Brian’s Story

Site created on January 12, 2023

We are so overwhelmed with everyone's support during this challenging time so I decided to start a website to keep people up to date on Brian's status. As many of you know, Brian received his sister's kidney over 6 years ago.  He also has had problems with his red blood cells since he was born which causes him to have low hemoglobin (clumpy red blood cells so difficult for oxygen to travel in his blood causing him to be very tired). The Monday after Thanksgiving, Brian started a new treatment of chemo to help get his red blood cells to produce more normally. This is a series of 5 injections for five days in a row, every month.  After his first round he was extremely tired and weak.  Brian's hemoglobin  has always been low so we just thought this was because of the chemo, hemoglobin, etc.  After a blood transfusion on December 15th, he didn't get the "bump" he normally does and continued to be short of breath, exhausted and weak. We knew there was something else going on so on December 29th he was admitted to the University of Minnesota hospital. 

After a few days,  (they had to wait to do the bronchoscope because of the breathing challenges) and many tests, labs, consults, he was diagnosed with Pneumocystis  Pneumonia (PCP). It's a fungal infection in the lungs and is common in people that have weak immune systems. With his recent chemo and  kidney transplant Brian is immune compromised and this infection found him, ugh! 

Here we are, Day 14, and it's been a bumpy road. The best way to treat PCP is with bactrim. Unfortunately the kidney doesn't like bactrim but the doctors wanted to give it a try and get as many days as they could because it's the best way to treat PCP.  After 7 days the kidney started to show distress. I'm not a doctor and I'm terrible with the medical terms so bare with the basics:-) A long story short, the lungs have a lot of fluid in them because the infection weakened/broke the blood vessels and caused fluid to leak into both lungs. The blood vessels are cured with TIME. TIME is what we keep hearing over and over. This infection takes time! While they are doing many things to get the fluid out, the kidney wants the fluids. It's a fine balance. We are so lucky to be at the University of MN because this is the hospital where Brian got his kidney transplant and where his doctors are located.  He has all the teams working together- Lung,  Nephrologist (Kidney), Hematologist (Blood Disorder) and Infectious Disease to give him the best care possible. The care has been nothing short of amazing. 

So Brian is on a different med that will continue to fight these buggers, and we are praying that his breathing improves. His lungs are very inflamed which is causing him trouble to breathe. He is currently on 75L of oxygen and on a Flow breathing machine during the day and a BiPap at night. Everyday things change. 

What we are hoping for next:

-His Kidneys don't worsen and stay stable-if they do he will go on dialysis, hopefully just a short time, to help filter out potassium, electrolytes, phostates and fluid. 
-He gets rid of the fluid out of his lungs so the blood vessels can heal-pee Brian pee!!
-His breathing starts to improve so he can start to gain strength and move, eat, etc. 


Jack and Michael are doing as well as can be expected-thanks to all of the amazing love and support we are getting from so many friends, family and our community. I tell my kids, "Dad will get through this, it's just going to take time. A long time." We are truly taking it one day at a time because everyday things can change. We are blown away by all the people rooting for him.  I could not do this without our families and friends, especially my sister, Anne and Jason, who lives so close.  She has been my rock in so many ways.  Thank you for everyone that has brought meals, cards, treats, gifts, driven carpools and mostly sending the prayers our way. 


I love receiving all the texts and messages so keep them coming but I will respond with updates through this site. Thank you and we feel all the LOVE!! 


XO
Betsy

Newest Update

Journal entry by Betsy Johnson

Dear Friends and Family,
I felt like writing an entry since it’s been over a year we began Brian’s fight against his pneumonia and other health problems. I get asked multiple times a day, “How are you guys doing?”. It’s a loaded question. Today we are surviving, grieving, moving forward, adjusting to the new different and rearranged life,  making new memories and finding happiness when we can. I feel like that’s the best way to say how we are doing right now. 


What I have learned this past year is that I need to feel all the different feelings-sadness, hope, sorrow, and happiness. I’ve realized that I can feel all these feelings at the same time and be okay. The boys do not like when they see me sad or cry but I tell them that just because I'm sad and crying doesn’t mean I’m not okay. We MUST feel the feels to grieve and move ahead. These tears are tears of the love I have/had for Brian. I miss him every single moment of my days. The difference between then and now is that my grief isn’t as heavy. It’s hard to describe. I am able to breathe a little easier and a little deeper. A year ago, I was living minute by minute not knowing how I was going to survive. Today I know we can live and find happiness.  I’ve learned to live with both feelings of grief and happiness and that we will be okay. 


My grief journey is a process and ever changing. Everyday I find gratitude in the life around me.  I am thankful for so many things and many people. Here are just a few, not in any particular order:


  1. Faith. I would not be where I am today without my strong faith. My faith has helped me find peace and hope in this new rearranged life. 

  2. My Therapist. I’m so lucky to have found support that gives me not only advice but encouragement and acknowledgement that I am doing well and that we will be okay.  

  3. Family. Mic drop. But seriously, I would not be where I am today if it weren’t for my family. The physical and emotional support is ongoing and I thank God everyday for this. 

  4. Friends. I’m so blessed with so many supportive friends in my life. The constant calls, texts, random acts of kindness and happiness. 

  5. School. The boys are blessed to be able to continue their private education and be happy and successful. Super appreciative for all the Memorials for their education fund. They are happy going and coming home from school everyday and that is a blessing. 

  6. My Boys. Jack and Michael are SO brave. They continue to live their father’s legacy and be true to themselves. They are learning to feel the feels too and continue to talk, laugh and cry. They are the reason I am able to move forward. They are keeping busy with hockey and school. We've been doing some traveling which they are loving. We are checking off some buckey list items that have been on our list and were at a stand still for a while. It's important to look forward to things and experience new adventures together.

  7. Prayers-Keep them coming! I feel and believe in the power of prayer. 


The passing of Brian seems like yesterday. I can see myself driving to the hospital everyday for 7 weeks, sitting next to him and holding his hand, listening and absorbing the daily changes to his illness. I remember the last words that we spoke to each other before he was intubated, me: “I love you! Keep fighting!” and Brian, “I love you!” and seeing the brave but scared look in his beautiful blue eyes. 

I remember the different emotions- the highs and lows and hope and defeat. So many people often ask, “How do/did you do it?”. I always say that you don’t know what you’re capable of doing until you have to. I remember just thinking to myself, “Keep going, keep up the faith, one day at a time.” What I do know and what I have found a lot of peace with, is that Brian is no longer suffering. The year before his death he really wasn’t doing well. He would tell me, “I don’t want to live this way,” and was very frustrated with his inability to do certain physical things. He was exhausted all the time. I know Brian didn’t want to leave us-I could see that in his long fight in the hospital but I do know he is right here with us, every step of the way. Both the boys and I feel his presence everyday. Brian sometimes shows us signs-whether it’s a dream, a funny coincidence, a happening, a song, or just the “feeling” of his love and presence. It’s so hard to explain this in words but there is and will always be a huge space in my heart where I can feel him. 


Solo parenting is hard. I never want to complain because I get to be a parent of these amazing humans. The boys are my greatest gift, they are what I live for. There was nothing more Brian loved than being a dad. He was a great dad too. I know the boys miss his presence daily but I am grateful they will always remember what he taught them-sense of humor, hard work, determination, competitiveness, integrity and many other valuable things that they will carry with them forever. It takes a village. I’m learning to use my village more and more everyday. I’m starting to take care of myself and listen to what I need both physically and mentally. I’m learning to say no to things and giving myself alone time. I'm learning to give myself grace. I’m learning to continue to hold my boys to the same high expectations we have always had for them. I’m learning it’s okay to not be okay. I’m pretty darn proud of ourselves; not just for surviving this past year but mostly because we are living and finding happiness in new ways, while also keeping the grief real and close to us. 


The past few days and week I have had a lot of questions and comments about the anniversary of Brian’s passing approaching and this time a year ago, was the long fight in the hospital. I am getting asked how we are celebrating his birthday (Feb 8th) and the date of his passing (13th).  I’ve come to feel that I don’t need to plan anything and whatever we do will be organic. The boys and I do things and honor Brian when we feel like it’s right and authentic. I don’t want to feel the pressure to plan something when I’m already having extra sadness and anxiety of the emotions with the dates approaching. You can’t force these things, at least I can’t. I’m learning to live in the moment and feel in the moment. 


Thank you for your ongoing support and love for us. There isn’t a day that I feel alone. So on Feb. 13th please play the song, THE BEST by Tina Turner and continue to miss, love and honor Brian. 


With Love,

Betsy

Team Johnson





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