Tuesday, September 30, 2008

My Living Heros....Donors Are Being Contacted!

I submitted about 5 names on my potential donor list intially a couple weeks ago. Well...they are starting to contact them and ask questions. I have 2 family members and 3 friends on that list. I will keep them confidental for now. :) It looks like I will have another family member and a couple more friends to also submit into the living donor list when I visit MUSC in October.

Saturday, September 27, 2008

Heartbreaking News With A Happy Ending!

This copy of a post is from is from Melissa at Calling All Kidneys. (She donated one of her kidneys to a complete stranger about 2 months ago)

I got the most heartbreaking email yesterday. A lady wrote me asking if I would consider donating part of my liver to her 11-month old son that's dying of liver failure. Unfortunately, liver failure is very progressive with no real treatment. So, he doesn't have much time. It is possible to donate part of your liver and your liver will regenerate itself. They put part of your liver in the recipient, and it also grows to a full liver. Anyway, it broke my heart to have to tell her that I was not able to donate part of mine at this time.

"Update on 11-month-old needing liver"

I wanted to update everyone on the last post. I let everyone know that there was a family looking for a liver for their 11-month old boy.

I have wonderful news!

The night of this post, early in the morning, he received a cadaver liver.

The last I talked to the family, he was doing well.

Thank you to everyone that contacted me regarding this. I'm sure I'll be contacted about more in the future.

This story had me tears....both at the time of the baby needing a liver transplant and afterwards....tears of joy! Please pray for this little baby.

Wednesday, September 24, 2008

Fundraising and Financials of Transplant

Here is part 3 of my posts on the kidney transplant class. The one clear message I received was that even though you may have the best insurance in the world.... plan on a big chunk of money to come out of pocket. Insurance doesn't pay for everything. My sister and I briefly sat down and was trying to figure how much out of pocket it would cost me just in the first 6 months or so during and after transplant. We came up with nearly $20,000 and I am sure we aren't even thinking of everything. This does include my $4500.00 maximum out of pocket deductible. You have to think of lost wages, gas for an 8 hour round trip, lodging, money for the caregiver of my two little munchkins during part of this time, the donor's transportation, lodging, etc. etc. etc. The list is enough to make your eyes cross!

The medicine if you don't have insurance after transplant is near $4500 a month. This is just an estimate! With Insurance it still run most between $300-500 per month. The sad thing is that people can't afford the immune suppressant drugs and will try to space them out instead of taking them regularly because they can't afford it. This causes them to reject the organ and go on dialysis...or even worse die. (Ironically, they will get help for dialysis...not for the meds that keep them away from dialysis). Now, I am talking about people under the age of 65 and do not qualify for medicare. If you are under age 65 and CAN qualify for medicare they will pay partially for your meds for 3 years....then you are on your own. I don't believe I will qualify for medicare because I am not currently on dialysis.

We were also told to start fundraising through your community, church, and work. I have a VERY supportive family with this. I think they know that the financials scare me just as much as the transplant does. My Dad is in the process of organizing a raffle to win a new Harley Davidson....maybe even a new car. My sister is doing things with work and on the local level with bake sales, etc. My mom is making plans with her church....and all my friends are wanting to help. My husband John is helping them with all the fundraisers. I am getting emotional just typing this. You realise how much you can count on others who care for you. I am in the process of establishing a couple funds. I think one is going to be with the National Transplant Assistance Fund (NTAF). I am working with a lady named Rebecca who has been very helpful answering my questions. All my family and friends have to do is call her when they want to set up an event and she will help them. My family and friends that live 1000 miles away can help too.

After I am done with this endeavor and on the road to recovery....I am going to do something to "pay it forward". I do small things for charities now....but I feel like God has lead me to where I need to go because he has bigger plans for me to help others. I just know it and that what is giving me peace about my situation.

Monday, September 22, 2008

Wanted....Living Organ Donors!

This is part 2 of my posts on the transplant class. They talked about approaching people to be living donors. What to ask, what to say, and what questions they may have were some of the topics.

I can imagine me going up to a healthy looking individual and telling them that I think they have nice organs with a wink. LOL I wonder how many people would look at me like I have 4 heads again?

They gave my sister a 5 or 6 page questionaire that asks about prior health issues or if you have been hospitalized for anything. It is detailed. They will contact my list of potential donors and have them do a blood test initially. Then it is a series of tests which include EKG, MRI of kidneys, psychology examination, etc. They will be at MUSC for 1-2 days outpatient there to do all the tests.

They do a laproscopic surgery to get the kidney out. Really! The big 10-12 inch incision is a thing of the past. You will have 3 one inch incisions and a 3-4 inch incision just above the hip bone. Less scar than a c-section. Most donors are out of the hospital in less than 48 hours and back to work in 2-3weeks. The biggest complaint is gas bloating and fatigue after surgery.

Take a look at my sidebar -------------------> Under THE NEED

There are interesting, but true facts of the need of organ donors. Be a hero to someone. Can you imagine any greater gift?

Saturday, September 20, 2008

Transplant Class

Sorry, it has been a few days. I received a lot of information on what is to come the next few months. Some I already knew, some I didn't. I may divide my info into 2 or 3 segments. :)

First, let me just say it was an emotional day when I sat there with others from different walks of life.....we all have one final destination and that is to get a kidney transplant and live a longer healthier life. Before it started I looked around the class and noticed that there were young and old, male and female, Caucasian, African American, and Asian. Many came as I did with family to help deal with all this info given to us. I couldn't help the tears rolling down my face.

They talked about 3 areas. Steps in getting qualified for transplant, living donation, and financials. I am nervous that my high ANA (antibodies) will disqualify me for transplant. In fact, each year only 6.5 percent of highly sensitized patients receive a transplant. Most remain on dialysis indefinitely, without hope for a life-saving transplant, with grim financial implications and poor quality of life. I asked this question and the transplant coordinator suggested for me to send my latest lab work from the rhuematologist. She said that they may place me on hold for several months to get my numbers down with medicine. This would be OK, because I am not planning on getting this done until sometime next year. She assured me that there were others with similar circumstances and transplant was a success for them. We were told that we should hear from them and meet with the transplant team in the next 4-6 weeks to see if I am transplant worthy. I have to get a pap smear and TB test done prior to meeting with them too. I don't have to get other pre-tests done because I am below the age requirement. Of Course when I get to MUSC I will have a series of outpatient tests like chest xray, EKG, and a few other tests that are done with the transplant team. After you meet with the team (which includes a financial person to see if you can afford having a transplant and all the medicine afterwards) they discuss you in a meeting and see if you are a "true" candidate. And yes......financials are a big part of it...sad, but true.

When you are accepted they place you on the transplant list. (cadaver list) Even though we are going for a living donation I will be placed on this list too. (Just in case I can't find a living donor that matches with me). There are over 600 people waiting for a kidney transplant in South Carolina and the average wait is between 2-3 years for a cadaver kidney. I have been told it would be less than 2 years before I would need dialysis. I found out that the kidneys are given out on a point system....the longer you are on the list, the more points you accumulate. The only time that you would be pushed ahead of others is if you were a child, you had been waiting for a long time and going to die soon, or if you were a 100% perfect match. She had a man who was deemed transplant worthy and in less than 18 hours after he was put on the national list he had a new kidney because it was a PERFECT match. Amazing!

I will talk about living donation in the next day or so......

Thanks for listening! AND PRAY that my high antibodies come down. I don't want to be in that high sensitized category!

Monday, September 15, 2008

Transplant Class on Thursday

Well....the time has finally come. The ball is rolling on the kidney transplant...at least the first step. I have a mandatory class to attend in Greenville, not Charleston this time. I am thankful of that because of gas prices. I will only need to take a 1/2 day off at work. I hope to learn a great deal at this 3 hour seminar, but I have been told a big part of it is compensation and legalities.

You want to hear something funny....maybe even crazy....I went for a job interview for a promotion at work. Hopefully, I will hear something back this week. I know I put my best foot forward and if it is meant to be....then it is meant to be. A year or even 6 months ago I would have been upset if I didn't get this promotion and now I know it is whatever God has in store for me. I really feel myself changing inside. I think it is for the better. ;) So keep praying for me! It is keeping my numbers steady....the first time in 2 years! Thank you!

Friday, September 12, 2008

Procrit is now....drumroll please....

Every other week! After 12 weeks of procrit injections we are now trying a schedule of getting one every two weeks and see what my numbers do. My hemoglobin was 11.6 and my hemacrit was 33.7. Hopefully, it will be OK and I won't feel too tired by the end of week 2. We will see....

I didn't realise how bad I felt 3 months ago. Looking back now I am amazed at the strength I did have. I know I am strong and I had support from my family and friends that helped me carry through the bad days that seemed to have been endless. I still have an occasional bad day or two, BUT not like I did before. I can do more, but have to pace myself and listen to my body.

I have my transplant class next Thursday. My sister is driving down from Tenneesee to go with me. My husband and Mom are planning on going too. I will have a lot to update at that time.

A man named Steve I know who had a kidney/pancreas transplant 7 weeks ago is doing great. He is meeting with SC officals and the head of the transplant at MUSC to discuss raising money for research to help prolong an organ's life. Also, to build a house for people who have transplants where you can rent a room for minimum $$$. It is going to be modeled like a Ronald McDonald House, but for transplant patients and their families. I asked him if there was some way I can help him reach his goals because I would LOVE to be part of this.

Saturday, September 6, 2008

"Show My Grin To Who"?

I was told I had mumps. I was told I had saliva sludge built up and told to suck lemon candy while massaging my chipmunk cheeks. Vicodin was given for pain....yes I was Chip and Dale's 2nd cousin twice removed. It went away and came back again and again. I became pregnant 4 years ago with my first child. I was extremely fatigued, my eyes and mouth became more dry than normal, I ached from head to toe, and I blamed it on the 60+ hours of work while pregnant. I ended up with a c-section and placed back into the hospital because a high temperature spike that wouldn't go away. My OB-GYN ran all the tests he could think of because they didn't know what was wrong with me. Finally, I was referred to a nephrologist and rhuematologist. I was told I had an autoimmune disease called Sjogren's Syndrome.

"SHOW WHAT?" I asked. I had them spell it out on a piece of paper for me. I was basically told that it was dry eyes, dry mouth, joint pain, and fatigue. It wasn't life threatening and most people live ordinary lives with medicine.

OK...no problem I thought. I researched it on the Internet and it confirmed what my Doctors said. A few months later because of my slightly waivering kidney function I was told that I had Lupus too. Now that was a familiar term and I didn't like being diagnosed with that. My kidney function was slowly going down and we decided in Jan. 2007 to do a kidney biopsy to see what was going on. The good news was that it wasn't Lupus, but it did show major scarring and renal tubular acidosis that concurs with Primary Sjogren's Syndrome. After a bit more testing...OK A LOT MORE TESTING...it was confirmed that I do not have Lupus or any other autoimmune disease but Sjogren's Syndrome. (I went to 3 different rhuematologists to get opinions).

And now I sit here in front of you getting ready for a kidney transplant in the near future.....because of complications of Sjogrens.

I have started this post about 15 times and I just can't seem to think of anything good to write about. I tried to make it funny...but right now I don't feel like taking the humorous side to having an autoimmune disease. Is there a humorous side?

I guess the best advice I can give is get to know your own body signals...LISTEN to your gut instinct. Question your Doctors and whatever you do....don't let them think that Sjogrens is just an disease with annoying complications...IT IS SO MUCH MORE. Push for research. Find a support group.



Wednesday, September 3, 2008

Any suggestions on what to write about....

for Invisible Illness Awareness Week?? I would like to write something that people may want to know more about.....do I make it personal or general? Funny or serious? If you have a suggestion or would like to know more about anything to deal with Sjogrens and/or Kidney Disease...just drop me a quick note. I would love some suggestions. Thanks!

Monday, September 1, 2008

Barney and Sjogrens....

OK, everybody sing....I hate you....You love me....were an unhappy family....with great big aches and dry eyes too....won't you just say adieu! Yeah, my eyes have been giving me a bit of trouble and I am a bit achy the past couple of days. At least the fatigue is under control right now.

Overall, I can't complain. I feel better than I did a couple of months ago. If I feel the same tomorrow I think Ultram will come to the rescue since I will be working. You ask why I don't go ahead and take the Ultram today??? It is best not to take a bunch of this awesome drug when you have severe kidney disease. I take it only when I know I can't lay around. (i.e. work) Don't worry....I take this maybe 2 or 3x a month and in actuality I can take up to 100 mg. every 12 hours without any harm...supposedly. I caution with its use....but it sure does help on rough days!

I received more paperwork on the transplant class. It asks me about 5 pages worth of health questions and it also asks for the names of potential donors with phone numbers. I am to bring my primary caregiver and any potential donors to this meeting. I think I won't have any potential donors there because my sister and uncle live out of state. They will be my first two listed. Then I have 3 friends that are seriously wanting to test for me....Kelly, Wendy, and Anna. I have about 6-8 others that have showed interest and I am suppose to let them know when testing begins....I am not sure how serious they are in this donation thing. I would totally understand if they decide to back out. This is a HUGE step! My parents are unable to donate because of health issues and hubs has type 2 diabetes...he takes the minimum dosage of medicine, but he needs to be healthy for our boys and me when the time comes.

I will be starting Lifechoice Gym in the next week or so. I only pay a little over $8.00 a month for this benefit through work. The personal trainer will provide a program unique to my situation. I can't wait!