Week #5

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 Well, it certainly was a busy week! Sunday I stayed in and rested after a busy week and having to say goodbye to Eddie on Saturday. Then I got showered and dressed for my brother &  sis in law coming to visit. We sat and chatted a bit then went too dinner at The Grand Lux. That is such a cool place, and good food. I had Asian Nachos, yumm-o! Comes with 8 nachos and rice in the middle. I ate 4 of the nachos, not much rice and had a banana pudding dessert. Leftovers on Monday were just delightful!

So, Monday I had the heart catheterization! After getting all prepped for it, a young woman doctor (fellow-in other words, beginner!) came in to talk to me about the procedure and explained what was going to happen and then an elderly doctor (about 80, I kid you not) came in to see me too and go over everything again). No one said who was going to be doing the actual procedure, but I found out soon enough. Then you go in this room with lots of funky looking machines that remind you of a good horror scientific movie scene! Well, maybe not that bad, but pretty intimidating, nonetheless. You lay on this skinny bed--slab might be a better definition, they even have to add arm holders on the sides so your arms just don't drape over the edge and wrap them to your sides and I even hooked my thumbs under my bottom so they wouldn't fall off (not my thumbs, but the arms off the bed)! Then they cover you with (thankfully warm) blankets and remove your beautiful gown! I have already been shaved on both sides of groin in case they need to move from one side to the other to do the procedure (we were able to stick to the right side). Next both doctors come in and the fellow is the one going to do the procedure with the elder by her side, whispering all the while. She did a great job in my opinion and I'm sure she will be a very good cardiologist or whatever when she comes through all her schooling. The needle pinch and lidocaine that burns a bit going in I'm sure is better than not having it at all but it didn't hurt as much as when the port catheter that was put in my neck for the stem cell harvest - location location location must have something to do with that reaction. Ok, so then they poke open to place the line wire to go up to the heart. That doesn't feel too bad and I was able to watch it on the tv. Once they got it to the heart the tvs and other machines moved around a lot so I didn't get to see as much. It felt a bit weird from time to time just moving around in there and when she pushed the dye in to color the blood to see the actual arteries I got a see a few of those shots, that looked really neat; like a tree with the roots going down in the ground. It took quite some time as I imagine there are a lot of places they have to check, so you lay there and lay there. During both my procedures I just kept asking Jesus to hold my hand and keep me calm - the song that came to my mind was "Jesus, take the wheel" by Carrie Underwood! In the end, though, all went well and the elder doctor says to me on his way out "Just stay away from stress tests!" That made me laugh! Later, the younger woman doctor reported to me that my heart looked beautiful and my arteries were like ones they don't get to see very often there! Yippee!! Good report!

So, the next procedure was on Wednesday to have my PICC line put in which is where all the meds, chemo, blood draws will come out of! Yea, no more needle sticks; I look like a pin cushion. 

What a story to tell about this whole situation. The man that brought me in was named Anthony and he was a such a blessing to me all morning. He had cancer and worked through that situation successfully with the Lord's help and we had a nice chat. But, while he was bringing me in to the "holding stall" so I shall call it, he was saying my name for identification purposes and a woman across the hall heard it and thought to herself, "I know that name!" She kept quiet a while during the time I was changing into the gown for the procedure but soon we were chatting and she said, I know you from facebook! Well, imagine my surprise at that! Her son was in for a procedure that was not going to be able to get done at that time and they had been there all morning. It turns out that we are friends because she has the same disease I do and she lives about an hour south of here. Her name is Teresa Richert and her son is Brad. We chatted quite a bit and got some good hugs in too! We both are faith filled women and had some nice "God talk" too. We both felt it was meant for us to meet even though it was an inconvenience for and her son, but hopefully his situation will be able to get fixed so he can get what he needs and they learned a bit more about his problems.

The PICC line went in after having to try two different places (the 2nd one worked just fine; and what's one more poke in my arm anyway?). It bothered me most of all the things as it ends up right in the middle of your chest and feels funny. I lay on my left side to sleep mostly and I can really feel it, so I've had to adjust to that but last night I could actually lay on my left side fairly well and not notice it. 

Okay, we are up to admission day, Thursday. Early day, 7:30am to be at hospital. I hope you all got to see the pictures of the room and my view of Lake Michigan. I think I have the best room on the floor! Room 1566 in the Prentice Women's Hospital. Top two floors are for transplant patients, rest of the hospital is for the babies! 

Got started with Rituxan which is a immune suppressant so it doesn't fight the stuff coming in. In the evening I got a dizzy spell for about a 1/2 hour and the call button was across the room (we've learned to put it where I am sitting) but I knew the nurse was coming soon to give me my evening meds, so I just patiently waiting rather than risk getting up and falling. When she came in, I got up carefully and went to the bathroom to get ready for bed and laid down and went to sleep. All was well after that. I get those episodes every once in a while (about twice a month at no particular time or reason; meds, time of the month, whatever) so I don't know if it's CIDP or just me. 

Friday, getting Rabbit ATG, which is a T cell suppressant. Since I woke at 3am this morning, I was looking forward to the Benedryl nap, but the Rabbit "juice" likes to bubble up and there were lots of beeps to keep me awake and the nurse kept having to come in and fix the line. Then when that was cleared up, about 6 times at least...Then the allergist folks came in to check to see if I was still allergic to Penicillin. I was very young diagnosed with that, and they say in about 10 years you can be over it and since it was probably over 40 years ago, the chances are good that I'm not anymore. Lots of pin pricks and jabs into skin (like the TB  test) and that went on for about 2 hours, so needless  to say, no nap for Wendy today! Hopefully, a good nights sleep coming! The good news is there was no reaction to the test, so they will be able to give me the meds they want to when I may need them from the penicillin family. 

Today, Saturday is the day I start the chemo (Cytoxan) and lots of other drugs to keep away nausea, headaches, etc. The chemo is now in me and so is the Benedryl, so I'm getting sleepy again. I feel fine otherwise, but lots of folks say it after day # of chemo the reactions start, so we will see. I am so covered with prayer and I know God is right here with me; I will handle it all with His grace and help!

I'm gonna stop here and maybe take a nap! Talk to all you good folks soon, I hope!
God bless you all!
Wendy :)

More info on SCT if interested

Here is a list of others who have gone thru a Stem Cell Transplant if you are interested in reading and viewing their process. Dr. Burt's team does SCT for more than 20 auto immune diseases and has been doing them for over 20 years. The following are just CIDP patients, like me:

 Jennifer Osman   (SCT April 2005) 1st one ever to do it for CIDP

her blog : http://www.caringbridge.org/il/jeno/

 http://www.frcblog.com/2010/02/a-neurological-save-with-adult-stem-cells/

http://www.medicine.northwestern.edu/10/mar/matter-life-and-death

Kevin Devery  (SCT Oct 2007)

great videos :

http://www.youtube.com/results?search_query=kevinlj182&aq=f

  

 Jerry Burns  Phoenix AZ  (SCT Feb 2009) 

http://www.carepages.com/carepages/JerryBurns1954 

Tannia Munoz  (SCT June 2009)

great videos 

http://www.youtube.com/user/TanniaM3

 

Lynn Mac Donald  (SCT Sept 2009)

http://www.carepages.com/carepages/LynnMac

http://www.gbs-cidp.org/forums/showthread.php?t=6461

 

Alice Dicroce  (SCT Oct 2009)

www.alicedicroce.com

www.facebook.com/cidpstemcelltransplant .

^^ you can find lots more info here about SCT and which diseases they are working on here

Rossana Roa  (SCT June 2010) 

http://rossanascidp.blogspot.com/

 

Jim Danhakl   (SCT March 2010)

Jim’s blog : http://www.alicedicroce.com/untitled-page.html

Sharon Mackwell  (SCT Sept 2010)

http://www.ntafund.org/find-a-patient/profile/news.cfm/patient/7D7541E0-DB02-CA07-6CA658BA46465C75

Robert Postel  (SCT May 2011) 

http://www.gofundme.com/Stem-Cell-Transplant-Pre-and-Post-Care

Here is a list of other auto immune diseases being treated by SCT:

- Scleroderma (Systemic Sclerosis)

- Inflammatory Bowel Disease (Chrohn's disease, ulcerative colitis)

- Systemic Lupus Erythematosus (SLE)

- Polymyositis - Dermatomyositis - Evans syndrome

- Hashimoto's thyroiditis

- Chronic inflammatory demyelinating polyneuropathy (CIDP)

- Graves' disease

- Autoimmune hemolytic anemia

- Autoimmune blistering diseases

- Autoimmune lymphoproliferative syndrome

- Myasthenia gravis

- Psoriatic arthritis

- Wegener's granulomatosis

- Sjögren's syndrome (Mikulicz disease, Sicca syndrome)

- Churg-Strauss syndrome

- Microscopic polyangiitis

- Relapsing polychondritis

- Pemphigus vulgaris

- Sarcoidosis

- Ankylosing spondylitis

- Diabetes mellitus type 1 (but only if HSCT is performed within several months following disease onset)

- Sickle Cell Disease can be cured with a similar HSCT procedure utilizing mixed chimerism with a partial-match HLA doner

Caring to share...

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 One of my favorite readings in the bible is from Psalm 121, especially when I read it in first person. Let me share...

Psalm 121 

¹ I look up to the mountains—

    does my help come from there?
² My help comes from the Lord,
    who made heaven and earth!

³ He will not let me stumble;
    the one who watches over me will not slumber.
⁴ Indeed, he who watches over Israel
    never slumbers or sleeps.

⁵ The Lord himself watches over me!
    The Lord stands beside me as my protective shade.
⁶ The sun will not harm me by day,
    nor the moon at night.

⁷ The Lord keeps me from all harm
    and watches over my life.
⁸ The Lord keeps watch over me as I come and go,
    both now and forever.   (NIV) http://www.biblegateway.com/passage
 Holy Bible, New International Version®, NIV® Copyright © 1973, 1978, 1984, 2011 by Biblica, Inc.® Used by permission. All rights reserved worldwide.

In the first verse where it says "I look up to the mountains--", as people; I think, often we look to the things we consider "big" in our world, could be the government, priest, pastor, mate or money! But those are not the things that will give us the answers that we really need! Our answers come from Christ alone. He is the one who took our sins to the cross and there died with them upon Him; He took the sins of the whole world when He hung on that cross! Whether we believe in Him or not, and that is what He came here for. He came to take away our sins; past, present and future so that we may have a right relationship with the LORD. It is the LORD (God in heaven) who used Jesus to speak to those while He was on earth and to teach us the way to Him. Also, He ordained the written word for us to be able to get and stay connected to Him on a regular basis.

 ^{Galatians 1:11} But I make known to you, brethren, that the gospel which was preached by me is not according to man. ¹² For I neither received it from man, nor was I taught it, but it came through the revelation of Jesus Christ. (NKJV)

If you don't know Christ as your gateway to the LORD, I encourage you to read the book of John in the New Testament and also the book of Romans. Romans 3:19 - 6 (all) is especially helpful. Most of you have probably heard the term "born again", but it is not just a name we made up; it is a command from the Lord in John 3:

John 3 (NKJV)

The New Birth

3 There was a man of the Pharisees named Nicodemus, a ruler of the Jews. ² This man came to Jesus by night and said to Him, “Rabbi, we know that You are a teacher come from God; for no one can do these signs that You do unless God is with him.”

³ Jesus answered and said to him, “Most assuredly, I say to you, unless one is born again, he cannot see the kingdom of God.”
⁴ Nicodemus said to Him, “How can a man be born when he is old? Can he enter a second time into his mother’s womb and be born?”
⁵ Jesus answered, “Most assuredly, I say to you, unless one is born of water and the Spirit, he cannot enter the kingdom of God. ⁶ That which is born of the flesh is flesh, and that which is born of the Spirit is spirit. ⁷ Do not marvel that I said to you, ‘You must be born again.’ ⁸ The wind blows where it wishes, and you hear the sound of it, but cannot tell where it comes from and where it goes. So is everyone who is born of the Spirit.”  (italics added by author)

It's so easy when you open your mind and your heart to this possibility that this is the truth! If you read and are open to this, ask Jesus to forgive you and request Him to become the leader of your heart and life. Self-change prior to this is not necessary. Then find a good bible believing and teaching church to fellowship in.

Two of my spiritual mentors for many years have been my sister, Ruth Ann and my very good friend, Shelley. They both have shown me love, care and how to live a good christian life. My sister is the tougher of the two, she's the one that tells me that I am not doing something that I should be and risks the chance of hurting our relationship in order to help me see what needs to be changed in my life. She is not perfect, though; and it's okay, I've turned those tables a time or two! (chuckle) But it's for our betterment and we know that. We've been through a lot of ups and downs and it's made our relationship stronger. We are not just sisters by blood but through our faith have become even closer. 

Then there is my friend Shelley, who's shown me always grace and love plus caring, giving and such a generous heart. There was a time, after Scott died, that Jonathan and I went to see her. He husband was away at a business meeting and she gave up her master bedroom suite for me! I was just luxuriated in this cocoon of comfort and tranquility and peace that just overwhelmed me. Her generosity is boundless and it is through her love of Christ that enables her to be as generous and loving as she is. She is having her own health issues for longer than I have been dealing with CIDP, so we pray a lot for one another and no matter how our health situations turn out we know we will meet again in heaven and will continue our friendship there. 

My husband, Eddie, is another gentle soul who inspires me to be a better person. His strength and beliefs are built on the solid rock of Christ. He is just as he should be for me and treats others and myself with respect and love that shows the Jesus in him. He's not perfect either, as none of us are. I pray that my son, Jonathan, has seen enough of a good example while living at our home in the past and having had his earlier years filled with God's word, that he becomes the man God has intended.

To those who may know the Lord, but have perhaps backslid; please let me share this with you from The Message: 

Hebrews 4

 ^1-3For as long, then, as that promise of resting in him pulls us on to God's goal for us, we need to be careful that we're not disqualified. We received the same promises as those people in the wilderness, but the promises didn't do them a bit of good because they didn't receive the promises with faith. If we believe, though, we'll experience that state of resting. But not if we don't have faith. Remember that God said,

   Exasperated, I vowed,
      "They'll never get where they're going,
      never be able to sit down and rest."  ^3-7God made that vow, even though he'd finished his part before the foundation of the world. Somewhere it's written, "God rested the seventh day, having completed his work," but in this other text he says, "They'll never be able to sit down and rest." So this promise has not yet been fulfilled. Those earlier ones never did get to the place of rest because they were disobedient. God keeps renewing the promise and setting the date as today, just as he did in David's psalm, centuries later than the original invitation:
   Today, please listen,
      don't turn a deaf ear . . .
 ^8-11And so this is still a live promise. It wasn't canceled at the time of Joshua; otherwise, God wouldn't keep renewing the appointment for "today." The promise of "arrival" and "rest" is still there for God's people. God himself is at rest. And at the end of the journey we'll surely rest with God. So let's keep at it and eventually arrive at the place of rest, not drop out through some sort of disobedience.
 ^12-13God means what he says. What he says goes. His powerful Word is sharp as a surgeon's scalpel, cutting through everything, whether doubt or defense, laying us open to listen and obey. Nothing and no one is impervious to God's Word. We can't get away from it—no matter what. (Colored and italicized added by author.)

It is time to get right with the LORD for all peoples. The time of judgement is coming soon, be it at our own deaths or when Christ returns!

4th weeks ups and downs

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Oh yes, this was a busy week! Results came to me from Paula on Monday from the cardiologist (Dr Shah) and Dr Burt. Dr Shah did not like the looks of my stress test in the fact that the tachycardia lasted for 1 minute 11 seconds after they stopped the test. So that means I have to have a cardiac catheterization. Don't know when that is going to happen at this point. Bummer! The thing is, though, if there is something wrong with my heart and I need a stent; this is the best time to find out and fix it. If I were to go through the cytoxin (chemo) and it overstresses my heart, it could really be bad. Better to be safe than sorry. As I have said before, they are nothing but thorough!
On Tuesday, we went to the blood center for my IVIg. I get to sit in a recliner for 5 hours for this and it is only a half dose. I am to come back the next day for my 2nd half. When I get done this and we get back to the apartment, I feel a bit warm and take my temperature. It is at 99.0. Now that might not sound too high but my normal temperature runs low, about 95-97 degrees. I'm thinking I'm getting a fever. When it hits 99.5 I call Paula. So, Paula and Dr Burt call me back and say if it goes over 100 to go to the ER. Okay, okay I will. Tried the ice cubes on my head, window open by cool air and a tepid bath. No go, 100.5 and we head to the hospital at about 6pm. Well, let me tell you when you are neutrapenic and you go to the ER, you get quick action! Sat for about 2 minutes and was called to be taken out of there. I got a lot of dirty looks from an almost full ER waiting room. Got to a safe, private, "clean" room and got an IV put in (by the way, if this happens to any of you following me; ask the nurse if she can put it in a vein that is not in the crook of your prominent arm). They pulled blood and my white blood count was 1.2, normal is over 10. My fever was 101 degrees. So I had to be admitted. Back up to the Prentice 16th floor! Only it took until 6am to get me there! At least Eddie knew at 1pm that I was being admitted and he could go home. I was given anti biotic after anti biotic, tylenol, and any other meds I was supposed to take and some more for good measure, I'm sure! All monitored very closely and not without permission! So now it is Wednesday morning and Dr Burt & Amy come by to see how I'm doing. I remind them I need my second batch of IVIg and Amy orders it for me about 10:30am. The rest of the day consists of waiting, being given more anti biotics, oh yeah and nuepogen! 3:30pm still no IVIg, called nurse and she's been on the phone with pharmacy several times to see where it is also. They keep saying it's taking a long time mixing...4:30 still no IVIg; I call Paula, she usually is the go-to gal but she doesn't have pull with the pharmacy folks! In the meantime, I can feel my temperature starting to go up again and sure enough I'm back to 99.1, keep those anti biotics flowing. At 5:30 still no IVIg, nurse says they will bring it up as soon as it is done; they promise by 7pm! "7pm!" I say! Well, it finally got there about 6:45pm and she gave me the pre-meds of tylenol and benedril and says she'll be back in half an hour to start it. I said, ah no, just start it now, at home I don't ever take the pre-meds and I don't have any trouble so just get it going!! The bottle they bring is smaller than the one they brought me when I got it the day before and it had a few more grams of IVIg in it than it was supposed to (42 instead of 39) but we ran it anyway and it was done in about 2 1/2 hours instead of 5. This is more like I was used to when i get it in Florida. Their laws here are different and they mix it with more solution (at least they did the other days I had it). So I wasn't going to complain about it!
When it was finished, I put in my earplugs and put on my eye mask (an absolute MUST for those of you behind me) and slept mostly through the night. Still had to wake for blood draws and vitals from time to time. 
Thursday morning woke for another neupogen shot, and then went off to get the lovely temporary port in the neck for my harvest. Oh, that was enjoyable - ah, not so much. But not painful, just very uncomfortable! Then back to the room; it was all done in about 2 hours. Dr Burt & Amy stopped by and they discharged me to go get my cells harvested. I got rolled over to the Feinburg Blood center and was hooked up in no time. 4 hours later, 20.8 million stem cells were collected!!!! (Only needed 2 million for transplant.) The removal of the port was much better than getting it put in. 

When I came home (apt) I wasn't even hungry, just ate 1/2 bowl of soup and went to bed and slept 14 hours! Friday was just kind of a restful, quiet day and Eddie and I ordered dinner from a company that delivers from all over the city called "Grub Hub"(mark this in your bookmarks if you are coming up for treatment). I got prime rib! It was delicious and I have a least enough leftover for 2 more meals.
Today, Saturday, Eddie left (sad face) but I am feeling much better! My brother and his wife may come for a visit tomorrow.
When I go for the heart cath on Monday, this is what might happen. If they find nothing wrong, they pull the instrument out and we go forth as scheduled! If they should find a blockage, they will put in a stent and the SCT treatment will be postponed for 30 days. I will have to pack up all my stuff and fly home and come back to restart where we left off. Of course, I hope there is nothing to find so I don't have the hassle of the packing, etc. but if it is God's will that this is how a problem in my heart is to be found, then it is all for the best!

The 3rd week in Chicago.

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Chemo mobilization starts today (Monday, April 2nd)! Bright and early, after not sleeping too well (excited to get started) I walked to the hospital and was admitted to my room by 8:00am! IV put in, blood taken out for labs, fluids started and mesna to protect the bladder and kidneys from the chemo started. Then my sister arrived! So nice to see a familiar face! Every one of the nurses and staff are wonderful but they can't take the place of family! Lasix started too, so up and into the bathroom quite often. Then, I got another pleasant surprise! My brother John and his wife Janet came in! They and my sister probably haven't seen each other for I guess about 8 years so that was a great visit! They went out to dinner together and brought me back dessert from The Cheesecake Factory! Yumm-o! 

                              My brother John & his lovely wife Janet
When I went to sleep, they come to check your vitals in the middle of the night, of course. My blood pressure was only 80/44; just a tad low wouldn't you say? So they increased my fluid intake and decreased the lasix. It came up okay through to the morning. Well, I happened to mention to Amy (another one of Dr. Burt's great nurses) that when I receive a lot of fluids, even with my IVIg infusions, I get a "heavy" feeling in my chest and upper back. Which I was feeling at this time because there was A LOT of fluids going in. She told Dr. Burt about this and guess what?! I have to have a chemically induced stress test. Sigh! We go back to the apartment for the night and I wake up at 2:00am to go to the bathroom. I am so dizzy I can hardly stay upright! I try sitting up for a while and thankfully Ruth Ann woke up to give me moral support. I finally did fall back to sleep and woke about 6:30am still dizzy. I called Amy and she told me to take a Zofran which is for nausea but it might help. By that time I had talked to Eddie too, and he posted on facebook for prayer for me. Finally, by about 10:30am my dizziness subsided. 
I had an appointment with the cardiologist at 12:45 where I just answered questions and they (he and a fellow) listened to my lungs and heart. They also looked at my previous EKG and Doppler scan, which looked just fine. However, I still had to have the stress test at 3:45pm. I couldn't eat anything for 5 hours before the test so Ruth Ann and I just hung out at the hospital (she had ice cream!) since there was no use going out to do anything. We like to people watch and chat and share about the Lord with folks, so we were well entertained. 
I got in about 4:00pm for the start of the test, another IV! Oh, joy! Lay down on the bed while some stuff is going in my veins to increase my heart rate, squeeze a rubber ball and move my legs as I can to raise my heart rate. Then another person is taking pictures of my heart while this is going on. I guess it wasn't going up fast enough, so the tech put in another medication to give me a boost which apparently really worked, because I went into tachycardia! She immediately stopped the test but the other tech was able to keep taking pictures while I was having this reaction; it lasted for over a minute!   Whew, glad that was over, it is the weirdest feeling and very uncomfortable. I got calmed down and my heart rate lowered but then got the shivers and they covered me with warm blankets; that felt better. It was now about 5:30pm and I was ready to get out of there and get some food!
Ruth Ann and I went to The Elephant and Castle for dinner and had the Shepard's Pie, tasted soooooo good. 

                                         Elephant and Castle Pub




Thursday lasted about 3 days, I think. It just went on and on...I had to go back to the hospital for labs again, but this time it was a fasting lab since they wanted to check my cholesterol and triglycerides. Ruth Ann and I were going to go do a little shopping at a thrift store we found on the internet that was nearby, but I got about 2 blocks away from the hospital and knew I just couldn't do it! So we turned and walked back to the hotel for a nap and then some lunch. Ruth Ann was having some blood pressure issues of her own for a little while and she was dizzy too (we like to do things together!). After lunch, we did walk to a GNC for some fish oil tablets for her and they seemed to help, thankfully! In the meantime, Paula called with my lab results; cholesterol and triglycerides were not as bad as I thought they might be! Dr. Burt looked at the results of the stress test but wanted to confer with the cardiologist before deciding what to say and the cardiologist needed to look at the results himself before talking to Dr. Burt. I didn't hear anything be end of day Thursday one way or another.  We had another nap after that walk and then some dinner. No wonder that day seemed so long...

                            My two bestest friends, Eddie & Ruth Ann

Friday came and went with no news from Dr. Burt's office, so we are going forward with the "no news is good news" motto! (With Paula's blessing.) Saturday I started the neupogen shots, which will increase my blood growth in the marrow for the harvest this coming Thursday. Also, two antibiotics started at this time. Ruth Ann leaves today and Eddie comes today! They got to be with me at the same time for about a half an hour. So this about catches us up-to-date again!

So many blessings...(acceptance & insurance)

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When I got back home from the evaluation process I figured it was wait time! Well, God had other plans! He just paved the rest of the way in short order, let me tell you! So, I got back from Chicago on Monday, December 5th and on Tuesday, December 6th Paula called to tell me I was IN! By the way, in 2010 when I was diagnosed it was 2 days after my 55th birthday and last year I hear I am accepted into the SCT program 2 days before my birthday! I believe this year ON my birthday, I will hear I beat CIDP!! 
Now, we have United Healthcare for insurance and right in their paperwork we all get a copy of it states that they do pay for stem cell transplants for people as long as it isn't in "trial". Which, of course, the SCT I am doing is a trial, so I anticipate a battle! Paula (Dr. Burt's) nurse, is the one who sends off the insurance requests and she put in for mine Dec 7th or 8th and I figured a few weeks before I will hear anything.  I decided to call her on Dec 22nd just to see IF something came through yet. I left a message on her machine and she called me back to tell me "I have an early Christmas present for you!". Wow! I was so surprised to hear she had an answer already let alone a positive one!! Thank You Jesus!!
I spoke to Paula again the following week to set my date!  I probably could have come up for the transplant a lot sooner but my sister wanted to come up to be with me and she had spring break at a certain time and we counted back from there for my start date in March.
Now, the next thing we were concerned about was the hotel and air fare costs. I got on the phone with my insurance representative on Thursday, January 5th about whether or not they have a program of this type. He didn't know, but said he would check with another lady there and get back to me. Friday, the very next day, I walked out for the mail and in the mail box was a letter to me stating that the insurance company will cover the travel and lodging! I lifted my eyes heavenward and just said "Thank you, thank you, thank you Lord!"