Monday, November 21, 2016

Chicago Here I Come! - HSCT Update

I am just going to begin with the disclaimer that this will be my last update for a long while. This Friday, as in four short days from today, I leave to begin my Stem Cell/Bone Marrow Transplant process. The actual transplant will not be until December 29th, however; there is a month long work up before a transplant can begin. A patient must mobilize, create, and harvest their stem cells which is a long, and painful process. To learn more about this process please sift through a few of my older posts from the months of August - October!

The actual transplantation process is about a month as well, so my entire journey (if all goes according to plan) will be right around two months. As I do not see myself typing daily updates during this time, I will be creating video diaries of the entire process. My goal being one video a day for the entire two months. Please understand that goal may be completely ridiculous - and not happen! lol ;) However, I will do my best! If that goal falls through, I will be doing once a week updates here on the blog! The videos will be streamed live from my Facebook page found here: The Tube Fed Wife It may end up being both if I am lucky! So check here, and my Facebook page for updates just in case! Also, please note, I will not actively be replying to messages, or comments during this time! Thank you for understanding!

I have had many people ask for an address to send small care packages to -  up until the actual transplant process (December 29th) I will be in a hotel and not inpatient. Please hold all care packages until that time. After December 29th I will have a room number care packages can be sent to. I will have a Facebook Event Page detailing the address, and what can be sent. The transplant wing has very strict rules on what can, and cannot be sent since the tiniest of germs could kill a patient undergoing a transplant. Things like flowers, or any live plant are a HUGE no, as are homemade snacks! This page will also detail visiting rules and regulations.

As for a short health update - being off immunesuppressors while gearing up for the transplant over the past two months has reeked havoc on my body. All my physicians at this point have been very worried during my appointments, stating I seem to have declined pretty severely in the last few month. My breathing has gotten increasing worse, my joints have become incredibly stiff, and my stamina has become non-existent. My physicians seem to be just as excited as I am at the prospects of this transplant!
I have managed to do some very thorough Bucket List work in the past few weeks though! As the transplant approach, and all the uncertainty it brings, I decided I really wanted to knock off a few big items! I had the opportunity thanks to a wonderful wish granting foundation (Photo Below) to meet my favorite band, I spent a wonderful few days in Southern California, and New York during my last two last speaking engagement, received my fist pair of acrylic nails which I adore, I had my hair dyed lavender, and I even had the chance to protest for a cause I believe in! All the photos for these events can be found on my Facebook page!
I also filmed a short documentary with the incredible team at Project Scleroderma - a non-profit dedicated to sharing the raw journeys of patients battling this deadly disease.

Emotionally, I am having a bit of a rough time with the reality of this tasking process. I am worried - to say I wasn't would be a lie. I think the hardest park of this whole experience will be the length though - I am naturally a homesick person. I get emotional after two days away from my husband and beloved kitty! lol So two month is going to be a stretch for sure! We plan to Skype everyday so hopefully that will help ease my homesickness. Thank you as always for all the support and kind messages, comment, and posts I receive, they brighten my day!

I hope everyone enjoys their Thanksgiving!

Saturday, October 15, 2016

The Countdown Begins - Health Update

I feel like it has been a tremendously long time since I have given a solid health update. I have been so busy with pre-transplant evaluations, speaking engagements, and an onslaught of medical bills, I have neglected my blog a bit! Luckily, I have been pretty decent at giving small updates on my Facebook page - so if you are not already following head on over! I am going to start this update at the beginning of October, to make sure I don't miss any pertinent updates or events.

The first week of October I headed to my Ophthalmologist; my vision has quickly decreased over the last few months, to the point where I can barely see without glasses. Turns out my eyes are extremely dry - like so dry the film over my eye in my doctors words, "looks like a bumpy dessert." lol The film is supposed to be flat and moist, but my dry eye has caused the film to completely deform, leaving me with nearsightedness. My eyes are always noticeably red, and very itchy now. We started artificial tear drops 8 times a day, which still showed no improvement, so we moved to a steroid eye drop twice a day on top of the other drops. I went back a few weeks later to be evaluated and it seems my dry eye is pretty refractory to treatment since it is being caused by my autoimmune disease; my vision/symptoms didn't seem to improve at all on the new drops so my physician suggested placing plugs in my tear ducts in an attempt to keep my eyes moist! ....I have placed things all through my body, but my eye!? Yuck! lol Unfortunately, we wont get to find out if they help since they pose too high of an infection risk with my upcoming transplant. Hopefully the transplant will help the dry eye, or I may actually lose my vision due to the damage and inflammation being caused! Urg.

I saw my local cardiologist to review all my heart testing preformed in Chicago. We reviewed the results of all the evaluations, and he had mostly the exact same viewpoint of the transplant teams cardio. My heart, while it isn't great, isn't in failure! Woohoo! My ejection fraction is lower than normal, and I do have significant electrical imbalances, however; he believes I will be just fine during the transplant. His opinion eased my worry a bit since he is so familiar with my case. We spoke about the new electrical imbalances found while in Chicago and he did express that in a few years I will need to have a defibrillator placed - but that I shouldn't be worrying about it right at this moment.

I also saw my Scleroderma specialist. I had been feeling a bit off that week, but made it to the appointment after an extremely rough morning. I woke up that day with completely locked, and incredibly swollen joints! I was unable to move my writs or fingers in the slightest, and my hands, shoulder, knees, ankles, and elbows looked like someone had inflated them! Everything was bright red and so painful, I was in tears trying to get dressed. When my physician came into the room he took one look at me and sent me for a direct hospital admission! By that point I was unable to walk, or really do anything at all due to the swelling and pain. I was in the hospital for three days while we tried to get the swelling and pain under control. Since I had a fever the physicians all believed I had some sort of transient virus that caused my immune system to become confused and attack my joints. If you recall, autoimmune disease is an overactive immune system that attacks your body -- instead of foreign invaders like it is programmed to do. When autoimmune patients become sick our system goes berserk and causes us even more grief! After a few days of heavy anit-inflammatory meds I was released home.

Regarding my HSCT I have some awesome news! By the grace of God my insurance APPROVED TREATMENT! This means the majority of my procedure costs will be covered! That is a huge 150,000 burden relieved from my shoulders! Unfortunately, there is still an incredible out of pocket costs to receive treatment; copays, a large deductible, necessary prescriptions, months of hotels, eight cross country flights, transportation, etc, all fall onto my family. I will still need to raise at least 25,000 dollars to receive this life saving treatment! We are currently over halfway to the goal funds! Please visit to donate!
I also received my procedure dates this month. The transplant is broken into two phases, the first phase where you are preparing your body to produce stem cells, and the second phase where the transplant is actually preformed. The first phase is out patient, while the second phase is in patient.

  1. Nov 25th - Dec 18th Phase One:
    1. Nov 28th Pre-Testing - a few procedures to asses my pre-transplant status 
    2. Dec 6th Mobilization - one day of chemo to mobilize stem cells
    3. Dec 11th - 16th Neupogen - shots to over produce/migrate cells to blood from bone marrow
    4. Dec 16th Harvest - harvesting of the stem cells through apheresis
  2. Dec 18th - 25th Six Day Christmas Break at Home
  3. Dec 26th - (Unknown) Phase Two
    1. Dec 28th - (TBD) Transplant
      1. Dec 29th - Jan 2nd Chemotherapy - 5 days of intensive chemo to wipe out immune system
      2. Jan 3rd Stem cell Infusion - stem cells reintroduced through infusion
      3. (TBD) Stem Cell Grafting - waiting period while cells graft to my bone marrow
This is going to be a hellish two+ months so please bare with me as updates on the blog will be minimal. I do, however, want to share the reality of this treatment with the world, and will be doing daily, live video updates on my Facebook page! To support this journey you may make a donation to my transplant fund! You could also attend my super fun Singing For Stem Cells Karaoke Event this Thursday! Come out, sing a song, and save my life! We still need to raise about 10,000 more dollars to cover the out of pocket costs accumulated during this treatment, so why not karaoke for a cause?!

This month I also had the privilege of presenting in Missouri at the Scleroderma Foundations Heartland Chapter Patient Education Day! What a lovely group of people, passionate about bringing empowerment, education, and support to patients! For photos, visit my Facebook page linked above! Next off I am off to New Jersey to present at the Scleroderma Foundations Children's Conference Halloween weekend! As always, thank you all for your support! All of you that have shared my Singing For Stem cells video helped to raise over 11,000 dollars! Thank you for offering me your time, and hard earned money - they have given me a second chance at life!