My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?

Posted by Lori, Volunteer Mentor @loribmt, Feb 14 12:25pm

The past two years have been a storied journey of facing Acute Myeloid Leukemia and a subsequent bone marrow transplant. Being in a high risk category for relapse for AML, a transplant was necessary. Simply put, it would provide a completely new immune system to fend off any remaining AML cells lurking about in my body, after my original factory installed version had become defective in recognizing them. My husband and I shared a collective sigh of relief with the news that my latest bone marrow biopsy, at 19 months post transplant, showed no AML or the mutation which caused it. My new immune system is working!
While celebrating the results with my husband and a pizza, it occurred to me how far I’ve come and how life has changed in the past two years since the onset of AML and the transplant. There have been some challenging transitions but none insurmountable. Of course, life as a genetically modified organism, with two sets of DNA and a new blood type, can have its turf wars with a few GvHD issues, adaptations to medications and such. But I’m incredibly happy to have a second chance with this generous gift of life from an anonymous donor, and through the medical expertise of my amazing BMT-team at Mayo-Rochester. Hopefully I can meet my donor someday to thank him in person. I did send him a card right after the transplant giving him my “undying” gratitude!
We’ve all been given a gift of life. I’d love to hear your story. Lori

What diagnosis brought you to a BMT?

How has it impacted your life and that of your caregiver?

@secglc2

We love Cascade Creek! My husband and I rented a furnished apartment on the creek and walked it every day. I’ve regained my weight & a little more. My energy level is good. I have my 2 year checkup next month. Thanks for your interest!

Jump to this post

2 years is another milestone! Congratulations. I just had my 2nd re-birth day the of June and everything is 100%. I’ll take it!!
I bet you’re like me in that two years ago at this time, no one could have convinced us we’d ever feel this great again, right?

I hope that by sharing your experience you’ll be able to connect with other members facing similar situations.
Have you perused any of the other conversations besides the blood cancer group?

REPLY
@secglc2

My Story

I am blessed! God worked a miracle through me! I was dying at a Colorado hospital. I was getting weaker and weaker, my fevers kept spiking and the doctors didn’t have a clue! Boarding a medical flight, I was transported to the Mayo Clinic, where God saved me! Let me tell you my story.

It started with flu-like symptoms in early November 2018: I felt terrible, very weak, had night sweats, couldn’t eat. Losing 45 pounds, I was aghast at my appearance, I was emaciated. My primary care doctor sent me to the gastroenterologist, thinking my condition was an ulcer because of the blood in my urine. The gastroenterologist immediately sent me to the ER because I had a high fever and very low blood pressure. My feet and ankles were swollen like softballs.

In early December, I was admitted to the hospital and spent one week there. They ran a bunch of tests, but couldn’t figure out what was wrong. They released me with a diagnosis of “fever of unknown origin.” I was sent home with an appointment to see a rheumatologist. That doctor thought I had Stills disease, so she treated me with steroids for two months while I was at home. Each day was a distressing surprise of further deteriorating problems. A urinary tract infection developed, followed by thrush in my mouth. I also experienced the most embarrassing thing, my rectum came outside my anus. A visit to the proctologist was needed to get it put back in. Living on the couch, I was so tired and thirsty all the time. The steroids helped a little bit. They barely got me through Christmas, but I was still having terrible night sweats, changing my pajamas three times a night because of being drenched in sweat. In late January 2019 ,the rheumatologist sent me to the hospital, via the ER where I spent the month of February.

Too weak to lift a fork, severe anemia was rampant, iron blood levels fell below 7 g/dL (normal is 12-15 g/dL). Multiple blood transfusions were administered and iron was given by IV. My arms turned black from the incessant needle poking. The doctors gave me on multiple occasions a cocktail of medicine, which gave me nightmares. They did multiple tests, including a brain biopsy. The surgeon hit the mark, but touched my brain, which caused a stroke, resulting in numbness to my left side. I couldn’t walk, my mouth was drooping, oxygen was given at three to four liters per minute, and my feet and legs were swelling greatly. My temperature would roller coaster from mid 80s°F to 103°F. Time was a blur during the disease, all sense of time and space was lost. The simple task of thinking required intense concentration. The doctors there could not determine a diagnosis. Meanwhile, I was getting weaker all the time. The doctors couldn’t tell me anything in terms of my diagnosis. They couldn’t even come up with a plan for diagnosis. My frustration was increasing. Bedsores were beginning to develop on my body.

Through the grace of God and my husband’s diligent work, I was medical flighted to the Mayo Clinic on March 7, 2019. Upon arriving at St. Marys, we felt a sense of peace. God’s presence is evident there. It was comforting to see a picture of Jesus or a cross in every hospital room.

Within two days, the doctors at Mayo took 750 ml of fluid off my lungs, which resulted in no longer needing oxygen. I had several blood transfusions and plasma transfusions while at St Marys. Several units of iron for my anemia were applied. I was incontinent. Then within five days of arriving at Mayo, the doctors at Mayo diagnosed me with Primary CNS Lymphoma,(diffuse large B cell) a rare and aggressive white blood cell cancer. The tumor was deep within my brain, and inoperable. They started chemotherapy and physical therapy. Getting around for the next few weeks required using a walker. The goal of many a day was simply a walk and a shower. I felt Jesus with me. He prevented me from having any pain and told me that I was going to be all right. I was in hospitals at Mayo Clinic continuously from March to late May. Then, in and out of the hospital through August.

Stuart and I moved to Rochester, Minnesota for six months. God bless my cousin and her in-laws for offering their house to use for two months free of charge! Then we rented a house in nearby St. Charles for a couple of months. After that, the doctor wanted us closer to the hospital, so God blessed us with an apartment in a park by a stream, Cascade Creek. We often walked along the stream, as it was a joy to us.

To my great delight, God provided a divine appointment(coincidence) one day when 2 nurses walked in my room and introduced themselves with the same 2 names as my daughters!

I was treated with MRT chemotherapy for six months. At this point, my PET, brain MRI, CAT scans and extensive blood tests were all negative! I was now a candidate for a stem cell transplant. A growth factor drug called neupogen was given to me. This drug told my stem cells to report to the bloodstream. It worked so well, the doctor jokingly called me an over-achiever! My body produced double the stem cells needed and in only one day, which is uncommon. I had an autologous (from my own stem cells) stem cell transplant in August 2019. I was cured and released after 21 days! The chemo wiped out my childhood immunizations, so I had to get those again.

God worked through the doctors and nurses at the Mayo Clinic. I am forever grateful to them. Being treated with respect and love is standard care for them. I am thankful for all the hospital visits from family, friends and the pastor from my church. I was especially elated to see my daughters come to visit me both in Denver and Rochester. Their presence was comforting to me, along with my mom, and sisters who also came. Thanks to my friends, and brother-in-law, for their multiple trips to see me. It was good to see my cousin, and his wife, who were at Mayo for his checkup. It was also good to see Stuart’s cousin, and his wife, who were also at Mayo for his checkup. My sweet hairdresser stopped by the hospital to cut my hair. That brightened my day! I am thankful for all the prayers from family, friends, and the church. My mother texting me scripture verses every day, along with receiving wonderful cards from family and friends, and Stuart bringing in music kept me upbeat. I was amazed by all the prayer chains I was in around the country. Prayers are powerful! I am especially thankful to my husband, Stuart who fought for me and stood by me through it all. We are both so grateful to Stuart’s employer for providing great insurance and time off.

The difference between for profit and non-profit medicine became very apparent. We were bombarded with separate bills from every provider I had at the Colorado hospital. Most of the providers at this hospital are contractors. Mayo presented us with one bill. With the Colorado hospital, it was all about the money; with Mayo it was all about the patient. Mayo works as a team and they put the patient first.

Our insurance, United Health Care took care of us. They stood by us when battling for my records and for release with the Colorado hospital, they communicated with Mayo Clinic. They called many times to check up on me. They stood by their amazing benefit plan. They provided a jet and ambulances to get me to Mayo.

I was in the hospital continually from February through May, then off and on through August as I received chemotherapy. I don’t know God’s purpose for this illness, but He filled my heart with such tremendous love and joy. I hope the light of Jesus shone through me during this time.
In God’s graciousness, He cured my severe lactose intolerance and changed my straight, thin, blonde hair to thick, dark, beautiful curls!

Recently was my one year checkup, with clear results! I’m back to hiking, gardening, volunteering and Bible study.

God is good!

In His Name,

Gwen Collins

Psalm 30:2 O Lord my God, I called to you for help and you healed me.

Psalm 34:7 The angel of the Lord encamps around those who fear him and he delivers them.

1Peter 5:10-11 And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast. To him be the power for ever and ever. Amen.

Is 38:16 . . . You restored me to health and let me live.

Jump to this post

Miracles really do happen! Thank you for sharing your powerful story❤

REPLY

I was diagnosed with AML in March of 2016, and had my stem cell transplant in August of that year. The journey leading up to STC included two induction chemos, which kept me in the hospital for 7 weeks, and then three consolidations. I was in remission and my doctors started talking about doing the transplant. None of my four siblings turned out to be my matches, but a 21 year old German college student was 10/10 match! I'm very grateful that he decided to donate to someone he didn't even know.

My transplant was successful, while two of the friends with AML whom I met during that time did not survive. This was a bitter sweet experience because I survived and was recovering, while they were dying.

Because I had moved twice since my transplant, I'm at my third BMT clinic. This time it's Mayo in Phoenix, AZ. I am very pleased with my doctor and how thorough she is. I feel like I'm in good hands now.

I've had GVHD off and on, and currently have skin GVHD. I'm also in the process of getting a diagnosis for a liver disease. It doesn't looks like GVHD according to my doctor, so I'm waiting do a biopsy and an MRI next week.

I met my donor in July of 2019. He and his dad flew from Germany to meet me. It was such a treat to meet him, to share my story and hear his story of why he chose to donate his stem cells.

After two and a half years out of work, I'm back working in higher ed., doing what I love. I had to move to get this job, but I was determined not to let my health problems stop me. My new normal is very different from what it was before getting AML. I've learned to be grateful for each good day, enjoy simple everyday things, appreciate my family who supports me and thankful to God that I'm still alive.

REPLY

Thanks for sharing your story!

REPLY
@alive

I was diagnosed with AML in March of 2016, and had my stem cell transplant in August of that year. The journey leading up to STC included two induction chemos, which kept me in the hospital for 7 weeks, and then three consolidations. I was in remission and my doctors started talking about doing the transplant. None of my four siblings turned out to be my matches, but a 21 year old German college student was 10/10 match! I'm very grateful that he decided to donate to someone he didn't even know.

My transplant was successful, while two of the friends with AML whom I met during that time did not survive. This was a bitter sweet experience because I survived and was recovering, while they were dying.

Because I had moved twice since my transplant, I'm at my third BMT clinic. This time it's Mayo in Phoenix, AZ. I am very pleased with my doctor and how thorough she is. I feel like I'm in good hands now.

I've had GVHD off and on, and currently have skin GVHD. I'm also in the process of getting a diagnosis for a liver disease. It doesn't looks like GVHD according to my doctor, so I'm waiting do a biopsy and an MRI next week.

I met my donor in July of 2019. He and his dad flew from Germany to meet me. It was such a treat to meet him, to share my story and hear his story of why he chose to donate his stem cells.

After two and a half years out of work, I'm back working in higher ed., doing what I love. I had to move to get this job, but I was determined not to let my health problems stop me. My new normal is very different from what it was before getting AML. I've learned to be grateful for each good day, enjoy simple everyday things, appreciate my family who supports me and thankful to God that I'm still alive.

Jump to this post

Thank you for sharing your journey! When I read all of the personal stories from fellow transplant members it just amazes me how resilient our bodies are, and really, how resilient WE are to endure all the chemicals, the foreign DNA, the meds and the psychological impact. It’s so wonderful that you’re able to be back working at the job you love and embracing life. Our transplants don’t have to define who we are. But they have given us that second chance at life and I’m thrilled to see you’re embracing each and every moment. I’m the same way! Each day is a gift not to be wasted.

I share your sadness over the loss of fellow transplant friends. My husband and I became good friends with another couple we met going through the same procedure. She and I had our transplants the same day. Her husband and my husband became such good friends over the course of weeks. Sadly, though the doctors tried heroic measures, my friend didn’t make it. It was so disheartening. To be honest, I actually felt some survivor’s guilt for a while.

Aw, meeting your donor had to be such a special moment! And wow, it’s really cool that he and his dad came over from Germany to see you! I’m a little envious because I also had a 20 year old young man but from the US, 10/10. We make a great team, but sadly he hasn’t returned any contact information after I sent the request months ago. It’s ok as he owes me nothing…but I owe him my life and would really like to properly thank him. I’ve sent 2 cards but never had any communication with him. I’d love to know who he is, what motivated him to give his donation and a little more about him. Since transplant, I no longer have a sensitivity to Almonds but I can’t eat Egg-Beaters anymore. LOL.

Did you learn little things like that from your donor? If he had any allergies?

REPLY
@estrada53

Thanks for sharing your story!

Jump to this post

Thank you for connecting me with this site!

REPLY
Please sign in or register to post a reply.
  Request Appointment