Going Back to work!

The time has finally come and Im going back to work tomorrow night (4/11/2011). 9 1/2 months after Stem Cell Transplant . Im not 100% yet but getting closer.

I know the first couple of days will be hard and tiring but Im ready to get my life back little by little. I still notice little improvements here and there. Things that I couldnt do before and now I can !. I feel so excited!, like a child learning and discovering new things every day.

I feel so blessed and thankful for the opportunity I had to have the SCT that saved my life and cured me from CIDP.

Life 8 months after SCT

It s been 8 months since the day of transplant and Im doing a lot better. Recuperation process has been slow, specially re-building my immune system.  Numbers are up and down,but I feel more energy (some days...)  Im not back to work yet, hopefully soon.

CIDP was on remission right after transplant. Got my strenght and balance back. Nerve pain went away and sensory came back.

Went back for my 6 months follow up last December and they were surprised of my progress (neurological) . For the first time the neurologist gave me a 5 on strenght and 3 on my ankles. they still need some time to get stronger.
EMG/ Nerve conduction test was torture! I could feel every shock and needle. After 5 minutes I got up ready to leave I didnt think I could go through with it. But I did!  Neurologist said that it was because the small fibers of the sensory part of the nerves were regenerating faster and that s why I could feel everything, which I couldnt before, just very little.

I ve been riding my bike almost every day for the last few weeks 4 to 6 miles (or more )to build endurance and exercising to get stronger ,since I didnt have PT available. Ive been doing it on my own...lol
I have days that are better than others.

Im so excited I can go up one of the small bridges and go all the way to the beach non-stop without my legs giving up or getting tired! And I can go up and down the stairs, which is a big accomplishment. Small things that sometimes we take for granted.
I havent been able to do that for years! My neurologist its so impressed. He thinks Dr. Burt is a genius and needs a medal for his work.

I know I will keep getting better and stronger with time.

Thank you all for your support!

Update

This update is long due. Since I had my last appt with Dr. Burt I havent posted anything. There s not much to say other than it s been a month since transplant and I'm having a little more energy . The first few weeks all I did was take naps all day long and rested a lot from doing nothing. lol, I had very little energy. The body and the immune system its like the one of a baby. Just like they said it would be.
Blood counts are going up little by little. I dont do much or go anywhere. I had an allergic reaction 2 weeks ago and Chicago took me off of 2 of the antibiotics , I had to be even more careful not to get sick.
They are introducing them back one at the time to make sure they were not the cause of the allergic reaction.

Several people have asked me if its working and the answer is....It s hard to tell yet. My neurologist said last week that I am getting stronger and walking better. Reflexes were strong , never seen a response like that before. We were both surprised. I dont feel pain all the time like I used to. Fatigue is bad like before or worse, but they said is normal for the first few months after transplant.

I cant wait until my numbers are up to be able to go out or see more people, and have more energy...lol it s been boring.
Im trying to follow the rules because I know at the end it will be worth the effort.

Appt with Dr. Burt

I had my last appt (for now) with Dr. Burt yesterday. Lab work was excellent so he said I can go home to Florida anytime !!! YAY... and he'll see me in 6 months.

We went over all the medicines I have and told me not to take any of them anymore, except the ones he prescribed which are 2 antibiotics and 1 antifungal that I have to take for up to a year. While the inmune system is building up. He also advised me that I may have some withdrawal symptoms from steroids, since I was on it for over 12 years and from the other medicines. That and the pain will go away.

Now Im getting ready to go home to Florida this coming monday. Im packing and cleaning very slowly. Im very tired. They said is normal to feel like that for a couple of weeks.

I'll keep you update but I wont be writing as much, since I dont think much is going to be happening....lol
If you have any questions , you can always email me.

Thank you all for reading the blog, for the prayers and good wishes.

SCT website

There s a new website about SCT, Dr. Burt, his work and his team. Very interesting.

http://www.stemcell-immunotherapy.com/

Update

I apologize to those that have been following the blog and havent seen anything for a while. On day 2+ fever got worse, I passed out when they came to take vitals and weight, all I remember is that I was on the scale.....I heard the nurses calling my name...not sure how long I was out, but they had to call the response team. I passed out a second time later that day, (the nurse was there) responded quicker so no need for the response team the second time. After that they put me on a "bed alarm" .Couldnt get out of bed without the nurse there and when I tried, the alarm sounded on  the whole 15th floor. (I did try....lol...that's how I know...)
Fever was going up every few hours, always at the same time every day and blood pressure went down too much at the same time. For 5 days Dr. Burt tested me for everything that he could think was causing the fever , switched medicines around and fever wouldnt go away or down. It lasted 8 days, where I didnt do much and dont remember much...lol ,since fever was so high I was kind of sleepy on and off half of the time and very tired. Then I got the "pain" that many people says they get during the inyections, which started on day 5+ to stimulate the cells, it was bad on my legs and head. He said it was great news, because it meant my bone marrow was going  on the right direction and started to engrave back to my bones. !! YAY
He stopped the inyections that day (day 8+) and next day my numbers started to go up on their own and fever started to go down until it was normal again. Pain got better,only had a headache for a few days.

Monday morning he said my lab work was excellent and I could go home (in Chicago...lol) that afternoon. After I got home I went to Walgreens to get the medicines he prescribed. It was nice to go for a walk and breath fresh air....lol

Today I feel good, just really tired. I will see him tomorrow and if everything is good with my lab work, they may let me go home to florida soon.

Transplant Day & Day +1

Was the theme of the day! At 1 pm as scheduled, my cells arrived and we started the process. Everything went fine. Didnt have any reactions, not even got sleepy with all the premeds...lol I wanted to see and be aware of everything that was happening. The nurses brought me a little bag with candies and other things to celebrate life and my re-birth. Pictures say more than words...so here are some...

Tank with my Stem Cells

  

Dr. Burt

Stem Cells entering my body...yay

It was a great and exciting day!!! Now I have a new Birthday....! which I will always remember....lol

Day +1

I did have a little bit of fever overnight, they called the doctor and tested me in case I got something during the time my cells were down. This morning he said everything was fine, it was just a late reaction to ATG treatement and it was not related to transplant, nothing to worry about.

My plateles were down, so he did order a unit of blood to be given, plus all the other meds that are needed to keep numbers in order. I had my last chemo this evening!

I asked him what's next? and he said...We are done!! lol now comes recuperation and you are doing great so far and then go back to normal life....lol 

I just had to laugh ...I dont think I remember what that its like...lol 

I feel great and Im happy that this part is over... I'll follow all the rules for as long as they want me too... they really know what they are doing!!

Wed 16, Day -1

Had a good day! Last day of ATG and started all other meds to get ready for transplant tomorrow, antibiotics, antivirals, and other things, that I dont remember the names of it...lol too many. All I know is that when they give them to me I get tired and sleepy for some time.

Numbers are down , just were they need to be  Stem Cell Transplant is schedule for 1pm tomorrow.
Im excited!!

Tuesday June 15, Day -2

Just a short update post today. I dont have much to say. So far I havent had many side effects other than getting tired and sleepy after the pre meds, but not much at night...lol
Started an early day as usual, same daily routine. Today was my last day of the chemo Cytoxan, tomorrow I only get ATG , Dr. Burt said.
I tried doing some exercise on the bike today, but got too tired after a few minutes, so Im not pushing it for now. Im getting the side effects from high doses of steroids though, like shaking on my hands when I tried to write or get on the computer, getting a little upset to quick (specially when I get hot flashes...LOL) and the air seems to not be working right, hard to concentrate, gain weight, etc .  But I know they ll go away ....someday...

Monday June 14, Day -3

Ok, I got confused when posting with the way they count days here. So I fixed it. From the first day of chemo until transplant is (- minus day) Transplant day is day "0" (zero) and then we start counting (+days) .

Today Monday 14 was my -3 day. Meaning 2 days till transplant. YAY...
We started an early day as usual. All the weight check, blood work, EKG,etc. which is part of the routine every morning. I've gained some lbs already and my prednisone belly and moon face are big, because of all the steroids they are given me as part of the pre meds and regimen of medicines. I had a little tightness of chest and nausea this morning , it wasnt too bad but they said that its better not to wait until it gets worse. When I told Dr. Burt this morning (7:30am) he ordered some meds. They gave me compazinew to get nauseas under control, but I got really tired and sleepy from it.
Then we started all the pre-meds and mesna , including benadryl and the other ones, I basically slept most of the time during my pre-meds and Cytoxan .

Finally around lunch time I got some energy and I think the steroids made the trick...!! LOL and got up ,shower and ate, but then  after they connected me to the ATG I went back to sleep for the rest of the afternoon. LOL. They said that the fact that my numbers are going down so much, which is the goal, it has a lot to do with it.
After dinner time I ve been more awake and alert, or trying too ,so I can get some sleep tonight.

Sunday June 13, Day -4

Another early day. Same as yesterday. Blood work, EKG, weight check, vitals, etc. Same medicines by 7:30am than the day before. Mesna and all the other first round of pre-meds.  Dr. Burt came around 10 am and said that I was responding pretty good to the treatment. I told him to make sure they are giving me the right chemo since I dont feel any sides effects other than the short hair I have it keeps falling....he laugh and said that he was glad I'm taking chemo like water but that he knew it was working because my numbers are going down and that s what we are looking for before transplant.

He left and made all the orders for the day. Pre meds came and by 10:30 am started chemo. Cytoxan and they had to give me sodium phosphate also (runs 6 hrs) because it was too low on my blood work. The other day it was pottasium. By 1 pm the ATG (56.6,250ml) which runs for 10 hrs. I've been 3 days on the same chemo regimen.
I just feel a little tired at times,so I dont do much. I did go for a walk around the floor and a short bike ride.

Of course I ve got to take the IV pump, mask and gloves along. Just a little exercise helps a lot. My mom brings me gatorade and bottle water everyday (Im kind of picky when it comes to water...lol)  and one of the nurses was telling me that it was a great idea since Gatorade helps to recuperate the electrolytes Im losing or they will have to give it to me in IV. And I dont need one more bag of IV medicine...LOL

I'm also drinking a lot of prune juice instead of having them to give me a medicine for that too.  If you know what I mean...lol  The more natural the way, the best...!

I like the way they have set the food times, they give you a menu and whenever you feel hungry you call them and they bring you the food fresh within an hour. If I dont call after a certain time, they call me to remind me. Sometimes I just dont feel like eating, I have that metal taste in my mouth and nothing tastes good anymore.

Plus the first day they give you a special mouthwash that you have to rinse with 5 times a day at least, made of salt and soda, so it has no taste either...lol

Saturday June 12, Day -5

Today was an early start with blood work and an EKG test and of course weigth check. By 7am they connected the first bag of the day. Mesna (28.3 mg,250ml) which is the medicine to protect the bladder from the chemo. It runs for 24 hrs. Then blood work returned that my potassium was low, it always happens in my case though. So they connected that med to my line. About an hour later they started the pre-med as usual. everyday is the same.

The regimen for chemo for today was first around 10:30pm Cytoxan (28.3mg,250ml) which takes about 2 hours to run. Then about 1:30pm we started ATG (56.6 mg,250ml) which runs for 10 hours.

I havent felt anything extrange yet. Dr.Burt and nurses are checking on you all the time, really good and nice team of people. I did go for a walk around the block...lol just the floor. I do have to wear a mask and gloves per Dr. Burt, if I leave my room. They have a nice family waiting room with a stationary bike looking out to the lake, so I exercised for about 15 min plus the walk. When I got to my room I was a little tired, laid down for a bit then I was back to normal and up on the computer checking a few things.

Thank you to all of you that have been sending me messages or texts and reading this blog, It keeps me going to hear from all of you. Im glad to know this is helping some people to know more about the treatment. I really appreciate that. Since some of my closest friends and family dont want to know what s going on anymore...LOL

Thank you.

Second part of the treatment ! Thrus 10,Day -7 / Fri 11,Day -6

I was admitted to the hospital yesterday afternoon after having a PICC line placed on my left arm in the morning for treatments. I was blessed again to have a good doctor doing it, who went the extra mile to check with the doctor that placed my vascath a couple of weeks ago, to whom I had showed my records from home to find out if I had any vein that could be use before putting me through the pain..LOL. Which was a good idea since I forgot my records in the morning and knowing my history with veins, it was the best thing she could ve done. I went home to get some rest and took some pain medicine, waiting for my room to be ready.
I got to watch the opening of the soccer world cup all the way to Alicia Keys, when they called me to let me know my room number and to go there right away because the Dr. would meet me there in a few minutes.

As any hospital, I guess communication between departments is not one of their strongest. When I got there I checked at the desk and she called someone and told me to have a seat and wait. We waited for about an hour when Ms Paula (Dr. Burt s assistant) called and asked if I could go to the hospital right away because the doctor was waiting for me in my room. I told her we were there since last time she called me, just sitting waiting for someone from admitions to come and get us, she talked to the lady at the desk and she kept saying I had to keep waiting. Ms Paula got on the phone with me again and she said, Rossana just walk to the elevators and go up to your room, Dr Burt is waiting for you there, and dont let anyone stop you....LOL so we did. The lady from the desk kept calling us to go back to stop us and we didnt. I was not listening to her or waiting anymore.

I apologized to Dr. Burt for having him waiting and I explained him what happenned, he just laugh. He is such a nice and busy person. He examined me and told me he was placing the orders and we were starting the chemo in a few hours. So I didnt have my last IVIG as it was scheduled for this morning. Last week June 1st was my last. He also took me off of all my medicines starting today. Just kept me on prednisone and zocor.

Thrusday June 10 , Day -7 (-minus...lol)

I got all set up and about 6:30 pm they started the pre-medications. Benadry (IV), tylenol (pills), Solu-Medrol (1gr) which is IV steroids too. And of course the regular Saline solution that they keep you on 24/7, for hydration. Around 7 pm they started my chemo. Rituxan (500 mg) running at 50 mg per hr. increasing at 50 mg every 30 min as tolerated up to 400mg per hr. It took about 3 hours to run since I didnt have any side effects. I felt tired and kind of sleepy at the beggining, but I think it was the benadryl more than the chemo. LOL

Friday June 11, Day -6

Dr. Burt came early this morning around 8 am with his assistant, Amy. Mrs. Paula is on vacation. Told me about my blood work and gave me a copy. My numbers didnt go down too much the first day. My glucose (190) which is high (steroids...lol) and rdw (16.8) . Down were albumin (3.3), red cell count (3.63), Hemoglobin (11.4) and hematocrit (33.2). Everything else was normal , about 10 pages of test.
I know this kind of information is more technical, I wont be posting it everyday...lol dont worry. I just want people that wants to go through this treatment and know more about it to have an idea of how it works and what to expect and because I know my nurse, doctor and pharmacist may be reading it and Im sure they want details...lol.
Around 12:30pm we started pre-med, same thing every day,same dosages. LOL
Chemo started around 1pm. Today it was ATG ( Anti-thymeglobulin) 250 mg, 28.3grms. running slowly for 10 hrs. Just got done with it a few minutes ago, the last hr of the infusion I got a little headache, called the nurse and in less than one minute he was here to check and see what was wrong. In less than 3 min. brought me a norco. Just like the hospital at home....LOL right !
Headache is gone! And I feel great so far. My body is taking it pretty good, just like water for now. I hope it keeps going this way!!

Well I'll try to keep posting as often as I can, since I dont have much to do anyway.
Any questions, just email me. Thank you.

Great news today!

I received a call this morning that my transplant had to be changed and moved up to the 17th instead of the 22nd. We went for the blood work needed and everything is ready.
Thrusday I'll go early in the morning to get my PICC line placed and then to be admit to prentice to start chemo. I'm excited !!

Today (yesterday) lol ,I just noticed its kind of late. As usual i cant sleep. Anyway, today was a better day health and weather wise. We decided to go out for a walk around 2 pm. Just a few blocks from home, the streets were blocked off and a lot of police cars and fire trucks everywhere. Everybody was looking up and making comments and praying that the guy on the 22 nd floor of a building wouldnt jump. We looked up too and saw him hunging from the balcony. Just wearing shorts. At times he was holding with one hand. I thought he was going to jump off,  so I told my mom I didnt want to see that. We kept walking and on the next block it was the same thing and actually we could see him better from there, now holding with 2 hands. Someone said they were trying to stop him from jumping. Thats when we saw a person reached out for his hand and pulled him back in. Everybody on the streets started applauding. And for the comments and what people were saying a lot of prayers were answered! . Then everybody went on their way.

I never thought I would see something like that. I guess anything can happen in big cities like this one.
And I also thought how desperate or how many problems can someone have to get to that extreme?
I hope that whatever his problems were he can find a solution and get help and Im glad he didnt jump off that building.

The last couple of days I havent been feeling too good. I ve been really tired. Plus the weather hasnt been the best. A lot of storms,so we stayed in the room most of the time.
My scalp it s been sore and tender ,it feels like a little headache but is not. Hard to explain. Very sensitive.
Last night I woke up in the middle of the night with a lot of pain in my arms and legs, it was sudden, sharp,stubbing, it was horrible. I didnt get any side effects from the chemo or the neupegen 2 weeks ago,but it seems like my body always has a late response to side effects from meds.
Then early morning got worse. Fever, nauseas, I felt like I was going to pass out every time I got up. I was hot and cold every 5 minutes and they were not hot flushes...lol . I can tell the difference!
I think it s been my worse since I ve started the treatment so far.
Im sure tomorrow will be a better day!

This morning I had my second to last IVIG treatment before transplant. It was a long and boring morning at the outpatient center. Little over 5 hrs. ,no internet or phone signal in that little corner of the hospital. lol .
I sure miss my treatments at home and Mary Ann my nurse. 
Now just feel a little tired as usual after IVIG. I'll get some rest and maybe go for a short walk , it s a nice day outside. Kind of warm.

Hair started falling in clumps today!

After my harvest day last monday I felt pretty good for a couple of days ,then towards the end of the week I started feeling tired and lack of energy . Weather was nice in Chicago for the first time since I ve been here.(warm) but I didnt feel like doing much, just short walks. A little depressed  and under the weather (lol) not as possitive and upbeat as usual. Probably a mix of the meds and personal problems.

The weather was really nasty today , memorial day, bad storm. I was being lazy half of the day and when I decided to get up I realized my little short hair was everywhere. Pillow, bed, clothing. I had mention to my mom earlier that my scalp was kind of itchy and sore. I touched my head and tons of little hair were on my hands. 17 days after my first chemo (just like the hairdresser said...) it starting falling in clumps. So I asked my mom to shave it off. I look like Mr. Clean now. LOL

Harvest day!

Monday 24 th was my harvest day!. They did have a little bit of problems getting my catheter in since I dont have many veins available for that purpose anymore. After the mess we had in January when they had to change my vascath 4 times in order for me to receive 7 cycles of plasmapheresis.

A procedure that took the doctor about 2 hours today (usually 30 min.) He did a good job. After examining each one of the veins he decided to try the same one where my infuse port is located. Back in January the doctor in Florida tried that and ended up blocking my port and the flowing of blood to the brain for a few seconds and he had to do an angioplastic  with no sedation, it was one of the most painful procedures I've ever had done, so when I was told he was going to try the same thing just a little higher on my neck, I was not happy !

I had no choice, harvest had to be done. He told me if he couldnt get the catheter in that vein he would have to look for another option but couldnt do it until the afternoon. He also mentioned that because of my recent history he could not give me any sedation other than local,which only numbs the skin I think.LOL

I could feel pretty much everything,stubbing, pressure,pushing. Very painful procedure when not sedated and all I could think during that time ,so I wouldnt move my head or scream, was that "this may be the last time I have to have a vascath placed, so hang in there!!!....LOL 
At the end they gave me 2 tylenols and told me to go to the blood center for harvest.

At the blood center we started the harvest about 1pm, after all the preparation. About 15 minutes into the harvest I started to feel sick, lightheaded and started to pass out, in a few seconds 4 nurses were there checking everything. My blood pressure had dropped to 80/53. They stopped the procedure and in a few minutes I was back to normal. They re-started it slower. 

I had the same reaction with IVIG and Plasmapheresis before, even lower so I was not surprised.

We finished harvest around 5pm. The procedure is pretty similar to plasma exchange. Didnt feel anything ,other than neck pain !

I'm very thankful and blessed that my body its been taking the treatment pretty much like water. I feel good and full of energy after all.
Now a few days off until we start the second part of chemo and then transplant!

Since I started treatment last friday I havent had a lot of side effects, my body is taking it pretty good. Just a little nauseas here and there, nothing major.

My mom got here on Monday to stay with me for a few weeks. I started neupogen injections plus cipro and diflucan on wednesday and so far no side effects.

Yesterday it was "my big hair day" it s falling more than normal and the scalp its starting to itch a lot so I decided to go and get it done, before it gets worse and in case my body is waiting to react to the medicines a few days later.

I went to see John Crager, he is the best hairdresser. Really nice. He works mostly with people going through chemo so he knows how scare people is when they go there and he really goes the extra mile to make you feel good about losing your hair. He took about 2 hrs to do my hair. He started cutting it little by little,explaining and giving me ideas of short hair cuts for later until he got to the part where he was going to shave it. It was nice and relaxing. Anyone going through chemo or any treatment like this should go to see him...lol .

I wasnt worry  much about my hair anyway , I know it will grow back and it s for a good cause!

It was a really good day and it was nice to have someone like him do it.

I'm happy that everything is going so smooth so far. Minimum side effects.

I hope it continues that way to the end of treatment !!

Started treatment Yesterday!

I started my first chemo yesterday! Went for lab work first and then to be admitted in the Feinberg building. Was assigned  room #1002 from where I could see my building!
By 10:30 am Dr. Burt and his team came to see me, explained me the procedure again and told me how it was going to be done and that it was going to run for 24 hrs. after that I could go home. So we started the process, got 3 bags of medicines running on my port, which they had a hard time accessing. I sure miss my nurse in Florida! Lol . Then labs came back and my potassium was too low. They gave me the huge potassium pills and then needed me to get it on IV also to get it back to normal level before the chemo, but couldnt mix it with the other medicines running on my port,so they had to put an access on my left hand. Had 2 machines and 6 bags of medicine running for a couple of hours.

A special nurse was scheduled to come at 4:30pm and start my chemo from the Prentice building, when she arrived she put on a special outfit and with a lot of precaution connected the medicine to my line. It only run for 2 hrs. I didnt feel anything, no side effects until about 2am. Nothing severe just a little headache and nauseas.
As soon as I called the nurse ,she came with a series of seringes with medicines and put them in my line. Draw some blood and I felt sleep, until the first Dr. (Internist) came to check on me in the morning.

By 9 am Dr. Burt came to my room and told me that my numbers were good and I could go home after the 24 hrs of the other medicine was up, by 1:30 pm.

I feel a little tired, but nothing major so far. My friend is coming from Indianapolis to stay with me in case I get sick ,until my mom gets here on Monday.

Update

My plan was to post here often about what is going on in Chicago and I'll try to do it from now on.
Everything happened so fast that i havent had much time to do it.

I was approved by the insurance on march 25th and on april 15th I was told to be in Chicago within 48 hrs to start the tests.  It 's been 2 1/2 weeks full of appts. Lab Work, in which they took 18 tubes of blood...my record in 14 years I think. I had an EKG, CT scan of sinuses, chest x-ray, vein check, dental appt, pulmonary function test, echocardiography, EMG/NVC (the more painful tests of all...lol)
They make sure everything is order before they start treatment for transplant.

The only thing I had to get done was dental. Even though I go to the dentist every 6 months, they did find a little shadow that they thought I could need a root canal maybe in 6 to 12 months. It didnt bother me at all. But they said they wouldnt let me go ahead with transplant unless I had a root canal done or an extraction. The reason for this is that any little thing like that can become a huge infection during chemo and transplant ,since the inmune system will be too low (pretty much gone...lol) and I wont be able to fight infections. They called my dentist and explained the problem and what it needed to be done.
Since root canals take over a couple of weeks and I dont have the time (or money..lol) for that ,
I opted for the extraction.

Today I had an appt with Dr. Suffit who will be my neurologist while Im here and then with Dr. Burt,who is the one inmunologist in charge of the transplant , all is set and ready to go next friday to start treatment. I have a week off !!! I'm really excited about this treatment and the changes it will bring to my life.
I ve been walking by the lake and the city. Last weekend my friend Ivette came from Indianapolis and we walked to the Navy Pier and to the Lincoln Zoo. We had a great time! and the weather was nice.
I miss my family and friends in Florida.

Happiest day!!

Yesterday, March 25th 2010 , I got the best news of my life since i got sick with CIDP. after months talking to the insurance company and going through different tests and a relapse , I was "granted an exception to go to NWH and have the Stem Cell Transplant i need".
Those were the best news in a long time. I've been waiting for this day for a while.
Now we just need to set everything up in Chicago and Im on my way to be cure after 14 years.

Im very happy and excited about this new experience.