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

@secglc2
Gwen,
I just read your SCT story. Thank you for sharing it.

I pray you are still cancer free. Your praise to God for your recovery is inspiring. You give enormous hope to those of us following you - admittedly with a much simple case of myelofibrosis - but trying to prepare for the SCT.
Thank you again.

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.

@dwolden Thanks for posting this resource! I launched a new discussion this morning and added your suggestion of bmtinfonet.org to the list of helpful transplant resources!

Here’s the new discussion. https://connect.mayoclinic.org/discussion/bone-marrowstem-cell-transplant-informational-websites/

17 months post allo SCT and my husband is dealing with chronic GVHD (apparently relatively mild). I wanted to share the new resource we have found:
https://bmtinfonet.org/
For all things transplant.

@katgob Hi Kat! Congrats on the great blood numbers!! Even though you’re not anticipating anything amiss, it’s still a relief to actually see the numbers holding steady! I’m hoping for the same news when I have my check-in with my local H/Oncol the end of March. He wanted to do labs twice per year, every 6 months. But it worked out such that I see him once per year, then see my BMT doctor at the 6 month mark. So I still get checked twice annually but once per doctor. My last one with the BMT doctor was the first time in 6 years that everything was perfect! Everything!! Whoo whoo. We were all shocked! 😂. So I’m really hoping it’s the same in another 2 months…
Aw, it’s rough when you lose some favorite nurses or NPs, isn’t it? You become like family with such frequent appointments. I have 2 nurses with whom I remained friends since my AML days. We try to get out to dinner a couple times a year to catch up.
You mentioned writing to your donor again. I’ve tried several times to no avail. He continues to not respond to the my attempts to initiate contact. Kind of bummed about that because I’d love for him to know what an amazing gift he gave me. Though I know he owes me nothing, I owe him everything! Have you ever heard back from your donor?