It Has Been Awhile!

I have been busy since we got back from our little vacation. (a much needed or else I was going to go crazy vacation) Nolan was in his end of the school year play that the 4K performed. He was a rock star...and quite the "star" of the show I might add. Yes, I am a proud mommy! I can't believe he will be going to kindergarten in a few short months. Gah!

My blood work has come back and my creatinine is starting to creep back up a little. It was 2.8 this last month. Up from 2.6, but better than the 3's it has been in the past year or so!

I have been working on a small personal project of mine with my family to help raise money for the costs of transplant not covered by insurance for me and my living donor. We will be selling t-shirts to help raise organ donor awareness. I will post a pic of them as soon as they are done. I am excited and many others are as well!

Now....for the best news. I have a match for a living donor. So far, everything looks good as far as the cross matching, tissue typing, etc. He has to go to MUSC June 10-11. Please pray that all his tests come back that he his as healthy as a horse. :) Also, his family has a few concerns about organ donation, please pray that they find total peace with him being my hero. They support him, but are scared for him a bit....understandably. The concerns I have heard his family express are just "myths" and I think with educating them on living donors it will calm their fears a lot.

I will announce who it is as soon as I ask him and his family if I can blog more about it...specifically more about him! I would like to tell the world who my hero is. (even if it comes back he will not be able to donate to me)

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.

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??

MUSC Update

MUSC confirmed that the Cellcept is working! I am to stay on it for 2 more months at the same dose of 500 mg. twice a day. They also said that they will be "working up" my live donor heroes. Hopefully, out of the 11 names I gave them, someone will be a match. I think my sister has a good chance. She had to lose a little weight before they considered her and now she almost there.

They want to get everything ready so that maybe....just maybe...I'll have a new kidney by summer! My creatine went from 3.1 to 3.5 this last month too. I was holding steady at 3.1 for over 6 months.

Sometimes I wonder if I am getting this transplant too soon. Last summer they gave me 2 years before I would be on dialysis. (although they said they were just guessing from how fast my numbers were going down) THe chances of a better outcome is not being on dialysis at all before transplant. Dialysis takes a lot out of people.

My main objective is too push dialysis out of the picture....I don't want anything to do with it. It scares the hell out of me. I know that the chances of it being in my future down the road will probably be inevitable. I hold on to that small thread of hope that when I get my new kidney it will work for at least 15-20 years. Maybe by then they can grow a kidney for me??? Medical technology is growing by leaps and bounds.

At least my organ that needs replacing can live off of a machine for a few years. I am in much better shape than others needing a heart, lung, or liver. I pray for these people.

Quick Update!

I still haven't heard from the transplant team at MUSC...I know they are busy! BUT...my MUSC nephro has contacted me twice this past week. I should be hearing something soon. I guess that is alright since I have found out that my Hubs insurance pays for my part of the transplant, but not the donors!! Talk about a stab to the heart...or errrr kidney? I did a lot of praying...A LOT and I believe my prayers were answered.....

I found out open enrollment at my job is the next few weeks....and there is no pre-condition clause.....and they pay for a lot of my part and the donor's part...and it starts Oct. 1, 2008!! Thank goodness I have my job at the hospital right now. I talked to our HR department and we are double checking everything. I have been told that our insurance is self-insured at the hospital and that my transplant needs to follow a few rules.

1) It must be at "center of excellence"-No problem here...it will be at MUSC!
2) Deemed medically necessary.....No problem there!
3) Hospital stay must be pre-authorized...DUH...that is a given!
4) This one is funny...it must be a human to human transplant.

I know that there will be a few other rules, but I hope and think it will be OK. I was told that I will be set up at MUSC housing for approximately 8 weeks after the hospital stay to be closely monitored. I wonder if someone will have to be with me all 8 weeks? I wonder when I'll get to see my 2 boys... I wonder how much the eight weeks will cost.....

I guess I should wait until I talk to the transplant team...I will get a better grasp on what will happen. Better yet....I hope I can talk to someone who has gone through this...or something similiar. I wonder if there is a support group...

It is getting late and as you can see my mind is turning with many questions. Thanks for listening!

More on MUSC....

First...can I say I love fountains! My hubs and I found this on the way back to our hotel in Charleston. We were taking a short cut through the outdoor gazebo-like area of another hotel. It was beautifully lit. I was very tempted to take off my shoes and run through it.

Well.....I am still waiting on the MUSC transplant team to call me. I wish they would. I am anxious....I think my sister is even more anxious than me. She wants to be first in line to see if she is a possible donor. She is in California for her job this week, but will be back this Saturday. She will be staying with us for the weekend before she heads home to Tennessee. My oldest tater tot turned 4 yesterday and we are having a big diego party for him on Saturday.

At MUSC I talked to Dr. Alan Brown (rhuemetologist) and he was familiar with renal involvement with Sjogrens. I liked him immediately and so did my husband. He was not much older than us and wears a bow tie to work everyday. He was a Clemson fan too. Also, he is good friends with the Doctor that delivered my first son and who I see at work occasionally. (I work for a hospital...I am a certified lactation educator and work in a mom/baby boutique and also fill in at the cancer center boutique. I am in the process of getting my certification in fitting for prosthesis for breast cancer survivors too). We went over all my symptoms and he checked me out. He spent about an hour with me. He answered our questions. He was very honest on his prognosis....which was to basically save my energy for the big autoimmune drugs for transplant. He wanted to talk to my nephrologist at MUSC about it more in detail. He gave me a note for her to page him at her convience.

I saw Dr. Rachel Sturdivant (nephrologist) at MUSC next. I had to get some lab work done STAT. The normal blood tests and pee in the cup. She was not much older than me and a mom of a toddler too. I explained that I had two toddlers and wanted to do whatever was needed. I also liked her a lot. She went over my history of CKD and Sjogrens with me and checked me out from head to toe. She then told me that if my kidney function was around 30 or 40 we would try the bigger autoimmune drugs. Since it was 17 (it went up a point from 16...hooray....the Doc was quick to point out that it was probably a fluctuation of the labs) that it was past the point of trying that and I should consider going straight to a live kidney donor transplant. She explained that a live donor would work best for me. Studies have shown (I verified this online too) that my chances to live a normal life would be best if we could hold off dialysis or even prevent dialysis from ever happening to me. Don't get me wrong...dialysis is a GREAT option for some people.....just not for me at this point. She told me she would refer me to the MUSC transplant team and they should call within the next couple of weeks.

Now....we are waiting for a phone call. I have many questions....from the transplant to the financials. One HUGE difference I noticed was that these Doctors were not irritated and they did not talk down to us because of all the questions we had. My new local Rhueme is good about this too. She doesn't mind questions. I feel like we are heading in the right direction.

I'll post some fun pictures of Charleston on the next post!

Countdown to MUSC...

I will be traveling tomorrow to MUSC with hopes of good news in the treatment of my CKD related to Sjogrens. My kidneys are operating at 16% right now. They may not have any news for me, but at least I will know where I definitely stand. I will keep you all posted when I return. It probably will not be until Monday, August 4th. My Birthday!

I had another round of procrit last night. Funny thing is....I think by Monday I feel my energy level go down a bit....it's probably in my head or maybe just Monday's in general! I do love the energy it provides for me. We may switch to Arnasep. I have heard that you only need to take that once a month. It is the newer of the 2 drugs. I also have a question about my pain relief drug called Ultram......I love the stuff, but when Hubs and I looked at it's warning online it claimed to not use if you have severe kidney impairment. SO....I haven't taken but 3 pills the past 5 weeks and that was when I felt so bad I could barely move.

Talk to you soon!

***Update***

Ohhhhh I hate dealing with insurance and billing/coding specialists!! I was called a couple of hours ago by a lady in the MUSC nephrology dept. and she said that I was NOT able to have my appointment because I wasn't referred by a primary physician???? I told her my nephrologist referred me. She got a little snappy. You currently don't have a primary physician? (NO LADY! I SEE SO MANY SPECIALISTS AND ALL OF THEM ARE INTERNAL MEDICINE DOCTORS.....I WORK FOR A HOSPITAL THAT GIVES FREE MEDICAL VISITS AND WRITES PRESCRIPTIONS FOR URGENT-LIKE CARE VISITS TO THEIR EMPLOYEES....WHO CAN AFFORD MORE DOCTOR BILLS???)She said that I needed to call my insurance company and get it pre-authorized. (meaning that my insurance will pay) I call my insurance company and they said under "special circumstances" a nephrologist can refer another nephrologist. I had to get my nephrologist to call and get it pre-authorized. I am waiting on a phone call. I think the girls at my regular nephrologist office can make all this happen. They are GREAT! They really help me out and was very understanding when I started my procrit injections. If they can't.....I think we'll just bite the bullet and pay for the visit out of pocket.

Everything is a go for tomorrow now. The girls at my office said that they called my insurance company and NO precert was needed. They called MUSC too. Everything is straightened out....I hope it stays that way tomorrow! :)