Judy's Journey |
| Entry Posted on: 03/14/2010 March 14, 2010 Dear friends and family, in these past two or so years, when we knew that a heart transplant would be my only hope for renewed health, several friends asked that when, “the time came,” I would use a website to help inform them of my progress, and help them know how to pray. I am just now beginning to understand why this site is so important. I have come to realize that first of all, it is oh so difficult to say just how I am doing on any particular day. Saying the words to family and friends, that my heart is failing and now I must go on the transplant waiting list, is something that I found I could not do. I needed my family to help me get the words out. Second, I have found that I do not always have the energy to talk much. Conversing and discussing can take more energy than I have, especially during the afternoons and evenings. So perhaps I can use this website to help you better understand this journey for me and my family, even as my energy fades. And third, knowing how to pray is important, but I have found this to be difficult at best. For how do I ask for a new heart and renewed life, when I am so aware of just where that heart and life will come from? What words should I pray? What words should I ask you to pray? I mostly do not have an answer. But I do ask that perhaps we pray together that God’s will be done, in my life and life of my donor and family, and that He would give all of us strength for this journey. Most of you know that my journey began in 1970. I was ten years old and diagnosed with Hodgkin’s Lymphoma, a cancer thought to be incurable in those days. I had three surgeries, was hospitalized for 10 days, and treated with 6 weeks of radiation therapy to my neck and chest. The tumors gradually disappeared. Thirty-nine years later and I guess you could say that I was cured! (Even my doctors now don’t say that I am cured, they say that I am in a durable remission.) As I look back on those winter months, I am amazed at what I had to go through. But I don’t remember any ill feelings; I have mostly pleasant thoughts about all of it. I am sure that those months were far worse for my parents than it was for me. But as we all look back, we can see that it was surely God’s grace that brought us through. Grace brought us comfort in fear, and grace brought me complete healing when there was little hope. We, my parents and doctors, knew that radiation could cause problems down the road, but because so few children survived Hodgkin’s disease back then, they did not fully understand all the long term effects the radiation could have. We now know that the radiation did indeed cure my cancer, but it also damaged every single cell in the path of the radiation. And our worst fears came true with the development of thyroid cancer in 1990 and breast cancer in 1998. But by God’s seemingly endless grace, both of these cancers were cured as well. The damage done to my heart and lungs was probably there immediately following my treatments. But as a child and into my adult years I could really keep up with everyone, except that I never had the endurance of my classmates or other moms of my age. I gradually started to tire more easily, became short of breath, and developed pressure in my chest with only moderate exercise. My doctors in GR could not conclude what the problem was and I was referred to the Mayo Clinic for many tests and appointments in June of ’05. All the tests said that I needed immediate surgery for a scarred coronary artery. The bypass surgery was successful and we returned home two weeks later. However soon after we returned home I went into heart failure, caused by inflammation of the pericardium, the sac around the heart. This caused my bypass grafts to fail, which ultimately lead to putting a stent in that coronary artery, an artery not usually fixed with a stent. What I live with now, 39 years after my Hodgkin’s disease, is a heart that is stiff and scarred from the radiation, and can’t pump enough blood to meet the oxygen needs of my body. Unfortunately, there is nothing to make my heart “un-stiff”. I am on lots of medications, but their job is to keep my heart from working too hard. I am now being seen at the Cleveland Clinic. They are one of the best transplant teams in the nation. And about a year ago they told me that a heart transplant was probably inevitable, we just did not know when. Then this past February, my symptoms worsened, and my doctors here along with my doctors in Cleveland together decided that it was time for me to be listed for a heart transplant. Already, amidst these difficult last few weeks, we have been blessed by so many of you. Thank you for your calls of concern when it is so difficult to even know what to say, for meals and gifts, for offers of help, for cards of encouragement, and of course for remembering each of us in your prayers. So in advance of so many blessings yet to come, we thank you! Tomorrow we will travel again to Cleveland for three doctor’s appointments, tests, and another heart cath. We are hopeful that these tests will help the doctors and us know how to proceed. As we approach this week, we ask for your prayers for safety in traveling, wisdom for all, and peace that does indeed pass all understanding. In Christ alone, Judy Entry Posted on: 03/18/2010 March 18, 2010 Dear family and friends, We are now home from the Cleveland Clinic! We had two days of testing and three doctors' appointments. They talked to us in detail about the whole process of a transplant, from when the call comes that a heart is available, to deciding if that heart is right for me, all the way through surgery and post-op. All of this was hard to hear and even more difficult to wrap our arms around. I seem to find myself replaying these discussions and wondering how it will really happen for me. Then the heart cath from yesterday told us that some of the numbers were a bit worse and some about the same; all of them abnormal though. So the plan is that I will continue to be able to wait at home. At this time I do not need to be hospitalized with IV medications. This is very good news as it means my heart is keeping up for now! We will try to update you as things change. In the meantime, we thank you so much for your overwhelming support of each of us in this time of waiting. We appreciate your prayers as we deal with new information and the reality of all of this for our lives, and of course the other lives that may be involved someday. You have already been a blessing to us, and for that we are very thankful! In gratitude, Judy Entry Posted on: 04/06/2010 April 6, 2010 Dear family and friends, I just want all of you to know that your emails mean so much to me and my family. I look forward to reading them everyday! I read them often, sometimes reading them over again and again when the days seem long. What a blessing to belong to a family of God that lives in so many places and some of you from so far away! We have now been waiting for over a month, but that month did go by quickly. For those of you who do not know me well, I am not laying of the couch waiting for the phone to ring. I do try my best to keep busy, and to lead a somewhat normal life. Actually many of you would probably envy my life just a bit as I don't have that many responsibilities, but just really have home projects to work on. I try to keep busy with some sewing, or quilting, or cooking in the mornings and then I read for 2-3 hours in the afternoons. In the evenings I usually have quite a bit of chest pain and no energy, so I will often just watch TV till bedtime. Two weekends ago Dan and I were able to watch Brian and Stacie at a horse show in Lansing. My energy allowed us to stay for only about an hour and a half, but it was great to get out and watch each of them ride, as well as to watch Stacie's students ride. Then this past week my sister June was in town from Massachusetts. We were able to have a Wevers family dinner on the deck at Jackie's home (It was 75 and sunny on March 31 in Michigan!!!) Then June and her boys and I went to Reed's Lake for lunch last Friday. And to top if off I was able to attend church for Easter. Yes, all of these activities do take a toll on my endurance and my heart does work very hard, but I am ever so thankful that I can still participate in life! I want to thank you again for your prayers. We are doing well while we wait. Thank you to all of you who have signed up on face-book, and to all of you who are now are walking this journey with us through this web page. Our dear kids deserve my most sincere thanks as Amanda set up the face-book page, and Brian set up this website. What a blessing to have support from my dear family, and all of you! In Christ, Judy Entry Posted on: 06/03/2010 Dear family and friends, This past Wednesday marked 13 weeks for us that we have been waiting. I am thankful to say that mostly it has gone by quite quickly for me. There seems to be a cycle that I go through often--being very ready and hoping to receive a call for a heart, and then hoping that the call does not come today. I know that this daily uncertainty does put a lot of stress on my family. So thank you again for your continued prayers as we wait. I have always said that part of God's grace in our lives is that He doesn't allow us to see and know the full impact of something immediately. God gives us time to figure out all that could or could not happen. And that certainly was true once again when we were told it was time for me to be listed back in February. I did not fully comprehend immediately what was in store for me and my family. It was three days after I was listed that I thought about our Amanda's graduation from Calvin College in May. That was a long three months away! Would I be around to see her graduate? Would we be waiting in the hospital in Cleveland? Would our whole family be in Cleveland recuperating from transplant surgery? By God's grace Amanda did graduate from Calvin this past May 22, and Dan and I were able to not only see her graduate but be able to celebrate with family for an open house for her and cousin Kim as well. Despite lots of adrenaline, I did surprisingly well with minimal chest pain! Our next appointment to go back to Cleveland has already been scheduled for July. Once again I will have a heart cath, labs, and two Doctors' appointments. Once again, the numbers from the heart cath will determine if I can continue to wait at home. We want to thank those of you who have been willing to cook a meal for us, knowing that a meal with low salt and low fat usually means low flavor. Your meals have been tasty and we are thankful for those days which allows me to rest a bit more. And I will never be able to say this enough, but thank you for remembering all of us in your prayers during this time of waiting. I don't think we could endure without your prayers, your help, and His promises. In Christ, Judy Entry Posted on: 07/25/2010 July, 25, 2010 Dear family and friends, The time has come for us to return to Cleveland for more testing, and doctors appointments, which will include another heart cath. When we left Cleveland last April, my doctor's last words to me were--"The best thing that could happen for you, is that you get a call for a heart before you come back in July." Well, that has not happened. Now 22 weeks have passed since I have been listed on the national transplant list, and we are still waiting. I have had some very difficult days in these last couple of weeks, with very significant chest pressure all day, and energy for almost nothing. So once again we ask for your continued prayers that this week's appointments, tests, and numbers will help my doctors and us know how to proceed. We will travel to Cleveland tomorrow, have a full day of testing on Tuesday, and hopefully return home on Wednesday. Thank you for waiting with us, Judy Entry Posted on: 07/29/2010 July 29, 2010 Dear family and friends. We are home! All of my tests said that once again, I am well enough to be able to continue to wait at home as a status 2. It seems as though this trip to Cleveland was filled with reminders, perhaps it is reminders that we needed. Our first reminder came at 7am on Tuesday morning when I was waiting for my EKG. After the only other person waiting for an EKG struck up a conversation with me, Debbie told me that she had recently had a heart transplant. I eagerly told her I was waiting for a heart! Debbie was listed two days after I was listed last March, but received her heart one week later. As we were exchanging our stories, an Amish woman came to wait with us. She too had just received a heart this past June! All three of us were then called for our EKG’s and we said our goodbyes. A short while latter, Debbie and I both ended up checking in for labs at the same window. It was then that she pulled a stone out of her pocket with the word, “COURAGE” engraved. She said “I would like for you to have this.” I graciously accepted it and now have it home with me. I can’t help but think that God placed those women in the waiting room with me, to remind me that hearts are being transplanted and that there is hope for a new life! Conversations with the doctors reminded us of many things. I am on all the right meds and there is nothing more they can do with medications. I was reminded to stay as active as possible, but if I have a day of significant chest pain to just take the day off. I was reminded that nothing about my heart condition is ordinary or usual when my neck vein had trouble clotting after my heart cath, and again during the evening requiring a trip to the ER. I was reminded that there are many very kind and caring “angels” at the Cleveland Clinic who were able to assist me with the bleeding episodes and who will be there for me and my family when the time comes for a transplant. We were reminded that an evening of fun for Dan, with a college friend, at the Cleveland Indians stadium is just what he needed after a hard day of being by my side at the Clinic. And I was reminded of God’s care for me on the shuttle ride back to the hotel Tuesday evening after my bleeding seemed to have stopped. The music playing on the shuttle bus was a southern gospel CD. The words being sung as I got seated in the shuttle were, “All I have needed Thy hand hath provided. Great is Thy faithfulness, Lord unto me. (You may recognize these words from the well known hymn, “Great is Thy Faithfulness”). As I rode back to the hotel, utterly exhausted and with more than a few tears, I was reminded that I am not on my own. In Christ, Judy Entry Posted on: 10/01/2010 Dear Family and Friends, THANK YOU, thank you, thank you everyone for all of your much appreciated birthday greetings! Thank you also for your love and care shown to me and my family with your words of encouragement. I have had so much fun checking the mail for more than two weeks now. In total I believe I received 192 cards! (Even our postman said, “Wow this must be quite a special day”, when he handed me 46 cards in just one day!) It would be my desire to respond to each of you personally, but my energy level won’t allow me to do that. So please accept these words of appreciation for all of your kind words of hope and love. A HUGE THANKS also to my dear sisters and parents and family for getting the word out about my BIG birthday! This Wednesday now marks 30 weeks that we have been waiting. It seems that waiting does not get easier the longer you do it! In general my fatigue is bit greater and there are more days than not when the pressure in my chest is pretty significant and pretty constant. I am also experiencing multiple short episodes of “extra” heart beats that we are in the process of trying to diagnose. My doctors are currently deciding what further evaluation needs to happen. We ask for your prayers that these extra beats will not progress to lengthy or more frequent episodes, and that my doctors will have the wisdom to know how to deal with yet another issue. Thank you again for keeping us in your prayers. So many of you wrote to me in your birthday cards that your whole church or your whole school in indeed praying for us. Please do extend my most grateful thanks to all of these people, who are continually upholding my family and my possible donor family in prayer. If I could, I would give each of you a hug of thanks! In Christ, Judy Entry Posted on: 11/29/2010 November 29, 2010 Dear family and friends, With grateful hearts, we were able to celebrate Thanksgiving at my parents last Thursday with lots of relatives, and also Dan's birthday yesterday with Brian and Stacie and Amanda; a wonderful few days with family! But now we look ahead to this week when we will return to Cleveland for more testing and appointments. This Wednesday, December 1, will also be the 40 year anniversary of my diagnosis of Hodgkin's Disease. It is hard to wrap our arms around where we are now and what all has happened in these past 40 years, knowing the despairing diagnosis my parents were given back in 1970, and the multitude of the answered prayers along the way. As we await more tests, another heart cath, test results, numbers, guidance, and decisions from our doctor in Cleveland, we once again ask for your continued prayers for our family. With thanksgiving and gratitude, and yes some weariness and worry, Judy and family Entry Posted on: 12/04/2010 We're Home Dear family and friends, We are home after two days in Cleveland. While we were very grateful to travel home, it is hard again to face all of the unknowns as we continue to wait at home. The heart cath showed one number about the same, a few numbers a bit worse, and one number significantly worse. These numbers seem to explain why I am feeling worse, with increasing pressures in my heart and my lungs. Even with these numbers my doctor decided that I am stable enough to continue to wait at home. We are trying to be hopeful, even though our doctor told us that they have not transplanted a status 2 (waiting at home) patient in quite a long time. He told us that there are simply not enough good hearts available. My only hope is that I am quite small and could accept a small heart, one not suited for most of the men on the transplant list. Thank you so much for your notes of encouragement! I treasure the time checking my email and hearing from so many of you. Now we look forward to quiet Christmas celebrations with family and friends. Entry Posted on: 03/28/2011 Dear family and friend, We just came back from an appointment at the Cleveland Clinic. I had the usual tests including another heart cath. Everything, once again, looks to be about the same. Some numbers are a tad better, some a tad worse, which means no change in meds or activity. We had a good discussion with my cardiologist and also had the opportunity to meet with another one of the transplant surgeons. (There are 4 heart transplant surgeons, and we have now met 3 of them.) This too was a positive experience, and we were reminded that we have some of the best doctors and surgeons in the country looking after me and my complex heart situation. Despite the fact that we have now been waiting for over a year, they are still hopeful that a heart may become available for me while waiting at home as a status 2. We are certainly grateful for their optimism. It would seem that I should not be surprised by an encounter in the lab waiting room at 7:30 am, since twice before others have introduced themselves to me as a heart recipient, but I was! Sitting right next to me, Tom asked me if I had received a heart transplant? I told him that I am waiting-over a year in fact. Our conversation took off from there--he received his new heart 21 months ago. We had a brief introductory talk and then met up with each other again in the heart cath waiting area. We then talked for 45 minutes and I learned about his experiences waiting 32 days for a heart in the hospital. He told me about the "wave" of emotions that came over him when they said to him "Tom, how would like a new heart today?" He also explained that four other men were waiting on the same floor with him. These five, all with differing heart failure diagnoses, became closest of friends, a real support to each other, as they each awaited the same miracle. All received the provision of a new heart in the span of 7 days. All are doing well today! Once again I was so grateful to hear someone's story. I was so thankful to hear that while I am waiting at home--five hours away from the Clinic--that miracles are still happening over there. I was reminded that none of these encounters are happening by chance. There is a purpose. God does have a plan! I just have to be patient and have hope. Judy Entry Posted on: 08/01/2011 Dear family and friends, my next appointments and testing have been scheduled for quite some time now, and once again we will return to Cleveland to determine how my heart is holding up. This Wednesday will mark 17 months of waiting. Waiting for the call which will change all of our lives. None of us thought that we would be waiting this long, nor that it would be this difficult. It is hard to hang on to the hope of a renewed life for months and months. But by God's grace, He is holding on to each of us, and He is not letting us go! For that gift and so many other gifts, we are incredibly thankful! Our days in Cleveland will not only be filled with the usual testing, discussions, and decisions, but we will have the opportunity to meet Stephanie face to face! Some of you may know that Stephanie and I were brought together two years ago by the Cleveland Clinic. Like me, Stephanie is an adult survivor of childhood cancer. The chemotherapy and radiation that saved her life 33 years ago from Ewing's Sarcoma ultimately led to the failure of her heart. She received the miracle of a new heart three years ago at the Cleveland Clinic. To this day we have talked only by phone--hours and hours and hours--and have become dear friends. Now we will have the opportunity to meet in person as she also has follow-up appointments at the Clinic. We are walking this road, this journey, together. As Stephanie so beautifully wrote about her story and mine: "We are two individuals: alike, yet distinct in this moment. Two lives: threatened in youth; restored, with consequence. Two hearts: broken beyond repair; stitched together, no fear of rejection. Yet, One longs to embrace a new heart while the other struggles to take ownership of the heart received. One looks forward in anticipation while the other looks back in remembrance. One waits while the other waits with..." As we anticipate a joyful and possible tear filled meeting with Stephanie, we also realize that both of us will walk side by side to days of testing and lengthy discussions with doctors about the status of our heart--hers; new and thriving we pray, mine; failing and hanging on we pray. We know that so many of you pray daily and pray often. We continue to thank you. We promise to keep you informed about our visit and our test results. In gratitude for your abundant love and concern, Judy Entry Posted on: 08/09/2011 Home Again! Dear family and friends. Yes we are home! Wednesday we had the privilege to meet Stephanie and her little eight year old son, Abel. Our meeting was indeed a blessing to all of us, certainly filled with joy, and also accompanied by tears. It was so good to put a face to her very familiar voice. Cleveland Clinic wishes to tell our stories of childhood cancer, our remarkable cures, consequences of our cancer therapies, heart failure, heart transplant, organ donation, and of course the story of our friendship. So they (the Clinic) captured on film our face to face meeting, and all of our appointments and testing and procedures the next two days. We are uncertain as to how our stories will eventually be told, but we both trust and firmly believe that bringing awareness will certainly help many!!! We are pleased to inform you that Stephanie's heart is functioning very well, with no evidence of rejection! My heart remains about the same, a few numbers a tad worse requiring a slight change in meds. All in all my heart continues to hang in there despite the many challenges of constrictive and restrictive cardiomyopathy. Thank you, Thank you, Thank you for your notes of encouragement and love! You all are a blessing to me and my family. Judy Entry Posted on: 11/30/2011 Gratitude Dear family and friends, with much gratitude we were able to celebrate thanksgiving again with many family members--a crowd of 18 at my sister Jackie's home--thankful for good appetites, good food, and good conversations with all. On Friday Amanda, Dan, and I were able to be with Brian, Stacie and precious Brayden--celebrating 10 months of miracles, growing, and health for Brayden, as well as celebrating Dan's birthday. Now we anticipate another trip to the Cleveland Clinic for testing as this appointment once again falls on my anniversary of my diagnosis of Hodgkin's Disease, 41 years ago. For all of you who continue to bring meals, who continue to help in small and big ways, who continue to send notes, and who continue to pray and encourage; we continue to give thanks with hearts full of gratitude. Judy and Dan Entry Posted on: 12/06/2011 Dear family and friends, it seems hard to put into words the events of our Cleveland trip. Once again we had good discussions with Dr. Taylor and once again the heart cath was a difficult procedure, but showed numbers that required only a slight change in meds. We were discharged on time and left to drive to Amanda's home in Ypsilanti Friday before noon. However shortly after we were on the highway, my neck started bleeding (where they inserted the catheter for my heart cath) which was the beginning of 28 hours of ER visits, puzzled doctors and nurses, and continual blood loss. Back home here at Spectrum on Saturday, the problem was finally relieved requiring an injection with meds into my neck, and two stitches in the skin. Despite a very exhausting 2 days, I am fine, and Dan was a pillar of strength through it all. We received great medical care from everyone in Cleveland, Ypsilanti, and Spectrum, and for this we are very thankful! We had lots of time to think and ponder while we awaited care, recommendations, and possible solutions in 2 ER's. Our family was reminded that nothing is easy on this journey. Nothing is ordinary when in comes to heart failure caused by radiation therapy. Nothing about future procedures and possible heart transplant will be easy or without risks. And none of this is possible without God's grace guiding us every step of the way. Once again we thank you for continued prayers for our whole family during my recovery and during our waiting. I treasure your notes of encouragement, your hugs, and blessings from near and far. Judy Entry Posted on: 04/13/2012 Dear family and friends, It has been way too long since I have updated you. Much has happened, and to be honest, it is sometimes too difficult to put words to this journey. We recently had appointments in Cleveland. I had my 18th heart cath, and once again had trouble with bleeding after the procedure. Knowing that this has happened way too often, my Doctor discussed my case in detail with the transplant team, and they together decided that I needed to go off the drug, Plavix. This med keeps me from forming a clot in my stent in a major coronary artery. The problem is that Plavix also could cause catastrophic bleeding during transplant surgery, a risk they and us, are not willing and frankly, cannot take. However, going off Plavix now puts me at a somewhat increased risk of a heart attack. They have assured me the risk is small, but never the less, we have had to make preparations for a possible emergency situation. We are now set up with a home medical response system, and any doctors and paramedics who could possibly be called to care for me are also informed of my medical history, and will immediately know to check my heart. The heart cath also showed that my heart is a bit more stiff, meaning a bit more compromised, accounting for my increased fatigue. But I do believe that I am in a great routine of being able to accomplish a few things in the mornings without pushing myself, and then basically resting the remainder of the day. I am so thankful that I love my home, my surroundings, our neighborhood, and don't mind spending so much time here. I am also so thankful I love to read as this occupies my time for hours a day. If you have a good book you want to recommend--please email me the title! Continually Grateful, Judy Entry Posted on: 04/13/2012 Continued from above Sorry, this paragraph was omitted! As we once again deal with change, and the varying thoughts and worries that accompany all of these decisions, we continue to press onward. Despite all of this, I believe we have been graced with the ability to cope with perhaps a few more months of waiting for the miracle of a new heart. This wait has now been 25 months, and we know that the chances of me receiving a heart at this point, are greater that when I was first listed. So we continue with hope. And we continue to thank you for upholding us in your prayers. Specifically now, we request prayers for my heart to be free of clots. Continually grateful, Judy
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