Wednesday, August 27, 2008
I took another dose of Procrit. Since I am feeling better...I am having a hard time taking these. I really didn't want to yesterday. I have to tell myself that the reason I feel good is because of these injections.
I have met up with a gentleman named Lightning who had a liver transplant by MUSC. He has been great about answering questions...he has even given me the email of a friend of his who just went through a kidney/pancreas transplant at MUSC a month ago. Go visit his story if you get the chance. It is great!
Monday, August 25, 2008
I recently started to use this and I love it. I don't use it everyday, but 2 or 3 times a week. Lindi Skin care was developed for cancer patients going through Chemo or radiation. I have found it is great for us Sjoggries too.
I have been using a sample of this and LOVE IT! Just a drop or two will hydrate those dry patches on your face.
"Lindi Face Serum is a gentle blend of antioxidants, avocado oil, and our unique "LSA Complex™", which help calm irritation and dryness. Its soothing properties help relieve aggravated skin".
Now if there is one product of all my recommendations that you try it is this! Caren Products have the best hand and body lotions I HAVE EVER COME ACROSS! A portion of proceeds go to cancer research and they even have an infants line out too!
"Now you can benefit your skin and treat your senses at the same time with our doctor-recommended bath and body care. Used on your face, hands, feet, and body, our hand and body lotion and other products feel luxurious, but never greasy or sticky. We pride ourselves on the consistency and purity of our hand creams and all of the other products we carry".
You won't be disappointed with these products to help care for your skin. I don't work for these companies and I don't get a kickback from them either. LOL
Saturday, August 23, 2008
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!
Tuesday, August 19, 2008
I am happy to say that my numbers are the same or even better than they were in June. Still high...but not worse! It seems like the past year my numbers continued to get worse every month. My creatine is 3.14 (down from 3.4 a few months ago) My hemoglobin is `11.9 (Hooray....up from 9.4) GFR went up to 17 from 16. This is very positve for me!! I still have a high SED rate and inflamation rate and all that other good stuff they check for Sjogrens. BUN was high too, but that is part of CKD.
I had a wellness check up and my cholestrol, triglycerides, and lipid panel came back with flying colors. My sugar was 75 (fasting). I am happy to say I am at the lowest risk level for heart disease and such. I'M DOING SOMETHING RIGHT! My good cholesterol is just under the normal range, but excercise will get it to where it needs to be at. This is good news for me because it makes me feel like I am one step closer to getting the "OK" to be kidney transplant worthy!
I received an email from my MUSC nephrologist and she was forwarding it to the transplant team at MUSC. She said she will have them contact me and that she was referring me to them a second time. Hopefully they will in the next week or so.
All my doctors seem to be on board with this transplant...so that is good.
Monday, August 18, 2008
I cannot express how deeply I feel towards you right now. Lets face it....we haven't been the best of friends...we have been through some good times and bad times together. I think overall I comply to your terms....although through gritted teeth. I have learned to pace myself....deal with the fatigue....and even get around with the aches and pains you like to contribute to. So why do you want to attack my kidneys?
What did they ever do to you?
.....I am still waiting for that answer. Sjogrens...you are like a spoiled brat...always wanting it YOUR WAY. At times I feel you are a bully too. Just remember one thing.....I WILL WIN this silly game of yours!
Friday, August 15, 2008
Wednesday, August 13, 2008
I have learned something about myself....I am not a patient person at times. I am STILL waiting on a phone call from MUSC. I know that TECHNICALLY they have until the end of the week to call me before I call my MUSC nephro next week to remind them to call me. The bad thing is that I know through the next 6 or so months my patience will be tested over and over again.
I had my eighth injection of procrit last night. I cannot stress how much it has helped me. I see the vampires tomorrow for a full blood work-up. Maybe I can go to every other week on the injections. I see both the rhueme and nephro next Tuesday. It will be interesting what they will say from my visit to MUSC.
I sit pondering a good bit....playing out the scene that I will be one of the fortunate ones who find a quick and almost perfect match to my kidney. That part doesn't scare me so much....the actual surgery doesn't either....it is the 3 months or so after the transplant. It reminds me of my high risk pregnancies....I need to get through the first trimester and the chances of my body rejecting it is much less. I am nervous because I know I have very high ANA, SSA, and SSB antibodies in me. BUT...I tell myself the transplant team knows how to handle this. They may not have dealt with Sjogrens and kidney failure but they are very familiar with Lupus and kidney failure....and that is an autoimmune disease. I hope MUSC tells me that they have dealt with this before and have had favorable outcomes.
Monday, August 11, 2008
As you can see I LOVE Architecture!!! Many pictures are of old churches and houses. A few are of me and John being silly on the beach! We had fun despite the news we didn't want to hear at MUSC. I go for more bloodwork in a day or two. Next week I have appointments with my hometown rhueme and nephro. It will be interesting to see what they have to say about my trip to MUSC.
Thursday, August 7, 2008
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!
Monday, August 4, 2008
I wish I had great news for everyone.....but I will be officially put on a live transplant list. I will be hearing from the transplant team at MUSC in the next couple of weeks to get the ball rolling. I am scared. I am worried. But most of all....I am MAD! I don't think finger pointing is the right answer but I feel like I was let down by my old rhuematologist and maybe even more so by my current nephrologist office. I wish I had listened to my gut instinct over a year ago...even longer. I felt like I was being pushed back and forth like a hot potato between my two doctors and no one wanted to take some sort of initiative to put me on the "BIG" autoimmune suppressant drugs. I am glad I finally switch rhuematologists a few months ago....at least I am being taken care of and she was smart enough to refer me to MUSC. NOT TO MENTION...I have recently taken a big part of my care into my own hands and educated myself on Sjogrens and what it can do to organs!
Yes....Sjogren's is the culprit. MUSC currently has one other patient they are monitoring with SJS and CKD by itself and 4 others with Lupus/SJS/CKD. I do have much more to say and will later this week. I want to explain why MUSC has come to this decision and what the next steps will be. I am learning about the finacial aspect too.....which would make a sane person go nutty.
I have one four letter word..................that comes to mind.........NO, NOT THAT ONE! ;) Although.... I have thought of that four letter word too! It is...