Stem Cell Transplant - Five weeks of hospital fun! (Jan 13th - Feb 10th)

Jan 13th
Showed up at Baylor at 0930 so they could place my central line in my chest.  The central line has a tube that connects to one of the large veins near your neck and it splits into three tubes.  This way they can take blood, return blood and have you on IV all at the same time.  Honestly, this is the part of the procedure that worries me most.  I have never had surgery and swore that the only way that I would let someone take a knife to me is to save my life ... apparently I like irony.
Once I get checked in and into the standard hospital gown the take me to the pre-op room.  Here a nice nurse places an IV line the size of a garden hose in my arm.  Thank god she atleast deadened the area.  The surgeon then came in while the nurse was playing pin cushion with my arm and spoke with me about the procedure.  He proceeded to tell me all the different ways that this procedure could go wrong.  He concluded his "pep talk" with "don't worry you'll be fine" ... I feel much more confident now ... thanks doc!  Once the surgeon left, in came the anesthesiologist, BTW the nurse is still putting the garden hose in, to give his bit about anesthesia and its issues.  By this time the nurse is done and the anesthesiologist gives me an injection to take the "edge off".  Whatever he gave me, I didn't make it out of pre-op conscience.
As an aside, for those of you that have never had surgery before.  During surgery you are completely naked on the table according to what one of the nurses told me.  They then cover you "strategically" only with a paper sheet.  I was admittedly a little uncomfortable with this explanation and that I was about to undergo the process.  Unconscious with no clothes on in a room full of strangers is never a good proposition.
So the surgeon does his thing and I wake up in the recovery area.  I guess my blood pressure had dropped pretty low during the procedure so I had to hang around in recovery for a few hours.  Once my BP had gone back up I was whisked away to the Bone Marrow Transplant Unit (BMTU) ICU area.  Given my heart issue they had to monitor me for a few days.  I had been told that the rooms were good sized, however the ICU rooms are about the size of a closet.  At this point it was late in the afternoon and I settled in for the night.  The fun was to begin tomorrow.

Jan 14th
I started receiving Neupogen shots to boost my blood cell counts which in turn boosts stem cell production.  I received these for the next three days.  Now one of the side effects of the Neupogen is bone pain.  I thought I was in the clear since I never had any pains ... until the last day.  On the last day the pains started just below might right knee in the shin.  It felt like someone was hitting me continuously with a hammer.  I kept looking around for Tanya Harding.  After all the Neupogen shots my blood counts were through the roof.

Jan 18th
Apheresis started today.  This is a process where they pull your blood out and send it through a machine that clicks incessantly and then send it back into you.  The machine centrifuges the blood and seperates the stem cells out of the blood.  The first time I experienced this they started the machine and I saw my blood leaving my body .... but nothing was coming back.  I waited and waited and waited and still nothing.  At this point I had to ask if my blood was going to Cleveland before coming back to me.  The nurse assured me that this was normal.  The delay not the travel to Cleveland.

Jan 19th - 21st
The nurse came in and woke my from blissful slumber at 0545 to go for collection.  Well after getting ready to go I started out the door and the nurse stopped me and told me that the unit was full after all and that I had been bumped back to 1030.  If I could have lifted my IV pole I would hit the guy.  I was a little cranky since they woke me up so damn early and my leg was still hurting from the Neupogen.
The collection process lasted for four days total and each session lasted five hours.  Thankfully, I didn't have nausea or diarrhea like some of the other patients because once you're on the machine you can't leave.  On my last day of collection I got a treat.  They moved me from my ICU closet room to a regular room in the unit.  It was definitely one of the biggest hospital rooms I've ever seen and served as a good morale boost.  Now began the waiting game.  Before they can give me the chemo (Melphalan) dose to kill my bone marrow (and subsequently everything else in my body) my blood counts had to start coming down.

Jan 24th
Today I received my high dose of Melphalan.  Let the killin' begin!!!  I get a day of rest and then the next day the SCT begins.

Jan 26th - 27th
Happy birthday to me!!  In the BMTU when a patient received their transplant it is considered your new/second birthday.  Because of my unique situation with the heart and amyloidosis my transplant was going to take two days to complete.  The first day I got five of nine bags of my stem cells put back into me.  The procedure had been described to me and it sounded like a seance.  The occupational therapists came in put pressure point wrist bands on me to help me relax, scented oils were rubbed behind my ears, my feet were massaged (that was awesome) and when they opened the cooler with the stem cell you could see the liquid nitrogen fog.  Thankfully there were no Ouija boards involved!  Next they gave me a huge dose of Benedryl to help combat any adverse reaction to the preservative in the stem cells.  It also helped to make me super groggy.  When they began the injection of the stem cells I was able to enjoy quite possibly the most uncomfortable feeling of my life.  As they pushed the stem cells in my heart literaly felt like it was going to pop.  Couple this with the uber-groggy feeling from the Benedryl and it was an awful day.
The next day was the same except this time they cut the Benedryl dose in half.  That reduction and the fact that I didn't fight the grogginess this time and went to sleep helped make the day better.  Now, a peculiar side effect of the preservative is that it causes the patient to emit a strong creamed corn odor.  Luckily I never smelled it but if you ask Alyson about it ... she'll tell you how it was a plesant smell to experience for over a week!  I've noticed that we haven't had creamed corn since my transplant ... I wonder why?
Once the transplant was complete I got to watch my daily blood count numbers steadily decline.  The first four days the numbers fluctuated up and down but then after another four days on Feb 4th I officially did not have an immune system.  Now I just had to hope that the stem cells were going to do their job and "reboot" my immune system.  I had to start taking Neupogen shots again for a couple of days to help boost my blood counts.  Of course Neupogen equals bone pain but I guess that is a small price to pay to be able to fight off the simplest of infections.

Feb 8th
My doctor says I'm ready to be paroled!!  Of course for the next several weeks I'll have to wear a mask when going outside to face the general public and for atleast three months be extremely careful hygiene wise.  Basically I'll have to wash my hands after touching anything and I started carrying hand sanitizer with me everywhere.  On an interesting note, you never realize just how many people DO NOT WASH THEIR HANDS after using the restroom until handwashing becomes critical to your survival!!!!  Come on people that is just gross!!!
The weather for the 9th was forecasted to bad so we delayed my departure until the 10th, basically this would allow the snow and ice to melt.  While washing my hair on the 9th I got a little surprise.  My hair was coming out in handfuls.  This was part of the SCT owner's manual that I guess I missed.  When I talked with my nurse she said that she was suprised that it hadn't started falling out earlier.  So to avoid the possibility of uneven hair loss they were nice enough to have someone come in and shave my head the next day.

Feb 10th
Today was really busy.  Head shaved, therapists coming in to explain how to exercise, how to avoid infection, nutritionists to explain how to eat, what type of appetite to expect, packing up all the clothes and stuff that had accumulated over the extended stay and finally the cart and wheelchair arrived.  I was free!!!  It was a long and arduous process but here's hoping it sticks!!!