Scouting For A Kidney

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Bad bed side Manors

July 6th, 2015 - Char

Doctors are supposed to be in the line of work of helping people. There are many doctors today that do not have the patients’ best interest at heart. It may even appear that they are not even in the business to heal, but to make a buck. A good indication of whether or not a doctor is genuinely concerned for you, as a person, is whether or not he has good bedside manners

Is he or she curt? Do they seem to not listen to you or your concerns? Are they condescending? Do they speak to you abruptly and act like you are putting them out, or wasting their time? If so, this is considered, bad bedside manners. Not all poor treatment can be attributed to a rough-around-the-edges personality.

With doctors, the majority of their poor attitude and bad personality is directly related to having bad bedside manners. This can make a patient feel uncomfortable and nervous. It can make a patient feel as though their medical problem is insignificant, or trivial. This is an awful feeling to have. I don’t think having excellent clinical skills excuses poor bedside manner! Furthermore, if the doctor is disrespectful, it may discourage patients from seeking medical assistance altogether.

A process of “dehumanization” often lies behind an unfortunate patient-doctor rapport. Dehumanization may occur due to psychological demands placed on practitioners, and from ongoing advances in technology as well. Problems are often solved and issues are fixed without recognizing the patient’s feelings. Sometimes the relationship is so difficult that neither the doctor nor patient is satisfied with it.

Having bad bedside manners can have terrible repercussions. If the doctor seems disinterested in what you are telling him, there are greater chances of him missing something that you said. If he seems put-out or preoccupied, the patient might be more likely to leave out pertinent information. If the doctor is rude and abrupt, the patient may not want to continue getting medical treatment from him or her, and they may avoid going to any other doctor as well.

So often, doctors who behave this way do so because they want to make it a problem with you, not a problem with their own inability to find answers. Such is the practice of an arrogant doctor, one who thinks he is never wrong or incapable. It is not unheard of that doctors will “fire” you or brand you a “problem” so no other will take you in their office and you may be left without a doctor.

Be slow to chastise

June 27th, 2015 - Char

Not long ago, while I was interned in the hospital for Pancreatitis, I was visited by an older LDS missionary couple. As we visited, I found out that she had been my mother’s Visiting Teacher in California. After realizing who I was, she proceeded to chastise me for not visiting my mother more.

Let me tell you about my vacations. Since I have moved to Utah, from California, we have had a total of two family vacations that did not evolve visiting her; that’s two in 40 years. Once a year we dutifully go home; not gone on cruises, church history tours, Disney adventures, or other trips our peers’ go on, or take their children too.
We really would like to go on a real vacation, but can’t see beyond our family obligations, and now that I am waiting for a kidney and Jerry’s health is such as it is, we can’t leave the Wasatch Front. And a mission is so far out of the question.

This sister had no right to judge me; she did not know me or my situation. She must have believed my narcissistic mother, that nobody visits her. My mother is not a pleasant person, but is able to put on any “face” she wants to the world. None of my siblings visit her unless under obligation, or they want something. I visit as much as ones that live in town, but to judge me by that standard is and was wrong and hurtful.

President Dieter F. Uchtdorf, said “When it comes to hating, gossiping, ignoring, ridiculing, holding grudges, or wanting to cause harm, please apply the following: Stop it!” (“The Merciful Obtain Mercy,” Ensign, May 2012, 70) Only God, who knows each individual’s heart, can make final judgments of individuals. Whenever possible, we should refrain from making judgments until we have an adequate knowledge of the facts.

Kidneys; the body’s filter

June 21st, 2015 - Char

The human kidney is the body’s filter. It cleans 180 liters of liquid per day, retaining the good stuff and expelling the bad. We are born with two kidneys. If one of them becomes damaged, the other one can pick up the slack. If both your kidneys fail, however, your body will fill with harmful toxins. Without medical intervention, you’ll die within weeks.

Almost nine hundred thousand Americans suffer from End State Renal Disease (ESRD), meaning that both their kidneys have failed. In the last 15 years, science has technically triumphed over kidney failure. If both your kidneys fail, you can receive a transplant from a donor and live a fairly normal life. The technology for kidney transplants has gotten so good that the donor and recipient need to share the same blood type and a few antigens. Surgeons and anti-rejection drugs can handle the rest. Since almost everyone has a spare kidney, the supply of potential donors is plentiful.

In the United States, over 20 million people have some sort of chronic kidney disease (CKD). Approximately 871,000 Americans suffer from the most severe form of chronic kidney disease, End State Renal Disease. Roughly one half (398,000) of these patients are on dialysis each year. It costs approximately $75K a year to keep each of these patients alive.

Chronic kidney failure is measured in five stages, which are calculated using a patient’s GFR, or glomerular filtration rate. Stage 1 CKD is mildly diminished renal function, with few overt symptoms. Stages 2 and 3 need increasing levels of supportive care from their medical providers to slow and treat their renal dysfunction. Patients in stages 4 and 5 usually require preparation of the patient towards active treatment in order to survive. Stage 5 CKD is considered a severe illness and requires some form of renal replacement therapy (dialysis) or kidney transplant whenever feasible.

Tact and the Patient

June 7th, 2015 - Char

Lately I have been facing many obstacles in my life— and while everyone tells me that I wouldn’t be given more than I can handle from the Lord, I am becoming distrustful in the saying. Frankly, God never said He wouldn’t give you more than you can handle. These words that are meant for encouragement can often serve to only create depression and bad feelings, especially when it’s constant advised.

I want to feel better, which means a Kidney Transplant. This process is so very overwhelming. I did not choose to have Polycystic Kidney Disease and its associated side effects, in spite of a relative callously telling me I selected it in the pre-existence. While not a lot has been written on this subject in LDS texts, what they teach is that only a few individuals in rare circumstances allowed to chose their bodies and the families we are born into.

Tact is the ability to deal with others in touchy situations without offending them. The lack of tact means you are unintentionally rude. Being sensitive to what is proper and appropriate in dealing with others is important. Everyone must cultivate the ability to speak or act without offending. The sad part of it all is that my friend’s and family’s motives are good, and their hearts full of kindly desires, but their words are failures because they lack the proper touch and do not know in what manner say things.

Invisible disabilities

June 1st, 2015 - Char

When you have Invisible disabilities or chronic illnesses, others give you no break. Associates ask you to do things beyond your strength and endurance; acquaintances believe you malingering or faking a disability; strangers give you dirty looks and negative judgments. Although the disability creates a challenge for the person who has it, the reality of the disability can be difficult for others to recognize or acknowledge.

Due to social stigma directed at people with disabilities, many persons choose not to disclose their diagnosis too their friends, family, and others. Because the medical model of disability focuses on curing something viewed as broken, people with disabilities are perceived as defective. The medical model of disability can lead to misperceptions and misunderstandings that prompt some people to be “insensitive and less willing to accommodate the needs of people whose disabilities are not outwardly apparent. A person with an invisible disability encounters discrimination, pure and simple.

Hidden disabilities are everywhere. About 10% of Americans have a medical condition which could be considered an invisible disability. The reality of the disability can be difficult for others to recognize or acknowledge. What is important is that we remember that someone we know may have a hidden disability. Often, these invisible disabilities have negative effects on a person’s self worth and sense of belonging.

My biggest problem has been in convincing people that I have a problem at all. People look at me and assume I am fine, just over weight, and then react to me as if I am being lazy or choosing to be inflexible. Unfortunately, people often judge me by what they see and often conclude I can or cannot do something by the way I look.

Ten Steps to Despondency

May 24th, 2015 - Char

To an individual experiencing frustration, the emotion is usually attributed to external factors that are beyond one’s control. And so it was with me. I seemed to be fixed in the medical possess of the Kidney Transplant listing, and no matter how hard I tried, I seem I could not get anywhere I the manor I planned for myself. In reality, things are as they are; so no amount of ranting and wishing is going to change how the medical field is going to run things. This caused me to become very despondent in the medical process.

Anyway, the first frustration in this progress of becoming a Transplant Candidate was my Nephrologist’s reluctance to recommend me for a Transplant until my kidney function hit 18%. Nationally, for some time, they have allowed you to start the process at 22% and actually list you at 20% function. That meant a two year delay for me just too to be recommended to the list.

The second disappointment was when I was told that I could not have peritoneal dialysis when it became needful, like I had planned. This process uses the patient’s own intestinal lining as a membrane across which contaminated substances are excreted, the process that usually takes place in your kidneys. The catheter or the permanent tube in the abdomen causes too much scar tissue for the double Nephrectomys I will need. I really wanted to do daily, at home dialysis which is better for the body, and wanted the greater flexibility and freedom in the treatment schedule.

Which brings me to the third disappointment, that of two life-threatening operations: One to take out both kidneys and one to put one back in four to six weeks later. The trauma two major operations will be needed because there is no room for a new kidney, and the shifting of other organs back to where they belong, could tear open the grafts of the new kidney. When I learned of this, and that it would put me on the list on as an inactive candidate or status 7 of the United Network for Organ Sharing (UNOS), it became my forth frustration. If you are not status one, or active, you are not offered a kidney, only allowed to gain points to be on the list.

At this point I became very depressed, and overwhelmed. In the ten weeks proceeding and following this point, I completed 35 tests, consultations, appointments, and the imagining required for listing. I averaged 3 to 4 appointments a week, with little time to rest between. Most were painful and many took a week or more to heal. I have yet to receive the results for most of these tests.

Out of all the pre-listing tests the female ones became the hardest to obtain. I took 30 days to get into the Gynecologist, another 30 days to see an urogynecologist for a problem that required a consultation, which became my fifth frustration. He never did write the letter he promised to the transplant team, I had to send a copy of my records instead. And boy did these evaluations hurt; one because the nurse was callous to my instructions to use a smaller catheter and was very brash in her administrations.

What’s more, two differing labs took 33 vials of blood in the sixth week of testing for 53 lab tests. Twice the Murray Lab made mistakes in my tissue typing labs, requiring extra trips to Salt Lake: this was my sixth disillusionment, so many lab processing errors. It seemed that things were not going well; two steps forward and one back became my mantra. My low mood and self esteem started to affect my everyday activities.

It was just after blood tests I was told that my Panel Reactive Antibody Test (PRA) was/is 87%. I am primed to react immunologically against a large proportion of the population. Only one thing in my past could explain it, a seldom seen reason of a sickly childhood. While my PRA is very high, it is not high enough to gain preferential treatment at my transplant center, am just a few points under. In other transplant centers preferential treatment starts at 80% PRA, but my insurance won’t cover any other place. This further limits my chances for a match, in spite of my transplant coordinator telling me “all hope is not lost.” Why would she even say that, unless there was reason to worry?

My eighth frustration was lost paper work and mandatory educations classes at I was never told about. In the conversation about my PRA, I was told that I had to attend a mandatory transplant education class required for those on Medicare and Medicaid, “this Tuesday,” in spite of the fact I am not using these programs at this time. I had little say in the matter, and was lucky that I had no other appointments. The center said they would send me the required forms and handouts in the mail. I did not receive them in time, and attended without them. And when they did arrive, they were missing a vital booklet and form. This held up my listing until it was acquired, signed and returned a couple weeks later.

My ninth Frustration was over my own body. A Fistula is the preferred Hemodialysis access, and is made by connecting an artery and a nearby vein in surgery, for a larger volume of blood. Of the four primary sites in the arms, only one had a chance of success for me, and it failed– a lot of pain for no progress. My veins are just too narrow, probably due to being a sickly, undernourished child.

Finally, I made the list; but my transplant center is not on the National Kidney Registry, further limiting my chances for a kidney match. The National Kidney Registry uses the power of an algorithm and large pools of donor/recipient pairs to find better matches through “paired exchange.” Their “Chip” program would be a God send for me, because I would receive preferential treatment as a sensitized adult, and the fact I have no confirmed donor would not hinder placement. But my insurance will not cover the University of Utah Transplant Program, whom is a member. I could even I could multiple list if my insurance would allow. If I could get on Medicaid I could, but we make $68 a month to much.

Hope is a fleeting thing, hope is the conviction that no matter the circumstances that our lives are going to come out for the good. I’m to the point I have little hope that I will have a better, healthier life. The hits just keep coming. All I see is pain and no progress, for things beyond my control. If I had better insurance, more or less income, more relative support or something!

I was a sickly child

May 17th, 2015 - Char

My body has failed me again. This time because I was a sickly, ill feed child. My mom admits it. She said that “I was sick every other weekend” and that all I had to do is enter a room with someone sick and I got it. Apparently I was so skinny that DCF was called several times when I was young. My under-nutrition caused me to have very poor immune system and rail thin body, with very skinny or narrow blood and urethra vessels.

I cannot form a Himodialysis Fistula, an access site with a large volume of blood. On Monday the 11th of May, my Vascular Surgeon tried to form one, but it failed within hours due to my veins being too small. He used the only site that might work, in my dominant upper-arm. He said we will have to explore other options like a leg vein graft or artificial graft, or catheter. I sure have endured a fair amount of pain in the last few weeks, thru several procedures without positive results.

Approximately 3 out of 10 people on the national waiting list are sensitized, with numbers over 80% on the Panel Reactive Antibody Test. My PRA is 87%, meaning that only one in 100,000 persons will be a match. You can develop high PRA’s from a blood transfusion, an earlier transplant, or from being pregnant with child with a differing blood type, but I have had none of these. The theory is that I am high in antibodies because I was sick all the time as a child; I mean that I can’t wear contacts because I am allergic to my own protein build-up.

I am what you call a “Sensitized” patient and it is a big obstacle to transplantation. Being sick all the time as a child has caused me to have really strong antibodies. I will be waiting for a kidney three to four times longer than unsensitized patients for a compatible donor. Its beginning to look like my only hope is a live or paired exchange donor. In a live or paired exchange donor, I will be able to time things properly and have the largest pool of donors to match. Will you donate me your Spare Kidney?

Modesty and Dignity

May 10th, 2015 - Char

I have recently had to go thru a couple of tests and procedures that required me to struggle with modesty and dignity. One of the tests was so intimate it has left me feeling raped. I grew up in a house full of boys, my privacy and modesty was and is refined to a heighten level.

In years and decades past, I was subtly and not-so-subtly taught that modesty was about sexuality, skin, and arousal, that my body was something to be ashamed of and covered. I can remember having to kneel to test the length of my dresses before it became an emphasis for the church in the 1960’s. I was never taught that I could still in style without being immodest.

Even as a child I remember being told that “men” were not to look at my naked body; yet my mother put me in front of a room sized x-ray machine, “so the medical men could look at my body,” without telling me they were looking to see if I had damaged heart from Rheumatic fever. My self esteem was so damaged over this issue that I wanted to be a boy for the advantages that my parents gave my brothers.

My mom’s modesty mantra created a deep anxiety about my sexuality that still affects me today, but how do you get the medical industry to understand that? How do you get the medical system to understand that modesty concerns mean considerable more to one patient than other? For the procedure I was undergoing, my request for same gender care could not be honored, because there were no female specialists in the area, but it was no less traumatic for one with a heighten modesty issue. It still left me feeling raped and in pain.

Accepting Help

April 17th, 2015 - Char

And so I have made the transplant list. I am not sure how I feel about it. Somebody will have to die or be in pain because of me. This is something I am having trouble with. Sometimes I do not feel worthy of this gift; the gift of health and longer life, of someone’s pain, either physical or emotional. I cannot take away a person’s desire to give Christ like service thru the donation of a kidney or the ability to heal me as Christ healed others, but it is hard for me to be on the receiving end rather than the giving side of service.

None of us likes to admit that we are unable to help ourselves. I have served others since I was a teenager, teaching Primary and acting as a Den Aid to my brother’s den. As an adult, I have served in Girl Scouts, Pokémon, Boy Scouting, and many other callings for uncounted years. How can I courteously accept a kidney from another, when I have strived to serve and not receive my whole life?

I was recently told that I needed to change my perspective and realize that although I may not be able to give physical service back to those who help me, I could offer service of a spiritual nature by accepting their physical and financial service. Larry Hyatt said “You can’t deny me the blessings promised by the Lord, when I give you service.” When others help or serve us they, in turn, are serving God.

In Japanese language there is a term — on. The meaning of on often includes a sense of gratitude combined with a desire to repay others for what we have been given. In a way, when we express our gratitude to those who serve us we are truly showing thanksgiving to God. I’ll try to remember that I might to be the answer to someone else’s prayers for an opportunity to serve and graciously accept their sacrifice with a cheerful attitude.

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