I've been home 10 days and still loving it. The days go by fast and it's a good week when I can be independent in taking care of myself and doing a couple of things around the house. My life centers around meds, infusions and resting.(Sleep is still not great at night, but much better than a week ago.) But that is ok. I'm grateful that I am being carefully watched over by a very capable medical team. I go in twice a week to the clinic where adjustments always seem to be made and I am questioned carefully on everything pertaining to my diet to sleep to activity and strength and everything in between.
I'm being very careful as all my defenses are down. We are now being told that any visitors that I have should have had their flu shots, and if it is a nasal one, to wait two weeks before seeing me. My sisters and katie are mostly my visitors. It is ok as I really don't have a lot of energy to talk and converse, although in time, I hope that will change. Doug is a great comfort and company for me.
I'm lucky that my eyes have not been too affected by all the meds and I can read which I am enjoying. I have a huge stack of books and it has been so fun finishing one and picking up another which is just as good and engaging as the one before.
My head now has some white fuzz on top. I may leave it white this time instead of reverting back to a blonde. I have not minded being bald as it has been the least of my worries. I have been surprised by the lack of wigs I saw up on the 8th floor. Being bald is like a badge of honor up there.
We are still so overwhelmed my the caring thoughts, prayers, coming our way. They mean so much to me as it is a while before I'm 'out of the woods'. I have to make it through the first 100 days (which will be Thanksgiving) and then the second 100 days which is February to see how I really am doing. And then a couple of years to know if the donor cells really worked. So, staying healthy is key. And we find that the caring thoughts and prayers comfort us giving us great hope.
Thank-you for being interested and for caring so much!
Love
Kathy
Wednesday, September 25, 2013
Monday, September 16, 2013
I am home
I was able to be discharged on friday afternoon. It was wonderful once again to walk into my home without being attached to anything. I had a pretty remarkable week last week. Every day, I made some progress and by Friday, most things were under control and I had been weaned off the nutrition and most IV's. I am eating but it it restricted, but I'm just happy to be able to eat and drink.
I have learned to hang IV's as I have about 4 hours of IV's every day. Home health care has been great. I also take about 12 different types of pills twice a day. There is a lot to keep track of. I'm still weak, but as I am home and walking around more, I can tell that I'm getting stronger. I'm pretty slow, but at least I can do personal things by myself. Last week, I was pretty dependent on a lot of help for everything.
It will be a long and slow recovery. We will not know for a long time if it worked the way we wanted to, but we are hopeful and feel at peace. The first 40 days and then 100 days and then 200 days will give us a better picture. And then it will be another 2-3 years before we know what the outcome is I am on heavy steriods and immunosuppressive drugs so I am vulnerable. My blood counts are at a yo -yo right now, but going in the right direction. (All the meds have an affect on this.)
Andrew seems to be my lucky charm. He planned on coming out last weekend which he did and I went home-just like what happened in July. It was great to have him here for 48 hours. Anthony was with us at the beginning of this 3 1/2 week stay, so I had two great bookends, and Katie and Doug to fill in and comfort the rest of the time. (And a shout out to sisters who continually encouraged me and helped where they were able to. )
Once again, I am so grateful for love, concern, good doctors and nurses, and science that has made this possible. I also believe in prayer and know that prayers of family and friends were heard in my behalf and answered in small and miraculous ways.
Thank-you for your interest and attention. It means so much to me and keeps me buoyed up. Let's hope for no complications and that I can continue to stay home. I do have clinic visits twice a week. Amazing how fast the time has gone here at home as there is so much to keep track of.
Thanks for your love. So upward and onward to a healthy fall and winter.
Love you all,
Kathy
I have learned to hang IV's as I have about 4 hours of IV's every day. Home health care has been great. I also take about 12 different types of pills twice a day. There is a lot to keep track of. I'm still weak, but as I am home and walking around more, I can tell that I'm getting stronger. I'm pretty slow, but at least I can do personal things by myself. Last week, I was pretty dependent on a lot of help for everything.
It will be a long and slow recovery. We will not know for a long time if it worked the way we wanted to, but we are hopeful and feel at peace. The first 40 days and then 100 days and then 200 days will give us a better picture. And then it will be another 2-3 years before we know what the outcome is I am on heavy steriods and immunosuppressive drugs so I am vulnerable. My blood counts are at a yo -yo right now, but going in the right direction. (All the meds have an affect on this.)
Andrew seems to be my lucky charm. He planned on coming out last weekend which he did and I went home-just like what happened in July. It was great to have him here for 48 hours. Anthony was with us at the beginning of this 3 1/2 week stay, so I had two great bookends, and Katie and Doug to fill in and comfort the rest of the time. (And a shout out to sisters who continually encouraged me and helped where they were able to. )
Once again, I am so grateful for love, concern, good doctors and nurses, and science that has made this possible. I also believe in prayer and know that prayers of family and friends were heard in my behalf and answered in small and miraculous ways.
Thank-you for your interest and attention. It means so much to me and keeps me buoyed up. Let's hope for no complications and that I can continue to stay home. I do have clinic visits twice a week. Amazing how fast the time has gone here at home as there is so much to keep track of.
Thanks for your love. So upward and onward to a healthy fall and winter.
Love you all,
Kathy
Monday, September 9, 2013
Feeling better
Hi Everyone,
Kathy here. It has now been 3 weeks since I had the donor cells infused in my body. It has been quite a rollar coaster only to be reminded that i am in a marathon for another six months to few years. I have been in the hospital for the most of the past three weeks. Doug and I thought it was optimistic to think that this could be done outpatient. I'm glad that I have been in the hosptital these last few weeks. Most of it has been a blur. I have been very sick and finally feel that I turned a small cornor last Friday. The fact that I am on my computer is huge. There is a a lot of suffering here, but to put it all in perspective, I have had the best care and grateful to all the personel here. It breaks my heart to think of suffering around the world. There are also the kindest patients here and we all have an infnity for each other, even though we are too sick to talk to each other.
I was finally able to drink some diluted apple juice on Saturday. I still have not eaten for over 10 days, but I can start to drink. There is nothing better than diluted apple juice with ice chips!!!!!
I still love hearing about people. Doug is so caring and loving and keeping me up on news. Katie is a gem and I got a visit from Anth a few weeks ago and Andrew is coming this weekend My kids have been incredible through all of this keeping me positive and laughing with funny grandchild stuff.
Thanks for your love, faith and prayers. I feel them and will forver be grateful for people caring so much.
I do not know when I will be discharged. Everything is in baby steps and I still have strength to gain and a stomoch to start working again. Grateful my niece gave birth to twins-boy and girl and only 31 1/2 weeks along, but so far seem healthy. I don't have the details.
I'd love to see you and talk with you, but it might be a while as it is hard for me to communicate.
Love you all,
Kathy
Kathy here. It has now been 3 weeks since I had the donor cells infused in my body. It has been quite a rollar coaster only to be reminded that i am in a marathon for another six months to few years. I have been in the hospital for the most of the past three weeks. Doug and I thought it was optimistic to think that this could be done outpatient. I'm glad that I have been in the hosptital these last few weeks. Most of it has been a blur. I have been very sick and finally feel that I turned a small cornor last Friday. The fact that I am on my computer is huge. There is a a lot of suffering here, but to put it all in perspective, I have had the best care and grateful to all the personel here. It breaks my heart to think of suffering around the world. There are also the kindest patients here and we all have an infnity for each other, even though we are too sick to talk to each other.
I was finally able to drink some diluted apple juice on Saturday. I still have not eaten for over 10 days, but I can start to drink. There is nothing better than diluted apple juice with ice chips!!!!!
I still love hearing about people. Doug is so caring and loving and keeping me up on news. Katie is a gem and I got a visit from Anth a few weeks ago and Andrew is coming this weekend My kids have been incredible through all of this keeping me positive and laughing with funny grandchild stuff.
Thanks for your love, faith and prayers. I feel them and will forver be grateful for people caring so much.
I do not know when I will be discharged. Everything is in baby steps and I still have strength to gain and a stomoch to start working again. Grateful my niece gave birth to twins-boy and girl and only 31 1/2 weeks along, but so far seem healthy. I don't have the details.
I'd love to see you and talk with you, but it might be a while as it is hard for me to communicate.
Love you all,
Kathy
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