February 11, 2009: Jill received a call about her blood tests from Dr Stivala. He said that her platelets were elevated to 665. Normal values are 140-390. I contacted Kate, Dr Burt's nurse practitioner and she said that all her levels were good and that her platelet count would go down in time.
She is definitely feeling better because she wants to go places again and she hasn't had the strength to do that for a long time.
Dr Burt's office is receiving hundreds of calls inquiring about Stem Cell Transplants for MS. The broadcast on CBS News is bringing hope to others suffering from this devastating disease.
Love and Hope to All,
Doreen
Thursday, February 12, 2009
Wednesday, February 11, 2009
DAY 20 - WEDNESDAY
February 11, 2009: Hi Everyone: This is just to let you know that everything is progressing better than as expected. First, our flight back home on Monday, 2/9 was great. We landed one half hour earlier and Ernie (Jill's father) and Aunt Doris were waiting for us by the carousel. We had the first row in the plane and were assisted from boarding to departing, and the attendant stayed with Jill in the wheelchair until she got into the car at the curb. This was a first. Usually, they wheel you to get your luggage and then take the wheel chair and leave you there. We flew home Jet Blue because it was a lot less for a one way ticket and we couldn't book round trip when we left because of the uncertainty of the departure date.
We had to get up early to leave and although Jill was a little tired from the flight, she was better than I had expected. She watched the TV on the plane and actually stayed up during the flight. On the way down Jill slept for almost an hour and was cold. She was a little steadier than before the SCT (stem cell transplant).
Don't forget, Jill has the RSV virus and it knocks you out. Her stomach was hurting her because of the constant coughing caused by this virus. You feel as though someone has punched you in the stomach. Her coughing has lessened almost entirely, and her feeling of exhaustion is much less. She is on no meds for the MS except the anxiety medicine and the Provigil, which she hasn't taken since the transplant. This is wonderful. Jill always hated taking medications and would have preferred to treat the disease holistically, which she did for the first 3 1/2 years. Unfortunately the turn the MS took didn't allow this treatment to exist anymore.
Jill had an appointment to see her PCP (Dr G Stivala), yesterday (2/10) at 12 pm. She was the last appointment so that she would not be in contact with other sick patients. Her mask and gloves were on and Dr Stivala was so happy to see her. He has been a constant support for Jill during this time. He was instrumental in getting her to see Dr Richard Burt. Sue, his office manager and Dr Burt's office manager, Kim, did all the paper work necessary for the first evaluation. It took over three months for this to happen.
He made all the arrangements for the weekly blood draws she will have to have during this critical time home. Dr. Stivala spoke to a supervisor so everything would go smoothly and the results will be sent to him and Dr Burt as soon as they are in. Jill will also be faxed the results. I will keep everyone informed as the results are gathered so you can follow along.
Our Journey Begins back home on the Road To Health!
Love to All,
Doreen
PS: Yesterday morning my son Frank called and told us to watch channel 2 News because a story about MS and Stem Cells was going to air. We waited for it to come on and this 22 year old explained how he was helped by a Stem Cell Transplant at Northwestern Medical Hospital in Chicago by Dr Richard Burt in 2006. He is symptom-free and feels as though he doesn't have the MS anymore. Technically, he still does, but his body doesn't know it. He was lifting weights in a gym and is not facing being in a wheel chair anymore. God Bless Him and everyone else. The study has opened up to many more MS patients. Now we have to spread the good news! Here is the link to this story (copy & paste in your browser): http://www.cbsnews.com/stories/2009/02/10/earlyshow/health/main4789551.shtml
We had to get up early to leave and although Jill was a little tired from the flight, she was better than I had expected. She watched the TV on the plane and actually stayed up during the flight. On the way down Jill slept for almost an hour and was cold. She was a little steadier than before the SCT (stem cell transplant).
Don't forget, Jill has the RSV virus and it knocks you out. Her stomach was hurting her because of the constant coughing caused by this virus. You feel as though someone has punched you in the stomach. Her coughing has lessened almost entirely, and her feeling of exhaustion is much less. She is on no meds for the MS except the anxiety medicine and the Provigil, which she hasn't taken since the transplant. This is wonderful. Jill always hated taking medications and would have preferred to treat the disease holistically, which she did for the first 3 1/2 years. Unfortunately the turn the MS took didn't allow this treatment to exist anymore.
Jill had an appointment to see her PCP (Dr G Stivala), yesterday (2/10) at 12 pm. She was the last appointment so that she would not be in contact with other sick patients. Her mask and gloves were on and Dr Stivala was so happy to see her. He has been a constant support for Jill during this time. He was instrumental in getting her to see Dr Richard Burt. Sue, his office manager and Dr Burt's office manager, Kim, did all the paper work necessary for the first evaluation. It took over three months for this to happen.
He made all the arrangements for the weekly blood draws she will have to have during this critical time home. Dr. Stivala spoke to a supervisor so everything would go smoothly and the results will be sent to him and Dr Burt as soon as they are in. Jill will also be faxed the results. I will keep everyone informed as the results are gathered so you can follow along.
Our Journey Begins back home on the Road To Health!
Love to All,
Doreen
PS: Yesterday morning my son Frank called and told us to watch channel 2 News because a story about MS and Stem Cells was going to air. We waited for it to come on and this 22 year old explained how he was helped by a Stem Cell Transplant at Northwestern Medical Hospital in Chicago by Dr Richard Burt in 2006. He is symptom-free and feels as though he doesn't have the MS anymore. Technically, he still does, but his body doesn't know it. He was lifting weights in a gym and is not facing being in a wheel chair anymore. God Bless Him and everyone else. The study has opened up to many more MS patients. Now we have to spread the good news! Here is the link to this story (copy & paste in your browser): http://www.cbsnews.com/stories/2009/02/10/earlyshow/health/main4789551.shtml
Thursday, February 5, 2009
DAY 14 - THURSDAY
February 5, 2009: Today Jill received a phone call requesting her to go for a final Chest X-Ray. She is officially cleared to go home.
There are a lot of restrictions she will have to follow for at least one year. The first three months are the most dangerous as far as catching any viruses or infections. She will be tired and will have to recognize her limits. She has to avoid large crowds for at least 3 months She cannot go to restaurants, or malls, movie theaters or anywhere that has heavy traffic. Mask and gloves are to be worn when going to a clinic for blood draws or hospitals.
There will not be daily blogs from here on in, but there will be updates about what she is experiencing and what new developments occur. She will keep everyone informed about any changes she has for the good and any setbacks that might occur. Any new tests that are ordered will be posted with results.
Remember she is not on any medication for her MS. She is only on medications for the stem cell transplant.
I am sure she will have physical therapy to help rebuild muscles and improve balance.
Thanks for your love and support.
Love,
Doreen
There are a lot of restrictions she will have to follow for at least one year. The first three months are the most dangerous as far as catching any viruses or infections. She will be tired and will have to recognize her limits. She has to avoid large crowds for at least 3 months She cannot go to restaurants, or malls, movie theaters or anywhere that has heavy traffic. Mask and gloves are to be worn when going to a clinic for blood draws or hospitals.
There will not be daily blogs from here on in, but there will be updates about what she is experiencing and what new developments occur. She will keep everyone informed about any changes she has for the good and any setbacks that might occur. Any new tests that are ordered will be posted with results.
Remember she is not on any medication for her MS. She is only on medications for the stem cell transplant.
I am sure she will have physical therapy to help rebuild muscles and improve balance.
Thanks for your love and support.
Love,
Doreen
DAY 13 - WEDNESDAY
February 4, 2009: Jill is still coughing but it has changed to a looser cough instead of dry one. Her breathing is much better though. She saw Dr Burt at 4:30 p m after having her blood drawn in the lab. He seemed very pleased with her in spite of the RSV. He asked her if she noticed any difference from before the transplant and now and she did say that she feels stronger and isn't as tired, which is amazing for a person with MS. Most of the time being exhausted is part of their every day routine.
I don't know if I am imagining it or not , but I think that she is speaking better. Her speech is not as delayed and she is thinking clearer. I know it is much too early to tell.
Love
Doreen
I don't know if I am imagining it or not , but I think that she is speaking better. Her speech is not as delayed and she is thinking clearer. I know it is much too early to tell.
Love
Doreen
Tuesday, February 3, 2009
DAY 12 - TUESDAY
February 3, 2009: Today, Jill rested and caught up on her e-mail messages.
She is still coughing and will see the doctor tomorrow.
Finally a day with no interruptions!
Jill had a good nights sleep last night and started reading a book today.
Love to ALL
Doreen
She is still coughing and will see the doctor tomorrow.
Finally a day with no interruptions!
Jill had a good nights sleep last night and started reading a book today.
Love to ALL
Doreen
DAY 11 - MONDAY
February 2, 2009: Today was wonderful. I (Jill) am finally up to writing the blog myself. I intended to yesterday, but by the end of the day I was too tired. This morning I got the wonderful news that I would be discharged from the hospital today. Dr. Burt delivered the news and Dr. Testori followed with guidelines for me to follow and wrote 5 prescriptions for me fill. Some I will be taking for up to one year. I also received the wonderful news that I wouldn't have to leave the hospital with the PICC line still in. I was afraid when they started disinfecting the area and shut my eyes. They told me to take a deep breath and started pulling an 18 inch long spaghetti looking like tube out of my arm. Surprisingly I didn't feel a thing. What a wonderful feeling it was taking a shower without a line hanging out of my arm. I had my final breathing treatment and by the time my Mother got back from the pharmacy I was all packed and ready to leave.
On Wednesday I will have my blood counts checked and am scheduled to see Dr. Burt at 4:30 p.m. I am scheduled for the last appointment of the day so I will not expose any other patients to the RSV. I have to report any changes in my cough and asthma immediately.
Love,
Jill
On Wednesday I will have my blood counts checked and am scheduled to see Dr. Burt at 4:30 p.m. I am scheduled for the last appointment of the day so I will not expose any other patients to the RSV. I have to report any changes in my cough and asthma immediately.
Love,
Jill
Sunday, February 1, 2009
DAY 10 - SUNDAY
February 1, 2009: Today was very promising. Jill's blood counts are climbing. Her WBC (which Dr Burt calls the police force) are up to 5.8 from 2.7. The platelet count is up from 117 to 212. This is amazing and it all happened within one day. She has antibiotics only by pills now and is disconnected from the IV's. The line is to stay in place for now in case she needs any transfusions. She might be released to the Chicago area as early as Tuesday. If her counts continue to climb there is no reason to keep her even though she has RSV. Her new immune system will fight the virus on it's own. There were three patients on this floor that had RSV.
All hospitals carry germs, so I feel it might be better for her to stay at the apartment where she is not exposed to anyone.
Her cough was a lot better today, but is still there. She continues to have the breathing treatments 3 times a day. I keep asking her if she is thinking clearer yet because it is one of the first signs that most MS patients report. They feel like a cloud has been lifted and they are no longer in a fog. I also see her walking a bit better although Dr Testori said it takes six months to see improvements.
I know that there are a lot of friends out there reading this blog that have Multiple Sclerosis. I hope Joyce is keeping up to date with Jill's Blog. I can't wait to report all the improvements as they happen. It has taken a lot out of her, but watching the disease take over her life was much harder. I have a lot of confidence in this transplant and don't forget she may not have to ever take shots again. She has been off the Copaxone (daily injections) since September. The Interferon shot Rebif was three times a week.
Imagine having to sit on each step so you can get down the stairs.
Imagine not being able to hold something with one hand because you need two hands to help with your balance.
Imagine the fear of a new day because you don't know what to expect when you wake up every day.
Imagine not knowing what day or year it is and you ask several times a day.
Imagine being afraid to fall every time you shower.
Imagine not wondering if where you are going has a lot of steps that you can't climb.
Imagine the fear of someone bumping into you causing you to fall.
Imagine the whole world looking at you and wondering if you were drunk.
Imagine that your hands, legs, head, or hands shake and you have no control.
Imagine exhaustion that is beyond description which you struggle with every day
NOW IMAGINE THAT ALL THESE THINGS GO AWAY AND YOU ARE LIKE A NORMAL PERSON, THAT IS A DREAM COME TRUE!
Love
Doreen
All hospitals carry germs, so I feel it might be better for her to stay at the apartment where she is not exposed to anyone.
Her cough was a lot better today, but is still there. She continues to have the breathing treatments 3 times a day. I keep asking her if she is thinking clearer yet because it is one of the first signs that most MS patients report. They feel like a cloud has been lifted and they are no longer in a fog. I also see her walking a bit better although Dr Testori said it takes six months to see improvements.
I know that there are a lot of friends out there reading this blog that have Multiple Sclerosis. I hope Joyce is keeping up to date with Jill's Blog. I can't wait to report all the improvements as they happen. It has taken a lot out of her, but watching the disease take over her life was much harder. I have a lot of confidence in this transplant and don't forget she may not have to ever take shots again. She has been off the Copaxone (daily injections) since September. The Interferon shot Rebif was three times a week.
Imagine having to sit on each step so you can get down the stairs.
Imagine not being able to hold something with one hand because you need two hands to help with your balance.
Imagine the fear of a new day because you don't know what to expect when you wake up every day.
Imagine not knowing what day or year it is and you ask several times a day.
Imagine being afraid to fall every time you shower.
Imagine not wondering if where you are going has a lot of steps that you can't climb.
Imagine the fear of someone bumping into you causing you to fall.
Imagine the whole world looking at you and wondering if you were drunk.
Imagine that your hands, legs, head, or hands shake and you have no control.
Imagine exhaustion that is beyond description which you struggle with every day
NOW IMAGINE THAT ALL THESE THINGS GO AWAY AND YOU ARE LIKE A NORMAL PERSON, THAT IS A DREAM COME TRUE!
Love
Doreen
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