Just wanted to give everyone a quick update, mom has been admitted back into the hospital. She has been struggling with her breathing for the past 2 weeks, not really being able to do much more than sit. She understands that her health can quickly spiral and did not want a relapse like this winter so she called Ann Arbor. The doctors had her come in and ordered a CT scan which showed her lungs look much worse today than they did in May. They admitted her yesterday (Thursday) and today she had a battery of tests including a "bronchoscopy" which is when they push fluid into the lungs and extract the fluid back out to culture. Currently we are waiting for all of the results to come back probably tomorrow or Sunday. At this point, the doctors are going through a process of elimination and ruling out various infections, this may be GVHD in the lungs. Mom is receiving the best care possible and the good thing is when the doctors figure out what is going on in her lungs they will be able to treat her. Once we have a diagnosis from the doctor we will update the blog.
That is all for now.
Sarah
Friday, August 8, 2014
Monday, August 4, 2014
July
Dear Friends and Family,
Sorry I have been an absentee blogger this month. July started out well for me. I was feeling good, I had much more energy and stamina. That is until I caught a terrible cold that went right to my lungs! I spent most of the next 3 weeks trying to recuperate. I feel OK now but am having breathing issues meaning, breathing is hard! I had a chest x-ray last week and the radiologist said no pneumonia. So I don't know what is going on with my lungs. I go back to Ann Arbor, August 20 so we will see. If it gets any worse I will go sooner. I'm not sure what that means for this winter during cold and flu season, time will tell.
So other than that this has been an interesting month. We had basement flooding issues at the cottage and now Den has the boat into the Sault to have it fixed, something about head gasket. I think our neighbors with out boats, ATVs etc. have the right idea.
I am laughing right now thinking about all of this. Really we are fine we have just had one of "those" streaks. I am sitting in my living room (at Piatt) with beautiful sunshine and a beautiful lake. Life with it's bumps and bruise is still pretty good.
Reeds are here. They are making a college visit up here then heading home Weds. Eli has Senior Pictures on Friday! Time really does fly. Anna will be a Freshman this year!
Kate and the boys are coming to the cottage Tuesday night. Ready for this? Luci starts pre-school tomorrow! Hopefully it will go smoothly not just for her sake but for Beth's too. Simpsons are in their normal beyond busy mode, no big change for them, this month at least.
Here's hoping August goes more smoothly. I will let you all know what Dr. M says.
Grace and Peace, Peggy
Sorry I have been an absentee blogger this month. July started out well for me. I was feeling good, I had much more energy and stamina. That is until I caught a terrible cold that went right to my lungs! I spent most of the next 3 weeks trying to recuperate. I feel OK now but am having breathing issues meaning, breathing is hard! I had a chest x-ray last week and the radiologist said no pneumonia. So I don't know what is going on with my lungs. I go back to Ann Arbor, August 20 so we will see. If it gets any worse I will go sooner. I'm not sure what that means for this winter during cold and flu season, time will tell.
So other than that this has been an interesting month. We had basement flooding issues at the cottage and now Den has the boat into the Sault to have it fixed, something about head gasket. I think our neighbors with out boats, ATVs etc. have the right idea.
I am laughing right now thinking about all of this. Really we are fine we have just had one of "those" streaks. I am sitting in my living room (at Piatt) with beautiful sunshine and a beautiful lake. Life with it's bumps and bruise is still pretty good.
Reeds are here. They are making a college visit up here then heading home Weds. Eli has Senior Pictures on Friday! Time really does fly. Anna will be a Freshman this year!
Kate and the boys are coming to the cottage Tuesday night. Ready for this? Luci starts pre-school tomorrow! Hopefully it will go smoothly not just for her sake but for Beth's too. Simpsons are in their normal beyond busy mode, no big change for them, this month at least.
Here's hoping August goes more smoothly. I will let you all know what Dr. M says.
Grace and Peace, Peggy
Monday, June 23, 2014
Wonderful Weekend
Tina joined the Registry over 20 years ago when it was blood work to register and bone marrow to donate. There were no stem cell transplants only bone marrow. Now there are more stem cell transplants than bone marrow. She said she would do it again in a heartbeat. If only more people would register. She was my one in 13 million! There are no words to express what I feel towards her. I read once that a true blessing is satisfying a desire of your heart that you did not even know that you had. Tina is my blessing.
I am doing well as you can see from the pictures. I am gaining strength and stamina every day. It feels good to feel more like myself. I am deeply grateful for this. Everyone else in the family is doing well also. Just thought you would like to know.
If you have not joined the Registry yet, please do as soon as possible. Tina kept saying over and over what a blessing it has been to her, saving a life! Just contact Be The Match for a free swab kit and save someone's life. If you are pregnant please ask your doctor for the forms to donate the cord blood when you deliver. Otherwise it is just thrown away. One cord can save a life.
Grace and Peace,
Peggy
Tuesday, June 3, 2014
ALL IS WELL
Good Tuesday Morning!
I thought I would check in as I have been getting questions lately. I am doing so much better. My last labs were good and everyone is satisfied with my progress. I'm not as good as I was over the holidays but so much better than Jan. and Feb.! And best of all I have not been sick since my last posting.
Dr. Magineau is slowly weaning me off the immunosuppression drugs, so far my body seems to be cooperating for which I am very grateful....please pray it continues.
Family is great. It's the end of the school year rush so most of you know how that goes. Everyone is beyond busy!
Tina (my donor) and I have been in contact and she is planning a trip to Michigan. I am excited to have her meet my family and show her around Holland.
Not much more to say....and that is OK with me! I try to do a few projects every day, it helps to feel productive and now that the weather is decent I am walking more. It feels so good to not be as cold as I have been all winter and spring, not that we had a spring, seems as though we went straight from winter to summer!
Take care, thank you again for your kind thoughts and prayers. I will update again after Tina's visit with pictures too.
Grace and Peace, Peggy
I thought I would check in as I have been getting questions lately. I am doing so much better. My last labs were good and everyone is satisfied with my progress. I'm not as good as I was over the holidays but so much better than Jan. and Feb.! And best of all I have not been sick since my last posting.
Dr. Magineau is slowly weaning me off the immunosuppression drugs, so far my body seems to be cooperating for which I am very grateful....please pray it continues.
Family is great. It's the end of the school year rush so most of you know how that goes. Everyone is beyond busy!
Tina (my donor) and I have been in contact and she is planning a trip to Michigan. I am excited to have her meet my family and show her around Holland.
Not much more to say....and that is OK with me! I try to do a few projects every day, it helps to feel productive and now that the weather is decent I am walking more. It feels so good to not be as cold as I have been all winter and spring, not that we had a spring, seems as though we went straight from winter to summer!
Take care, thank you again for your kind thoughts and prayers. I will update again after Tina's visit with pictures too.
Grace and Peace, Peggy
Friday, April 25, 2014
Florida and post vacation blues
Dear Friends and Family,
As you have probably figured out our meeting with Tina was on our annual trip South. She is a Georgia girl so meeting in Atlanta was arranged. Again she is so sweet that I am really looking forward to introducing her to my family. She is a Middle School Counselor and coached the 8th grade girl's basket ball team so I am not too worried about overwhelming her with our crew! By the way her team had a very successful season and a lot of fun. So one more thing we have in common!
Our first week in Florida I was in definite "slow mode". The second week I felt much better. My coughing diminished. I was waited on pretty much...my family again taking such good care of me. I could not get on top of my nausea though so I knew I was losing more weight. Not eating was not helping my energy level so I really forced myself to eat.
Den drove home with Sarah, Ella and Grey. Kate and the boys were my ticket home. The boys are amazing travelers. It was a nice trip home. We got back to Holland Saturday evening.
I was pretty tired on Sunday which I blamed on traveling. Monday I woke up with the "sniffles", or so I thought. To make a long story short I called UofM, they wanted me to get tested for flu and to see if the RSV was out of my body. Tests results were positive for Influenza B. I was told to go home rest and stay away from people. I slept for at least 18 hours a day for the next 5 days! This week has been better each day. I was retested on Weds. and am currently "flu free".
I had an appointment with Dr. Magineau on Monday. He is not happy about me constantly getting all of these infections. He believes I may have an Adrenal Insufficiency mainly due to all the steroids, so he took me completely off the prednisone and put me on hydrocortisone and took me off one of my immunosuppression pills. His hope is that my body would start making it's own steroids. Of course if the GVHD rears it's ugly head it's back to the steroids. He wants to try and I really appreciate his concern and understanding. We both want to get me off of all these meds. My body needs to kick in and start doing what it is supposed to do! So that would be my prayer request if you would like to know.
The good news is even though my lungs are far from perfect they have vastly improved since January. He said a year or two from now I would look back at this as a "bump in the road". I found that to be VERY encouraging, and Dr. M does not want me to be a prisoner in my house. I am under strict orders of: no breathing any dust, I cannot pull a weed, no breathing in any household cleaners. He said I need to protect my lungs so they can heal. I am not to stay in the house, just being very careful about what I inhale. I can live with that. Also more positive developments, my nausea has really been better. I have gained three lbs. this week! I feel so much better when I am eating more. How anyone functions with anorexia is beyond me.
Den and I are eating out tonight for the first night in looong time. I think the last time was with Tina and her family.
So that's it folks. One of the things that has helped with my sanity is realizing how many people have gone through tough times. One of my former athletes had her baby girl very prematurely. She was having her 4th surgery today, at 77 days old. Please pray for that young family. So many others too. It takes my mind off myself which is a good thing.
Well we are off to dinner, the sun is shining. Tomorrow I am going to Midland. Ella has her State Finals on Sat. then I am staying for a few days to cover for the kids. Sarah has some days where she has to leave by 6am and Seth has his last week of classes so he will be in East Lansing all week. It's time to get back to "normal" and do something productive.
Thank you for your prayers and concerns. It touches me so when the girls are asked about me and I start hearing, "when are you posting". I have received blessings I never knew I would need. I am back into "fighting" mode!
Grace and Peace, Peggy
As you have probably figured out our meeting with Tina was on our annual trip South. She is a Georgia girl so meeting in Atlanta was arranged. Again she is so sweet that I am really looking forward to introducing her to my family. She is a Middle School Counselor and coached the 8th grade girl's basket ball team so I am not too worried about overwhelming her with our crew! By the way her team had a very successful season and a lot of fun. So one more thing we have in common!
Our first week in Florida I was in definite "slow mode". The second week I felt much better. My coughing diminished. I was waited on pretty much...my family again taking such good care of me. I could not get on top of my nausea though so I knew I was losing more weight. Not eating was not helping my energy level so I really forced myself to eat.
Den drove home with Sarah, Ella and Grey. Kate and the boys were my ticket home. The boys are amazing travelers. It was a nice trip home. We got back to Holland Saturday evening.
I was pretty tired on Sunday which I blamed on traveling. Monday I woke up with the "sniffles", or so I thought. To make a long story short I called UofM, they wanted me to get tested for flu and to see if the RSV was out of my body. Tests results were positive for Influenza B. I was told to go home rest and stay away from people. I slept for at least 18 hours a day for the next 5 days! This week has been better each day. I was retested on Weds. and am currently "flu free".
I had an appointment with Dr. Magineau on Monday. He is not happy about me constantly getting all of these infections. He believes I may have an Adrenal Insufficiency mainly due to all the steroids, so he took me completely off the prednisone and put me on hydrocortisone and took me off one of my immunosuppression pills. His hope is that my body would start making it's own steroids. Of course if the GVHD rears it's ugly head it's back to the steroids. He wants to try and I really appreciate his concern and understanding. We both want to get me off of all these meds. My body needs to kick in and start doing what it is supposed to do! So that would be my prayer request if you would like to know.
The good news is even though my lungs are far from perfect they have vastly improved since January. He said a year or two from now I would look back at this as a "bump in the road". I found that to be VERY encouraging, and Dr. M does not want me to be a prisoner in my house. I am under strict orders of: no breathing any dust, I cannot pull a weed, no breathing in any household cleaners. He said I need to protect my lungs so they can heal. I am not to stay in the house, just being very careful about what I inhale. I can live with that. Also more positive developments, my nausea has really been better. I have gained three lbs. this week! I feel so much better when I am eating more. How anyone functions with anorexia is beyond me.
Den and I are eating out tonight for the first night in looong time. I think the last time was with Tina and her family.
So that's it folks. One of the things that has helped with my sanity is realizing how many people have gone through tough times. One of my former athletes had her baby girl very prematurely. She was having her 4th surgery today, at 77 days old. Please pray for that young family. So many others too. It takes my mind off myself which is a good thing.
Well we are off to dinner, the sun is shining. Tomorrow I am going to Midland. Ella has her State Finals on Sat. then I am staying for a few days to cover for the kids. Sarah has some days where she has to leave by 6am and Seth has his last week of classes so he will be in East Lansing all week. It's time to get back to "normal" and do something productive.
Thank you for your prayers and concerns. It touches me so when the girls are asked about me and I start hearing, "when are you posting". I have received blessings I never knew I would need. I am back into "fighting" mode!
Grace and Peace, Peggy
Monday, March 31, 2014
LET'S GET UPDATED
I don't know why I have taken so long to bring all of you up-to-date. Everyone has been asking for what the latest news is so.....here we go.
My last appointment at UofM was with Dr. Kitco who is a Graft vs Host Disease (GVHD) specialist. I had a lung CT scan the day before and it showed either significant damage or GVHD of my lungs. She leaned toward the GVHD diagnosis. She tweaked some of my meds and I am using two inhalers now. I think they are helping because I feel as though I can inhale more deeply now. It was not exactly what I wanted to hear but I am determined to make the best of it. She encouraged lots of exercise. I asked her if it winded me to go up and down stairs should I go again? Her answer was yes. Good exercise will help with lung expansion and make the best of the capacity that I have. Again I will follow Drs. orders. It is a bit challenging because the two inhalers make me so shaky and off balance. Sometimes my gait is a little crooked!
Feb. and March were pretty boring months as I stayed in the house for the most part. Den came back from a business trip with a terrible cold, which of course is what I worked so hard to avoid. I moved into Beth and Chad's place for 5 days or so, until Den was feeling much better. The temperature has been SO cold that just walking out to the car could induce a lot of coughing. Staying home seemed the best option.
HOWEVER I DO HAVE EXCITING NEWS! Meet Tina!
Tina is the donor who gave me life and hope. She is a beautiful person inside and out. We met for dinner on our way South. Her husband, David, and her son, Peyton and daughter in law Meg also joined us. They are a wonderful family and it was fun to start to get to know each other. Tina and I spent most of our time sharing stories. She registered for Be The Match 20 years ago, back when it was bone marrow only, no stem cells. After all these years she got the call and immediately went in for her blood work.She was chosen by my transplant coordinator and really she not only was my best choice but my only. If she had not registered 20 years ago I would not be here today. If she had not responded so quickly it might have been too late judging by how I felt. The Lord knew what I needed long before I needed it and the medical technology was not even a reality. How amazing!
Again my plea for young (18-44 years) adults to register with Be The Match. You may be the only one who can give life and hope to someone desperately in need. A young man who registered at the LMCCOA swabbing event was called in for blood work and is waiting to hear if he will be the donor. I am so proud of my officiating friends and the effort they put forth to host the event. If we can help one person it would feel awesome.
Tina and I look forward to seeing each other again. I invited them to Michigan this summer so she can meet our family, which she very much wants to do.
So to all my prayer warriors, our prayers have been abundantly answered. Tina and her church family have been praying for me long before she had any idea who I might be. All she knew was someone needed her and she considered it a blessing and an honor to donate. What a beautiful heart and attitude!
To say this has been an emotional time for me would be an understatement.
Yet like many other difficult times it has produced a harvest of good experiences with opportunities for growth. Sometimes I lose sight of that. Meeting Tina has really given me encouragement.
So after a very long Feb. and March I was able to experience something wonderful. My heart is filled with gratitude. How many times do you thank someone for saving your life? That is the thought and question I leave you with.
Grace and Peace To All Of Us......Peggy
My last appointment at UofM was with Dr. Kitco who is a Graft vs Host Disease (GVHD) specialist. I had a lung CT scan the day before and it showed either significant damage or GVHD of my lungs. She leaned toward the GVHD diagnosis. She tweaked some of my meds and I am using two inhalers now. I think they are helping because I feel as though I can inhale more deeply now. It was not exactly what I wanted to hear but I am determined to make the best of it. She encouraged lots of exercise. I asked her if it winded me to go up and down stairs should I go again? Her answer was yes. Good exercise will help with lung expansion and make the best of the capacity that I have. Again I will follow Drs. orders. It is a bit challenging because the two inhalers make me so shaky and off balance. Sometimes my gait is a little crooked!
Feb. and March were pretty boring months as I stayed in the house for the most part. Den came back from a business trip with a terrible cold, which of course is what I worked so hard to avoid. I moved into Beth and Chad's place for 5 days or so, until Den was feeling much better. The temperature has been SO cold that just walking out to the car could induce a lot of coughing. Staying home seemed the best option.
HOWEVER I DO HAVE EXCITING NEWS! Meet Tina!
Tina is the donor who gave me life and hope. She is a beautiful person inside and out. We met for dinner on our way South. Her husband, David, and her son, Peyton and daughter in law Meg also joined us. They are a wonderful family and it was fun to start to get to know each other. Tina and I spent most of our time sharing stories. She registered for Be The Match 20 years ago, back when it was bone marrow only, no stem cells. After all these years she got the call and immediately went in for her blood work.She was chosen by my transplant coordinator and really she not only was my best choice but my only. If she had not registered 20 years ago I would not be here today. If she had not responded so quickly it might have been too late judging by how I felt. The Lord knew what I needed long before I needed it and the medical technology was not even a reality. How amazing!
Again my plea for young (18-44 years) adults to register with Be The Match. You may be the only one who can give life and hope to someone desperately in need. A young man who registered at the LMCCOA swabbing event was called in for blood work and is waiting to hear if he will be the donor. I am so proud of my officiating friends and the effort they put forth to host the event. If we can help one person it would feel awesome.
Tina and I look forward to seeing each other again. I invited them to Michigan this summer so she can meet our family, which she very much wants to do.
So to all my prayer warriors, our prayers have been abundantly answered. Tina and her church family have been praying for me long before she had any idea who I might be. All she knew was someone needed her and she considered it a blessing and an honor to donate. What a beautiful heart and attitude!
To say this has been an emotional time for me would be an understatement.
Yet like many other difficult times it has produced a harvest of good experiences with opportunities for growth. Sometimes I lose sight of that. Meeting Tina has really given me encouragement.
So after a very long Feb. and March I was able to experience something wonderful. My heart is filled with gratitude. How many times do you thank someone for saving your life? That is the thought and question I leave you with.
Grace and Peace To All Of Us......Peggy
Sunday, February 9, 2014
HOME AGAIN
Good Sunday Evening,
Den was able to bring me home Friday evening. My house looked wonderful to me and my bed was sheer Heaven! My sleep has been so interrupted by labs, treatments etc. that I wasn't sleeping well at all, maybe an hour at a time. Once home and in my own bed sleep has not been an issue.
I need to be very careful for the next month or so. Dr.M warned me that I need to stay as healthy as possible so that another bout of pneumonia does not happen. He warned me that repeated bouts could result in permanent lung damage and I surely do not want that to happen. I had to give up the last 3 weeks of the regular season (Competitive Cheer) and my tournament assignments. Those of you who know me well know how disappointed I was not to finish the season. Everyone has been understanding and helpful in finding replacements for me. Thank you to all of my cheer friends. Next year hopefully I will be off the immunosuppression meds and my own immune system will be working more efficiently.
Jen and her girls, Anna, Emma and the Simpson Family came to Holland on Sat. Ella and Luci had a joint birthday party Sat. evening. Chad's family were in town also and Den, Kate, Thijs and Liam were there also. I stayed home and stayed a little more quiet. This morning Mac was dedicated and all the families were there for that. Again I stayed home and stayed quiet.
Saturday was a shaky day for me but today I have felt much better. My breathing is deeper and not labored at all. When I think how sick I was 11 short days ago I am amazed at how well I am doing. I could not walk alone 6-7 steps and was gasping for air the entire time. Here at home I can walk about and start gaining back some stamina. I do return to U of M on Weds. to see Dr. Magineau and he will give me a plan as to how he wants me to proceed. He will make a decision as to when I can get back to my ECP treatments.
That's pretty much all the news I have for you right now. I am laying low and taking it easy per Drs. orders. I need time for my lungs to heal, hopefully this spring I can start pushing it and my hope is to do a little running yet this summer. Time will tell on that.
Take care my friends, stay warm and healthy.
Grace and Peace, Peggy
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