Back in August 2016, I started to realize that once the
sores on my foot were healed I wouldn’t be able to walk because the stroke had
turned my left foot inward. Coming to
this conclusion wasn’t easy, I had been denied the ability to walk for months
and I desperately wanted to walk once the sores were healed. So I started the process of finding an
orthopedic surgeon who could fix my foot so I would be able to walk sooner than
later. I found an orthopedic surgeon who
I liked but after two visits with him, he recommended that I see an orthopedic
surgeon at the U because they were more skilled in treating someone who has had
complications from a stroke.
I called to make an appointment with the surgeon that was
recommended but he was booked up until December. I didn’t want to wait that long so I asked if
the chief surgeon (who had also been recommended) had any openings sooner. It turned out that he had had a cancelation,
so I scheduled my appointment with him for a couple of weeks later.
I met with my new orthopedic surgeon the second week in
October and he presented a plan that made more sense than what the previous
surgeon had said. The plan was to frame
my foot (put it in a halo) for six weeks and slowly bring it up to the right
position, and then he would lengthen my Achilles tendon and do some other
tendon transfers to keep my foot in place.
The goal is that this procedure will allow me to get up and walk again,
but I may have to be in a brace the rest of my life and will possibly not be able
to walk without the help of a crutch. I’m
determined though to do whatever it takes so I can walk on my own without a
crutch to help me. During my visit with this surgeon my dad and I
explained my complicated medical history and as a result he wanted me to try a
Botox injection first and see a vascular surgeon.
I met with a vascular surgeon who examined me and then set
up some different tests that would determine what percentage of blood flow my
leg and foot had. She didn’t seem to be
concerned and figured the blood flow in my left leg and foot would be about
70%, which would be good enough to do foot surgery and heal from it. I had the test a week later and got the
results the same day. Unfortunately I
only had about 50% blood flow in my left leg and foot which isn’t good because
there’s no guarantee that I would heal from any kind of foot surgery. The CT scan that was ordered showed that my
left superficial femoral artery is blocked. My vascular surgeon was quite surprised by the
results because my right leg which has 70% blood flow looks worse compared to
my left leg.
I also met with a physical medicine and rehabilitation
doctor who gave me an aggressive Botox injection to see if it would help the
muscles in my leg and foot loosen up. He
wasn’t positive that it was going to work but I had to at least give it a month
to see. At the end of the first month I
went back in to see the PM&R doctor who confirmed what I already knew. The Botox injection had not worked. The doctor believed my only option now was
foot surgery.
After talking with my orthopedic surgeon, he informed me
that he won’t do any kind of foot surgery until the blood flow in my leg and
foot is improved. If the foot surgery
were done without an increase in blood flow there is a good chance that my foot
wouldn’t heal from the surgery and I could end up losing my foot entirely. After talking and meeting with the vascular
surgeon it was recommended that I have my left superficial femoral artery
bypassed in order to increase blood flow.
I was scheduled to have my artery bypassed on December 27,
2016. The morning of my surgery I went
in and as I was waiting to be taken back to the O.R., the anesthesiologist came
in and told me that he did not feel comfortable putting me under anesthesia
because I have severe aortic stenosis (narrowing of my aortic valve). Being put under anesthesia for a long time
when you have severe aortic stenosis is dangerous. There is always the chance that I could have
had a stroke, heart attack, or worse while on the operating table. Another
echo was performed and then all the doctors involved talked with my vascular
surgeon. After they looked at the notes
and talked with my cardiologist it was determined that it would be best to try
and coordinate having my aortic valve replaced through the TAVR (trans catheter
aortic valve replacement) procedure and do the femoral artery bypass at the
same time. So the surgery was canceled
and I went home.
I wasn’t very happy about having the surgery canceled, but
after talking with my dad, he helped me realize that it was a blessing. I am grateful for the doctors who didn’t say “let’s
just do the surgery” but instead determined what was going to be best for
me.
On January 9, 2017, I met with the TAVR team down at the
University of Utah Hospital. The team
consisted of two thoracic surgeons, and an interventional cardiologist. The first surgeon that I met didn’t impress
me. He hadn’t read my case and didn’t
know why I was there. After we told him
why I was there, he presented his plan.
He talked about putting the new valve inside my old valve (called a
valve in valve). But since the valve I
had was small it would make the valve even narrower. He wasn’t sure how it was going to work. I wasn’t very confident in him and wasn’t
sure if a TAVR was the right thing for me.
I met with the second heart surgeon, Dr. G, next and he impressed me
from the beginning. He had read over my
case and knew exactly why I was there and had a plan. His plan made so much more sense than the
plan the other surgeon had suggested. It
was still considered a valve in valve but the new valve would sit higher up in
my aorta. I next met with the
interventional cardiologist, who I also really liked. He was very familiar with my case and had
been in contact with my cardiologist over at Primary Children’s Hospital. His plan was the same as the Dr. G’s. They
planned on coordinating with my vascular surgeon and also bringing another
doctor over from Primary Children’s Hospital.
I went home from meeting with the TAVR team not sure how to
feel. I couldn’t believe that it was
time for me to have my aortic valve replaced for the second time. It had only been 5 ½ years since I had it
replaced the first time. When I had it
replaced back in 2011, my heart surgeon told my parents that my new valve should
last between 7-10 years if I was lucky.
But it could also last shorter or longer than 7-10 years. We were all hoping it would last closer to 10
years, but the odds weren’t exactly in my favor because I was young and a girl which
meant the valve could calcify quicker. After
I had it replaced in 2011, I was pretty confident that I would get married and
have at least one child before I had to have it replaced. I was wrong though, I didn’t get married and
don’t know when or if it will ever happen.
I knew that since it had to be replaced again I had to make sure I was
doing the right procedure at the right hospital.
I learned the first time around that it’s very important to
find the right hospital and the right surgeon to do my heart surgery. I started researching the procedure, the
doctors, and the different hospitals that have done TAVR’s before like crazy. My dad did his research and we would talk
about what we found. I emailed my
doctors with lots of questions and I’m sure that after the third email they
were sick of me. I knew that I had to do
my homework before Heavenly Father would give me an answer. After three weeks of researching and talking
with my dad constantly, I decided that the TAVR procedure was the way for me to
go. When I came up with this answer I
took it to Heavenly Father who confirmed that this was the way to go. The next step was to figure out where to have
it done. I had my aortic valve replaced
back in 2011 at the Cleveland Clinic. I
knew that they were the #1 heart center in the country and that they would do a
good job, but my circumstances were different this time around and I wasn’t
sure if I really needed to go back to the Cleveland Clinic. If I wasn’t considered high risk for open
heart surgery and needed to have open heart surgery, I would have gone back to
them in a heartbeat. After doing more
research and talking with my parents I felt like the University of Utah would
be okay. I also took this to the Lord
and the answer I got was that it didn’t matter where I had the procedure done
at. With that answer I went ahead and
set up a date that I could have my combined surgery.
My surgery date was scheduled for February 22, 2017, and
honestly it couldn’t get here fast enough.
From the time I met with the TAVR team up until the day of my surgery I started
to get more symptomatic from my severe aortic stenosis. It’s crazy how fast things can change. I went from having energy to being very tired
very quickly. I would wake up exhausted,
be tired all day, and go to bed exhausted.
Doing the littlest things wore me out!
Severe aortic stenosis is not something to take lightly, especially when
you become symptomatic.
The day of my surgery arrived and surprisingly I was a
second case which meant that I didn’t have to be to the hospital until
10am. Once I got checked in I was taken
back to get prepped for surgery. The TAVR
team and my vascular surgeon came in to talk to me about the surgery, and I was
very happy to hear that Dr. G would be the heart surgeon putting my new valve
in. I met with the anesthesiologist, who
I really liked (this doesn’t happen very often). He gave me medicine to make me feel loopy and
calm, then he took me back to the O.R.
Once in the O. R. he put in my first arterial line (which is not a
pleasant thing to have put in). Once the
arterial line was in I was put to sleep and didn’t wake up until I was in the
cardiac ICU five hours later.
The surgery went great!
Since I was having a combined surgery I had all the doctors from the TAVR
team, my vascular surgeon, and another interventional cardiologist who came
over from Primary Children’s Hospital who dealt with congenital heart defects
in children and adults. I had a HUGE
team, for which I am grateful. My
vascular surgeon started the surgery by exposing my femoral artery and then the
TAVR team took over and ran a catheter up my artery and then the new
valve. The TAVR procedure normally takes
anywhere from 1 ½-2 hours, but they were able to place my new valve in an
hour. I was definitely watched over
during this procedure. I know that the
surgeons had help from the other side of the veil. Everything worked out perfectly. They were able to place the new valve the
first time, and my old valve helped secure the new valve. I have no regurgitation (leakiness) which is
a huge blessing! Plus the pressures in my aortic valve went from 40+ (severe)
to 14 (really good)! We learned after the surgery that my valve was placed
without the help of an echo probe. My
chest cavity is small so not everything would fit at the same time. After my new valve was in, the vascular team
took over and were able to use one of my own veins to bypass the portion of my
blocked femoral artery. My vascular
surgeon talked about bypassing two different areas but only ended up having to
bypass one area. Another huge blessing!
Waking up from surgery wasn’t as bad as it would have been
had I had open heart surgery. When I wake
up from open heart surgery I normally have a breathing tube down my throat and
an extremely sore chest. I LOVED not waking
up to either of these things! I wasn’t
in a lot of pain either and only took Tylenol to take the edge off. My throat was so sore though, it was pretty
swollen because of everything that had to be put down it. I also wasn’t able to chew on ice chips or
drink anything because I had to have a swallow test done first and that wouldn’t
happen until the morning.
Getting any kind of rest in the ICU is pretty much a
joke. There were so many people coming
to check on me constantly. My nurse came
in every hour to check the pulse in my foot (which was so strong) and give me
different medicines. He even came in at
3 in the morning to give me a heparin shot! Then someone from the lab came in
to get blood three times during the night, and even housekeeping came in. I think I only got about three hours of
decent sleep that night. On top of
everyone coming in to check on me, my mind wouldn’t turn off. Normally I don’t have problems with this
after surgery but since I wasn’t on any strong painkillers that make me tired, I
was wide awake.
During that night in the ICU I couldn’t help but feel so
lucky and so blessed. I could feel my
Heavenly Father’s love for me and it was so strong. I knew that He had answered my prayers and
the prayers of everyone who had been praying for me. I knew that He knew my fears and that He made
sure everything went exactly how it was supposed to during surgery. I knew He had heard the pleadings of my
heart to have my great grandparents and my uncle be with me throughout my
surgery. I know they were there because I
felt them. The love and assurance that I
am His daughter was very strong that night.
I ended up being in the ICU for less than 24 hours before I was
moved up to the cardiovascular unit.
While waiting for a room to open up I did my swallow test and was
finally allowed to start drinking and eating.
I was also able to get out of bed and sit in a chair. I had my arterial line and my central line
taken out, which felt so good. Once I was
transferred up to my new room I was able to get out of bed more and start a
little cardio rehab. All of my doctors
were happy to see that I was doing so well and they didn’t see any reason why I
couldn’t be discharged the next day. I
had to fight off physical therapy, who tried to get me up and walking. It didn’t matter how many times we told them
that I can’t put any pressure on my foot, they were determined to get me up and
walking. They even got to the point
where they said they would put my foot in a brace so that I could start walking. We had to inform them that my orthopedic
surgeon said that if I put any kind of pressure on my foot, I will crush my
bones because of the way my foot is deformed.
We finally got them to back off and I didn’t have to deal with them
anymore.
Before I was able to be discharged I had to have another
test done (called an ABI) on my leg and foot to get a new baseline for where my
pressures were now. In November the test
showed that I had 50% blood flow in my left leg and foot. Now I have 100% blood flow! I love having great blood flow in my leg and
foot. It’s been amazing to see the
progress the scars from the sores on my foot have made in just a week. Before the surgery they were still pretty red
and had some scabs on them. Now the
scabs are gone and they look great. I
was discharged from the hospital about 48 hours after I was admitted. It was a very fast hospital stay considering
everything that was done.
I have been doing great at home. My leg is still pretty sore because the
incision is close to a foot long and I’m pretty bruised and swollen. Ice has been my best friend and really
helps. I haven’t had to take a lot of
pain medicine which is good, but when I have it has mainly been Tylenol. I feel great and can’t believe that I had a
major procedure/surgery done last week.
I am able to go out and about like nothing ever happened. The next step for me is to have foot surgery,
but I’m not sure when that will happen because there are still some major
factors that will play into it.
