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
Thursday, February 5, 2009
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
Saturday, January 31, 2009
DAY 9 - SATURDAY
January 31, 2009: The results of the CT showed upper respiratory inflammation which is common for RSV. The doctor was checking for pneumonia but thankfully the bottom portion of her lungs are clear. They did however find calcium between the vertebrae It seems that every time one test rules out one thing they discover another. I am sure that all of us would discover many things wrong with us if we had all the tests that Jill had.
Her white count went up and she is coughing a little less. The doctor said she will be contagious for one month after the coughing stops. He stresses that this disease is common and most of us have it and don't know it. It is diagnosed as a really bad cold. Since it affects the upper respiratory bronchi, it also magnifies asthma. Jill's asthma has been horrible and was not helped by the inhaler she takes daily. She had been using it every couple of hours, when it is supposed to be used only four times a day. That is why they put her on breathing treatments.
I know this scared Jill especially when her blood pressure dropped. She kept asking "WHAT DOES THAT MEAN"? The outcome could have been worse so I guess we have to consider that a blessing
This is one more hurdle that Jill has to get through. We will have to stay in the Chicago area 8 days after she is released.
I have to admire the strength that she has. Staying in the hospital for over three weeks takes a lot out of a person. It is something a lot of us will never have to go through. The Chemo is so hard and to top it off she had to get this. Her spirits are still high even though I can see this virus has worn her out.
It is so funny, the doctors come in covered from head to toe. Ernie and I have to keep masks on in and outside of the room. We wash our hands constantly and have to wear gowns to cover our clothes so no droplets get on them.
I couldn't sleep with the stupid mask on. I had to keep using my inhaler too. I took it off when I was sleeping. Tonight I am going to wait until Jill gets her sleeping pill and then I am going to the apartment to sleep. It's just too hard to keep that thing on when you sleep, besides she said all I do is talk in my sleep.
I keep waking up in a cold sweat too. I think Ernie wants to have the test for RSV when he gets home. He is the one that was sick before we left. He was coughing like a beast.
How is BELLA, we miss her
Love,
Doreen
Her white count went up and she is coughing a little less. The doctor said she will be contagious for one month after the coughing stops. He stresses that this disease is common and most of us have it and don't know it. It is diagnosed as a really bad cold. Since it affects the upper respiratory bronchi, it also magnifies asthma. Jill's asthma has been horrible and was not helped by the inhaler she takes daily. She had been using it every couple of hours, when it is supposed to be used only four times a day. That is why they put her on breathing treatments.
I know this scared Jill especially when her blood pressure dropped. She kept asking "WHAT DOES THAT MEAN"? The outcome could have been worse so I guess we have to consider that a blessing
This is one more hurdle that Jill has to get through. We will have to stay in the Chicago area 8 days after she is released.
I have to admire the strength that she has. Staying in the hospital for over three weeks takes a lot out of a person. It is something a lot of us will never have to go through. The Chemo is so hard and to top it off she had to get this. Her spirits are still high even though I can see this virus has worn her out.
It is so funny, the doctors come in covered from head to toe. Ernie and I have to keep masks on in and outside of the room. We wash our hands constantly and have to wear gowns to cover our clothes so no droplets get on them.
I couldn't sleep with the stupid mask on. I had to keep using my inhaler too. I took it off when I was sleeping. Tonight I am going to wait until Jill gets her sleeping pill and then I am going to the apartment to sleep. It's just too hard to keep that thing on when you sleep, besides she said all I do is talk in my sleep.
I keep waking up in a cold sweat too. I think Ernie wants to have the test for RSV when he gets home. He is the one that was sick before we left. He was coughing like a beast.
How is BELLA, we miss her
Love,
Doreen
Friday, January 30, 2009
DAY 8 - FRIDAY
January 30, 2009: After a sleepless night again and endless coughing, another test was taken to identify a suspected viral infection. At about 2 this afternoon the two infectious disease doctors came in the room with gowns, masks, and gloves on. This time the masks were different than the ones they usually wear.
It was not a good sign. The virus was identified as RSV, it is an upper respiratory virus that can develop into pneumonia. It is dangerous for small children, the elderly, and immune suppressed adults. In some cases it can cause death in these groups. There is no treatment for this virus. It just has to run it's course which takes up to three weeks. Jill is scheduled for a cat scan to see if there is any sign of pneumonia. Jill's white count is up to 0.4 today which means that the stem cells are definitely growing.
Ernie and I have to wear the gown, mask, and gloves too. The virus can be spread by droplets from the cough that gets on your clothes. RSV can live for a couple of days on contact surfaces and clothing. They do not want this to spread to anyone on this floor. Extreme caution is taken at this time.
The outlook for Jill is that she will recover as her immune system rebuilds itself. It will probably delay coming home as scheduled. I don't think she can go back to the apartment with this cough even if her counts go up. The breathing treatments are helping. All of us (Ernie, Jill, and myself ) cannot come into contact with our little grandchildren for three weeks. (We can't wait to see them) I guess Mark will just have to let us see them on the Web Cam. We saw Isabelle last night. It felt so good to see her. We were all smiling
I will keep you informed about the results from the cat scan as soon we find out
Love
Doreen
It was not a good sign. The virus was identified as RSV, it is an upper respiratory virus that can develop into pneumonia. It is dangerous for small children, the elderly, and immune suppressed adults. In some cases it can cause death in these groups. There is no treatment for this virus. It just has to run it's course which takes up to three weeks. Jill is scheduled for a cat scan to see if there is any sign of pneumonia. Jill's white count is up to 0.4 today which means that the stem cells are definitely growing.
Ernie and I have to wear the gown, mask, and gloves too. The virus can be spread by droplets from the cough that gets on your clothes. RSV can live for a couple of days on contact surfaces and clothing. They do not want this to spread to anyone on this floor. Extreme caution is taken at this time.
The outlook for Jill is that she will recover as her immune system rebuilds itself. It will probably delay coming home as scheduled. I don't think she can go back to the apartment with this cough even if her counts go up. The breathing treatments are helping. All of us (Ernie, Jill, and myself ) cannot come into contact with our little grandchildren for three weeks. (We can't wait to see them) I guess Mark will just have to let us see them on the Web Cam. We saw Isabelle last night. It felt so good to see her. We were all smiling
I will keep you informed about the results from the cat scan as soon we find out
Love
Doreen
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