Happy 2011

Hello all; It has been a long, long time since I have posted anything here. I know, I have made promises in the past, to be more diligent with updates, and will not make any more promises. However, I will try to let my presence be known a bit more often on this blog. Sandra is in remarkably good health considering her condition. She is still in good spirits, although, of course, she wants her life back. She has finally made it to the "active transplant list". Go figure, after 5 years, she has moved up, to anywhere from one to five years waiting time. A couple of months ago, she met with the transplant team at the hospital, and later this month we are meeting with the surgeon. She is trying to keep busy while waiting. Tomorrow, she will start working for the annual fund raising drive for the Kidney Foundation, which she has done every year since she was diagnosed. Last summer was very eventful for us. Ever since Sandra was diagnosed, I have expressed that, if I had the money, I would go anywhere to purchase a kidney for her. Last summer we were approached about participating in a documentary exploring the "organ market in India". The documentary shows both sides of this controversial issue. It was a life changing experience for us. I am so grateful for this opportunity, and humbled. We visited the slums, where it seemed like most women had a huge scar from the removal of their kidney. The film premiered at the IDFA in Amsterdam, and next it will be at the film festival in Vancouver, BC, Canada. Right now I can only share with you, the trailer, and a bit of the history of the film. Hopefully you will get an idea of what it is about. Just follow the link: http://www.themarketfilm.com/trailer.html I wish you all the best for 2011. Cheers, Christina

NEW HOPE WHILE WAITING FOR TRANSPLANT

Hello; I finally have something new to report. On Sandra's last visit to the Kidney Clinic, she got some encouraging news. It seems that there is a new product being tested, that is as close to an artificial kidney as you can get. I have enclosed the link to the site that is promoting AWAK, the new hope for people on dialysis, and to those who are waiting for a kidney. Please let me know what you think. Hugs, Christina

KIDNEY MONTH

Hello; It has been a while, and things have not changed much. Sandra's lab tests keep fluctuating. She feels great one day, and super tired the next, and we are still waiting for a kidney. As march is the national Kidney Health month, I thought I should give you an update. Sandra, and I have been helping the Kidney Foundation for the last two months, to recruit canvassers for its annual fundraiser. We had a fabulous response. We were happy to relate to others about the great job the Kidney Foundation does, as we have personal experience. They were right there when Sandra was diagnosed, with travel, and accommodation expenses associated with our trips to the kidney clinic, a two hour car drive from our home. I am so happy to have met the most wonderfully dedicated coworkers during those two months. I feel I have made life long friends with Teresa (our boss), Audrey, Joann, Pauline, Penny, and Sharon. In an earlier post I mentioned the hardships a parent goes through when suffering from a potentially fatal illness, and can't provide for the extras for their kids. There is usually support for parents with sick kids, but no support for kids with sick parents. Sandra's daughter Kylie is a member of three school bands. The Tour band, the jazz band and the regular band. She is extremely dedicated. This year the tour band is going on a dream trip, that includes Disney Land, where they are to play with the Disney conductor, and a three day cruise to Mexico, and be part of the entertainment. We had managed to to pay for some of the trip (unrefundable), but due to unforseen circumstances were unable to pay the balance. Although my coworker has forbidden me to mention her name, I'll give her initial, J, to say that without her, and her arranging for a very generous contribution from ReMax in Nanaimo, Kylies dream trip would not have happened. I hope you all will give generousely when your canvasser comes to your door.

Learning Something New

The last time at the clinic, we had good news, and bad news. The bad news were that Sandra's remaining kidney functions has deteriorated to the point that they only have half of the output of urine that they had three months ago. The good news are that her hemoglobin values are still so high that the doctor is of the belief that she is getting epo shots, until he checks her records. The kidneys produce a hormone, which in turn prompts the bone marrow to create red blood cells. Most people in renal failure, including "Epoman", to whom I gave a tribute in my last post, has to take Epo-injections to help produce red blood cells. Sandra considers herself lucky so far, as the thought of having to inject herself does not appeal to her. For someone who thought that the kidneys' only function were to filter the poisons out of our system, I am sure learning different.

A Tribute To Epoman

I am deeply saddened today, by the loss of a young man who did touch many peoples lives by his fierce and courageous struggle with end stage renal failure, for the past 13 years. Bill Halcomb, or better known as "Epoman", on the fabulous website he created to bring support and awareness to the horrible disease that finally claimed his life. I have been a member of his website since Sandra was diagnosed, and have met many brave, wonderful people there. The insight, knowledge, and understanding for what "end stage renal failure" really is, has been invaluable to me. Unfortunately, I had not visited the site for a while, and was shocked to find out that "Epoman" passed away on March, 02,07, when I checked in last night. Rest in peace Bill. You have been a great inspiration to many, many people. I know your young son miss you very much, but he will allways be secure in knowing that his dad loved him very, very much, and can be proud of the fact that his father touched more peoples lives, than most of us can ever hope to do. Please visit this great site. http://www.ihatedialysis.com/forum/

First Year On Dialysis

To all those who have followed Sandra's journey, I must apologize for not posting more often. I am almost embarrassed to admit that I had forgotten my user name, and password, and could not access my own blog. Believe me, I tried very hard to retrieve them by following all instructions. As you you can see, I finally managed this "difficult" task. Sandra is still waiting for a kidney. She has celebrated her first year on dialysis, her life saver. So far she has escaped any bouts with peritonitis. That is because the team at her kidney clinic are extremely skillful in training their patients in the importance of extreme precaution, each time when getting ready for dialysis. Otherwise, most people on peritoneal dialysis frequently end up with peritonitis. Sandra has experienced a lot of physical changes since she went on dialysis. She does not fit in to any of her clothes anymore. From always wearing size x-small, 5-7, she is now wearing size large. We can't count the times when she has been asked when she is due. She does not want to go out for a drink, because of all the dirty looks and comments about drinking while "pregnant". She is also very fatigued most of the time. The most difficult for her though, is that she hates having her daughter see her like this. Kylie just turned 15, and that is a challenging age, even under the best of circumstances. It has been very hard, but we have to be grateful that at least there is dialysis. I promise to be more diligent with posting in the future. Love to you all. Christina

Still Waiting

Hello again. As you can see, there are no new posts for a long while. We are still waiting for a kidney. As a mother I am very impatient, to say the least. Sandra is still hanging in there. The dialysis is keeping her as healthy as can be expected. My worry is that her health will start to decline, and render her too sick for a transplant. It's funny how you get used to things. If you had asked me two years ago about how we would have been able to deal with a family member being on dialysis, and waiting for a transplant, I would not have been able to give you an answer. Now, all I can say, is that we can adjust to anything no matter how foreign it may have seemed before we were confronted with it. My greatest wish is that Sandra gets a transplant so that she can get back her life. She is too young to have to go through this. But I guess we have to be grateful that she at least has dialysis to sustain her life. I hope you all forgive me, I just needed to vent.

It has been a long time

It has been a while since an update. My last post was about being hooked up to a machine. Well, Sandra choose to go off the machine because it caused her to wake up in severe pain every time it was draining. It continued to drain even though there was nothing left. They tried to adjust it without any success, so she finally gave up, and is now back on manual pd. In many ways it is a great relief, because in addition to the pain, she was stuck to the machine for ten hours every night. Which meant that she would either have to go to bed and hook up very early every evening, or she had to stay in bed to late in the morning. Sandra feels she has more control with the manual, even if she has to do four exchanges per day. The machine sounded like the perfect alternative at first, but sadly it did not turn out that way. We have not heard anything in regards to potential donors lately. Oh, how I wish there was a perfect match out there somewhere. In the ten months since the diagnosis, there has been a big change. Sandra no longer fit into any of her clothes, and short of maternity wear, nothing will fit around her belly anymore. She can't carry anymore than five pounds at a time, she can't stand long enough to cook a meal, or wash dishes. It's fortunate that I work nights, with the days free, so I can help her with those things. However, Sandra is still healthy enough to be able to handle surgery if a kidney would become available now, but if she gets any sicker, she will be taken off the list until she gets better.

Being Hooked Up To A Machine

Friday night Sandra hooked up to the machine for the first time. I wasn't even there when she did it. She is a quick learner. The dog (Buddy) went crazy, I think he thought that the machine was attacking Sandra, because there are several beeps before the machine gets going. I guess we have to give it a name, as it will be a part of our family until Sandra gets a transplant. Any suggestions would be appreciated. If/when she travels, the only thing she will need to take with her is the cycler/machine...it is about the size of a photo copier. The company that delivers her supplies, will deliver anywhere in the world. We were worried about her not being able to go out at night anymore, but she can still do her manual dialysis in case she goes out. Or she can set up everything on the cycler before she goes out, so everything is ready for her to hook up when she gets home. There is not an exact schedule, as long as she dialyses for ten hours every night. Another change is that she is now only carrying one liter of fluid in her belly during the day, instead of two, which will make the size of her belly go down a bit and, make her feel less bloated. Poor thing, she looks like she is about four months pregnant. It does not take much for someone as tiny as Sandra is. Until next time, Christina. PS. don't forget to suggest a name for our new family member.

Latest Experience On The Learning Curve

Yesterday, Sandra, and I spent the whole day at the Home Dialysis Clinic. As Sandra has now graduated to the Peritoneal Dialysis Cycler, the Cycler will do the dialysis at night while Sandra is sleeping. She will be hooked up to the machine for ten hours every night. The whole training experience was a bit overwhelming, and intimitating for me. It started off with a lot of tests, which left Sandra in severe pain. At one point she couldn't even breeze. I almost felt like running out of the room, as it is so hard to see her in so much pain. I also have to mention that Sandra's veins are very small, so every blood test is a procedure in it self. They usually start out trying to get blood from the arm, but end up having to do it in her hand....one time they even had to do it from her groin. Last week, she got all the supplies delivered, there is 90 boxes in the house now, but they still had to take 30 back, as there is no room. There are boxes everywhere, including the bedrooms, and upstairs hallway. She is supposed to have a delivery every six weeks, but if this is the size of it, she will have to switch to bi-weekly as Sandra does not want to have her daughter reminded of her disease every step she takes in the home. I want you all to know that in spite of all this, Sandra is a real trooper, and as sweet as ever.

At The Transplant Clinic

Last Tuesday we went to the transplant clinic to meet the transplant team. The news was good as far as they were concerned. Sandra does not require any more tests to find out if she will be able to handle transplant surgery. The only thing left to do, is to test her blood for antibodies which determines how well her body will tolerate a new organ, without rejecting it. Antibodies are created by prior blood transfusions, or in women, prior pregnancies. The antibodies can cause the body to reject an organ, even if the organ comes from someone who is a blood match with the recipient. We also had some very good news, we were told that there are a few potential living donors for Sandra. However, we can not be told who they are, due to confidentiality policy. Sandra, being who she is, is now very concerned about the potential donor. She asked the doctors' how long she would be able to stay on dialysis, because what if the donor gets sick, and needs his/her kidney in the future, or if a family member of the donor would need a kidney further down the road? She was told that now is the best time for her to have the transplant, before she gets any sicker, or suffers all the complications that comes with dialysis. She was told that she will have at the most, a honeymoon period, on dialysis for two years. Dialysis is never a cure, neither is a transplant, but in Sandra's case, a transplant is the best/only option. Hopefully, the potential donors' follow my updates here, so I can thank you from the bottom of my heart.

Decline In Cadaveric Donors In Canada

In 1995 there were 437 diseased organ transplants in Canada. In 2005, there were only 414 diseased organ transplants. It has a lot to do with advanced medical technology. But, at least here in BC, where 85% of the population would like to be an organ donor, only 13% are registered, because they think that simply putting a sticker on your drivers license will qualify you as a donor. There is a link here to the transplant society in BC where you can go and get properly registered as an organ donor.

A Visit To The Clinic

Yesterday Sandra,and I went to the kidney clinic. We are always a bit apprehensive, because you never know what else they are going to find. However, mostly we had good news. Sandra's kidney functions have not changed since she started dialysis....between 10%-13%, which shows that so far, the dialysis works. The doctor is a bit worried about her blood sugar count, but we don't know why. Who would not have a high blood sugar count carrying 2 liters of glucose solution in the belly at all times? They still can't figure out why she stopped menstruating, as that is usually not a side effect of dialysis. On the 4th of July, we are going to the transplant clinic in Vancouver. I am again going to try to convince them to let me donate my kidney to Sandra. On the 27th. we are back to the kidney clinic in Victoria for cycler training. All this traveling can be hard on you at the best of times, never mind when you are not well.

Time For A Laugh

I find that a bit of humor always helps during dark times. Watch this hilarious video. I laughed so hard, my sides hurt. Evolution of dance: http://www.youtube.com/watch?v=dMH0bHeiRNg

The Disease Is Taking Its Toll

I have been so busy trying to advocate for Sandra, that I have not allowed the full impact of her disease to grab hold of me. Whenever I start getting depressed I try to do something to make it easier for Sandra. However, sometimes it is very hard. Especially when I see how desperately she tries to not have her disease have an impact on her daughter's life. Sandra used to be the mother who always volunteered to drive/pick up Kylie and her friends to, and from different functions, and there have always been a lot of friends in their home. Now, Sandra often have to say no, as the illness is taking its toll. Last night I cried myself to sleep. Sandra has to fill out some forms explaining the things she has had to give up due to her illness, and she asked me to help her with it. It broke my heart to actually sit down and remember all the things she used to be able to do without it exhausting her. The main change is of course, that she can no longer work. However there are so many other things, including ordinary household chores, socializing with friends....she used to love dancing for example. Everyone could always count on her to fix any computer problem they might have, but now she can only sit by the computer for short periods at a time. When it comes right down to it, her whole life has changed. It is all so unfair. But then, for whom would it be fair? I know of a little four year old girl who is going through this, and my heart goes out to her and her family. I wish I could be more positive, however, this is reality.

How Is Sandra Coping?

Considering everything, Sandra is doing quite well. We have had a few scares. The drainage bag is supposed to be clear, or it could be a sign of peritonitis. A few times it has looked a bit cloudy, just enough to make us wonder if we should call the PD team. But so far it is more clear than cloudy. She has also noticed that she does not have to urinate as often she normally does. They are telling us that is normal, as the dialysis takes care of the wastes. A huge change is that her periods seems to have stopped. Which is upsetting for a young woman. Usually the periods stop before dialysis, but returns after dialysis is started. In Sandra's case it is reversed. Sandra still experience pain at times. Mostly, now it is because she forgets to drain the tube of air, and she ends up with severe pain in her shoulder for up to 24 hrs. That usually happens when she is rushed during an exchange. Like picking her daughter up from somewhere.

Soon Ready For The Cycler

Sometime this month Sandra will train to dialyze through a nocturnal cycler. This means that a machine will do the dialysis through the catheter in her belly for 8-10 hrs. at night. She will not have to do the four exchanges per day. And hopefully she will not have to walk around with 2 liters of fluid in her belly all the time....it's like having a 4lb baby in there. As she is a night owl, Sandra is a bit worried about being hooked up to a machine for all those hours every night. However, we may find a way to get around that, by disconnecting between dwells. There is so much we don't know yet, but we are learning as we go along. I would like to send my love and appreciation to those who have expressed their wish to be tested as a potential donor, and to those who are currently undergoing testing. You are offering the ultimate gift. The process takes a long time, up to 9 months, and is nerve wrecking for everyone involved.

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