people to sign up so Scott could go home on the weekends and see the kids and hopefully work on our remodel project. 

I’m not sure Robin knew what she was getting in to signing up as the first caregiver, as I needed more care in the early weeks after discharge.  She arrived Friday evening and stayed until Monday.  Sunday late afternoon our friend Roxy texted Robin and drove down join us! They both took me to my Monday morning blood draw.  Then I went on my first official “outing” by going to a café for breakfast with the two of them.

As a reminder, at this point in time, I was required to wear the Hepa-filter mask anytime I left our condo.  I was given permission to remove it at a restaurant, but I needed to sit away from the door in a back corner, away from the crowd as best I could.  Once seated in the corner, I could remove the mask.  When we finished breakfast, I donned my mask and gingerly made my way to the exit.  The place was now hopping with people and there was a lady seated by the door waiting for a table. She reached out to me just as I was about to pass her and stopped me and said something along the lines of, “I’ve been where you are.  You are doing a great job!”  I teared up and thanked her.  I didn’t feel as if I was making any progress at this point.  I felt so weak, shaky, spacey and unsteady.  But her words of encouragement were like a little nugget from God.

Scott returned later that day and we spent the next 8 days back into our normal routine of bi-weekly appointments.  On September 14^th my sister arrived from Chicago and the three of us drove to Half Moon Bay.  We first had a late lunch at the Half Moon Bay Brewery where I devoured a cup of Clam Chowder and some tasty fish and chips. 

We found the beach where Lisa and I had visited with our folks after the first transplant in 1990 and Scott took a photo of us there for comparison.  This time at the beach was a much tougher go around.  I had to wear the mask (but took it off briefly for the picture) and I was having a difficult time breathing with the mask on.  I was also weak, and walking in the sand was extremely challenging.  Needless to say we did not spend as much time as I usually like to spend by the ocean (my favorite place to be).

Scott left the next morning and Lisa took me to my “Spa Day” at Stanford. At this visit,  the coordinator and doctors pushed out my next lab and clinic for one week, basically skipping my Monday labs and clinic.  The drive home form the 4pm biopsy was an adventure!  Basically we knew it would take us an hour to get back to the condo.  No problem, we could do it.  The unfortunate thing is we chose the wrong route that day, as we later found out after sitting in traffic for well over an hour and watching cars in the far right lane literally driving backwards and driving across a grass median. Or a little bit later, cars in the far right lane driving the opposite direction to cross over the grass median.  It was the craziest thing both of us had ever seen and we were laughing..  I tried to get photos but they came out too blurry. At this point when this occurred only 20-30 minutes had passed.

But as we continued to wait,  it got darker. At some point we figured out that they had closed the highway and it would now be three hours according to our phone maps to get back to the condo.  We were just nearing the last part of that grass median and we did what all those crazy people we mocked earlier had done and cut across the median and turned back the other way.  (It wasn't until much later we realized we and all the other cars were driving the wrong way on a exit/entrance ramp.)  Even after getting out of that mess it still took us almost another hour to get home.  I believe if I'm not mistaken, our total time to get back to the condo was 2 1/2-3 hours!

Later during Lisa's visit we did an outing to the Cheesecake Factory and Forever 21 to find some birthday earrings for my niece.  I hadn't brought my handicap placard and these stores were located at a mall.  The walk from where we parked to the Cheesecake Factory would have been decent if you were healthy.  It took my awhile to get across from the back of the parking garage to the entrance of the Cheesecake Factory.  At this point in time, it's challenging for me to walk as I have no muscle tone and my legs are shaky and weak, but I did bring my walker-yet you still have to "walk".

There was a 20 minute wait at the restaurant, which is pretty good for the Cheesecake Factory.  But remember, I'm wearing my Hepa mask, and it is crowded.  Luckily I did bring a walker with a seat, so I was able to sit down.  However nature called so I needed to use the bathroom.  The bathroom was located at the back of the restaurant.  I was already exhausted but you can't stop the forces of nature! We returned to wait and ten minutes later we were taken to our seat, in the very back of the restaurant close the bathroom.  It never felt so good to get my mask off and sit down.

After lunch, the Forever 21 store was just "across the mall" from the Cheesecake Factory. Excellent. But remember, this is a mall and the doors basically came out into the entrance of the mall, and then we had to walk the "mall hallway", I'll call it, with a few stores on each side until we arrived at the opening to all the stores in the mall.  Forever 21 was just across the way.  I'm sure Lisa is thinking by now-it wasn't that far-but to me and my weak legs and my shallow breathing in the mask-it felt like miles!  And then of course jewelry was on the second floor, and where were the elevators, you got it, at the back of the store!  I found my niece her earrings and then we made the long trek back out to the car.  I was wiped out!

When Scott arrived back to the condo, I could hear them chatting about me.  They both felt I had major anxiety wearing the mask and both felt I seemed to be almost hyperventilating in it.  (Read on to find out why my breathing was actually labored).

My sister left on Sunday, and I had my next appointment on Thursday, September 22.  Theoretically it would be a “short” day at Stanford and my aunt Joanne was coming down for a night as one of my caregivers until my next caregiver arrived on Friday to relieve her.  However, fate had other plans for the next 11 days!  

I was admitted to the hospital again due to symptoms I was experiencing including shortness of breath and "crackles" the docs heard in my lungs. After ordering a chest x-ray,  they admitted me for pneumonia.  Luckily, I was given a private room again with a great view of the fountain in front of the hospital!  My aunt had already arrived at this point so she was with us during the re-admission process and hung out with us until she and Scott left for the evening.  The two of them returned the next morning and then she made her way back to Sacramento. 

I had several specialty blood culture tests, breathing treatments etc. for the pneumonia that took place that first evening.  Routine IV antibiotics were ordered until they could figure out if there was a specific cause of the pneumonia and the cause of some strange fluid buildup in each lung.  Many different tests were discussed, including one involving putting a needle in me to drain and test some of fluid from one of my lungs that had a small pocket of a gel-like substance.  Thankfully this was one procedure I did NOT have to experience!

Regardless of the fact that I no longer needed caregivers, my friend Roxy still drove down Friday to hang out with Scott and I in the hospital.  We "door dashed" some PF Changs and I ate all of my Dynamite Shrimp.  (Doordash is service where you can order food from 157 different restaurants in the area and they deliver to your door!)  By now the spicier the food, the better.  The medications created havoc with my taste buds and spicy and sweet foods were the only things I could really taste!  On Saturday, my other weekend caregivers -Susie and Chandra- came to visit me in the hospital.  It was nice to have visitors, however I know it was challenging for them, as until my blood cultures came back, everyone who came into my room had to wear a mask!  And even though I was back in the hospital again, they could see the progress from their last hospital visit in ICU! Once again that evening we "door dashed" some Mexican Food on Saturday night!

When the blood cultures came back that day, it was discovered I had pneumonia due to a Listeria infection.  The Listeria would not have been found in routine blood work, only the specialty blood culture tests could determine that.  Had I not been admitted, we have no idea how this would have manifested in my immune suppressed body.  This was completely in God’s plan to catch this early.  As soon as the Listeria was discovered I was started on some heavy duty IV antibiotics. 

I’ll stop here for now, as this takes us through the month of September.  I’m going to try to send out 2 more blog updates next week for October and November.  Luckily those two months were less exciting on the medical complications front!