Melanie ’s Story

Site created on February 16, 2022

My name is Melanie and I’m here to tell you about my journey and why I am in need of your help.  I have IgA nephropathy, a kidney disease.  A kidney transplant is my only hope to live again.  For the past two years dialysis has kept me alive.   Three times a week I drive myself to Davita for treatment.  Dialysis is a 
temporary solution while waiting for a kidney.  I’m hoping and praying to find a living donor.  My blood type is A negative so I would need to receive a kidney 
from someone that has an A blood type or an O blood type.  Even if your blood type doesn’t match there’s still a program where donors are swapped. I will get into that later in my story.

Please share!  Share to your Facebook groups and to friends even if they may not be the one who would donate, they can spread my need for a gift of life.
www.kidney4mel.org goes directly back to this CaringBridge site.  The transplant center contact information is in a journal entry here posted February 17th as well as at the end of my story.. 

For me dialysis has been hell.  I never thought at this stage in my life I would be hooked to a machine for 3 1/2 hours a day, 3 days a week to stay alive.  Every time the machine alarms because maybe I sneezed or I talked too loud it just adds more time to how long you I have to sit there until somebody comes and clears the alarm.  Dialysis leaves me tired and weak.  Some days it causes muscle cramping that has reduced me to tears because it’s so painful.  Being nauseated with a headache is also an issue a lot.  Imagine NEVER feeling good every single day.  It wears on your physical and mental health.  I have so much I want to do.  So much living left in me yet my body is shutting down.  I don’t know how much longer I can handle the demands dialysis puts on my body.  Living alone leaves me to try and push through as best I can.  Some days I get home from dialysis I’m to tired to get anything to eat so I just go to bed.  Even the smallest of tasks can feel like I’m climbing a mountain.  I use a grocery delivery service because I’m too tired and don’t have the energy to grocery shop on my own.  I rarely cook for the 
same reasons.  Blood pressure drops have been a big problem for me and occasionally when I come home my blood pressure will drop so low that I cannot 
even speak because I am so out of breath. When this   happens the heart works extra hard trying to keep the blood pumped throughout the body. I’ve been in 
the kitchen preparing my dogs food after dialysis and had to lay down on the kitchen floor to keep from passing out because it dropped so suddenly.  These 
are all problems that are a result of dialysis trying to do what my kidneys aren’t.  The purpose  of our kidneys is to remove waste products out of our blood and keep our levels of phosphorus, potassium and many other things in check.  Because damaged kidneys can’t do that, I have to watch what I eat.  Choices  become very limited. High potassium could mean a heart attack, chest pain and a whole host of issues.  I dream of the day when I can eat and drink what I want.  My 
dialysis port is in the upper right side of my chest. This cannot get wet for fear of infection so I have not had the joy of going in water for nearly 2 years.  I 
look forward to the day when I can take a bath again or jump into the ocean or a  pool.

I do feel very lonely much of the time.  Those that know me know that I rarely or don’t ever ask for help. I will usually fight and find a way to do it on my own 
or accomplish what it is that I need. I can’t do that this time.  I need a loving, compassionate and giving person to step forward and try to be a match for me. I do not want to die and I do not  want to continue suffering daily for another 4 1/2 years on dialysis. The average wait time for me with my blood type on the national donor list is 6 1/2 years. I cannot handle being on dialysis and  it’s doing to me for that long.  A living donor gives me the longest chance at life once the transplant is complete versus one from someone that has passed away.  Don’t get me wrong I would be grateful for either, however a living donor would give me the best  scenario  for a long life.

Another option for somebody that would be willing, whose blood type isn’t a match to me, would be something that’s called “donor swap”.  Hennepin County      Medical Center has had many successful donor surgeries with this method. What happens is that they match one of my potential donors to someone else and then the potential donors for that other person would be matched to me. It’s really amazing how they do everything simultaneously with everyone in the 
operating room at the same time at each location.  They literally are on video conference with each other to ensure everything is fair and that both surgeries
are underway at the same time.  This option gives me an even bigger window to find a donor because now things are branching out further. This would be a
huge sacrifice on someone’s part to do this for me because I would not be getting their kidney, somebody else would.  But then I would benefit from a kidney
of somebody else that I don’t know.  Jenny Bodner is the transplant donor coordinator at HCMC.  She is more than happy to talk to anyone that has questions  and explain the process to them. Everything is confidential and nothing is shared with me unless the potential donor chooses to do that. If you’ve offered me
a kidney in the past, which many of you have and you have been tested and we are not compatible please consider and really think about if you would  be willing  to do a donor swap. I know that being a donor is going to be a huge sacrifice on someone’s part.  I want that person to know that I would cherish and take care    of this gift of life if I’m lucky enough to have the opportunity.  Thank you for visiting my page and reading my story.

PLEASE CONSIDER A LIVING DONATION OR A DONOR SWAP  (https://www.caringbridge.org/visit/melaniebrown4/journal/view/id/620e89a26f88d6721a8d1c62)Contact Information:

Hennepin Healthcare Transplant Clinic

telephone 612-873-7708

email: jennifer.bodner@hcmed.org

https://unos.org/transplant/living-donation/





Newest Update

January 7, 2023

Journal entry by Melanie Brown —

I was hoping for better things to come my way in 2023 however this start isn’t what I had in mind. My dialysis catheter started becoming a problem again last Friday. Saw Deedee my vascular nurse on Tuesday for an instill to sit 24 hours. They never work and this one didn’t either so the dialysis run continually alarmed on Wednesday mainly the arterial line. Because of the snowstorm we were in the midst of I opted to not run down to the hospital for a preop and have surgery during the storm. I was able to get my blood cleaned on Wednesday so I knew I’d be OK until surgery this Friday. Had my Covid test and preop physical on Thursday and yesterday, Friday I drove myself down to the hospital since I couldn’t find a ride. Surgery was scheduled for 9:30 AM but they got started a bit later than that. I have had all of these surgeries but one done under general anesthesia. The one that was not done under general was just sedation and I woke up in the middle of the procedure screaming in pain. When the nurse in preop said to me OK you’ll be having your procedure today under sedation I said no I won’t. I’ll be having it under general anesthesia or I won’t be having it. I will never be in the position again to go through what I went through before with the pain. It wasn’t a problem and the anesthesiologist wholeheartedly agreed that general anesthesia was the way to go. I woke up from surgery to them removing the breathing tube so that was fun! Because I don’t have anyone to stay with me at home I always stay at least one night in the hospital when normally it may be an outpatient procedure for most.

I stayed in postop until around 1 o’clock and was taken to dialysis since Friday is one of my days to dialyze. Within 60 seconds of being hooked up to the machine the arterial line would not pull so they had to immediately reverse the lines. Not a good start. The entire 3 1/2 hour run the machine continuously alarmed between the venous line and the arterial line. This has never happened with a brand new catheter. The flow rate should’ve been 400 and it had to be run at 300 because it would’ve been a continuous alarm otherwise. That flow rate is OK in the short term but will not work long-term. It’s pretty disgusting to come out of surgery and have immediate problems with this catheter. The x-ray in the operating room showed the placement was good and before I was taken to my room I went to get another x-ray to check the placement of the catheter. My doctor that came to my room late last night and looked at it and said the placement looks good. Today I am waiting to see the nephrology  team and find out what the plan is. This catheter isn’t going to work as it is so I’m assuming I’ll be back in surgery again. I don’t know what other option there would be, but maybe the nephrology  team has something up their sleeve. I am in a fair amount of pain and the area where the catheter was placed is extremely swollen and I can’t even really touch it because it’s too painful. If for some reason I cannot successfully get a working catheter I will be throwing in the towel on this one. I refuse to have a fistula port in my arm so the only other option would be hospice. If you can’t dialyze and have your blood cleaned then you aren’t going to last long. I don’t have any new kidney offers for donors so my options are limited.  We will see what today brings.  Yesterday‘s coffee and graham crackers were such a treat being that I was so hungry from not being able to eat. It’s the little things. 😊
Read More of the journal titled "January 7, 2023"
  • Operating room ready.
    Operating room ready.
  • Oh did this hit the spot!
    Oh did this hit the spot!
  • Living the dream.
    Living the dream.
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