Sometimes it would be nice to just go somewhere all alone and just not think about anything. I am sitting at Dialysis after just coming from a funeral. This is twice in a month that I have come straight from a funeral to this place. Not the happiest situation in the world. Both funerals were for young people. One was for Wendy, from my first blog ever. One was my brother-in-law. My husbands older brother. A true shock, I never dreamed he would really do something like this.

I hate when people ask, "so, how was the funeral?" How do You think it was??? We buried someone! They are not coming back. or better "How is ____ taking it?" How do you think? They are grieving. I want to turn around and ask, "have you lost anyone? that is how they are taking it!

I know people don't know what to say. I don't know what to say. But I know some things not to say.
- Please, no more stories about every person you know who has died.
- Please, no more asking if we know why he died
- Please, don't ask how we are doing if you don't want to hear "depressing things"
- Please don't offer " I'm so sorry and launch into '20 Questions'
_ Please do not tell us it was an "easy way out" or any other wording of this. Don't you think we have already been through so many scenarios in our minds? So many "What ifs?" So many unanswerable questions. There is nothing you can think of that has not already been thought of.

Just be there. Listen. Pray.

"Are questions ever appropriate when learning of a death? The only questions that might be appropriate are: “Can you tell me where I can get information on the funeral, memorial service, or visitation?” “Is the family accepting visitors?” “Can I bring a dinner?” “Where can I make a donation in their memory?” Or, “Is there someone I can call to offer my help?” written by Robbie Miller Kaplanauthor of How to Say It When You Don't Know What to Say,

Dreamland

I have started to write this a few times. I have had some pretty severe pain the last couple of treatments. It does not help that the gentleman next to me is asking just about every 4 minutes if he can go home, if he can leave, why is he here, why he can't go home, why he is being held hostage.

Arrrggghh!!!!!!!!!!!

Sunday was Mother's Day and our Wedding Anniversary. It was going ok, up until about 9:00pm. When I normally would have the kids in bed. We learned that my brother-in-law killed himself. This is a shock. A true tragedy that we have no answers for. Why? I don't know. I never believed he would. He has three daughters, two sisters, a brother and many nieces and nephews, friends and other relatives.... so many people who love him, who cared, who helped him. They tried to help. They did everything that they could. No one thought this would really happen. No one wanted this. Why? I wish I could answer. I wish I could make it better. I wish many things. In my dreams, everything is ok. My kidneys work, we have enough money to make ends meet, my husband is healthy, my kids are happy, my house looks perfect, the lawn never has to be mowed, weeds don't exist, messes clean themselves.

I want to move to Dreamland.

Dialysis Patient Support Group

Hampton Roads Dialysis Patients Support Group
This is a network for patients, friends, and family of dialysis patients.
If you live in Virginia, please come out to the Mary Immaculate Conference Center. On McManus Blvd in Newport News.
Directly across from the main entrance of the hospital.
email: hrdpsgroup@yahoo.com

Darryl Chapman 757-871-7794 and Toriano Nelson 757-310-6409

It can be tough to go through dialysis. Many patients feel like their lives revolve around their treatments. It is great to get together and share information, hints and tips. Please come out and join us. I know the guys have worked hard to put this together.

---- I left a message for the transplant people. There is all kinds of information on the Sentera Transplant webpage. I hope that talking to them will make me more at ease about all this. I would feel better if Dr. Moy were my surgeon.

And four hours it is

Well, we had rounds today. The nurse practitioner, Linda, came in to do her rounds. I like her. She is very pleasant and she does so well remembering us and our families. I asked if my time could be shortened. Not yet. She wants to see that my blood is consistently getting cleaner.

I want to have more time for me and my family. But, I want to live too. Right now, she is not ready to let me cut my time. I will continue to watch my liquid intake and my diet. I am sure that she will cut me back to 3 1/2 hours soon. I really feel like I am doing very well.

Been getting a little nauseated when I try to eat after dialysis. Maybe it is the vicodin during treatment? I had a junior burger from sonic Wednesday before I got on, the took the pills. I did not get sick when I ate dinner. A nice change from the previous 3 treatments.

I have been so crazy busy at work this week. I need to call the transplant coordinator first thing on Monday. I have to reschedule the testing. Not completely sure what all it consists of. I know the bottom line is; am I healthy enough for the surgery? Will I be compliant and take all my meds?

I will be both. But I am scared of the surgery. I also am a little bothered by the idea of some other person's kidney floating around in my body. It just seems so weird to me. Something that is part of another human being will be surgically put into me. Am I crazy? Or does this seem weird to anyone else?

What is it?

So, what exactly is dialysis? For the actual medical terminology, you could check out one of the links here. Or for the dialysis patient version, keep reading.

Because my kidneys felt over-worked from too many Coca-colas, they decided to go on strike. My kidneys completely shut down. The dialysis treatments are usually 3 days a week. Treatment times range from 3-4 hours. Although, there is one man at our center who runs 4 hours daily, six days a week. Sure am glad that is not me!

Mine is Monday, Wednesday, Friday for four hours. I am hoping to get it cut soon. The nurse or technician cleans the area where the catheter, graft or fistula is located. For a graft or fistula, they take two needles and insert them in the arm or leg at the 'site.' Two clear lines of tubing are attached to the needles, or for a catheter patient; to the tubes protruding from the site. These lines are attached to a dialyser. This machine takes a small amount of blood at a time from one tube, cleans it and returns through the second line.

This process takes between three and four hours. "Normal" kidneys work 24/7. Dialysis patients usually go to the center 3 times a week. Some patients do home dialysis, or nocturnal dialysis. While these are valid options, I did not feel that they were the best treatment option for me. My husband and I have three very active boys. They are just not able to give mama enough alone time to do what needs to be done for home "PD."

At the end of the treatment time, another nurse or technician will remove the needles. The bandage must be held for several minutes, due to the size of the needles bleeding can occur. After the site has stopped bleeding, they place a folded piece of gauze and lots of tape over each site. We are supposed to remove the tape the following day.

For a catheter patient, they will remove the tubing and re-wrap the tubes protruding from the chest.

Take one last set of vitals and weigh. Then they send us home. We will be back so they can stab us with those gigantic needles soon. We have to, For a renal patient life is dialysis. Stopping generally means death within a matter of weeks. The gunk builds up in the bloodstream, not a pleasant thought. Think about the task of your kidneys!

DaVita means He/She gives life. This is most appropriate given the nature of the dialysis treatment and what occurs here in this center. This center, and identical ones all over the world, literally give each of us the ability to continue with daily life.

Treatments make me tired, Sometimes unable to eat or sleep that night. But, what is a skipped meal or a tired feeling when the alternative is to be dead?

I hope to draw attention to this disease and encourage people, especially those at high risk to be screened for kidney problems. Early detection, diet changes and a healthy lifestyle could keep you from sitting next to me 3 days a week.

Life is interesting. We define ourselves by the job we hold, our relationship status, the school we go to, the clubs we join, church we attend, places we go: Then something happens and we find ourselves defined by a medical condition. Mine is End Stage Renal Failure. My life is now revolving around this 4-hours a time, three days a week, treatment. My diet is changed, my lifestyle is changed, the people I spend time with has changed. The people at the center literally keep my life sustained.

My first dialysis treatment was somewhat of a strange experience. Since I had been told it would be four hours long, I brought a book. I barely read. I was freezing cold, even though they had given me a blanket. I read the paperwork they gave me. Everyone was nice, just like at the hospital, everyone introduced themselves as they came to check vitals and such. I did not pay much attention to my surroundings the first day. I was still dazed and somewhat confused by the whole process.

By the end of the first week on dialysis, I began to drive myself to and from treatments. I returned to work full time. Coming straight from work to the dialysis center, I learned to keep my dialysis bag in the car. I learned the names of the staff and nurses. I began to question other patients about their accesses, their treatment times, who I should want to stick me. I watched the technicians and nurses, and asked questions. I read the newsletter and all information given by the dietician and other staff.

I have crocheted, read, worked from a laptop, played on the internet and talked, (they probably would like for me to shut up and sleep!). I envy the people who can sleep on the machines. I just can’t do it. Too noisy in here.

About 6 weeks into my treatment, there was a new girl on my shift. She was so scared. And she appeared to be about my age. I wanted to talk to her, but the nurse was going over her treatment plan with her. I was trying to do my work and not appear to be eavesdropping. But I was anxious for him to finish up so I could talk to her. I guess she asked if it was always “this bad.” Todd asked me to answer that. I told her that it would get better. Since I was so new to dialysis myself, I was still always reading up on the dos and don’ts. I was happy to share with her what I knew. I directed her to the DaVita website, but she did not have access to the internet. So, I read her some of the information. We talked about our diets, our children, our families.

Due to insurance issues, I still had a catheter at that point. But we were scheduled the same week to go for our consults. I opted for and got, a fistula. She had to get a graft due to vein problems. We both went to Dr. Peter Moy. Personally, I was relieved to see his name on the appointment card. Dr. Moy has been a friend of my boss for some years. I knew he was a good doctor and it made me so much more relaxed about the visit and surgery.

I knew Wendy was sick and that she had had a colonoscopy. She really struggled with the idea of being on dialysis (especially in light of her other medical problems.) She and I talked, at treatments and on the phone during the week. My fistula was ever so slow at healing. Never before have I looked forward to being stuck with a needle! Wendy’s graft was not working. I had to have my catheter replaced 6 times. Infections, slow or no pull, and simply not functioning properly. I was so frustrated at having the catheter, and knowing the risks involved in the long-term use of them, I was very anxious to get it out of my chest. I was thrilled with the decision to use the fistula. The first time was not so bad. I did not like the needles much.

I had to have surgery to tie off a vein that was “stealing” the blood flow from the fistula. After the surgery, my sons liked to put their hand on my arm, they called it my “magic powers.” The “thrill” or sensation when the blood is flowing through the fistula, is strong. My three year old says it sounds like a train. The first couple of weeks after the surgery, I had to use the catheter again. Frustrated at the idea, I pouted about having “this stupid thing in my chest.”

Finally cleared to use the fistula again, I was ecstatic. But the first couple of weeks were miserable. My arm hurt so badly. I cried the entire four hours. Finally, I was told we could schedule to get the catheter out. I was so happy. Now, I could shower and do whatever I wanted. The day I was cleared to take a shower, I stood in there forever. It felt so wonderful. I had been so scared to play with my sons. You know boys are just naturally so rough. Now, I can play “Godzilla” with them again.

I still cry when they stick me with the needles. (They won’t let me use the 17s) J Wendy was in and out of the hospital. When I would visit, I just cannot believe she was my age. She looks much older. Wendy was losing her battle. She was so very ill. My friends have been visiting her while I am at work. Last week, she accepted the Lord as her Personal Savior. I was so relieved, happy and sad. Relieved that she is at peace now. Resting in the assurance of Jesus Christ as her Savior. Happy that she is in good hands and that her children (4 and 14) are in good hands, and Sad. No, Heartbroken that she is dying so young. I was so sure that God was going to work a miracle. That she would be going home.

She has gone Home. But not the way I wanted. She is Home with her Lord and her mother. I know that many others have lost their battle. For those wonderful people and their loving families, I extend a heart-felt hug and the reassurance that their love will never die. For those frustrated at the dialysis treatments, This is our life. Yet, it does not have to define us. I am not a renal patient first. I am a wife, soccer mom, sister, daughter, cousin, friend, cook, teacher, Medical Administrative Assistant and soon to be nursing student.

I have many reasons for staying for my full treatment, taking my medicines, sticking to my diet and listening to My DaVita Team. The most important ones call me “Mama.”

I am so grateful for the people at DaVita. For the way they help us, care for us and put up with our whining - complaining - showing up late - getting blood on the floor - calling them the wrong name - and so much more. Lee, Todd, Bernie, Keisha, Joe, Byanca, Lucy, Ann, Bobby, Kat, Precious and so many others. I know they work hard. They have made a difficult thing so much more bearable.