1. Amputation: From Pitfalls to Positives
One Family's Journey
Let me start off by saying that this is neither a "feel-good" nor a "self-help" book. None of this is meant
to disrespect any field or particular entity. Our journey through the amputation process has been ours
alone and no one will have the same issues we did. No single situation is the same as another, BUT they
are analogous in many ways. This is not a story of absolutes, as we all know there are none. Our story is
only what we learned by going through the process, and we hope it will help you while going through
your own.
Starting at the beginning with all the things that lead to this point will only muddy the message, so the
early issues will be done in synopsis form. The majority of this book takes place between October of
2014 and now, which may seem like a relatively short amount of time. We assure you, while it is
happening, it feels interminable.
In the beginning: A synopsis.
More than ten years ago things happened which, more than likely, led us to where we are today. Let this
be a warning to those who "let things lie," because doing so may ultimately bite you in the ass. There
was a huge issue which caused my sister, who was still in her thirties, to have an aortic cleansing, if you
will, due to some blockage that may or may not have been precipitated by either a strange reaction to a
bee sting or an electrical shock. That question is one for the ages because we do not know with any
degree of certainty.
Her lower aorta, which many of us didn't even know was a "thing" until that point, was blocked due to
clotting for no known reason. After that clot was cleared (cleansed) she ended up losing the middle toe
on her right foot, which was attributed to a portion of the aortic clot breaking away and lodging in her
foot. Who could have predicted that an issue that was “taken care of” more than a decade prior would
end up being a major medical problem? Certainly not us.
Please heed this warning, if your doctor says you need to follow up when a situation happens, please do
so. From what we have been told, the issues that ultimately led to the amputation had been brewing
over the last decade and could “possibly” have been prevented, though of course no one knows for
sure. But, the thing we do know is that my sister most likely has had, and now surely will have a clotting
issue for the rest of her life.
The lead in to tragedy:
Jump forward in time to sometime in 2013 or 2014. There were warning signs that may have gone
unnoticed due to job related pain, or so she thought. As time went on Jess started feeling more and
more pain in her legs and back, which was attributed to the demands of her job. General lifting and
stretching, picking up parts, running machines, climbing up and down stairs, and the like, she felt was

2. just taking a toll on her body as we all tend to think while we advance in age.
As 2014 wore on my sister began to notice that she was unable to perform her job as she had before.
She was more tired and in an increasingly intolerable amount of pain. Time off work was inevitable
because things hurt so much that she didn’t want to move some days. She had to sit more and more
often while inspecting parts and finally was unable to walk much at all.
In October of 2014, she had a very slight accident while shaving her legs. Jess, happened to nick a toe on
her right foot and it did not heal. After attempting various self-help remedies such as peroxide,
neosporin, ice, heat, and other such ideas, it was time to see a doctor. (As an aside, we have a paternal
grandfather who died in the seventies of complications caused by type I diabetes, but she has not been
diagnosed as having that condition even as we speak. The reason it is here in this manner is because
everyone will ask that question. “Are you diabetic?” With a sympathetic but knowing smirk. When you
tell them, “No!” they look at you with absolute shock, but I digress.)
There was an urgent care center visit where antibiotics were prescribed, to no avail. Then there was a
need to find a primary care physician to see if there was anything else that could be done. Of course
there were thoughts of super bugs and various other viruses and/or bacteria that are resistant to
medical science. I had an infection myself in around 2009 that took months to heal. In fact my doctor
said if it had not healed when it did I would have had to be hospitalized with no good prognosis, bu that
is not really part of the story.
The first diagnosis:
After deciding on Dr. Ho and Certified Nurse Practitioner Leah from Erieside Clinic in Willoughby, Ohio,
Jess went in for an appointment and was quickly told that she needed to go to the emergency room
because there was no pulse in her foot, obviously not what you would call a good sign. The emergency
team contacted their vascular team who decided there needed to be stents inserted in her two femoral
arteries at the upper hip because there was very little blood flow in either leg. After semi-successful
surgery implanting the stents, there was immediately another issue which caused another emergency
surgery. The stents were to provide blood flow in order to perform an arterial bypass of her femoral
arteries, the problem was: the stents has clotted so quickly that there was once again, no blood flow. At
this point the doctors were beginning to see what the issue might be. BUT, most importantly for any of
you possibly experiencing this particular horror, there was no discernible cause. There is no named
disease that causes this issue. It is just some odd genetic mutation that tends to cause abnormal clotting
which is of course extremely dangerous.
The next step was to clear the clots and attempt the bypass. The right leg was to be done first because it
was in the worst shape. The doctors tried for over three hours to find something to attach the bypass to,
but there were no arteries of any worth below her knee, so they had to basically admit defeat on that
leg, which, of course, led to talk of amputation. The thought was of, possibly, toes… then foot.. then
maybe ankle.. perhaps the entire leg. Jess did not want to go through the “piecemeal” that one of our
friends went through so she opted to go as high as needed so she would not have to go through the
process again, if at all possible.

3. The doctors had decided to do an above the knee amputation (AKA in vernacular), but, as things had
been going, there was an issue. As she was going into surgery to remove the right leg, the left leg
proceeded to clot again requiring her to have emergency bypass surgery on the left leg. Their reason
was to save the left because there was nothing they could do for the right. Up until this point I had been
in Charlotte, North Carolina and just hearing things through phone conversation with Jess’s soon-to-be-
husband, Bill, our mother, and our sister Jeannie. I knew it was getting bad, but had no idea what was in
store. Oh, and to make it all the better, our grandmother had a stroke during all of this and ultimately
succumbed at the age of 93. (Slightly humorous aside-though definitely gallows humor- I thought, due to
however I heard what I was being told, that, “..Grandma fell and had a stroke while on the way to see
Jessie at the hospital.” I couldn’t imagine the horror of thinking that your grandmother got hurt on the
way to see you in the hospital. I kept that to myself for a few weeks before I finally had to ask. I was
completely off. She had fallen at home and was in the hospital a couple rooms FROM Jessie but was not
on her way to VISIT. I’m sorry, I told you it was gallows humor.)
So, now I am going to get into the nitty-gritty of how this went, and is still progressing, have I said yet
that you need to ask questions and be vocal?????
Sometime near the beginning of March, I had begun getting what I saw a cryptic messages from my now
brother-in-law regarding “something” to do with my sister’s health. She had been complaining for a
while about painful legs/feet so, I was not really alarmed, EXCEPT for the fact that I never hear from
people back at home unless I do the calling (Mom is the exception). Bill finally did call and told me there
was another blood clotting issue that caused a lack of blood flow to the same leg/foot that had already
lost a toe over a decade ago.
The first real conversation was while I was walking around the apartment complex I was staying in, in
the Arboretum Area of Charlotte, North Carolina. This was after the first “outpatient” thing that turned
into an emergency stenting which in turn became an emergency surgery due to the blocking of those
stents.
So, this will be an emotionally charged story and while the dates and times, as well as dialogue, will be
pretty close, it will not be exact. The names of most of the people involved will be true, others will be
changed to protect, not them, ourselves from litigation that we would ultimately win, but who wants to
go through the process and spend the time and/or money to prove what we already know to be correct.
They will spout, “slander/defamation,” or other things that are only possible if it were not the truth.
Well we took notes and made many complaints along the way, so we have documentation, as you
should be sure to do at the beginning of any process. HIPAA regulations are your best friend when it
comes to making sure your loved ones, or yourself, receive the care they must assuredly deserve in a
process that is so often impersonal and sometimes outright degrading or dehumanizing. Yes, you are a
number, but at least, with the correct knowledge, the powers that be will know and respect that
number because you are or have an advocate.
01/26/2016

4. Today we are on the way to the final prosthetic leg. Our guy, came over and, as usual, was his wonderful
affable self. He asked how we are and what was going on to which we replied, “What IS going on?” We
went through the usual talking about how odd the leg feels. Jess had been saying it flet low. He raised it
about half and inch then she felt it was still too low. He then raised it another 1/8th
inch, which was ll he
had left and, lo and behold, it feels pretty good.
The question of the day was, and we waited to ask, “What about the other leg?” He said, he would talk
to his partner and we would get that extra leg Brian had told us we would get. This has been a slight
bone of contention because it is not written anywhere on the paperwork that we can tell. But, today, we
were told he would make it work. Jess has been using her leg daily and wants to have an extra just in
case. Such is a very important thing to have for someone who is trying to rebuild a life after the trauma
of losing a limb. We are on the way!!!
So..today, 2/11/2016, was the latest meeting with Frank, our wonderful prosthetist. Here is how it went
this time, with a flashback to help in the understanding. Last meeting we discussed the move toward a
final “permanent” leg. As the discussion went along Jess’ said the leg still felt low, it was raised and it felt
better. Frank said it could not be raised any more on the current pylon (that silver rod thing you see on
most prosthetic legs). In the ensuing couple weeks, she has felt again that it is a little short and that it
appears to be pointed wrong when looked at off her stump as well as concerns of pigeon toed walking
and/or splayed out. We all agreed that the plastic piece looked like it was pointing in the wrong
direction. The office called me because the last thing we said was that she should get used to the new
height then the current leg be used to mold for the permanent (of course the question earlier was
whether she would have one or two, which had been answered as: two) leg. I mentioned that she felt it
was still a little low. Ann, who called me, said, she thought it was only supposed to be for Frank to pick
up the current leg, use it to mold the new one, drop it back off the next day. Au contraire, my friends, he
needed to possibly do another adjustment
Enter this meeting and Frank’s look of slight annoyance over the fact that he thought, original, it was
going to be a quick “in and out.” Of course Jess picked up on it. She was trying to explain the low and
high feeling as well as the tight and not so tight feelings. There was also the question of the odd angle
and whether or not insurance was already billed for two versus one. (I want to re-iterate that Frank is a
great guy and wonderful about explaining how the leg works and issues with the hardware, BUT when it
comes to the money side and contractual issues…just let me say, I know why he is working with Brian
instead of on his own.) As far as the billing question we “think” he said the other leg was covered under
the old insurance but the covering, which was an original selling point because it can be tattooed, is not
covered and is therefore subject to another round of deductibles, we will take this up with them.
Anyway, Frank listened, had my sis walk and observed her gait. He also measured her knees and hips to
see if they were even, although it may not have seemed so, I was paying attention and agreed. Frank
explained that the difference in height may be an issue of sock thickness in that a thicker (heavier ply)
sock would cause the screw thing in the bottom of the sheath top clicks less (which means it doesn’t go

5. in as far) giving her extra height. One would have thought we would have heard this, or even figured it
out, by this point, but we obviously had not. Most of the talk about the sock thickness revolved around
how tight it should be to make sure there was no “play.” Jess had a look of anxiety about wanting it to
be “perfect” (my word not hers) which got the best of her. She apologized for having Frank come out for
nothing, then, began to cry. I knew why, but when he saw her he couldn’t understand. I explained that
she felt as though she was too indecisive and that it was becoming a pain in the ass, admittedly I can see
where she was coming from because Frank had a look of, “What the Fuck,” on his face. I explained that
it is the frustration of not knowing whether it feels good or not, because it does, then it doesn’t then…
you get the picture. I didn’t help matters by showing that I was not really paying full attention, because
it just get hard sometimes.
What I want you to get out of this portion is that, as has been said many times before, this is an ongoing
process. There will be many ups and downs along the way and the emotions will often times seem
misplaced. They are absolutely real and we all need to pay attention to what is going on so we can stave
off anxiety and possible depression. I know my sister appreciates everything everyone is doing, but
sometimes do not show her that I understand. Our family members need that as much as we need
validation from them that they appreciate us. This is a family matter and, as such, needs to be treated
that way. Until the next addition…

6. in as far) giving her extra height. One would have thought we would have heard this, or even figured it
out, by this point, but we obviously had not. Most of the talk about the sock thickness revolved around
how tight it should be to make sure there was no “play.” Jess had a look of anxiety about wanting it to
be “perfect” (my word not hers) which got the best of her. She apologized for having Frank come out for
nothing, then, began to cry. I knew why, but when he saw her he couldn’t understand. I explained that
she felt as though she was too indecisive and that it was becoming a pain in the ass, admittedly I can see
where she was coming from because Frank had a look of, “What the Fuck,” on his face. I explained that
it is the frustration of not knowing whether it feels good or not, because it does, then it doesn’t then…
you get the picture. I didn’t help matters by showing that I was not really paying full attention, because
it just get hard sometimes.
What I want you to get out of this portion is that, as has been said many times before, this is an ongoing
process. There will be many ups and downs along the way and the emotions will often times seem
misplaced. They are absolutely real and we all need to pay attention to what is going on so we can stave
off anxiety and possible depression. I know my sister appreciates everything everyone is doing, but
sometimes do not show her that I understand. Our family members need that as much as we need
validation from them that they appreciate us. This is a family matter and, as such, needs to be treated
that way. Until the next addition…