~ Hospital~

This is the Catheter they put in my chest

On Friday we got to the hospital and checked in. They put my neostar catheter in my chest. First they gave me and IV and put me to sleep, then ran a tube down my throat... now I have a really sore throat:( The Dr. That did that procedure was named Dr Capeheart and he looked to me about 80:(


my neostar..

After that they admitted me to the 13 floor in the Roberts buiding.. they hooked me up to a   telemetry machine

to monitor my heart while I get my Neupogen Shots.

They started my shots Friday night. I didn't have any problems. Saturday My neck and arm was so sore, but I didn't want any pain meds. all my family came to visit, I love my family:) Alex took Lucas to the races, because I wanted him to,I was really nervous that they were racing without me there, but Lucas is doing so good, I would hate for him to lose his points on account of me. He got 2nd place :) I'm so proud of him.Shawna stayed with me until Alex got back up here at 2AM she is such a sweetie. I got my 2nd shot Saturday about 9PM by 10 PM my back hurt .. it was weird they said my bones would hurt, but it was like my nerves in my back. My Dr Agura came in about 1AM (love their hours) and said my heart was doing beautiful, I said, "good can I go home??" and he just laughed. They gave me 2 hydro codiene for the pain, even though it wasn't pain.. I can't tell you wat it was, it was weird .... like my nerves rubbing on each other. I slept really good last night. They are fixing to flush my line :( I'm nervous...  

~ Can't Sleep~

I can’t sleep … Imagine that .. It’s Thursday 10:57 PM Alex is laying here snoring awayJ I really need to sleep I have a long day ahead of me.

Yesterday the teachers at school gave me a celebration dayJ I work with the most AWESOME people. They had breakfast & lunch and baskets full of all kinds of things for the Hospital; they decorated the hall and made a big banner that they all signed. They really surprised me.. I am so blessed to work with each and every one of them. Mrs. Hughes took pictures and I will post them on facebook when I get them. My student’s brought me flowers and we just cried a lot. Jasmine painted my fingernails hahaha I was gonna take it off when I got home but I just haven’t gotten around to it yet. I had a wonderful day.

I can really tell I am off the Velcade/Chemo, It’s only been 3 weeks and I am getting so tired so fast. I am having problems breathing, and starting to retain fluid again. Its CRAZY how fast this disease works on my body. Hopefully the SCT will be my answerJ

This morning we got up and took Lucas to school, I went by my class and got some papers I needed and hugged a few of my friends and we were headed to Baylor. We were going through an transplant orientation class. They gave me a binder full of stuff last week and I read it front to back…. WELL.. that is what the class was about .. ugggg I could have taught it myself. Alex & I could barely stay awake. There were 3 other groups of people in the class, who are getting transplants. One was an older man, One was a lady who looked about 55 and one looked about my age, she already had a wig on. She is going through chemo right now, maybe she lost her hair during that. It made me kinda sad~~ I saw some other ladies, wearing caps and they were bald….they looked like they could care less. I hope that’s how I feel.. but I seriously doubt it… I will probably be trying to glue hair to my hat or something hahahah .. I know-I know it will grow back.. The Nurse said most people go ahead and cut their hair off real short before being admitted, because when it starts to fall out it goes everywhere……….. Well DARN its 11:15 PM and I forgot to get mine cut J I guess I will just have to wait till it falls out. They said its about 10 days after you get the Strong dose of chemo that it falls out… So I guess I will wake up with a fur ball one morning. I remember when I first got sick and started Chemo, my hair was really long and thick, and it came out  by the handfuls in the shower, but I was never totally bald, I just had REALLY thin hair. I just wish I wasn’t so worried about my hair. I think its because .. that’s when the truth will come out and I will no longer be able to hide how sick I am L Maybe I just need to quit worrying about anything. I know its all going to be fine, and that God is going to take care of everything J

So we got to come home, because they haven’t put my port in yet. So…….. I went and got a pedicure.. Alex had them watching NASCAR before we got out of there. When I got home I heard the BAD news that my Beautiful Aunt Bev passed away. My daddy’s big sister, who lives in California. She was 77 and not even sick.. She was upstairs getting ready to go bowling and she died. It breaks my heart to see my Daddy cry.. I’m glad my Aunt didn’t ever have to suffer, she lived a good life and we will miss her greatly… Later my whole Family met at Cotton Gin in Crandall to eat … it was great to visit with them. (Thanks for dinner Lisa) Chelle lent me her Kindle to use while I am in the hospital and gave me the cutest slippers with Bees on them and iphone holder.. I love it!!! I also got to see my old friend Sheri parker from High School, she was in there eating with her familyJ

Ok I’m getting tired now… plus I can’t eat anything after midnight so I better go to bed.

This is the email from my nurse about what will go one tomorrowJ

First, check in through AM admitting for the surgery to place the Neostar catheter.  (remember, nothing to eat or drink after midnight prior to surgery.)  From recovery you will go to your hospital room (telemetry floor for heart monitoring—not 6 Roberts).  The Neupogen injections will begin on Friday and continue until you have completed the stem cell collection.  The stem cell collection will begin on Tuesday, May 31 (since Monday is Memorial Day and apheresis and the processing lab are closed that day we cannot begin the collection until Tuesday).  Once we know that you have collected adequate numbers of stem cells, I’ll request the transplant/chemotherapy orders and we’ll proceed into transplant.







My Family @ Cotton Gin In Crandall

 

~ It's 5 O'clock Somewhere~

Went to Jimmy Buffert Parking Lot party Saturday.. With my sister Lisa and her Hubby Rod..My last party before the SCT.. I did pretty good, I got a little tired but we walked ALOT!! I have a pretty good tan going on right now:) maybe it will last a couple of weeks:) This was my 3rd Jimmy Buffett Party, it was Alex's 1st and he is already making plans for next year..

Sunday I spent the day helping Alex clean & mow some houses, I just enjoy spending time with him, doesn't really matter what we are doing. I have been feeling pretty good.

Monday "Today"our TAKS scores came in :) we made the % we needed to so I feel great!! My student's did really well and I am so proud of them. That STRESS is Gone :)  My own son Lucas got commened on his Math & Reading TAKS, he is such a smartie!!

 I sent off for some Amyloidosis wristbands and Pins from the Amyloidosis Awearness site and two of my students went around and collected donations for them and in about 30 minutes they ran out of stuff and had about $180 :) So I emailed the people and asked for more they said they would overnight me some more. I think that is great people want to donate money and support Amyloidosis Awearness. I will be the first to admit I had never even heard the word AMYLOIDOSIS before I was diagnosed with it.

 After school one of my students Grandparents~~ that I met at the beginning of the year~~~ came into my class and asked me if I was the substitute?? I said, "no?" she said, "well I need to talk to Mrs Reed"... I said, "I am Mrs Reed" she said, "No the other Mrs Reed, the sick one." I said, "Thats me:)" she said, " but you look so different, your hair.... you just look so much younger!" I said, "well Thank you .. I feel alot better, I have been through alot of chemo".. (I was thinking, you should see me in a couple of weeks, I might not look so great) She told me they pray every night and her Granddaughter always says, "please take care of Mrs Reed and bring her back to us." :) awwww I love my kiddo's

~~Not what I was Hoping for~`

Wow.. Not what I was planning on hearingL  I went to see Dr Agura today to find out my test results, ask questions and sign consent forms. Alex and I went to eat at Cheddar’s YUM!! I think I have gained about 20 lbs in the last month, that’s OK because I will lose it fast enough. We got to the hospital and went in to Ernie’s a wig & hat shop.. I got another wig, with longer bangs in the front and got a cute brown bandana scarf.. I almost got a brownish-red wig but they talked me out of it.. We got some tea and waited~~ Granny, Pappy, Aunt Di and Uncle Dave met us and we went up to the 3^rd floor.. Michelle my sis- in-law was there. First they called me back to do some blood work and vitals.. and then we all went in a room.. waited .. waited .. and waited some more. The Dr came in… First of all he said I had to be Hospitalized for the entire processL~~ oh well, he said because my heart is affected and they want to monitor me and keep close tabs on me, which is probably for the best. His Nurse Leigh will send me a calendar of when we start. I think we are looking at next week.. So that is about all for now. I have about 4 days to get myself together for my life to be put on hold for the next month or so.. I need to sign up for  sick bank at school I will have used all my tenure days, I need to file for disability, I need to go ahead and pay all my bills for June and make Lucas’s Ortho appointments. I am having issues as to weather or not I will let Lucas race his racecar on Saturday nights while I am in the hospital.. He is in 2^nd place for points right now, and he will be fine without me.. I should let him L ugggg I have to make lesson plans for my substitute for the next 2 weeks. Pack mine and Alex’s clothes. And think of what else I need to do. I know everything is gonna be OK.. God is in Control..

Thank Goodness for Insurance:)

I just got the call today that my insurance.. Blue Cross Blue Shield of Texas approved my Stem Cell Transplant for anytime in the next year :) I'm excited.. I have already met my deductible for the year.. which wasn't hard when I was getting Velcade once a week that was about $4,500.00 a week :( .......... I told Alex last night that I felt like running away to have my SCT all alone, I don't want to be a Burden on anyone, I don't want anyone to have to put their lives on hold for me.. I hate that .. I have always been so independent and have problems letting anyone help me :( Alex was pretty upset with me and said he wanted to be there every step of the way .. I hope he knows what he is in for :(

Here is the email my Drs. Nurse sent me ..

Hi Deanna,

Good job getting all those tests done on Tuesday.

We are getting everything submitted to insurance today for transplant approval.

Dr Agura will review everything next week and let us know if we can proceed with transplant –and if you can do the procedures as an outpatient.

I am having the cardiologist review the echocardiogram again today.  There was no mention of amyloidosis on the heart.  That’s good, but I need the report to specifically mention that amyloid is not there.

I was wondering how the abdominal symptoms are now. 

The ultrasound didn’t mention any ascites, but if you feel like you are still bloated I can ask them to specifically review the ultrasound and make mention of whether or not any ascites is present.

Thanks for the update—we’ll see you on Wednesday.  Have a good weekend.

~ Jesus Take the Wheel~

Well~~ Yesterday was the day of all my Tests
 Alex and I got to the hospital about 8 am tuned in my 24 urine and waited for my blood work. They took abut 15 tubes of blood, she said that was just a little compared to some people:) Next we went across the street to the Robert's building for my ultrasound, We met Granny & Pappy( my parent's) in the lobby. By this time I was starving:( We had to check in and the lady goes, your having a transplant right? and Alex goes No! and I said Yes! I looked at him and he goes, well I though she meant like a major transplant, like a heart or something :( I think that was the first time he realized how serious this was. They took my back to a room and did the ultrasound and UNOFFICIALLY she told me I had Amyloid on my heart, thats why it was so thick, but I would have to wait and see what the Doctor said. We grabbed a quick sandwich and headed upstairs to the Pulmonary Function Test. That was weird, I had to blow in a machine hooked to a computer, they had a nose clip on my nose. I did three of those, then they squirted some kind of mist stuff in my throat and I had to do it all over again.. She said it was only and 8% difference what ever that means?? Next stop the Hamilton Heart Hospital, for an echocardiogram I thought they were going to give me shots in my heart?? NO... they put these little stickers on my chest and hooked me up to some wires coming from a computer. Then, she had a deal she rubbed around my chest and it took pictures of my heart, it was no big deal at all.. Yay!! It's 1 pm and finally lunch time, they really have some good food in the Cafe. Alex ate there a lot back in July. We went and met with my  social worker ~Shannon~ Everyone got to come and ask questions. She gave me some advice, she said if people wanted to help me to let them, like fundraisers and stuff, that it makes them feel better:) I never thought about it like that. She said I should take any money and donations that people offer or that are out there to get, whether I need them or not, because that is what they are for. Last was the Bone marrow Biopsy :( It wasn't that bad, I had one back in July. They gave me the choice of having some relaxing "funny" medicine through and IV .. Alex said, "Yes, she wants that!!"they had to put in an IV the first nurse heated my veins with a heating pad, she had read that I was a "hard stick" Well she blew my vein:(   then the head nurse manager came in bragging how she never missed .. She had done this for 25 years.. She blew my vein :( she also didn't wear gloves?? I thought that was really strange and  Alex asked her. She said, "Oh~ I learned along time ago, you have to be able to feel the veins, you learn who to watch out for." HELLO??? I have a blood disease. ok anyway.. She got it on the 3rd try. They had me lay on a table/bed. My parents had went home, so Alex got to stay with me. They gave me some medicine, I didn't feel any different?? then they started giving me deadening shots in my back hip bone. It was that bad. then they popped out a piece of my bone and got the marrow, it had this very strange uncomfortable feeling, but it didn't really hurt. ( I need to remember this) Then I was Done!! Yay, now the waiting begins for all my test results. I met with Dr Agura May 18, 2011 to find out results and sign consent forms. I'm excited:)

~~~Deanna Reed's Amyloidosis Journey~~~

Christmas 2009 About the time I started to get sick:( Who Knew???

My First Hair Cut.. After 42 Velcade treatments, Ready for my SCT



I look Pregnant!!! I had a drain put in:(

 Wow! Where do I start? My life was literally turned upside down July 7, 2010 .. or actually months before then~~~ I was just diagnosed on that day with an incurable blood disease called Amyloidosis.. What?? That’s what I said.. Never heard of it and at first didn’t want to know anything about it.. my thoughts were treat me~~ so I could get out of this hospital and go on with my everyday normal life.. Well that’s where I was wrong! my life would NEVER be normal again as I know it .. I was in pretty bad shape, I had been misdiagnosed for about 7 months, I was having a lot of shortness of breath and thought I was having indigestion; I had never had it before.  We were in Red River New Mexico skiing for Christmas 2009, I thought maybe the altitude???,, I quit smoking in February, I had started back in May of 09’ they put me on cholesterol medicine because my cholesterol had jumped to 600 in a matter of months,, then they put me on thyroid meds, then there was all the heart test and the beta blockers, I was getting worse and worse, then my feet swelled up HUGE in April I went to Dr they did all kinds of tests they noticed a lot of protein in my urine but didn’t know what it was, then they decided I needed my Gall bladder out , after a few trips to the ER throwing up and low blood pressure.. After my gall bladder was removed my tummy swelled up like I was pregnant.. It would get so big I couldn’t breath, I couldn’t eat .. I was losing lots of weight, but my tummy was huge, they finally started to drain it so I could breathe, I was so week, I slept all the time, never enough sleep. In May I was driving to work and just about passed out, Alex had to come get me and they put me in the hospital.. More tests, cat scans, MRI, x-rays, blood work 24 hour urine.. still nothing .. doctors would come in a look and talk to me ~~ask me questions but no one knew.. They finally decided I needed to have a kidney Biopsy .. One day the end of may .. Mom & Daddy came to get me, and took me to a Dr in Mesquite who was going to do my kidney biopsy .. my blood pressure dropped to 79/53.. they decide to take me to a bigger hospital Baylor of Dallas, well I wanted to eat firstJ so they stopped…My stubborn self  at Jason’s Deli and I managed about 2 bites of food before I was sick again.. So Daddy is driving me to Baylor, I refused an ambulance… that’s just me, I want to take care of myself;?  I get there more test .. more x rays more everything .. my veins were blowing and my blood was clotting to fast, I just wanted to go homeL at one point they came in with HUGE needles and started poking them in my stomach trying to draw some of the fluid off after about 7 tries, one Dr said he was FONE!! he felt like he was torturing me L They admitted me in the hospital .. and scheduled a kidney Biopsy.. while I was in my room and intern came in and told me they could put me on a kidney transplant and liver transplant list ??? WHAT??? Whats wrong with mine?? Another doctor came in and asked me how long I have had Hepatitis?? I said I guess I just got it today??? Nobody still knew anything; one Dr would say one thing and one would say another … they kept me pretty doped up on sleeping pills and morphine. They finally figured out my kidneys were leaking and started me on bags of albumin.. then Dr Herbet came in and broke the news to me that I had AmyloidosisL he then ordered a bone marrow Biopsy to see what other organs were infected.. tests came back, my heart, kidneys and liver are infected.. they decided to start me on Velcade/dex 3 days later… My sister and Alex were there when I got my first dose.. the steroids wired me J I wanted to clean my hospital room all night long.. I watched SVU, bones and CSI and American pickers so many times………after about a week and 4 stomach drains.. I was going home.. I couldn’t walk, my muscles were gone, my digestive system was so messed up, I lived on popsicles, I stayed in bed or in the lazy boy all day I could only stay awake about 20 mins at a time. .. I couldn’t get myself off the toilet, I couldn’t take a shower alone, I couldn’t stand for more than a minute if that long .. I was on about 10 different meds,, mom & daddy were driving 4 days a week to get me in Royse City and take me to the hospital for my treatments.. I still DIDN”T CARE.. I knew I was going to die ,, I was just waiting for it to happenL Well when I got to my first out patient chemo and saw all the beautiful faces of other bald people I knew where fighting for there lives ,,, when I saw a little old lady and a girl about 20 .. My heart just came alive, I knew they didn’t have what I had…….. but I knew right then I was gonna fight and if I died at least I would die fighting.. when I got home I threw all my pain meds away .. and dealt with it!!1 I tried to make myself stay awake.. I got a walker and started to walk, I lifted weights I made myself take showers .. I was going to beat this I had a month till school started .. and by GOSH!! I was going to be there and I wasJI made it to some of Shawna’s softball games and Lucas’s races.. on July 30^th I was coming home from Chemo and got a call Lucas was in an accident.. I made it to Rockwall and they were loading him in the ambulance to take him to Presbyterian in Dallas,, they did a 6 hour surgery on his eye trying to save it, but no luck,, Alex had Burned his Arm really bad on the race care and then lost his Job.. this was just not our summer…… but I wasn’t worried, I kept saying everything would be ok, everything happens for a reason.. Aug 10, 2010  I had a drain put in my stomach to drain the fluid off.. it was like a two foot little hose about the size of a straw in my stomach and about a foot of the outside I would get tape and bandaged to my side.. no one knew it was there unless I told them…….. and of course I told everyone J that’s just me, at night I would hook this bulb and bag deal to the hose and drain off 1000ml ,, instant weight loss.. but it always came back .. I continued with the velcade/ chemo I decide to stop taking the steroids.. I figured I would rather feel crummy all the time then really good for 2 or 3 and then Crash .. Dr said it was fine.. my feet and hand swelling went away with the steroids and so did my appetite.. .. By now I had lost over half my hair, it didn’t come out in chunks.. it just thinned way out! and kept breaking off.. I was getting tingling feet and sores on my tongue, one of my fillings fell out and my tooth broke.. I was very Pale and had no muscles.. I was pretty bad looking J  Spur of the moment I decided I wanted to sale our house and move home with my parents, I think I was scared and just wanted to be closer to them, we lived about 2 hours away.. THEY Alex, Lucas and Pappy .. his parents and his good friend Andy and my in-laws, moved us in a weekend.. we were outta there .. we decided we would build a house on the back property later .. time for school was getting closer and closer, I couldn’t fit in any clothes so I bought maternity clothes.. I looked like an OLD pregnant lady .. I hadn’t driven in weeks and couldn’t get into my truck alone.. how was I going to make it to work and stay awake??  I did itJ with a lot of help from my daughter Shawna and the other teachers I DID IT!!, at first I would take off every Friday to have my Chemo .. Then I would take off half days.. Ok~~~ I will continue this Later, I am trying to catch my story all the way up till now which is May 2011.. I’m still back in Sept 2010 with my story, but I will come back and finishJ I am also going to start from Now and Write forward, so people will know what is going on.. My Journey With AMY~~~

My Stem Cell Transplant~~~~I'm ready to rock n' roll ~~~I will definitely go through with this.
I saw Dr. Agura's nurse, Leigh on Friday, and she said that my blood counts are finally good enough to go ahead with my stem cell transplant. No more Velcade/chemo Woot woo!!! 
So now the testing begins. May 9, 2011...Bone marrow biopsy, echocardiogram, complete skeletal survey, pulmonary function tests, many, many blood test, etc. Once that is behind me, and my insurance gives the green-light to go. I will meet with DR Agura and sign consent forms... Then.. I will begin the pre-transplant preparation of Neupogen shots to stimulate stem cell growth, (I will definately take my Claratin, Carl)  insertion of a central line catheter, and apheresis (harvest) of the stems cells, which are then frozen. When that phase is complete, I will then receive the high-dose melphalan chemotherapy that will essentially kill my bone marrow and all those plasma cells that are causing havoc in my body. Then I’ll get my stem cells back and I’ll begin the process of regrowing new stem cells, with the help of Neupogen shots. This whole process takes about a month~~~ if I don't have any complications. Fingers Crossed XX
So that is how it will happen. The time frame is still a bit up in the air, Alot depends on my test results. If I have any Amyloid in my heart I will have to do the Whole SCT, in the Hospital.. If not I will be able to do most of it out-patient, Which is what I am hoping for. But it's in God's hands ~~~he already knows what his plan is :) I just have to wait and see....  but I do hope it will all be done by July 10 2011, So I can go to Surfside, in Galveston with my family and my new clean cells! Esp since I already paid for my room:)
I thank God everyday for this strength. I would never be able to survive this ordeal without it. The FEAR of the UNKNOWN.. I have a greater appreciation for things that we often take for granted. "Within our wounds, we most often find our true strength"


ER with Lucas when he lost his eye, I just came from Chemo, what a bad day!



I love my Sis!

I will keep you posted:) Love ya'll "Don't Blink"