I get asked this a good bit, because on the outside I don't look sick. I hate to say that I am "sick", but in reality....I am.
Sometimes I sit back and want to scream "THIS SUCKS, I AM ON THE DAMN KIDNEY TRANSPLANT LIST BECAUSE OF SJOGRENS"! *sigh*
But I can't change what has happened to me. I can't make the decision to break it like a bad habit.
I can only make the decision to be positive and accept the things I can not change.
So, what does it feel like to have Sjogrens?
The best way I can describe is it is like the feeling you get when you come down with the flu. Your body aches and you are exhausted ....now imagine that everyday....24/7. You get use to it and some days are better than others.
The worst is the fatigue, but as I said before Chronic Kidney Disease can make you feel the same way. Weak muscles, fatigue, shortness of breath, and a general feeling like you are coming down with something.
What are some of your symptoms? What is the hardesr for you?
Monday, March 30, 2009
Friday, March 27, 2009
I am waiting for my trip
I need to pack my suitcase.
For my trip.
A trip one day....
hopefully soon.
It is the suitcase that needs to be packed with the essentials for when I get the call from MUSC in Charleston. If I get a call today...or even tonight...I'm screwed! I have only a tube of toothpaste in that suitcase. At least my teeth will be cared for.
I need to add some comfy spring/summer clothes, waterless shampoo (anyone suggest a good one because there will be no showers after transplant for a bit-ugh!) A few undies and 2 designer hospital gowns.
Yep, that's right. Designer hospital gowns. The same ones Jennifer Lopez had when she delivered her twins. I don't want to look like Shrek after the transplant and I got them for 75% off at work. After all they claim studies show that when you look better...you feel better and heal faster. Am I gullible? Probably...but I will be gullible in style!
I think I'll pack Mama Mia with a portable DVD player to watch. I love that movie and as they wheel me in for surgery I think I'll sing "Take A Chance On Me"!
I can't wait to see the look on their faces!
Tuesday, March 24, 2009
SSA and SSB antibodies
I have a hard time trying to figure out what these little three letter words mean in the scope of bloodwork for Sjogrens patients. I have been doing a bit of research and my conclusion is this:
Antibodies SSA and SSB complexes are found in the circulation of patients with Sjogrens's syndrome, mainly in those with the primary form of the syndrome. Their presence is associated with long disease duration, earlier disease onset, parotid gland enlargement, systemic manifestations and also with hypergammaglobulinemia, rheumatoid factors and monoclonal type II cryoglobulins. While anti-Ro (SSA) antibodies are not specific for SS, anti-La (SSB) antibodies seem to be specific. However, a few patients diagnosed with SS do not necessarily test positive with SSA and SSB. Does this mean that SS has not been around as long for them?
Confusing?? yep!
John Hopkins Lupus Center describes them this way...
Anti-Ro/SSA and Anti-La/SSB Antibodies
October 15, 2008
Anti-Ro/SSA and Anti-La/SSB are antibodies found mostly in people with systemic lupus (30-40%) and primary Sjogren’s syndrome. They are also commonly found in people with lupus who have tested negative for anti-nuclear antibodies. Anti-Ro and anti-La can also be found in other rheumatic diseases, such as systemic sclerosis, rheumatoid arthritis, and polymyositis, and are present in low titers in about 15% of healthy individuals. These antibodies are not highly specific for systemic lupus, but they are associated with certain conditions, including extreme sun sensitivity, a clinical subset of lupus called subacute cutaneous lupus erythematosus (SCLE), and a lupus-like syndrome associated with a genetic deficiency of a substance called complement, a system of proteins that helps mediate your body’s immune response. In addition, babies of mothers with anti-Ro and anti-La antibodies are at an increased risk of neonatal lupus, an uncommon condition that produces a temporary rash and can lead to congenital heart block. Therefore, women with lupus who wish to become pregnant should be tested for these antibodies.
I know with my last pregnancy I my SSA & SSB was monitored greatly and I had 29 ultrasounds with them looking at Braydon's heart to be sure it was developing properly. God answered our prayers and he has a perfect little heart. SO does my oldest.
Do you know anything else about these two antibodies?
Antibodies SSA and SSB complexes are found in the circulation of patients with Sjogrens's syndrome, mainly in those with the primary form of the syndrome. Their presence is associated with long disease duration, earlier disease onset, parotid gland enlargement, systemic manifestations and also with hypergammaglobulinemia, rheumatoid factors and monoclonal type II cryoglobulins. While anti-Ro (SSA) antibodies are not specific for SS, anti-La (SSB) antibodies seem to be specific. However, a few patients diagnosed with SS do not necessarily test positive with SSA and SSB. Does this mean that SS has not been around as long for them?
Confusing?? yep!
John Hopkins Lupus Center describes them this way...
Anti-Ro/SSA and Anti-La/SSB Antibodies
October 15, 2008
Anti-Ro/SSA and Anti-La/SSB are antibodies found mostly in people with systemic lupus (30-40%) and primary Sjogren’s syndrome. They are also commonly found in people with lupus who have tested negative for anti-nuclear antibodies. Anti-Ro and anti-La can also be found in other rheumatic diseases, such as systemic sclerosis, rheumatoid arthritis, and polymyositis, and are present in low titers in about 15% of healthy individuals. These antibodies are not highly specific for systemic lupus, but they are associated with certain conditions, including extreme sun sensitivity, a clinical subset of lupus called subacute cutaneous lupus erythematosus (SCLE), and a lupus-like syndrome associated with a genetic deficiency of a substance called complement, a system of proteins that helps mediate your body’s immune response. In addition, babies of mothers with anti-Ro and anti-La antibodies are at an increased risk of neonatal lupus, an uncommon condition that produces a temporary rash and can lead to congenital heart block. Therefore, women with lupus who wish to become pregnant should be tested for these antibodies.
I know with my last pregnancy I my SSA & SSB was monitored greatly and I had 29 ultrasounds with them looking at Braydon's heart to be sure it was developing properly. God answered our prayers and he has a perfect little heart. SO does my oldest.
Do you know anything else about these two antibodies?
Wednesday, March 18, 2009
Joyride with training wheels...
Fingers are clenched. I have that nervous yet excited feeling in the pit of my stomach. I finally made it up that huge first upward climb in this transplant roller coaster....you know the one that starts off climbing ever so slowly...and then it starts the big ride of a lifetime.
I yell at the top of my lungs making every face imaginable...I smile...I frown...I even laugh.
YES, it is official I am "active" on the transplant list! I have been listed as "inactive" the past 3 1/2 months. I am happy to report that the cocktail of drugs to get me prepared for transplant has worked in bringing my ANA titer down along with some other numbers.
And yes....I will have many ups and downs like a rollercoaster the next few months...perhaps years. BUT look...I have my training wheels on and my helmet is fastened on my head. Tee-Hee
Want to join my joyride??
Sunday, March 15, 2009
Fingers just a tappin...
I still have not heard if I have been moved to the active list yet. I know that as soon as I am, testing will continue with the live donors. I need to get in touch with my living donor coordinator. I want to know if my insurance will only test one living donor at a time with all the blood matching or will they do multiple donors at once? I really am starting to get anxious. I just want to move on and get this done. At least know the ball is rolling....it would be great to set up a transplant date for this late spring/summer.
Enough about my LITTLE worries. I have a friend named Pam who is undergoing 4 to 5 heart bypasses tomorrow. She had a kidney transplant a little over a year ago and we want her kidney and heart to rebound fast. Please pray for her. She has helped me so much with the questions pertaining to kidney transplant.
Enough about my LITTLE worries. I have a friend named Pam who is undergoing 4 to 5 heart bypasses tomorrow. She had a kidney transplant a little over a year ago and we want her kidney and heart to rebound fast. Please pray for her. She has helped me so much with the questions pertaining to kidney transplant.
Wednesday, March 11, 2009
Introducing Bob
Here is a great blog about organ donor awareness and transplantation. It is called Bob's New Heart He is fabulous with writing about the latest news in the organ donation/transplant forum. Definitely worth the visit to his site. The entire following entry is his latest post. Admittingly, I am having a dry spell with the writing on here. LOL All is well and still just waiting for the final word of being listed as "active" on the transplant list vs. "inactive".
The month of March is National Kidney Month and March 12, 2009 is World Kidney Day. These dates are significant because they mark the beginning of a commitment by the National Kidney Foundation (NKF) to “End the Wait” for a kidney transplant in the United States in the next decade. This effort needs and deserves your support. Thousands of lives depend on it. At this very moment nearly 80,000 of the 101,000 people on the national transplant list are waiting for kidneys, many of them will die waiting.
There are two sources for kidneys, 1) living donors and 2) deceased donors. While only about half of all donated kidneys come from living donors medical evidence indicates better outcomes for recipients of these life saving gifts. It is also noted that if a living donor lives a healthy lifestyle he/she can have a normal lifespan with just one kidney.
I’m going to let the NKF speak for itself in this blog. I will offer little comment other than to say the organization has committed itself to developing almost every avenue to increase the number of kidneys available for transplant. They have wisely avoided addressing the issue of paying donors for their organs. I will do that in a future blog.
In essence, NKF is advocating a multi-faceted collaborative initiative. What follows are excerpts from that initiative. http://www.kidney.org/news/end_the_wait/index.cfm
“Rather than focusing on single issue tactics, these broad based actions will achieve the common goal that everyone agrees on – ending the wait for a transplant. It uses proven and tested strategies, each of which is already successful in some areas and which should now be implemented everywhere. (The full list of NKF’s Recommendations is attached and is available on the NKF website www.kidney.org)
We can improve the outcome of first transplants, reducing the need for a return to the waiting list.
We should pay for immunosuppressive drugs for the life of the recipient.
The loss of a transplant is one of the leading reasons for starting dialysis. Reducing that problem will make more kidneys available.
We can improve the health of recipients, transplant them earlier when their condition is better, educate them about their options and ask them sooner, “Do you have a donor?”
We can also increase the number of organs available from deceased donors.
We can improve the care of donor families in hospitals and support them while they are with their loved one.
We can increase the use of proven techniques such as extended criteria donors and donation after cardiac death throughout the country.
And, we can make sure that donor families don’t incur any additional costs because of the donation, including extra funeral costs.
Increasing the number of living donors is vital to meeting our goal.
Living donors and potential donors should receive state-of-the-art care and never suffer financially because of their donation.
We can cover all the costs of donation, including lost wages.
We can track donor outcomes and make sure they have health care coverage and life insurance for anything that happens related to the donation.
And, a program of matched donation should be available throughout the United States.
Living donors and potential donors are our constituents, too. NKF will establish a Living Donor Council to support their needs. They should always have the best information about the donation process to help them make decisions that are right for them.
.
We also can improve the American system of organ donation and transplantation. Many challenges are resource-based. We can increase the number and skills of people working in transplant programs nationwide to reduce the time it takes to complete the living donation process. All potential living donors should have access to laparoscopic nephrectomy.
Summary
This can be done. It won’t be easy but the goal is worth the effort. We can End The Wait! We can leave existing laws as they are and write new ones that address the whole problem. We can have a dramatic impact on the health of all our patients and our country.
The National Kidney Foundation will commit itself to leading the effort. If the community responds and reaches above individual priorities and single issues, the goal can be met. The challenges are many and the work will be hard. But, it’s the only way to do what our patients need us to do: END THE WAIT!”
Please comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be a donor you may have saved or affected 50 lives.
Please read and comment on my World Wide Issues blogs on http://blogsbybob.wordpress.com. Also…visit and join my Facebook site, Organ Transplant Patients, Friends and You at http://tinyurl.com/225cfh OR — my Facebook home page http://www.facebook.com/home.php
The month of March is National Kidney Month and March 12, 2009 is World Kidney Day. These dates are significant because they mark the beginning of a commitment by the National Kidney Foundation (NKF) to “End the Wait” for a kidney transplant in the United States in the next decade. This effort needs and deserves your support. Thousands of lives depend on it. At this very moment nearly 80,000 of the 101,000 people on the national transplant list are waiting for kidneys, many of them will die waiting.
There are two sources for kidneys, 1) living donors and 2) deceased donors. While only about half of all donated kidneys come from living donors medical evidence indicates better outcomes for recipients of these life saving gifts. It is also noted that if a living donor lives a healthy lifestyle he/she can have a normal lifespan with just one kidney.
I’m going to let the NKF speak for itself in this blog. I will offer little comment other than to say the organization has committed itself to developing almost every avenue to increase the number of kidneys available for transplant. They have wisely avoided addressing the issue of paying donors for their organs. I will do that in a future blog.
In essence, NKF is advocating a multi-faceted collaborative initiative. What follows are excerpts from that initiative. http://www.kidney.org/news/end_the_wait/index.cfm
“Rather than focusing on single issue tactics, these broad based actions will achieve the common goal that everyone agrees on – ending the wait for a transplant. It uses proven and tested strategies, each of which is already successful in some areas and which should now be implemented everywhere. (The full list of NKF’s Recommendations is attached and is available on the NKF website www.kidney.org)
We can improve the outcome of first transplants, reducing the need for a return to the waiting list.
We should pay for immunosuppressive drugs for the life of the recipient.
The loss of a transplant is one of the leading reasons for starting dialysis. Reducing that problem will make more kidneys available.
We can improve the health of recipients, transplant them earlier when their condition is better, educate them about their options and ask them sooner, “Do you have a donor?”
We can also increase the number of organs available from deceased donors.
We can improve the care of donor families in hospitals and support them while they are with their loved one.
We can increase the use of proven techniques such as extended criteria donors and donation after cardiac death throughout the country.
And, we can make sure that donor families don’t incur any additional costs because of the donation, including extra funeral costs.
Increasing the number of living donors is vital to meeting our goal.
Living donors and potential donors should receive state-of-the-art care and never suffer financially because of their donation.
We can cover all the costs of donation, including lost wages.
We can track donor outcomes and make sure they have health care coverage and life insurance for anything that happens related to the donation.
And, a program of matched donation should be available throughout the United States.
Living donors and potential donors are our constituents, too. NKF will establish a Living Donor Council to support their needs. They should always have the best information about the donation process to help them make decisions that are right for them.
.
We also can improve the American system of organ donation and transplantation. Many challenges are resource-based. We can increase the number and skills of people working in transplant programs nationwide to reduce the time it takes to complete the living donation process. All potential living donors should have access to laparoscopic nephrectomy.
Summary
This can be done. It won’t be easy but the goal is worth the effort. We can End The Wait! We can leave existing laws as they are and write new ones that address the whole problem. We can have a dramatic impact on the health of all our patients and our country.
The National Kidney Foundation will commit itself to leading the effort. If the community responds and reaches above individual priorities and single issues, the goal can be met. The challenges are many and the work will be hard. But, it’s the only way to do what our patients need us to do: END THE WAIT!”
Please comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be a donor you may have saved or affected 50 lives.
Please read and comment on my World Wide Issues blogs on http://blogsbybob.wordpress.com. Also…visit and join my Facebook site, Organ Transplant Patients, Friends and You at http://tinyurl.com/225cfh OR — my Facebook home page http://www.facebook.com/home.php
Tuesday, March 3, 2009
A bit on the tired side
I am having a few days of being fatigued. I think this it is mixed with laziness. Sometimes I wonder if I am being flat out lazy or if I really am exhausted.
Is there a difference? Yes, I think there is most of the time....but every once in awhile I feel it is a strange combination of both. I feel that right now.
Do I listen to my heart and rest?
Do I listen to my head and know that if I just get going I will be ok? (for the time being)
It is a tricky situation. Anyone that has an autoimmune disease or CKD knows what I am talking about. I feel guilty if I listen to my heart. I have responsibilities like my awesome children, great job, and loving husband. If I listened to my head I may pay for it dearly the next few days.
I guess I will compromise with myself.....it is a never ending battle.
Is there a difference? Yes, I think there is most of the time....but every once in awhile I feel it is a strange combination of both. I feel that right now.
Do I listen to my heart and rest?
Do I listen to my head and know that if I just get going I will be ok? (for the time being)
It is a tricky situation. Anyone that has an autoimmune disease or CKD knows what I am talking about. I feel guilty if I listen to my heart. I have responsibilities like my awesome children, great job, and loving husband. If I listened to my head I may pay for it dearly the next few days.
I guess I will compromise with myself.....it is a never ending battle.
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