Maybe next time...

I recieved a phone call this morning that Jordan will not be able to give me one of his kidneys. He only has one working and the other just isn't doing a thing. I am sure it was a surprise to him and his family....so please keep them in your prayers.

John and I can't thank Jordan and Jenny enough for trying to make this happen. Also, thank you to his extended family as well. Many people live fine with just one working kidney and have no problems whatsoever. Jordan will be one of them.

Jordan is still my hero...

Sorry...not been in a posting mood

I am sorry about the lack of posts. I am anxious to get the results of MUSC on Jordan. He goes in tomorrow and Thursday for testing. I have been really tired lately too. My procrit was adjusted and I think the past 5 or 6 days have been like a blur. I need toothpicks to hold my eyelids up. :-)

The good news is that I get another round of procrit tonight, so I should have a burst of energy the next couple of days. Please say a extra prayer for Jordan, Jenny, and all their family the next few days. Please say a prayer that the transplant team can answer all their questions and address any concerns they may have. I am looking forward to hearing from the 2 of them tomorrow night.

I started taking vitamin D-3 last friday. Hence, another break down of my kidneys not performing correctly. I will have to do more research on renal failure and its association with having to supplement with vitamin D-3.

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.

The social worker looking me over

I also met with a social worker briefly. She asked a bunch of different questions related to mental health and who would be my primary caregiver.

Social worker: "How do you handle stress?"

Me: "I think pretty good, although my husband would think otherwise this morning."

(the social worker gave me the ole' one eyebrow up trick)

Me: "He wanted me to read a map to get here....how can you read a map if you don't know where you are on the map? Needless to say we had an interesting chat" I chuckled. She agreed with me.

Of course she asked me if I did drugs, smoked, drank alchohol, took pills for mental health, etc. etc. Do we have transportation? Do I take my medicine regularly? Have I ever missed taking my medicine? A lot of the questions overlapped a bit.

I handed her some papers to fill out for the National Transplant Assistance Fund. She said she would fill them out and mail them back to me so I can start fundraising.

I guess I passed her test.....she asked me to be part of a support group she was putting together for transplant patients. (I told her I enjoy talking to others about this and mentioned my blog)

Next....was the nutritionist....and the renal diet!

21 tubes of blood on the wall.....

21 tubes of blood.....take one down and pass it around.....2o tubes of blood on the wall. That is no typo.....they took 21 tubes of blood from me yesterday! I talked to many people yesterday....I suppose the most amusing was Dr. Millgillacuddy.

I am not joking....that is his name. You are probably thinking he looks like the classic "nerdy" Doc. You are so wrong! With a name like that you have to be handsome and have a great smile. (Can I think of that about my Transplant Doc?) Let's just say he is easy on the eyes. OK...now for the serious stuff!

I'll probably have to break this down into a few segments over the course of the next week. There was a lot of info... I'll start with my first appointment of the morning and go from there.

My first appointment was with the Transplant Doctor at MUSC. Like I said his name is Dr. Millgillacuddy. He asked me a few questions about my health and immediate family's health. He then gave his dialysis vs. transplant speech. The pros and cons and the risks. As with ANY surgery there are risks....of course that scares the heck out of me, but I know I will be in good hands. He talked about the actual surgery and how they hook the new kidney to the two main veins that run down into your leg. I will have three kidneys instead of 2. I know that it is important for me to try and get a live donor....but it really sank in on how important for me at this stage in my life to get a live donor match. *** a side note is that I gave 5 more people's names to the transplant team. 3 of whom are people I don't even know. They are friend's of friends and a coworker of my sister. I cannot express the overwhelming gratitude I have for them.

I found something else Dr. Millgillacuddy said interesting. He said it was very unusual to have someone like me come in before I am on dialysis. Most of the patients they see are on dialysis or have been for quite some time. He also said they prefer to get candidates like me. This is the best scenario for transplant. If your GFR is 20 or below YOU CAN BE PUT ON THE TRANSPLANT LIST! We need to educate patients that have poor kidney function on this. My Nephrologists here at home NEVER suggested this way. I WAS THE ONE THAT INQUIRED. I cannot stress how important it is to make sure you know what is going on with your health. Yes....listen to your Doctors, but it doesn't hurt to question them or be a part of your own solution. Many Doctor's I meet think what is best for the majority of patients is best for you. Not always true. If you can build a good relationship with your Doctors (meaning you listen to their advice and they listen to your advice) it is a win-win situation.

I really have liked everyone I have come in contact with at MUSC. They like questions and they like patient's to be involved with their own health concerns. Maybe it is because they are a teaching university....I don't know. I do know I am comfortable with the staff there and not afraid of asking "why?"

BTW...did any of you catch House last night. The patient had Sjogren's Syndrome. I only caught the last 15 minutes. Was it a good interpretation of the disease?