14 Comments »
Paul,

I could not even image going through what you endure every day with your dialysis treatment
and the mental effect of dealing with this illness. I like many others I’m sure with working
kidneys just take it for granted that our organs will continue to work for us as long as we need them. Just like this happened to you, it can happen
to me or her or him.

It was wonderful that you wanted to share with all of us because most of us don’t know anything about the workings of the kidney let along the
dialysis process unless we know someone close that is going through it and we still might not know because we really don’t care like we should
or ask questions or research information on the subject.

Continue to stay strong on your journey to well being when you receive your transplant.
I do admire your courage and strength with how you are handling this setback in your life.

Thanks for opening my eyes so that I might see better than I did yesterday!

Good Luck and continue to believe that everyday is a great day!

Ms. Roseland

Comment by Ms. Roseland — December 13, 2006 @ 8:12 pm

Their is no greater sign of wisdom than to except a situation or circumstance. Take the negative energy that it creates and use as a catalyst for
change in a positive capacity. All people grow and change everyday, rather it be positive or negative. It says something of your character for you
to be able to reinvent yourself in such a short time in the grand scheme of things. For clarity some people wait a life time.In this you are truly
blessed. God has work for you to do. Continue as you have. But know this God has many blessing in store for you but the only problem is that we
never know the time but who am I to ask when. Continue to fight and I’ll fight with you much love.

Comment by Anthony Hutchins — December 14, 2006 @ 3:08 pm

Paul I was very glad to read the 1st installment of your story. I have forward it to other nurses here in IR. I look forward to reading the 2nd
installment of your story ( that’s the only way I want to hear from you) (smile). Take care of yourself and have a wonderful holiday.

Comment by Sharice Davis — December 14, 2006 @ 8:30 pm

Paul,

First let me say that I am impressed with the entire site; more speicifically the way in which you have presented our story. When I say our story I
don’t just mean you and I; but the countless dialysis patients that have or will endure what you and I deal with each and every day. I commend you
for for your visititude and willingness to not only give accurate information, but to share some of yourself. It’s not an easy thing to do. Thanks again
for sharing and keep up the outstanding work.

Comment by Norman Ross — December 15, 2006 @ 1:42 pm

Paul, this was a very cogent, well-written piece which should be considered mandatory reading for anyone starting on dialysis, or anyone who
would like a better understanding of the challenges and the obstacles that a person requiring dialysis faces. You have the maturity of character in
facing chronic illness that, in my experience, is rarely seen in a person of your age. Thank you for acknowledging the healthcare team. I will pray
that God grant you continued strength to endure, and will answer your prayers for the future. I would like to mention two points in your article to
which I differ in opinion.

“I feel if I am presented with the same information as a doctor I can make a better decision for myself than the doctor could. Sometimes I get the
feeling that individuals who “work” in dialysis actually think they know what it is to “be” on dialysis. The real truth of it is they have no idea what it is
to be a dialysis patient. Until you have the muscle cramping, blacking out due to low blood pressure, fatigue from having a machine remove the
extra fluid in 5 hours that was meant to be removed over 24 hours in a person with functioning kidneys……well, lets just say, you have no idea.
But I do.”

I struggle with the comment on being able to make a better decision for yourself than the doctor given both of you are presented with same
information. The doctor has not only the knowledge acquired from years of formal study (the science), but also the wisdom and insight gained
from managing the care of multitudes of patients (the art). I don’t mean to minimize the perspective you gain from sitting in the dialysis chair, as
well as the information you can gain from a serious commitment to independent study of kidney disease and dialysis, but I’m not yet convinced
one can make “a better decision” than the doctor. But in fairness to you, I can say the times when you may have differed with the doctor, Paul, you
have always taken responsibility for the consequences of your decisions. That says a great deal about you.

Second point. A person will always gain a more intense appreciation, a greater understanding, and a more empathetic outlook, having endured
or experienced something, rather than merely spectating, studying, or being around something. But I disagree that as a staff member I could have
“no idea” how terrible dialysis at times can make you feel. Believe me, I have cleaned up enough vomit, massaged enough cramping muscles,
wiped enough sweaty foreheads, resuscitated enough patients who had, or were on the brink of, losing consciousness to have a pretty good
idea of what it’s like. I have a great deal of empathy for my patients, as do most of the dialysis staff. At times however, we get near-sighted and
only see or appreciate the time a dialysis spends in the unit. It’s easy when you’re struggling to focus on providing a dialysis treatment to forget
that the person sitting in the chair lives with kidney disease 24 hours a day, 7 days a week. This is where I feel we risk having “no idea” what it’s
like and where we need to commit to being more understanding and supportive.

Thanks again for a great article. I look forward to the second installment. Ken

Comment by Ken Dunleavy — December 15, 2006 @ 6:18 pm

Paul,
Thank You. Thank You. Thank You. I thank you for giving me the knowledge and the understanding of what kidney failure is. What one goes
through during and after dialysis. There is no way that I can say I understand your pain because I haven’t gone through it. But let me say, that the
power of “FAITH” can “CONQUER” anything.

Comment by Petrinia Turner — December 15, 2006 @ 7:51 pm

Paul, it is so very brave of you to share your story with others. You are truly courageous and You have educated many who do not understand
dialysis and give courage to those who experience it. Please continue to stay strong and prepare for the day when this chapter WILL end with
your new kidney. We all pray that it will happen soon. You gave all who love you, strength.

Comment by Reneau (Milly) — December 16, 2006 @ 1:58 am

Paul,

I don’t even know where to start. I really am impressed with the way you put your article together.
I feel like often people mistake empathy for compassion. You know I just lost my niece to cancer
on Dececember 8th of this year. She was only 11years old. I guess it has to be hard on both sides meaning
people that actually endure an illness , the people who love you and care for you ,and the caregivers.
we all share something in common we feel helpless. I just hope that with communication we can all just
uphold one another. I think that as a compassionate person it’s my nature to be kind. I sometimes wish
people would educate themselves more to know what’s best for them. Making an informed decision is always
best. Stay strong because your destine for great things.

Comment by unknown — December 17, 2006 @ 7:00 am

Paul

I admire your courage and strength under these difficult circumstances. Sometimes life throws us a curveball and it is during these times that we
find out who we are and what we are made of. Thank you for sharing your story and helping to understand the trials of your journey . Also, stay
positive and keep your head up. Remember ,” good things come to those who wait “. Stay in touch and remember to keep your head up !

Comment by Michael E. McFadden Sr. — December 18, 2006 @ 1:36 pm

I am Paul’s mother. I am so proud of him for writing this article about his experiences as a dialysis patient. I remember when I first learned that his
kidneys had failed, I was very upset, but he accepted
it so well, it helped me accept it also. Paul has been through a lot, and expecially recently with
having to have several surgical procedures due to the failure of his initial fistula. He rarely
complains, and plays whatever hand he’s dealt. He has a very good understanding of his condition,
the medical terminology, etc., and is able to make good decisions on what is in his best interest.
I hope the information he provided will help other dialysis patients and their families, as it helped me.

Comment by YvonneHutchins — December 18, 2006 @ 2:34 pm

Hello Paul! I enjoyed the article and the research that you provided to support the information regarding the clinical, physical and emotional “life of
a dialysis patient”. I appreciated your candid comments and your honesty about the emotional struggles that you deal with. I also commend you
for coping with the challenges that you have been
faced with by not giving in to the trials of life. Yes, we all have our crosses to bear and some can bear it better
than others. You have chosen to stand inspite of how you feel or think. Kudos!!! I am available if you wish to talk in confidence. I am a private
person as well and I feel that “my stuff is my stuff” and that God will see me
through and I choose not to share with everyone. Keep pressing!
I admire you!
Genevieve Nalls, MSW, MBA, LSW

Comment by Genevieve Nalls — January 5, 2007 @ 10:04 pm

Paul your article, on “Hemodialysis” was very interesting and sincere. Over the years ,I passed by dialysis centers, curious as to what went on
inside, as well as, in the lives of those having to frequent these centers .
Paul, I am so glad I took the time to read your article, And ,more important, that you took the time to write it, sincerely: Richardson

Comment by Richardson — January 13, 2007 @ 2:01 am

Hey Paul,
I finally got your blog. Please forgive me for deleting it. I should be ashamed of myself for deleting such an important piece of work.
Let me commend you on the research you did to prepare this work. You captured the essence of what we as dialysis patients go through
everyday. I thank you for giving such insight to our situation. It is not easy going through what we go through everyday. But I know that is only by the
grace of God that we are able to have the strength, tenacity, endurance, and faith that we have. I guess all dialysis patients have a story to tell. I
just want you to keep the faith and know that God is in control. He is blessing us everyday whether it seems like it or not. Again good work!

Comment by Victoria M. Louie Jackson — January 14, 2007 @ 3:45 am

Hello Paul
I am not a dialysis patient. I have my own set of medical issues. I was overwhelmed by your article.
The one thing that stuck out more than any thing was a comment at the end made a health professional.
“But I disagree that as a staff member I could have “no idea” how terrible dialysis at times can make you feel. Believe me, I have cleaned up
enough vomit,”
To this statement I say, Doctors and medical professionals do not listen. My own experience with doctors has shown me that most doctors are
arrogant and believe their training is the answer to all and we as patients don’t have the medical knowledge to make an informed decision about
our health care.
They treat your questions as though they were talking to a child and dismiss your suggestions as well.
Cleaning up vomit cannot compare to vomiting, really who hasn’t cleaned up vomit?

How does taking a few seconds to wipe the sweat off of someone compare to the feeling that is making that person sweat?

Or how long that person has been sweating?

Or how many times that person has had the sweat wiped from their head?
I suggest that doctors realize that their training restricts them to what they can and cannot do, where the information they learn is useful it is by no
means the conclusive. New things are being learned everyday by ordinary people who have no formal training. Many of the medications and
treatments used today are vestiges of ancient home remedies.
The Internet has provided the general public access to every iota of information available on any subject known to modern man.
Doctors it is a new day, people “are” capable of making better decisions when given the same information.
Why? Because they are the first to know how a treatment affects them, Doctors have to wait until their next appointment to ask them how they feel.
I am thankful for Doctors and other health care professionals but this is one case where the health care professional
should apologize to the writer and all dialysis patients who would read his statement for dismissing the pain and suffering dialysis patients have
to endure by comparing it to a incidental chore.


Comment by Administrator — February 1, 2007 @ 9:12 am

 Aspirations For The Future, What Gives You (Me) Hope

By Paul Hutchins

The prospect of writing this piece excited me from the very beginning. You see, I am afflicted with kidney disease in the form of FSGS. February of 2004 was the beginning of this piece; every word in this piece has been shaped by my experiences, from then until now. So sit back, relax and allow me to share with you wonderful people, what gives me hope.

With absolutely no hesitation, the prospect of the use of stem cells for the use of organ replacement leaves me quite hopeful. As an ESRD patient I receive hemodialysis treatments 3 times per week, 5 hours per session. I am on the list to receive a kidney transplant but honestly speaking, this “solution” doesn’t particularly excite me. Let me explain. Having a functioning kidney would be great, to be certain. Not having to be encumbered for 5 hours/3 days per week would remind of days when I felt normal. But in order for my body to accept the transplanted kidney I must take immunosuppressants for the remainder of my life. Couple that with the potential of vulnerability to other illnesses due to a suppressed immune system leaves me feeling uncertain about transplantation as an option.

That leaves hemodialysis, which in and of itself has been a lifesaver. But as a treatment modality, dialysis is not without it’s problems. Problems such as access malfunctioning, hardening of blood vessels, cardiovascular issues relating to hypervolemia, just to name a few.

Both transplantation and hemodialysis have helped to save and extend many lives, however, they aren’t without very serious health-related sub- issues.

As someone who knows first hand how chronic illness can affect an individual, I say to the esteemed readers of this piece STEM CELL DEVELOPMENTS are steps heading in the right direction.

I say this because instead of having to wait for someone to die or decide to donate, some of my D.N.A. could be collected, processed, and presto-change-o I have a kidney based on my D.N.A. This would seem to eliminate the need for immuno-suppressant drugs because, most likely, I wouldn’t reject my own D.N.A/organ. Then a return to true normalcy would be, at the very least, attainable. Steps to becoming a cure-based society rather than a treatment-based society would be more progressive, I think. To have a government providing care for it’s citizens in a manner befitting an American citizen. Citizens that pay taxes and supporters of our government (military, peace corps, etc.) deserve cures when they are available, not just treatments that wind up leaving you a fraction of who you once were.

I understand the concerns some may have about stem cell usage, especially from embryos. In 1995, President Clinton signed into law the Dickey Amendment, which states federally appropriated funds are not to be used for research where human embryos would be either created or destroyed. However, scientists at Wake Forest University may have provided a path around this obstacle. This scientific team led by Dr. Anthony Atala and Harvard University report discovery of a new type of stem cell in amniotic fluid. Potentially, this could provide an alternative to embryonic stem cells for use in research and therapy. With governmental funding, we as citizens could all look forward to a brighter, healthier future knowing that even with chronic illness lurking on the horizon we not only possess, but also have operational, the technology to truly save and improve the quality of lives. That future that we are talking about is here TODAY. For the chronically ill, there is no tomorrow. Tomorrow is today for many of us.

I would like to thank those responsible for conceiving this essay contest. I feel that many who are in charge of making decisions concerning the chronically ill don’t often consult with the very people who could more than aptly elucidate what problems and issues need addressing. Hopefully this piece can spark sorely needed dialog between the chronically ill, the healthcare providers and the government, who has the power to yea or nay the solutions which affect us all. I thank you for allowing me to share that which affects me very deeply.

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