Epstein-Barr Virus (EBV)

The mad scientist/researcher is coming out again in me....this personality overtakes and consumes my thoughts for hours or even days at a time. This is just my own personal rant.....so beware!

I noticed in my last set of bloodwork that I have an elevated EBV titer of 7.6. I didn't have a clue to what this was....so I brought out my husbands old medical books. Turns out this is the virus that causes Mononucleosis. Did I have Mono or did I have it in past??? I did more research and found out that people with Sjogrens Syndrome tend to have an elvated EBV titer. Interesting....

Then I stumbled across a few studies that were trying to come to the conclusion that EBV may cause Sjogrens Syndrome and it does say that there is evidence indirectly.

The virus infects the immune B cells and multiplies in the salivary glands and surface tissues of the nasal and throat passages. After the initial infection, the virus remains dormant in the host's body, that is, exists without being infective. EBV can stimulate the production of autoantibodies, which are abnormal immune proteins directed against the body's own tissues and cells. Various lines of evidence suggest that EBV may be involved in the development of two autoimmune disorders, rheumatoid arthritis and Sjogren's syndrome.

Hmmmm....I am just wondering.

Anyone have anything to add to this? I wonder if there are any current studies going on about EBV and Sjogrens or other autoimmune disorders.....

BIG NEWS!!!!!

I am officially accepted into MUSC's transplant program! I will be listed on the national registry for a kidney. We are STILL looking and testing for a live donor. My sister should be a front runner soon.....we are hoping.

I am to start Cellcept though prior to transplant. Normally, this is given after transplant to bring the chance of rejection down. It is an autoimmune suppressant drug. HOWEVER....because it is an autoimmune suppressant drug the transplant team wants to see if I will respond well to it and bring my ANA titer down to a reasonable level. I see that people with Lupus or Sjogrens are put on this to control their disease....it looks favorable. Anyone out there using Cellcept?

I am very happy with my news.....now I just need to respond well to Cellcept!

Check out Sjogrens & Me New Look!

I decided it was time for a change....

You Likey?

I took this picture about a month ago in York, Maine. We were up in Rhode Island visiting family and had a wedding to go to. Hubs took me to Maine as a last minute surprise. (I had never been to Maine). It was so peaceful and breath-takingly gorgeous. This picture doesn't do it any justice....I can't describe how nice it was.

What Procrit Injections Have Done For Me

I have noticed a great deal of hits on this blog for Procrit Injections....so I thought I would write a post on my personal experience with this drug. Procrit or Arnasep is a man-made drug that comes from human plasma. This is why it can be costly.

Epoetin (eh-POH-ee-tin) is a man-made version of human erythropoietin (EPO). EPO is produced naturally in the body, mostly by the kidneys. It stimulates the bone marrow to produce red blood cells. If the body does not produce enough EPO, severe anemia can occur. This often occurs in people whose kidneys are not working properly. Epoetin is used to treat severe anemia in these people.

I use it for the obvious end stage renal disease I am going through. I know many cancer patients on chemotherapy take it as well. I will list the pros and cons that I personally have come across.

PROS
1) I feel like a new person.
2) Procrit lets me play with my kids.
3) I can hold a normal 40 hour job still that I love.
4) It makes me feel like a super hero at times.
5) ENERGY BOOSTER

*** As you can see all these relate to a better quality of lifestyle.

CONS
1) Procrit is costly. Having good health insurance is essential.
2) It took about 5 injections (5 weeks) before I started feeling great.
3) Procrit stings when entering the body, BUT if you warm it to room temp just before injecting it...it is not bad at all.
4) I vomited twice initially when I got the first few injections, but now I have no problems.
5) It is an injection with a needle just under the skin and I HATE needles. I will say that honestly as scared as I am about needles it really isn't bad. In fact, most of the time I don't even feel the needle going into my lower belly, it is the procrit I feel.

Despite the cons, my overall assumption is that Procrit is my life line and it is an unbelievable drug that has given me my life back. If you are getting ready to start procrit injections educate yourself and take a deep breath. In a few short weeks you will feel much better.

A change of Pace...

I thought I would put a couple of inspiring photos up of my 2 little pumpkins. They sure make the worst of days better.

P.S. No news yet.....

AAAAAAAAAARRRRRRRRGGGHHHH!

That is what I feel like doing right now....I still don't have the final thumbs up from MUSC! They can't seem to get a hold of my rhuemetologist. Is this my Rhueme from here or MUSC? AAAAAARRRRRRGGGGHHHHH!

An update....kinda!

Sorry for the delay. I couldn't post anything on blogger yesterday!! I do have what I think is good news....

First, let me say that I still don't have the FINAL answer, BUT I did talk to my transplant coordinator yesterday and her exact words were...

"I think you will be positively accepted".

WHEW....talk about me being a bundle of nerves...I feel sorry for my husband, family, and close friends that have had to put up with me the past few days. I have been snappy....and I apologise from my heart. Thank goodness they are understanding!

OK...back to my conversation with Jennifer, my transplant coordinator... She preceded to tell me that they were reviewing my chart with one of the physicians that has been out of town. They are looking over me this afternoon. It is not a matter of if I will get accepted....it is a matter of how to care for my unique situation prior, during, and after transplant. They want to give me the best possible care and know exactly what to do for me.

SO, I think I will get good news by tomorrow. I am still a little nervous...I just want the final OK and be told I am put on the list!

One thing I have learned about this situation and myself is that I can't deal with the big picture. I know what I want it to be....but I need to concentrate on one hurdle at a time. Right now...it is getting on the list and being accepted on MUSC's transplant program. All the other things......just are not as important as this first step for me. Soon this will be a memory and I will concentrate on finding a live donor.

Thanks for all the prayers and positive thoughts being sent my way!

Home Made Chicken Noodle Soup....

A good friend of mine made me home made chicken noodle soup...with home made noodles too! It hit the spot and I swear it is a miracle attitude booster. As you probably read from my last post I haven't gotten the word if I am officially accepted into MUSC's transplant program like I hoped for. They are contacting a Sjogren's Specialist to ask about the timing, if I need to be MORE closely monitored before and after transplant, and what they can expect. It doesn't sound like I won't get into the program....but obviously something has them worried. Needless to say I am worried that I won't get on the transplant list....there is that chance.



I think the waiting is what is driving me bonkers. I was told by my transplant coordinator, Jennifer, that I should hear something by today or tomorrow. She sounds optimistic, but until I hear that I will be put on the list, I am restless.

Today is the DAY!!!!!

I receive word from my transplant coordinator that my case is up for review this morning at MUSC. I should know by this afternoon if I am put on the national transplant list. Everything looks favorable, but you never know. I know a co-worker's father was turned down by MUSC, Emory, and was finally taken by a hospital in Jacksonville, FL. He is doing well with his lung transplant. I believe it has been over 3 years for him.

I got great news about the cost of my procrit injections. I now can get 6 injections for $10.00!!!!! YES, ONLY 10 DOLLARS! I was paying $100.00. I just about jumped over the counter and kissed the pharmaceutical tech. I also found out that with my new insurance at work that my approximate out of pocket amount for post transplant meds should be $105.00 a month. Can you believe it??? God is good. It looks like medicare will not be needed by me because I will have to pay them $100.00 a month for them to pick up about $75.00 a month in co-pays. I know it sounds confusing....but basically I would be spending an extra $25.00 or so a month needlessly if I got medicare. (I am talking about the prescription part...not the one that helps with medical bills) It is baffling and I am still learning. So make sure you do your own research if you are in a similar situation.

I will post later today when I hear from MUSC. Keep your fingers crossed!

***UPDATE***
I am not accepted yet. They want to check one more resource to make sure that the timing of the transplant doesn't interfere with the Sjogrens!!??????!! I should know an answer Tuesday. I am not a happy camper.

Transplant Medicine Costs.....

and all my tests for the pre evaluation are officially turned into MUSC. Woo-Hoo!!! I wonder if they will review my chart transplant this Friday or next??? The transplant team evaluates each person wanting to do a transplant every Friday morning. This will let me know if I am officially put on the transplant list. Again, hopefully we have a live donor.

I turned in my list of post transplant medicine that they give most people when discharged from the hospital. The cost without insurance is over $4400.00 a month. YIKES! My good friend is a pharmacist here where I work and she is looking up the costs of the drugs with my 2 insurances. We are also trying to decide if I should pick up medicare. (I am eligible for medicare even though I am young for 3 years after the date of transplant). Does medicare pick up the co-pays? Anyone know how this works? I will update soon when I find out more.



Oh and one more thing....a nice thing....I was awarded a Kreativ Blogger Award from Maria @ My Life Works Today . She has Lupus Nephritis in stage 4 which is similar to Sjogrens and CKD. Thank you Maria for this honor....now go visit her site!

Fall Foilage in New England

I thought I would post a few gorgeous pictures of nature painting a beautiful scene. Enjoy!!