We left the house (in Holland) before 7 on Weds. morning in order to be on time for our first appointment at 10am. My first appointment was an echocardiogram of my heart. Those results should be in today but I am expecting it to be fine or at least good enough. There! I am not allowing anxiety to rule my thoughts and that my friends, is a very hard job.
Next we headed to the Lab for blood work. I could not understand why I had to wait so long before they called me back. When I saw the 21 vials on the table I understood! My lab tech was wonderful, I never even felt the poke and we were done in 5 minutes with just the one poke. She had thought we might have to switch it up in the middle but for once my body cooperated and it was pretty easy. For those of you who don't know, I have a deep, deep aversion to needles. I can clean any body fluid up, I have taken care of injuries, sick people etc. no problem. Needles are a different story for me, I go weak kneed at the thought of them. Doesn't that just make me a great candidate for what lies ahead? I am just going to have to get over this. I have made up my mind that I will so you know, I will!
After that pleasant experience we had a "Nurse Teach" session with Kim, my pre transplant Nurse Coordinator. We(Den, Jen, Sarah, Kate, Beth and Juliet) spent 2 hours going over all the details for while I am in the hospital. We talked about the chemo drugs I will receive, possible side effects, graft vs. host disease and what might happen with that. Kim had a calendar for each of us outlining each day and what happens that day. It was a good road map for each of us. We also had a tour of the transplant unit and were able to go into one of the empty rooms. Everything is very new and beautifully done. The rooms are spacious and nicely furnished. As we stood there I heard the girls saying what they were going to do with it to make it more "homey". My perspective was a bit different than their's. I saw it all as confining. When I think about that I realize that is my perspective as a relatively healthy person. May we be so blessed in that is how I will feel a few weeks into the process. That will mean that I am doing well, not just in my bed, and am wanting "out". It will mean all of my side effects are relatively minor and am getting back to myself. Many of you have asked about visiting me. That will completely depend upon how I am doing. I could be critically ill to doing well and there just is not a way to predict how I will do. Graft vs. host disease is the biggest concern. I don't know how my body will react to being invaded by someone else's stem cells. We want some reaction, because then we know the graft is taking, however if my organs become involved it can be life threatening. Secondly, the concern is infection as my body will have lost all of it's immunities, not just to what someone else might expose me to, but also to what exists within my body. That is what the 21 vials were about, figuring out what viruses and bacteria already exist within my body. Did you know you might have up to 80 viruses and bacteria in your body that your immune system co-exists with?
Then I had to hustle across 3 hospitals (they are all interconnected) to have my pulmonary function test. I had been quite worried about this one as they had told me at Spectrum I had necrotic (dead) tissue in my lung from the damage from the blood clot. I think all my walking has paid off. The test itself was easy, not challenging at all. The tech did tell me I did great! So that made me feel pretty good. Last of all was my chest x-ray which is standard procedure for transplant candidates. Whew! That was quite a day!
After a nice late lunch at Weber's in Ann Arbor we were able to see our apartment. Oh yes, I forgot to tell you that on Tuesday I had a call that said our apartment, we had previously rented, had been flooded from the upstairs apartment and needed a complete gut job which will take months not days. They were able able to find us another one, it is second floor which might be challenging for me, especially at first. Kim felt that it should be fine so we are going to go with that. I think physically it might be tough for me but I view that as a good thing. After all my walks in the neighborhood are getting easier so that means progress right? When I can go up those stairs without too much effort we know I am getting close to coming home to Holland. When we are in the apartment we can expect to return to the hospital about 3x a week. Hopefully no emergency trips but if we have to we are 4.2 miles from the hospital, which seems very important to Den. When we are in the apartment I will need a "caretaker" with me at all times. I have my wonderful family and 4 friends who will be trained in caring for me. For some people having a caretaker is the hardest part. Den and I are so blessed with our family and friends. Believe me, we don't take that for granted for a single second. The girls are relieved to know we have "back-up" for those times when everyone gets sick at the same time. You just know that is going to happen!.
So that's it folks! Needless to say home and our own bed looked pretty good by the time we got home on Weds. night. Next Thursday is my next time to go back and Ann Arbor better look out because Jane, Lynette and I are road tripping it! It should be a fun day and why not? I am getting "put out" for my bone marrow biopsy and Jane has threatened to put me in the back seat and ask me embarassing questions that I would probably answer due to all the drugs in my system! And you know she will! I so appreciate them giving Den a day off , especially since we have to go back 4 days later.
Again, how do I ever thank all of you for your prayers and support? We have had meals brought to us on just the right days when I am not able to do it for us. I loved yesterday's devotion. "Go gently through this day", I love that phrase, just love it. When I think that way everything seems endurable. You may use it if you like, especially if you feel you are having a tough day.
Go "Gently" my dear friends. Grace and Peace to all of us. Peggy
Friday, September 28, 2012
Sunday, September 16, 2012
More details and information
Well the reality of a stem cell transplant is starting to settle in. I will be admitted to the hospital one month from tomorrow. Many of you have asked what is going to happen. I will have my neostar (port) put in probably the day of my admission. They are going to take me off coumadin 10-12 days before, will go back to the lovanox shots at that time. My chemo, or conditioning will begin the next day and will go for 4 days, then a day of rest and then the transplant. The transplant itself will be somewhat anti-climatic as it is about a 15 minute IV transfusion. Then we wait and at that point everyone is different in how their bodies react. I will be on massive doses of antibiotics, blood products and anything else they deem necessary to sustain me.
The entire family came to Holland this weekend for family pictures and just some really good "together" time. The girls sat down and figured out to the best of their ability a schedule for while I am in the hospital. It does my heart good to know they will be there to support and relieve Den, I know this may be harder for him than it is for me. He doesn't say much but I know he is always thinking. We will get through this. Please keep praying for my donor. I cannot express adequately my gratitude to her. Even though it is a fairly painless procedure to be a donor it is certainly an interruption to her schedule and requires commitment. To do this for a complete stranger is just such a gift! My prayer is that the Lord will bless her greatly, I don't know what her heart's desires are but am praying that my Heavenly Father meets those desires.
Many of you have asked if you can contribute monetarily to our "swabbing event" and the answer to that is "yes". Because so many of the individuals are college age Den and I do not expect them to pay to be swabbed. The judging association I belong to, LMCCOA, is making a generous contribution and so is our "20-20" giving group that we have been a part of. Still there will be expenses to cover for the individuals who will come in to be swabbed. Please send your donation to Michigan Blood-Stem Cell Programs, Attn:Kona Dominick 1036 Fuller N.E. P.O. Box 1704, Grand Rapids, Mich. 49501-1704. Please note on your check that it goes to the Peggy Lintemuth Fund for the October 23 Swabbing Event at Grandville High School. That information should be sufficient and I thank you in advance. My hope and prayer is that we will provide a donor for someone else.
I wish there were more ways we could educate people to the need for more people on the Bone Marrow/Stem Cell Registry. So many people are willing to be on it once they understand what it means and how easy it is to participate. They (the medical community) are using stem cell transplantation to treat more and more diseases. Just this past week I read where it will be used to treat ALS (Lou Gehrig's disease) and Alzheimer's disease. It truly is a medical miracle and you will be reading more and more about it. If you know of someone between the ages of 18 and 44 please take the time to educate them and sent them to BeTheMatch.com to have a kit sent to their home, free of charge of course.
This is probably my last week of freedom, as the following week I will be in Ann Arbor for testing and appointments. I'm a little nervous about it, hopefully there won't be a reason to not proceed with the transplant, that my little blood clot episode did not do any major damage. As I said before I am tryng to walk at least 2 miles a day to improve my circulation, challenge my heart and lungs. I am doing everything I can to make myself as healthy as possible! As you can see my anxiety rears it's ugly head from time to time!
"You will not find my peace by engaging in excessive planning, attempting to control what will happen to you in the future. I did not design the human mind to figure out the future. That is beyond your capability. Commit everything to my care." "Jesus Calling" by Sarah Young.
Grace and Peace to you my friends. Peggy
The entire family came to Holland this weekend for family pictures and just some really good "together" time. The girls sat down and figured out to the best of their ability a schedule for while I am in the hospital. It does my heart good to know they will be there to support and relieve Den, I know this may be harder for him than it is for me. He doesn't say much but I know he is always thinking. We will get through this. Please keep praying for my donor. I cannot express adequately my gratitude to her. Even though it is a fairly painless procedure to be a donor it is certainly an interruption to her schedule and requires commitment. To do this for a complete stranger is just such a gift! My prayer is that the Lord will bless her greatly, I don't know what her heart's desires are but am praying that my Heavenly Father meets those desires.
Many of you have asked if you can contribute monetarily to our "swabbing event" and the answer to that is "yes". Because so many of the individuals are college age Den and I do not expect them to pay to be swabbed. The judging association I belong to, LMCCOA, is making a generous contribution and so is our "20-20" giving group that we have been a part of. Still there will be expenses to cover for the individuals who will come in to be swabbed. Please send your donation to Michigan Blood-Stem Cell Programs, Attn:Kona Dominick 1036 Fuller N.E. P.O. Box 1704, Grand Rapids, Mich. 49501-1704. Please note on your check that it goes to the Peggy Lintemuth Fund for the October 23 Swabbing Event at Grandville High School. That information should be sufficient and I thank you in advance. My hope and prayer is that we will provide a donor for someone else.
I wish there were more ways we could educate people to the need for more people on the Bone Marrow/Stem Cell Registry. So many people are willing to be on it once they understand what it means and how easy it is to participate. They (the medical community) are using stem cell transplantation to treat more and more diseases. Just this past week I read where it will be used to treat ALS (Lou Gehrig's disease) and Alzheimer's disease. It truly is a medical miracle and you will be reading more and more about it. If you know of someone between the ages of 18 and 44 please take the time to educate them and sent them to BeTheMatch.com to have a kit sent to their home, free of charge of course.
This is probably my last week of freedom, as the following week I will be in Ann Arbor for testing and appointments. I'm a little nervous about it, hopefully there won't be a reason to not proceed with the transplant, that my little blood clot episode did not do any major damage. As I said before I am tryng to walk at least 2 miles a day to improve my circulation, challenge my heart and lungs. I am doing everything I can to make myself as healthy as possible! As you can see my anxiety rears it's ugly head from time to time!
"You will not find my peace by engaging in excessive planning, attempting to control what will happen to you in the future. I did not design the human mind to figure out the future. That is beyond your capability. Commit everything to my care." "Jesus Calling" by Sarah Young.
Grace and Peace to you my friends. Peggy
Tuesday, September 11, 2012
We have a donor and dates!
It's all coming together! My donor went in for her consultation today and has agreed to move forward with the collection of her stem cells. How refreshing and encouraging that in today's world someone is willing to be inconvenienced to not just "help" someone but to stand in the gap to save a life! I, along with many of you have been praying for her, that she would be more than comfortable with the process and that she would feel the gratitude we have for her. We do not know where she lives or any other details other than she is 47yrs. old, has had one pregnancy and has been on the Registry since 1994. I am hoping to thank her in person a year from now.
I will be back and forth from Ann Arbor several times for extensive testing between now and Oct.17 when I am admitted to the hospital. Her stem cells will be harvested on Oct. 22 and 23. My transplant will be on Oct. 23 unless the stem cells get there so late in the day we have it on Oct. 24. We have an apartment rented from Oct. 8 until it's time to go home to Holland in January. It's a 2 bedroom, 2 bath fully furnished apartment about 10 minutes from the hospital. Dennis insisted on close proximity to the hospital, makes him a bit less nervous.
After all that we have been through up to this point it seems good to know exactly WHEN things are going to happen. My assignment of staying healthy the last time I talked with the transplant Dr....well let's just say I have failed miserably. I am walking now and working hard to get some stamina back, let alone rejuvenate my circulatory system.
Jesus Calling....."Bring your moments to Me, and I will fill them with vibrant joy". So when I lean toward anxiety I need to remember this. Please, by all means keep praying, I feel them strongly when I slide downhill a bit. We have so much to be grateful for, I survived a life-threatening blood clot, a few other minor infections and now a donor so willing to help me. I need to focus on the thank yous and not the "what ifs".
Grace and Peace to everyone of you, Peggy
I will be back and forth from Ann Arbor several times for extensive testing between now and Oct.17 when I am admitted to the hospital. Her stem cells will be harvested on Oct. 22 and 23. My transplant will be on Oct. 23 unless the stem cells get there so late in the day we have it on Oct. 24. We have an apartment rented from Oct. 8 until it's time to go home to Holland in January. It's a 2 bedroom, 2 bath fully furnished apartment about 10 minutes from the hospital. Dennis insisted on close proximity to the hospital, makes him a bit less nervous.
After all that we have been through up to this point it seems good to know exactly WHEN things are going to happen. My assignment of staying healthy the last time I talked with the transplant Dr....well let's just say I have failed miserably. I am walking now and working hard to get some stamina back, let alone rejuvenate my circulatory system.
Jesus Calling....."Bring your moments to Me, and I will fill them with vibrant joy". So when I lean toward anxiety I need to remember this. Please, by all means keep praying, I feel them strongly when I slide downhill a bit. We have so much to be grateful for, I survived a life-threatening blood clot, a few other minor infections and now a donor so willing to help me. I need to focus on the thank yous and not the "what ifs".
Grace and Peace to everyone of you, Peggy
Wednesday, September 5, 2012
Wednesday, September 5
We have been waiting for mom's INR counts to rise (2.0-3.0) so that she can come home. This morning her counts came back at 1.8. With these levels, the doctors gave her approval to come home! Thijs, Luci and I went up to Spectrum to get her this afternoon. Mom had everything packed and was very ready to go.
Overall, she is functioning so much better than the days leading up to her hospitalization. Determining the right levels for her pain management have been key to finding her relief. She will now be doing injections twice daily to continue to thin her blood and blood draws every 2 days to regulate her levels.
Mom's spirit and attitude continue to be upbeat. She is very excited about her 45th high school reunion this weekend and is very excited to catch up with so many friends.
Thank you again for all of your prayers, Kate
We have been waiting for mom's INR counts to rise (2.0-3.0) so that she can come home. This morning her counts came back at 1.8. With these levels, the doctors gave her approval to come home! Thijs, Luci and I went up to Spectrum to get her this afternoon. Mom had everything packed and was very ready to go.
Overall, she is functioning so much better than the days leading up to her hospitalization. Determining the right levels for her pain management have been key to finding her relief. She will now be doing injections twice daily to continue to thin her blood and blood draws every 2 days to regulate her levels.
Mom's spirit and attitude continue to be upbeat. She is very excited about her 45th high school reunion this weekend and is very excited to catch up with so many friends.
Thank you again for all of your prayers, Kate
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