Marty’s Story

Site created on September 24, 2019

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

Marty’s story began in September of 2017. After months of knee pain and doctors visits,  radiologists discovered some abnormalities in his bone marrow, and he was soon after diagnosed with Primary Myelofibrosis (MF), a rare blood cancer. Although MF can't be treated, it can be cured with an allogenic stem cell transplant. Because bone marrow transplants carry such a large risk, having a match of human leukocyte antigens (HLAs) is critical to the success of the transplant and life afterwards. Fortunately, Marty's sister, Janet, was a perfect HLA match, and she spent the week of September 30th donating her stem cells. Two years after diagnosis, Marty will begin his transplant process at Mayo Clinic in Rochester on October 7, 2019.  




While Myelofibrosis is a complicated disease, Mayo Clinic has provided a good amount of information about Marty’s condition.
https://www.mayoclinic.org/diseases-conditions/myelofibrosis/symptoms-causes/syc-20355057


Newest Update

Journal entry by Karen Brennan

Hello all,

Since many of you have inquired as to Marty's health here is an update.  I apologize for not posting sooner but life has been busy, crazy and everything in between.

Today, August 15, 2020, is day +305, ten months since Marty's stem cell transplant.  Marty is doing ok, and I would go as far as to say we have seen encouraging improvements over the past several weeks. Although he is not where we thought he would be, we are seeing slow and steady improvement.  Some things have remained the same: blood counts still remain quite low:  neutrophils, leukocytes, hemoglobin, and platelets. Marty's skin has become thin and susceptible to bruising and breakage as a result of the steroids he has been on since late March (to treat GVHD) but we are hoping this improves as he is gradually weaned off the steroids. Due to the very low white blood cell counts and the risk of  Covid 19, we continue to avoid outside contact and take necessary precautions, hopefully alleviating the risk.  Marty's low blood counts and Covid 19 remain our biggest concerns so masks remain part of our daily attire. Marty continues to have appointments and receive hemoglobin and/or platelets on Tuesdays at Gundersen and Fridays at Mayo which has been our routine since being discharged from Mayo Methodist on May 17, 2020. 

Recently, we did need  to  go back to Mayo Methodist Hospital for an unexpected three day visit.  Since October, 2019 Marty has had a HIckman catheter (port) placed on the right side of his chest. This catheter line provides long term access to Marty's veins and is used for blood draws, intravenous medications, and blood transfusions.  The catheter area is examined at every appointment with dressing changes performed once a week by hospital staff. At our regular Friday visit on July 31, after examination of the catheter site, members of the transplant team discussed with us the possibility of removing the catheter since it had been there for so long and inserting a picc line in Marty's arm as an alternative to the chest catheter. Because the catheter had been there for over 9 months coupled with  Marty's skin being  thin, the transplant team suggested  we consider the removal of the catheter some time in the future.  At that appointment on Friday, the nurse practitioner decided to take a culture of the skin at the catheter site and also decided to send Marty to the blood lab to have tests run on the two lumen lines in the catheter.  We went on with the remainder of our appointments, received platelets, and returned home late in the afternoon.  Fast forward to 2:30 a.m. Saturday morning when we were awakened by a phone call from a member of the transplant team informing us the catheter lines tested positive for a blood bacteria and/or possible staph infection.  We were told to go back to sleep, get some rest, and wait to be contacted again after the remainder of the tests were cultured. We were also told Marty would need to come  back to Rochester for admittance to the hospital.  Of course, we were unable to sleep. I did several loads of laundry, loaded the dishwasher, watered outside and inside plants and packed two suitcases. We again spoke to Mayo Saturday morning and were told they had a room ready for us.  Upon arrival at Mayo Methodist intravenous antibiotics were started, another Covid 19 test was administered, and we met with members of the transplant team to discuss immediate removal of the Hickman catheter. Because Marty is always low on platelets, platelet transfusions were begun and continued throughout Saturday night to ensure sufficient platelets in preparation for the catheter removal.  On Sunday morning, after blood tests indicated sufficient platelets for surgery, the surgeon removed the catheter.  Antibiotics continued and a picc line was inserted into Marty's arm on Monday.  Due to the blood bacteria/staph infection Marty had to receive antibiotics intravenously for 10 days, twice a day, twelve hours apart. We had three options available for the antibiotic infusion: 1) stay in Rochester as an outpatient receiving the antibiotics twice a day, for approximately 3 hours each time, at Mayo Methodist;😏 2) travel to Gundersen twice a day, 7:00 am and 7:00 pm, for an approximate 3 hour stay each time for each infusion; 🤔or 3) Karen receives training to administer the antibiotics intravenously in the comfort of our home😳.  I'm sure you can guess which option we went with as we were released from Mayo Methodist on Monday evening . Needless to say, we finished the final at-home antibiotic transfusion last Sunday.  And it went well. And I didn't kill him with an air bubble in the line. Like you would see on tv.🙂

Since returning home from that hospital stay, Marty's catheter site has begun to heal and he has adjusted to the picc line.  Our focus remains (as it has since May) on gaining weight and strength, improving leg strength and alleviating the dropped foot issue which developed in May due to weakened muscles/compressed nerve in his right leg.  Marty and I remain focused on his health and healing.  In the past few months we have had some disheartening and discouraging moments but we always seem to get through those. Since May and up until a few weeks ago Marty was never left alone for fear he would fall, never out of our sight.  Over the past several weeks we have been encouraged by the improvements we are seeing in Marty and his resilience.  He no longer needs a walker.  We recently gave him his driving privileges back.😊 He is slowly regaining his independence.  Keep praying, sending good thoughts and vibes.  We appreciate, and are so thankful for, these expressions of support and for everyone's care and concern.

There is a quote I would like to share with you.  I have passed by this message, at first daily and then weekly, since October, at Mayo Methodist in the Eisenberg Building. It is attributed to John Wesley, preacher and founder of Methodism and is from the 1700s. At the bottom of this quote it states "it is the taproot of Rochester Methodist Hospital." I find it a fitting and useful message in today's environment:

"Do all the good you can

in all the ways you can, 

to all the souls you can,

in every place you can,

at all the times you can, 

with all the zeal you can,

as long as you ever can. 

Marty, myself, and our family have experienced so much good over the past ten months. From random text messages from friends and family telling me they are going to the store and asking if we need anything,  to phone calls and text messages inquiring about Marty, to my sisters checking in on me and running errands, to my brother, Dennis, mowing our lawn all summer and to the neighbors who mow and look out for us. We are and always will be eternally grateful for all the good and kindness shown us.  Thank you from the bottom of our hearts.

I have a couple of "do all the good you can" recent experiences with Mayo employees that I would like to share:

1)  Parking attendant.  When we arrived at Mayo Methodist patient drop-off area on that Saturday two weeks ago to be admitted to the hospital, I must admit we were both tired and discouraged. I think the parking attendant saw it in our faces.  The patient drop-off area is busy seven days a week. Typically,  these attendants help the patient from their vehicle and then the driver (me) needs to get our vehicle moved to a parking spot or ramp as quickly as possible to allow space for the next vehicle coming in. Vehicles are not allowed to park there.  On this particular Saturday the attendant told me to leave my car, take Marty to his room, get him settled and then I could come back down and move my car.  He told me to take my time. I was so appreciative...in the 10 months I've been dropping Marty off there that has never happened.

2) Nurse practitioner.  This particular nurse practitioner called us on that Saturday morning to tell us we needed to come to back to Rochester and be admitted to the hospital. She could tell by our voices we were discouraged and disheartened. She visited Marty and myself on Saturday upon admission. On Sunday morning she arrived at Marty's hospital room with a donut her son had picked out for Marty. Later that morning this same nurse practitioner held Marty's hand the entire time the surgeon played tug of war with the Hickman catheter which had grown scar tissue and embedded itself nicely in his chest.

3) Nurse.  Visiting hours for the one visitor allowed per patient at Mayo Methodist are from 8:00 a.m. to 6 p.m. daily.  They strictly adhere to that rule.  On Sunday evening, this particular nurse came to Marty's room around 8:30 p.m.  I was still there.  I began to apologize for being there more than two hours after visiting hours were over.  This nurse looked at Marty and said "I don't see anyone in this room but you"  That's all she said and left the room.

These three individuals went out of their way to make things easier for us and to make the situation a bit more bearable.  Doing good in all the ways they can.

I also just want to mention how great our kids and their spouses have been to us.  Devin has been tending to business when we are there and when we can't be there.  Alison moved home May 8 and stayed with us until two weeks ago when she needed to return to Dubuque to prepare for the upcoming school year.  She took care of her dad and mom and everything else that needed to be done. Colin spent as much time as he could with us taking care of my "honey-do" list every time he was home.  And baby Rowan, she makes us smile and laugh and forget about our worries for a little while. We are getting through this together and we couldn't do this without them. 

Again, thank you all for your prayers, positive messages, good thoughts, and good vibes.  We know we are not alone in this journey.  I am reminded, daily, we always have something to be thankful for.

Love,

Karen

 

 

 

 

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