Monday, April 27, 2009

Raynaud's with Sjogrens

Another condition I get associated to Sjogrens is Raynaud's Phenonemon. Again, it is not unusual to get this with any autoimmune disease. Women are affected nine times more than men.

Raynaud's is named for the French physician Maurice Raynaud, who first recognized the condition in 1862. The disease causes an interruption of blood flow to the fingers, toes, nose, and/or ears when a spasm occurs in the blood vessels of these areas. Spasms are caused by exposure to cold or emotional stress. Typically, the affected area turns white, then blue, then bright red over the course of the attack. There may be associated tingling, swelling, or painful throbbing. The attacks may last from minutes to hours.

I am lucky in that I get very mild cases of this from time to time. (mostly winters) On a couple occasions I have had the painful tingling and swelling go up my arms and into my facial area. This has happened when I was extremely stressed. Most of the time it consists of a few fingers throbbing, tingling, and turning a bluish white for a few minutes. This happens when I get cold.

Thursday, April 23, 2009


One of my secondary conditions I occasionally get is called vasculitis. It is not unusual to get this with an autoimmune disease. There are many different types, but over all it is the inflammation of blood vessels. A good reference website is vasculitis foundation. Here is info on the type of vasculitis I was diagnosed with 2 years ago.

Henoch-Schönlein purpura (HSP) is a systemic vasculitis that causes the blood vessels in the skin to become inflamed, causing red spots. When the blood vessels in the skin get inflamed, they can bleed, causing a rash that is called purpura. This rash is typically seen on the lower legs or arms. The specific skin lesion is characterized by the tissue deposition of an immune system product, called IgA immunoglobulin, which is also found in kidneys of patients with a renal disease, called IgA nephropathy.

HSP occurs more often in children than in adults, and many cases follow an upper respiratory tract infection (infection in your sinuses and /or lungs). Half of affected children are under age five, although kidney involvement is more likely to be severe in older children. Compared to children, adults had more severe and frequent kidney involvement.

The first time I had this I was at work and kept thinking I had a never ending charlie horse in my legs. I finally pulled up my pants and saw the rash occurring. My co-worker's father had this one time and recognized it. I had 2 skin biopsies done to confirm. One was on my leg and the other on my belly. I have had a few mild outbreaks with it since then. (2 years ago) The worst was that first 2 months it happened. I am in remission with it, but if I can get a flare up anytime. It is normally treated with prednisone or another immune suppressant drug. ***Update*** A more recent post on a new diagnosis of vasculitis.

Tuesday, April 21, 2009

Transplant on my mind...

I have the whole kidney transplant on my mind lately. It comes in phases. LOL I am having it done at MUSC The following is from their Transplant Center;

The Kidney Transplant program at MUSC performed the first kidney transplant in South Carolina over 30 years ago. Since its beginning in 1968, more than 2000 patients have received kidney transplants at MUSC.

Laparoscopic donor nephrectomy is an integral part of the kidney transplant program. This procedure allows kidney donors to recover faster with less pain, thus alleviating many of the roadblocks that hinder donation. This promising procedure has helped to increase the number of potential donors.

The kidney removal surgery is generally 3-4 hours long. The donor is usually discharged within 48 hours and complete recovery usually occurs in 2-3 weeks. The open surgery alternative can require up to 6-8 weeks of recovery time.

Kidney transplantation is available to adult and pediatric patients suffering with end-stage renal disease. Organs are procured from either cadaveric or living donors.

Following the kidney transplant procedure, the patient is monitored by a multidisciplinary team of specialist. The two non-functional kidneys are left in place. Sometimes dialysis is used post-operatively to assist the new kidney function. The patient is closely monitored, especially in the first three months. Up to 30 percent of patients experience signs of rejection. Medication is carefully adjusted and rejection is usually arrested. The patient is seen by the referring physician for long-term lab work and care. This helps reduce stress on the patient and family while promoting continuity of care.

Sunday, April 19, 2009

a much needed absence

I have been a bit exhausted the past week, but feeling better. I will jump back on the Sjogrens bandwagon soon. I am still waiting to hear if any of my living donors will be a match for me. Seems like it just drags on forever....

In the other blog 2lilpumpkins has some cute pics of Easter and eventually today I'll post my 3 year old's birthday party.

Monday, April 13, 2009

Interesting Story

I was working over on the cancer clinic side at work and they had a news conference about free screenings of cervical and breast cancer for women over 40 that could not afford health insurance. A lady had an interesting story I would like to share...

Her husband had fought in the Vietnam War and was a pilot. He flew many missions with no problems. On his 75th flight exactly he was flying over enemy land and was shot down. Luckily, he was able to escape the jet before it plummeted to the ground.

On the flip side, he was captured and was held a prisoner of war. After many months he was released and came back to his family in the USA.

About 4 1/2 years later after he served in Vietnam, he and his wife were on vacation in Florida eating dinner. A younger man came up to him and said "Captain are Captain X correct"?

He looked at him a bit baffled and said "Yes, I am. And you are"???

"Sir, I was the one that packed your parachute the day your jet was shot down".

They shook hands and greetings.

Her husband later thought about the whole incident and wondered how many times he passed that airman....didn't even look at him. Didn't care to....after all he was an officer. He made a promise that day no matter who came across his path he would always look them in the eye and smile. Everyone was somebody.

Maybe more of us should be that way....

Just a thought.

Thursday, April 9, 2009

2 Great Gals In The UK!

I have two blogs I follow from the UK. They are passionate about organ donation and are transplant recipients as well....just within the past year. Holly C. and Holly S. are amazing in their campaign and well worth the read. Go check them out!

Tuesday, April 7, 2009

When your sick with a cold

or bronchitis or a sinus infection or any other junk that involves boogies and/or is a real pain!

Yes, I am whining....I am in that whining mood. I have bronchitis and when you have SS it seems to be a bit worse. Everything is dry to begin with and when you get a cold it is an automatic that it will turn into a sinus infection or bronchitis.

On a good note I finally have a family doctor. I know that I should have one, but when you see so many specialists and work for a hospital that provides free care for minor illnesses...who needs one?

ME! No one wants to touch me with all my problems as far as the LPN I can see for colds and stuff for free at the hospital. And the specialists don't want to be bothered with the small stuff.

I liked my family doctor. She seems real and easy to talk to. She was ordinary looking and was about my size.....which is not perfect. LOL

Amazingly, she seemed to know a bit about Sjogrens.

Yes, I have a family doctor! Woo-hoo!

Sorry for the rambling...I'll blame the robotussin with codine.

Friday, April 3, 2009

April is.....

Sjogrens Syndrome Awareness Month! Go here or here if you want to learn more information on what SS really is. Sjogren's World will really tell the truth of what it feels like to have this autoimmune disease and how it affects their loved ones. Especially the message will open your eyes. Truly.

If you learn anything this day...month...or even year for some. Learn about this disease and help it become more relevant. Knowledge is power and we definitely need more knowledge with this autoimmune disease.

Fortunately, a few of the more popular shows have run Sjogrens episodes like House or Mysterious Diagnosis just in the past 6 months. Both protrayed Sjogrens pretty well although how they said to treat was just the icing on the cake.