I joined an online support group for people on dialysis. It's though Facebook and it's called, "Dialysis Discussion Uncensored." It is a large group of over 4,000 dialysis patients, techs, family members of patients, nurses, etc., all having some time to the world of dialysis. I have been surprised at some of the topics that come up. Everything from fistula surgery to sex & even the role that pet's play in staying alive. Today, someone posted this question:
"How do you feel about family members that see and know your struggling to stay alive on dialysis and none of them ever mention being tested to donate or have a bunch of excuses to avoid the situation?"
It's a hard one, really. Hard (on the side of the dialysis patient) because this issue of "living donors" becomes touchy one. It's touchy because it really is such a big deal to us that live only because we are connected to a machine for 12+ hours a week. The brutality of treatment is lost to anyone who doesn't have to do it and it's is really such a foreign "way of life & way of feeling" that it is almost impossible for the patients to put into words adequately to make our loved ones understand. However, it is from that place that we wonder, "If it's this bad, why doesn't any one offer to help me?"
There are three reasons, I believe, more people don't offer to donate. Lack of understanding, fear, & some big reason you don't know about.
Lack of Understanding:
I honestly believe that if friends and family members really understood what life on dialysis is like, they would be compelled to consider living donation. No one, with a heart, would purposely leave someone they love in the position that dialysis creates for some people. Part of the problem is this: They can not understand. It's impossible. Do you remember what it was like for you before you started? What did you expect? How did you think you would feel? You read all the blogs, articles and essays, yet, you showed up that first day for treatment with no idea, really, how hard it would be or how bad it would make you feel. I remember, having my worst treatment (ever), to date. Jason (my husband) picked me up at my clinic, which is about 3 miles from my house. I could not walk to the car on my own. I was so weak that I had to have help getting in my house. I, even though I was hungry, had no choice but to go straight to my bed where I was so far past exhausted that I couldn't comprehend the words that were coming out of Jason's mouth. Furthermore, I knew, when I tried to talk that I was not making sense. I could barely lift my head. I felt like I had been run over by a train and there was nothing I could do about it, but try to sleep it off. I kept waking up, confused, alone in my room, knowing that I was physically so depleted that I probably should have had some medical attention. I slept that day for six solid hours after dialysis before I could string together the words to tell my husband I was hungry and communicate to him what I thought would help me. I felt, in those moments that day, like I really could die from all of this. Folks, that is desperation. Those moments, although they don't happen every day, are a part of this life on dialysis. Some days, I only need to sleep for a couple of hours & I am ok. Other days, I never really recover before it's time to go back for more. However, even with that story, everyone's is slightly different & all the words and stories in the world don't allow you to feel the desperation, sadness and hopelessness that can creep up on you. Until you live it, you don't get it. So, if you have someone that you know and love that is on dialysis and needs a kidney, understand that you can't understand. At least the acknowledgment that you know you can't understand helps. There is nothing worse that someone popping in your room and acting like they know exactly what you are going though & have all the right answers to your problems, when they have barely stubbed their toe in their own life. Don't be that guy.
My best advise: Try. Know you can't really understand, but purpose in your heart today, "I don't understand what this is like, but I will try and understand, the best way I can, so that if there is something I can do, I am open to being drawn to doing it." That is the best we can hope for in such a complex issue. Sounds strange, "Understand that can't understand & act on it," but if you think about what I am trying to communicate to you, I believe it will make sense.
Fear:
At 35 years old, I have personally been "under the knife" 13 times (to the best of my memory). That is a lot, I think. So, I am used to IV's and hospital stays. Even if I had not had anything done up until the point of dialysis, once quickly becomes accustomed to procedures and medical terms. It's just the nature of the beast. A life on dialysis is full of blood, needles, IVs, catheters, diet restrictions, prescriptions, gauze, tape, etc. There is no way around it.
According to listverse.com, the following is a list of the top ten strongest human fears:
- failure
- death
- rejection
- ridicule
- loneliness
- misery
- disappointment
- pain
- the unknown
- losing your freedom
People who even think about living donation, if we are honest with ourselves, have to face all ten of those, in once capacity or another. Not to mention the fears that aren't listed. Like, "I have children, what if I give a kidney and something happens to my one kidney later, will I die and leave my child mother/fatherless?" Or maybe, "What if something goes wrong in surgery & something happens to me? Am I willing to take the risk of leaving y children mother/fatherless to do something I don't "have" to do?" Although, statistically, it is very unlikely that donation would result in death, it is a possibility and something a living donor has to consider. If you really try-- you can understand how fear plays a pivotal role among the reasons people don't offer up an organ.
So, now, you think, "They get it (or get that they don't get it)." :) They made it past fear and yet, they still don't offer..." Well, there might be...
Some Big Reason You Don't Know About:
Did you know that being a living donor has many stipulations? The first one is that they be a compatible blood match. But, did you know that a person almost has to be in perfect mental and physical health to even be tested to give? Did you know they can't be overweight? If they have diabetes, MS, heart failure, or any other list of medical conditions, they are disqualified?
Here are a few of the most common reasons that people can't be a living donor (from the medical side):
- Incompatible blood type
- Kidney disease
- Diabetes
- Hypertension
- Significant cardiovascular disease
- Active substance abuse (drugs or alcohol)
- Morbidly obesity
- Currently Pregnant
- HIV positive
- Others as determined by the transplant team
Beyond that, there are many reasons that people don't give & there is no way to know and list all of those reasons. Those of us who are waiting on a list or for a living donation have to choose to understand that, even though we don't know what they are, some people are just not going to be compelled to give and we have to be okay with that. No one owes you anything, especially not an organ, when you don't really know their reasons for not offering. Some people are just not in a place in their life where they can be that selfless and that is okay.
It's iso important for us that need an organ to be at peace with people's decision not to offer. Before you were sick, how many of your own organ's did you offer up? Why?
I believe, in my heart, that if a person is supposed to give you a kidney-- they will. You don't have to ask them. You don't have to manipulate them or give them a guilt trip. I believe, with everything I am, that God draws certain people to do something so selfless. I believe that IF you are supposed to get an organ, by death or by life, it will work out for you. No amount of complaining and feeling sorry for yourself will change that- except it might delay it for you because YOU aren't ready spiritually. Those of us who wait on that call, or are waiting on matching tests to come back, must live with the every present hope of life, we must live, have a good attitude, not give up, etc. But, we must also, let go of the people around us, freeing them to be compelled to give, and being okay with them if they are not compelled to give.
If you feel compelled to give- DO IT! If you don't, that is okay & no one has the right to make you feel guilty about that-- no one!
So, how do I feel about family members that see and know your struggling to stay alive on dialysis and none of them ever mention being tested to donate or have a bunch of excuses to avoid the situation?
I feel just fine with that. People are only capable of what they are capable of. No one in my life lives under the expectation that they are required to give me an organ. They are not obligated. If it is something they want to do, they will let me know & I will consider it a blessing. If it isn't, God has another way for me. I live in peace & I let the people in my life live in peace, as well, knowing that it is not by job to draw them to give. I allow people in my life the freedom to choose their own way, just as I have the right and responsibility to choose mine.
If you find yourself wanting more information about living donation, here is a few facts from the website of Emory University Medical Center.
The Donation Process (EmoryHealthcare.org):
The following steps provide an overview of the donation process from the donor’s view. Each step is essential to minimizing the risks to the donor and must be completed before proceeding to the next step. More detailed information about testing and procedures can be found in the Initial Consultation section.
Step One
You will have a brief phone interview with the Living Donor Transplant Coordinator to briefly discuss your overall health and medical history.
Recipient’s Blood Type | Donors Blood Type |
|---|---|
| AB | A, B, AB, O |
| B | B, O |
| A | A, O |
| O | O |
Step Two
Your blood type and the blood type of the recipient is tested for compatibility. The following table shows compatible blood type matches:
Step Three
You will then have a special blood test called tissue typing and crossmatch. This is a test for compatibility of your kidney with the potential recipient.
Step Four
You will then be scheduled for a formal donor evaluation. During the evaluation visit, you will meet with members of the transplant team, have additional blood tests, and imaging tests of your kidneys performed:
• A complete set of blood tests, including HIV
• 24-hour urine collection, which tests how well your kidneys are functioning.
• Chest X-ray, EKG, and an ultrasound of your kidneys
• Evaluation by a transplant nephrologist (kidney specialist)
• Evaluation by a transplant surgeon
• CT (CAT) scan or MRI of your kidneys
Meeting with a transplant Social Worker and Independent Donor Advocate
Step Five
If testing is normal and your are cleared to donate, a surgical date is decided. You will come in for presurgical testing, consent signing, and a final crossmatch, HIV and hepatits C test approximately two weeks before the surgery.
Step Six
If the presurgical tests are normal, both you and the recipient will be admitted to the hospital early in the morning on the day of the operation.
