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

Posted by Lori, Volunteer Mentor @loribmt, Feb 14, 2021

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?

Interested in more discussions like this? Go to the Transplants group.

@gingerw

@loribmt Although I have not had an SCT, I find these discovered differences to be absolutely fascinating! Wow!
Ginger

Jump to this post

Ginger, I remember my daughter’s words when I started undergoing all the treatment for AML and the SCT, “Mom, this would be an utterly fascinating scientific adventure if it wasn’t happening to you.”

Receiving someone else’s stem cells, which then set up housekeeping in the bone marrow of the recipient is truly incredible. The process is so involved, requiring significant matching of genetic biomarkers. In my case I had one person out of 20 million match me 10 for 10, which is a significant match for someone completely unrelated to me. It’s the best we could have hoped for.
A peripheral stem cell transplant (from donor blood) and a bone marrow transplant (marrow aspirated from donor) provide the same outcome. The newly transplanted cells, whether placed into the bone by injection or into the blood stream by transfusion all end up in the marrow, essentially transplanting the bone marrow. So, that’s why you’ll hear people say they’ve had a bone marrow transplant even if it was a stem cell transplant. They have new bone marrow either way. The procedure is different, the outcome is the goal.

My husband affectionately refers to me a little Frankenstein monster because I now have two sets of DNA, making me a Chimera. If you were to take a swab from the inside of my mouth, I’m still ‘me’. If doing a DNA sample from my blood, I am 100% my donors DNA and his blood type. Perfect scenario for a murder mystery! I thought it would make a great plot of a book, but it’s been done already. 😀

As you can imagine, there are some major adjustments when an entirely new blood type and immune system takes over the controls. With an organ transplant, the recipient takes meds so the new organ doesn’t get rejected by the body. With a SCT/BMT it’s the entire body of the recipient that can be rejected by the new immune system! So meds are a must until the two can learn to play together. Takes time!

Sorry! I could talk about Stem Cell/Bone Marrow transplants for hours. Two years ago I had no concept of the process. Now, it’s like learning a new language through immersion! I’m well versed. LOL.

REPLY
@loribmt

Ginger, I remember my daughter’s words when I started undergoing all the treatment for AML and the SCT, “Mom, this would be an utterly fascinating scientific adventure if it wasn’t happening to you.”

Receiving someone else’s stem cells, which then set up housekeeping in the bone marrow of the recipient is truly incredible. The process is so involved, requiring significant matching of genetic biomarkers. In my case I had one person out of 20 million match me 10 for 10, which is a significant match for someone completely unrelated to me. It’s the best we could have hoped for.
A peripheral stem cell transplant (from donor blood) and a bone marrow transplant (marrow aspirated from donor) provide the same outcome. The newly transplanted cells, whether placed into the bone by injection or into the blood stream by transfusion all end up in the marrow, essentially transplanting the bone marrow. So, that’s why you’ll hear people say they’ve had a bone marrow transplant even if it was a stem cell transplant. They have new bone marrow either way. The procedure is different, the outcome is the goal.

My husband affectionately refers to me a little Frankenstein monster because I now have two sets of DNA, making me a Chimera. If you were to take a swab from the inside of my mouth, I’m still ‘me’. If doing a DNA sample from my blood, I am 100% my donors DNA and his blood type. Perfect scenario for a murder mystery! I thought it would make a great plot of a book, but it’s been done already. 😀

As you can imagine, there are some major adjustments when an entirely new blood type and immune system takes over the controls. With an organ transplant, the recipient takes meds so the new organ doesn’t get rejected by the body. With a SCT/BMT it’s the entire body of the recipient that can be rejected by the new immune system! So meds are a must until the two can learn to play together. Takes time!

Sorry! I could talk about Stem Cell/Bone Marrow transplants for hours. Two years ago I had no concept of the process. Now, it’s like learning a new language through immersion! I’m well versed. LOL.

Jump to this post

@loribmt Thank you for more information. It is just so fascinating! And a life saver for anyone going through it. I completely understand about being able to speak on a health issue/concern. Knowledge is key to responding well, and my herd of issues has given me quite a opportunity to learn things, and how it all works together. The physical body is an amazing thing!
Ginger

REPLY
@lisal64

Thank you, Lori, for your sweet reply! I am glad we have our re-birthdays close together! And yes, between my husband and I, we have 12 Grandchildren, and now have our 1st Great Grandaughter! Our oldest Grand was able to visit with her last month, from California, for her 1st Birthday. We were thrilled! Both adults had to show negative Covid tests within 72 hrs of boarding plane, both to and from Georgia! But it was very special for us to finally meet our precious Great Grand! I double masked for her cake and small "party", and got some great pictures!
And I did have an Autologous SCT. I recieved injections for 4 days, to ramp up my stem cells. Then I had my own Stem Cells "harvested", in one day! (Enough for 2 transplants!). They freeze and keep half, in case I need a second SCT down the road. The process is similar to hemodialysis. These were frozen until transplant! I am so sorry others who have donor transplants, have to go through GVHD. But I have heard of many wonderful outcomes from these, as well! Wishing you the best on your own journey!
I have not been able to work since Cemo induction, July, 2019. I nursed on a busy med-surg unit for 9 years prior to diagnosis. Being only 54 at diagnosis, indeed pulled the rug out from under me! My local Hemotologist/Oncologist, said these words to me: "You have Multiple Myeloma. There is no cure. You will be on Chemo for the rest of your life." That was pretty much all I heard during that entire visit. I was an emotional mess for the first 6 months or so, especially after having progression of disease after the 1st , very rough, 4 months of treatment. But I have adjusted, finally. At this point, I am not sure if I will return to work, or not. It would be part time if at all.
As for the pain, my doctor thinks it may be an ongoing thing. But I have thought that PT may help me learn to strengthen muscles without causing fractures. I am to have a PET scan in April, locally, to check on my bone lesions. These lesions cause a very increased risk of pathological fractures, and compression fractures, even when a patient is in complete response (remission). I am currently in Very Good Partial Response.
(I have multiple lesions throughout my skeleton.) Thank you for mentioning PT!
The maintenance chemo will be ongoing for at least 2 years or more, as long as I remain in good response. If relapse occurs, I will begin another regime of chemo.
The puppy has been a lifesaver! I was so sad and down during the summer. He is so sweet and playful. And loves hugs and belly rubs! ❤ He keeps me moving, with multiple short walks every day. He follows me everywhere around the house! I can not wait to have the Grandchildren here with us like before the pandemic!
Thank you for starting this discussion! Some of the best information I have gotten, is from fellow warriors going through similar battles! It is also comforting to know one is not alone!

Jump to this post

@lisal64 Hi Lisa, Thought I’d pop in today to see how you’re doing. It’s been a while since we’ve chatted.

Have you had the PET scan yet to check on the condition of your bones? I know it’s like sitting on pins and needles waiting for results sometimes. For your sake, I certainly hope there’s improvement and no new lesions. You’ve been through enough of this!

I have to share this. I know you love dogs and your puppy is a little godsend for you. Our neighbors have a little 8 week Golden!! My heart is now lost… I get to enjoy this little furball now until the time is right for us to get a dog again. So cute!!

Were you able to get your Covid vaccination yet? And, when is the reunion with the Grands?? ☺️

REPLY

It’s never a dull moment with SCT!
My liver functions went back to normal, but then last week my platelets tanked to 8, in just one week. So, I was admitted into Mayo for 3 days for platelets, igg and steroids. Numbers came up, but today back down again (96). So, it’s a juggling act. My tacro is .5mg/day plus acyclovir and voriconazole.
No more 3 x week Bactrim but now pentamidine nebulizer once a month.
One odd thing is that 2/3 weeks prior to my low platelets, I received my first set of vaccinations, 7 of them at once but not the Covid vaccine yet. I’m hoping this was an underlying factor.
My bone marrow and CD33 are both 100% donor and CD3 is still 80% donor.
So the juggling continues. I am very grateful for my Mayo team and look forward to when I can get away for travels. My best wishes wishes to all!

REPLY
@waveg

It’s never a dull moment with SCT!
My liver functions went back to normal, but then last week my platelets tanked to 8, in just one week. So, I was admitted into Mayo for 3 days for platelets, igg and steroids. Numbers came up, but today back down again (96). So, it’s a juggling act. My tacro is .5mg/day plus acyclovir and voriconazole.
No more 3 x week Bactrim but now pentamidine nebulizer once a month.
One odd thing is that 2/3 weeks prior to my low platelets, I received my first set of vaccinations, 7 of them at once but not the Covid vaccine yet. I’m hoping this was an underlying factor.
My bone marrow and CD33 are both 100% donor and CD3 is still 80% donor.
So the juggling continues. I am very grateful for my Mayo team and look forward to when I can get away for travels. My best wishes wishes to all!

Jump to this post

@waveg I always say we SCT patients need to keep a sense of humor and a sense of adventure. Never quite know from day to day what fun, delightful obstacle will drop in our path! LOL

It’s great your liver numbers are back up. But it sounds like knife juggling is out for a while with low platelets. ☺️
It’s interesting that the change came within that 2-3 week period where the immune system starts the adaptive immune response.

When we get our vaccinations after transplant they’re intentionally ‘dumped’ together. We get the greatest benefit and response from our new immune system when we receive all of our vaccines at one time. So our new defense mechanism really gets a chance to be aggressive.
The steroids stop the over aggressive response. Hopefully this is just a reaction to the vaccinations and all will be back to normal soon enough.

You had an IgG test run to test for inflammation/infection and immune response. Did your transplant team have any comments regarding this?

It is a juggling act when balancing meds. Our bodies are so unique at this point, ‘one size does not fit all’. Your immune system is still in early stages of development. It isn’t considered adult until the 2 year mark.
You’re no longer an infant but you are early teens. LOL It’s still pretty temperamental.
So hang in there! Eat foods rich in vitamin K, green leafy veggies, carrots, folate, milk, etc..
When’s your next blood test?

REPLY

Learn more about fellow member and volunteer mentor @loribmt in this Member Spotlight. Lori shares with fellow member Rosemary why she likes to be Mayo-naised and the quote and life motto that guide her moral compass and motivation for helping others.

– I’ll take an order of Hope with a side of Mayo, please! – Meet @loribmt https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/ill-take-an-order-of-hope-with-a-side-of-mayo-please/

Check out all the Member Spotlights here https://connect.mayoclinic.org/page/about-connect/tab/newsfeed/

REPLY
@loribmt

@lisal64 Hi Lisa, Thought I’d pop in today to see how you’re doing. It’s been a while since we’ve chatted.

Have you had the PET scan yet to check on the condition of your bones? I know it’s like sitting on pins and needles waiting for results sometimes. For your sake, I certainly hope there’s improvement and no new lesions. You’ve been through enough of this!

I have to share this. I know you love dogs and your puppy is a little godsend for you. Our neighbors have a little 8 week Golden!! My heart is now lost… I get to enjoy this little furball now until the time is right for us to get a dog again. So cute!!

Were you able to get your Covid vaccination yet? And, when is the reunion with the Grands?? ☺️

Jump to this post

Hi Lori! So sorry it has taken me this long to respond! I hope you are doing well. I have had a busy spring, and summer! My PET scan in April showed "response to treatment"! It was the best PET scan of the 5 that I have had, in 2 years! The lesions are still there, of course, but no progression! Then, in June, I had my 1 year check up after the BMB, bone study, bone density scan, and lab work. We recieved the great news that I am in Complete Response! The Pomalyst 4 mg maintenance has worked. So this makes it easier to accept the side effects of pain and fatigue, that I am still experiencing. My specialist at Mayo wants me to continue the maintenance for the next year, then recheck. He did mention that the dose is sometimes adjusted, but I am afraid to rock the boat just now. I have MM and regular labs, locally, tomorrow. And every 2 months, if no problems.
So we will see . I am still on Synthroid for Hypothyroidism, which was diagnosed in December. My Thyroid was fine prior to SCT. My biggest concern is that I still do not feel I can work yet. Everyone tells me not to rush that. I did talk to my pharmacist, about the pain and fatigue that will not let up. She did tell me that both are side effects of the Pomalyst, as well as MM. My husband and I recieved both of the Covid Vaccines, late April/ May, in between all of my regular re-vaccinations. I had no serious side effects from either, except a sore arm with both, and slight fever for 1 day, and swollen lymph glands, after second. I stopped my Pomalyst for 5 weeks, per my hematologist recommendations (1 week before 1st, through 1 week after second), so hopefully I have some protection. Our Covid numbers have sky rocketed over the last 3 weeks. So I am back on lockdown, for now. And very sad about it all, too. We did have the children and grandchildren here for Easter. That was such a great day! And I did see the children and grands much more, while the pandemic had calmed down. Our "puppy", Bear, will be a year old on the 16th! He weighs about 110 pounds now! He is so swee, and keeps us both entertained, and busy! Sorry for the long post! I will try to get on here a little more often. Take care and stay safe!

REPLY
@lisal64

Hi Lori! So sorry it has taken me this long to respond! I hope you are doing well. I have had a busy spring, and summer! My PET scan in April showed "response to treatment"! It was the best PET scan of the 5 that I have had, in 2 years! The lesions are still there, of course, but no progression! Then, in June, I had my 1 year check up after the BMB, bone study, bone density scan, and lab work. We recieved the great news that I am in Complete Response! The Pomalyst 4 mg maintenance has worked. So this makes it easier to accept the side effects of pain and fatigue, that I am still experiencing. My specialist at Mayo wants me to continue the maintenance for the next year, then recheck. He did mention that the dose is sometimes adjusted, but I am afraid to rock the boat just now. I have MM and regular labs, locally, tomorrow. And every 2 months, if no problems.
So we will see . I am still on Synthroid for Hypothyroidism, which was diagnosed in December. My Thyroid was fine prior to SCT. My biggest concern is that I still do not feel I can work yet. Everyone tells me not to rush that. I did talk to my pharmacist, about the pain and fatigue that will not let up. She did tell me that both are side effects of the Pomalyst, as well as MM. My husband and I recieved both of the Covid Vaccines, late April/ May, in between all of my regular re-vaccinations. I had no serious side effects from either, except a sore arm with both, and slight fever for 1 day, and swollen lymph glands, after second. I stopped my Pomalyst for 5 weeks, per my hematologist recommendations (1 week before 1st, through 1 week after second), so hopefully I have some protection. Our Covid numbers have sky rocketed over the last 3 weeks. So I am back on lockdown, for now. And very sad about it all, too. We did have the children and grandchildren here for Easter. That was such a great day! And I did see the children and grands much more, while the pandemic had calmed down. Our "puppy", Bear, will be a year old on the 16th! He weighs about 110 pounds now! He is so swee, and keeps us both entertained, and busy! Sorry for the long post! I will try to get on here a little more often. Take care and stay safe!

Jump to this post

Wow, Lisa! If I could still do cartwheels and backflips without suffering serious bodily injuries, I’d be celebrating your joy!! 😍 I’m so happy you’ve responded that well to the treatments. It’s fantastic news and you’re right, those positive milestones are just the nudge to uplift the spirts enough to be more tolerant to the tiredness and other little annoyances.

I can so relate to not wanting to rock the boat with changing med doses! I’m going through the same thing right now with a tacrolimus taper. I’ve been in this wonderful holding pattern of bliss for almost a year. I don’t want to taper off!! LOL The last time ‘we’ tried, I ended up with some pretty big GvHD issues. Took a year to get over those. So now, I’m starting that same taper and trying to be optimist!! If I can get off the tacro, then I can stop all 5 of the other meds that I have to take because of it.
Though, yesterday, at the 2 week point with taper, I started feeling a familiar jolt of pain in my wrist tendons. That’s where this whole misadventure started about 2 years ago. Finger’s crossed it doesn’t progress like last time. I’m not going to give it much thought until it actually happens. Though of course it’s in the back of my mind.

I know you’re going through that same level of anxiety with reducing your meds which have worked fabulously this past year for you. However, if you can get the dosage reduced without any issues, maybe it will bring some relief from the tiredness you’d experiencing. So it’s worth a shot. You’re being monitored very closely and obviously have a great transplant team. They’re watching your back. So if you do have issues, they’ll be on it and adjust accordingly. I let my team worry about this stuff. We have enough other things on our plates to keep our brains fed, right? Haha.

Ugh, the Covid surge again is troublesome and frustrating. Just when life was getting a little more back to normal with your kids and grandkids getting to visit. But oh my gosh…little Bear is hardly little!! Sounds like a huge furball of love!! I miss having a dog in the house!! But it’s not time yet. Fortunately we have 4 young families in our neigh hood and each one has gotten a puppy in the past few months!! So you can imagine there are a lot of belly rubs given anytime we walk past.

It was great to hear from you! Drop by any time. Always fun to chat. ☺️

REPLY
@loribmt

So, I kicked off this discussion group with my story. Now I'd like to hear from others who have had a bone marrow transplant; autologous or allogenic stem cell transplant or been the a caregiver to someone who had BMT or SCT.

@kjjjrader @tedwueste @rwalkie @tmvanla @waveg @duttasujata @edb1123 @mjpm2406 @buckyc71 @javajude @jeaniecm @evett @ckeys @jeremy88 @chickey @mjrussell2 @motherboard @lel @gorjis1 @zellheff @auntieoakley @craigkopcho @bobby2014 @lakegirl409 will you join me? Pull up a chair and share your BMT or SCT story.

Here are some questions to consider as you write your story:
– Focus on yourself and how you felt, what you did, who helped you?
– What led to your needing a bone marrow or stem cell transplant?
– What was recovery like?
– How is life now since your transplant?

Looking forward to some great discussions! Lori.

Jump to this post

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.

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

What a dramatic story! Thank you for sharing it.

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

Gwen, thank you for sharing your powerful story! You've faced some incredible obstacles…another walking miracle. It always amazes me how resilient our bodies are and what we can survive. When you said you felt the sense of peace when arriving at St Mary's at Mayo~Rochester, it rang true for me as well, though I was at the main clinic. Mayo is truly a place of hope and I'm so very glad you were able to find your diagnosis and treatment there.

As a side note, my husband and I spent a lot of our free time walking along Cascade Creek. It was so lovely and calming. Nature is healing.

You were so fortunate to be able to use your own cells for the transplant. That really reduces your recovery time and you don't have to worry about any of the graft vs host issues. How are you feeling physically? Have you regained some of the 45 pounds you lost? How's your energy level?

REPLY
@loribmt

Gwen, thank you for sharing your powerful story! You've faced some incredible obstacles…another walking miracle. It always amazes me how resilient our bodies are and what we can survive. When you said you felt the sense of peace when arriving at St Mary's at Mayo~Rochester, it rang true for me as well, though I was at the main clinic. Mayo is truly a place of hope and I'm so very glad you were able to find your diagnosis and treatment there.

As a side note, my husband and I spent a lot of our free time walking along Cascade Creek. It was so lovely and calming. Nature is healing.

You were so fortunate to be able to use your own cells for the transplant. That really reduces your recovery time and you don't have to worry about any of the graft vs host issues. How are you feeling physically? Have you regained some of the 45 pounds you lost? How's your energy level?

Jump to this post

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!

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