Jump to content

New Here


jlewis229

Recommended Posts

  • Members
jlewis229

I lost my brother 51 days ago on March 14th, 2012 at the age of 24. This has been the most emotionally exhausting thing i have ever been through. I am going to give you some details about how this all came about.

My brother Brandon born 12/24/1987 is the 2nd born of 3 boys. I am the oldest, age 26. He was born with non functioning kidneys and had a transplant(donated from our father) at 18 months old. He did great until he was about 13 and then he started having problems with it rejecting. He was put on the list & I was tested but was not a match and this went on for a few years while he was on peritoneal dialysis(dialysis that you can do at home with a tube going into the peritoneal cavity in the stomach)

He was given a medication(methatrexate) for extreme pain that he was having in his legs and joints, the drug is used for cancer patients and i believe some type of arthritis. Well this drug caused him to get blisters all over the inside of his body,including his colon which ruptured and required a colostomy and a feeding tube and caused severe scarring of the peritoneal cavity causing him to go on Hemo Dialysis(Blood). He got septic because of the infection in his body so he was put in a drug induced coma for 15 days and thankfully he recovered and learned to walk again after being in the hospital for a couple months.

He was diagnosed with NFD/NSF which is caused by Gadolinium (MRI Contrast). Patients that are in renal failure should not have this type of MRI contrast because it causes the NSF/NFD which causes severe pain, burning senstaion, stiffening of the joints and muscles in the body. This disease caused him to have to use a wheel chair & walker from age about 17 off and on and then he was unable to drive at about age 18. This disease made him miserable. He was on very high doses of pain meds daily.

He stayed on hemo dialysis for about 8 years. Their were multiple visits and hospital stays for weeks and months at a time throughout the next few years.

On February 8th 2012 He was supposed to go to dialysis, I got up and he was not feeling well at all when i tried to get him ready. I put my hands under his arms to help slide him up in bed and noticed his body was on fire, I checked his temp and he was running a fever of 103.4. I called the ambulance to take him to the hospital. Once we arrived at the hospital the Dr's and nurses were very concerned with his well being and started doing blood cultures, and various blood tests. Finally they got one of his Dr's from his Nephrologist (kidney) group and they admitted him into ICU. He had also been having problems vomiting for a couple months now and the Dr's were unable to figure out what the problem was.

We found out later that night that his liver was not doing well and could possibly fail. He had cirrhosis due to getting Hep C from a blood transfusion as a baby. Within a couple days the blood cultures had grown 3 different bacteria's. They started aggressive treatment with antibiotics, but it wasn't working well. He went septic(when 2 or more organs shut down) so they put him on a ventilator and put him on fentanyl and propofol and put him into a twilight so that he could rest. He was on the ventilator for about a week and the meds were working and the infections were clearing up so they brought him out and took him off of the ventilator.

The first day was great, we were able to talk to him(and know he could hear us) and just see his eyes open and know that he was going to be OK, his liver function was improving! The next day he was not doing so well and was having problems breathing. And he had began throwing up again(even having a tube suctioning it out of him). They told us that he had aspirated(we believe it was after they asked us to leave the room and we came back 30 min. later and he was still on his back and had not been cleaned up!!!) So since he aspirated, he got pneumonia which caused him to go septic again, and he had to go back on the ventilator. This time his liver had really had it. None of us really go to talk to him because this happened so fast.

After speaking with Dr's daily, his body was not getting any better and they found a total blockage in his small intestines. He was too sick to operate, his liver was on the verge of complete failure, they had been giving him blood, platelets, and plasma but it just wasn't enough. We had to make some decisions as to whether we wanted him to have a tracheotomy because his 15 days was coming up on the ventilator and he had to come off because of the damage the ventilator tube can do.

We decided that as long as his liver didn't completely shut down we wanted him to have a tracheotomy because he would have a chance to get better. We soon found out that would not happen, his liver failed the next day and their was no possibility of a transplant or it healing enough to get him well enough to get a transplant. We then had to make a decision as to when to take him off of the ventilator. We didn't want to prolong his suffering, we had his vent removed on March 13th. All of our family was there for us pretty much the entire time. Myself, My Mom and Her Fiance and my Grandparents all took turns staying a day or two and then the next shift would come, this went on for the entire stay.

Once we had the ventilator removed, My Mom, her Fiance, Myself and my Grandparents stayed with him, holding his hand, talking to him, telling him how much we loved him, until the next morning at 9:12am when he left us.

We never thought it would end this way,we never had a chance to talk about how he would want things. We didn't get to actually converse with him, to hear him say "I love you too". I know a lot of people don't get that chance, I guess we just thought we would. He was my life for the last two & a half years that I took care of him and now I am completely lost. I have such a huge void in my life and I just hate it. I want him back here so much. Their are so many things he still wanted to do and I wanted to do with him. I feel like it wasn't his time, that he should still be here. We as a family are lost without him, he was the center of this family for our entire lives because he always required so much attention and now we just don't know what to do with ourselves. I cry so often, and I just wish I could touch him one more time. Tell him how special he was and how much I loved him and how much I enjoyed being able to care for him. It just doesn't seem fair. He was such an amazing person, He never complained about anything that had happened to him. He never complained about how much pain he was in, or what he couldn't do because of what was wrong with him. He is the most amazing person I have ever met, and hearing that and how he was an inspiration from people seems to help me somewhat, to know that he had such a purpose in this life.

Thank you for listening to me and reading his story. I look forward to speaking with many of you and hopefully helping each other heal.

Johnathan

PS- I am attaching a picture of him below

post-298656-0-73997400-1336116241_thumb.

Link to comment
Share on other sites

  • Members
ModKonnie

BrotherinPain,

You sound like an amazing brother for an amazing brother. How wonderful the support has been for Brandon. I am so very sorry to hear about his struggles and your loss. I am glad to know there is encouragement and support in your family.

Take each day just a little at time. Feel free to continue to cry, rant, rage, vent, reflect, and anything else you may feel. Your grief is pretty new, and it's okay to be struggling with it.

I remember when my brother died, it was a difficult time for us siblings. We didn't know what were were supposed to do or how to act or what to think. People expected us to "get over it" immediately, but of course, we didn't. We learned by talking and sharing with family and friends that things do eventually get better.

We will be here for you,

ModKonnie

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.

×
×
  • Create New...

Important Information

This site uses cookies We have placed cookies on your device to help make this website better. You can adjust your cookie settings, otherwise we'll assume you're okay to continue. and uses these terms of services Terms of Use.