Hemodialysis Access "Fistula"

As I have mentioned before, there are two kinds of dialysis, Hemo, and Peritoneal. Sandra's doctors' decided to prepare access for both, just in case one didn't work, the other would. At that time we had only heard of Hemo, which is a very scary prospect for someone with needle phobia. Peritoneal sounded barbaric at the time. However, it would have to be one or the other. To create a "fistula" for Hemodialysis, they made an incision of about 2 inches on her lower arm, and joined an artery, and a vein. http://kidney.niddk.nih.gov/kudiseases/pubs/hemodialysis/#how/ The fistula needs to mature for several month. You can tell if it is working, by feeling a hum underneath your skin, and when you put your arm to your ear, you will hear a whooshing sound. The fistula will also grow, so that you will have a lump on your arm. Well, the day before we went for Peritoneal dialysis training, her fistula stopped working. Sandra had been very sick, and in a lot of pain after the surgery for the catheter into her belly. The doctors think that the fistula failed because of a drop in her blood pressure due to her general health. If/when she needs Hemodialysis, they have to create a new fistula. Now, she is experiencing a lot of pain on the access site. It seems to be getting worse every day, and now it is also swelling up. It is so hard to see her like this. The pain from the catheter in her stomach is almost unbearable sometimes. Oh, how I wish I could take her pain away from her.

How Could I Have Forgotten?

How could I have forgotten the most important issue of all? The blood type! Sandra is a type 0+ blood type. Someone with type 0 is a universal donor, which means that people with other blood types are not limited to their own blood type, but can also receive an organ from a type 0 donor. However, a type 0 recipient is restricted only to a type 0 donor. That is why the waiting period for a transplant is a lot longer for someone with type 0 blood group.

A Bad Day

Today has not been a good day for Sandra. Ever since she had her Peritoneal catheter inserted in her abdominal cavity, she has experienced pain. At times it has been so bad that she is afraid that she won't be able to continue with all this, but of course, she has no choice. Last night, and this morning the pain was quite severe. We think that it is because the catheter is touching the organs inside her belly. She is also really worried about her finances. When she called social services a month ago, to ask how she would go about applying for assistance when her EI runs out, she was told to call one week before her last payment, to make an appointment. They usually require that you have looked for work for three weeks before you even get in to see anyone. However, considering the circumstances, she was told to ask for an emergency appointment. But when she called, the woman told her that she could not see this as an emergency. She also told Sandra that her rent of $700 per month is too high, as she will only get $800 per month. She asked why Sandra can't work, and when told that she is on dialysis, and waiting for a transplant, the women asked if this was a long term illness. Judging from the woman's tone of voice, and what she said, Sandra is worried that she won't get anything when she goes for her appointment on June15th. It is horrible how people are treated when they need help. You are treated like a criminal, the woman even had the audacity to inform Sandra that they will perform a third party investigation before her appointment. I know they must have rules and regulations, but can't they show a bit of humanity?

Single Parent On dialysis

Most people on dialysis in our community are elderly. We have tried to find a support group for Sandra's daughter Kylie, where she can vent. However, because of the age of the other patients, there is no one with young children. Her moms illness is starting to take its toll. Sandra has always been a good provider for her daughter, but with her diagnosis came a 45% cut in income. Sandra could not continue the work she was doing, and had to go on medical Employment Insurance. Today Sandra is in tears, her EI runs out in a couple of days, so she will have to apply for Social assistance, which means that she and her daughter will be far below the poverty level. I wish I could help her more financially. However, in all other areas, I am fully committed. Kylie is still dealing with it quite well. She even told her mom that she didn't need a birthday party on her 14th birthday, May 13th., so the family combined her birthday and mothers day and had a get together. It is so sad that illness, and poverty often goes hand, in hand. Kylies father live in Europe, and has never supported his daughter.

Dialyzing At Home

Sandra has done her first 3 days of dialysis at home. My heart breaks for her every time she goes into the room to do an exchange. Not one word of complaint. I have told her to think of this as a temporary solution, and that it will all be over once she has a transplant. Peritoneal dialysis is the best, and least intrusive method of dialysis for those who qualify. From what I understand, certain conditions exclude some patients from this method. Their only option is then Hemodialysis. However, a person cannot be on Peritoneal Dialysis indefinitely as the membranes of the peritoneal cavity will eventually wear out. We were worried that her daughter would be grossed out by the whole procedure, but fortunately, she has handled it very well. I would like to thank the angels who have offered to get tested as potential donors. Christina

Back from Dialysis training

We are back from 4 days of intensive Peritoneal Dialysis training. The advantage with Peritoneal Home Dialysis is that it is done in your own home. Sandra needs 4 exchanges per day. Her abdominal cavity is filled, through a catheter in her abdomen, with 2 liters (4 quarts) of a special liquid solution, that has to sit, and dwell in her belly for 4 hours, after that it will be drained, and immediately replaced with another 2 liters. She will always have 2 liters of liquid in her abdominal cavity. Every exchange requires that meticulous instructions are being followed. Everyone in the room has to wear a mask, and Sandra has to check her blood pressure every time. She has to adjust the strength of the solution according to her bp readings, and her "dry weight". The risk for peritonitis is very high, so an extreme hand washing regiment is required. We are quick learners, so we finished the training 1 day early. The picture was taken on Sandra's first day of training. A Kidney Patients Organization is updating their brochures, and asked if Sandra would like to be the poster child for Peritoneal Home dialysis, as they are trying to get as many people as possible on it. Although posing for a picture was the last thing on her mind, she felt that if it would help someone else she would do it. Sandra is a real trooper, and I am so proud of her.

A sisters perspective

Hello, my name is Jeanette and I am Sandra's older sister.My sister has been my left arm for the past 4 years. My daughter was in a car accident and has sustained a severe head injury. She is totally dependant for all her care. My sister was my daughter’s caregiver and support person up until she was diagnosed with kidney failure. My sister helped me through some very tough times and I hope that I can be as much of a support for her as she has been for my daughter and me. Sandra and I just got back from the hospital where she had her first peritoneal dialysis. When I picked her up before the treatment I was very scared. Sandra did not look good. Since her operation she has been in a lot of pain. When we arrived at the hospital Sandra was trying to tell them that something was wrong and they just were not listening. When the doctor came and was not listening to her either that was the first sign of what a toll this has been for my sister. She began to cry. My heart just sank for her. After some intense discussion with the doctor he began to listen to her and take her seriously. As she was having her dialysis we actually had a few laughs. Through my daughter's life changing journey we as a family have learned that laughter is the best medicine. There was this gentleman in the next bed that had told the nurse that he was very tired because he just had 6 hours of dialysis. The nurse responded by saying," ya, 6 hours of dialysis would kill anybody". My sister and I looked at each other with wide-open eyes in shock at what she had just said and then we burst out laughing. People say the most darndest things.When we left the hospital after her second day of dialysis I noticed she had pink in her cheeks again and she seemed more relaxed and was eating more. My mother and Sandra are leaving today for 5 days at the hospital and then Sandra will be doing her own dialysis at home. When Sandra and I were driving home the other day she said that this weekend is the last weekend she will not be hooked up to a dialysis machine. My heart is breaking for her and her daughter. Kylie has been through so much in the past few years and now it is her mother. To all who are going through this same journey, my thoughts and prayers are with you. Jeanette (I am posting to Christina's diary, with her permission, while she's away. Ace)

The avoidable cause

I will try to explain what happened to my daughter. She was born with a condition called reflux, this is quite common in young children, and is easily corrected with minor surgery, if detected in time. For her first 6 years of life, we spent a lot of time in the hospital, and in the doctor's office, because of bladder infections and high fevers. She was usually sent home with antibiotics, until the next occurance. The doctors paid no attention to me when I said that I thought it may be something more serious. She was finally diagnosed in Europe, and had her surgery shortly after. We were told that she had some scarring on her kidneys due to repeated infections, but that they would regenerate themselves. We did not think anything about it, until Nov/2005, when she was diagnosed with end stage renal failure. Her diagnosis came about by a fluke. She went to her doctor because the pattern of her migraines had changed. The doctor ordered a cat-scan of her head. From the beginning of 2005, the radiology department demanded a blood test to check the creatinin levels, as the dye they inject can be fatal for someone with kidney disease. That is how we found out that Sandra's kidney functions were only at 13%, they are now down to 10%. The doctor told her that her only chance to a normal life is a kidney transplant. While waiting, she needs to be on dialysis. It takes time to prepare someone for dialysis. To give you an idea, check the links on this blog about hemodialysis, and peritoneal dialysis. They prepared her access for hemodialysis through surgery 3 months ago. However, two days ago it stopped working. She is now in training, at the hospital, for peritoneal. I will be with her in the hospital all of next week, because someone else needs to be trained as well.I am telling you, she is going through hell right now. I think this will be enough for you to read for now. I will continue to post often, to keep you up to date. Christina

Welcome To My Blog

Welcome to my blog. I created this blog out of desperation to find a living kidney donor for my daughter. I also want to use my blog to bring awareness to the pain, dialysis patients suffer while waiting for years, for a kidney transplant. I hope, as people visit this place that they will realize how important it is to sign up as an organ donor. In some communities, it is enough to have a sticker on your drivers license. However, in other places, like my province, British Columbia, Canada, you have to be registered with the transplant society. Although this blog does not look like much right now, there will be a lot of information here as soon as I get more proficient in blogging. Christina