the long journey

Jamal on his medical journey:

 

"Four years ago I started a Pre-Broadway show or at least that was the trajectory of the shows Fortuitous future. Midway through I noticed changes within my body. At the end the changes were not just internal but now external and affecting my appearance...... Fast forward to June 2, 2017. I had my first biopsy to then discover I somehow acquired a rare Chronic Disease called “FSGS,” (Focal segmental glomerulosclerosis) scar tissue develops on the parts of the kidneys that filter waste from the blood.

 

Fast forward to two years after I completed a contract, to my body, in a lack of better words shutting down on me. My kidneys were dying and I needed a bit of help. I went into surgery and had a catheter for “Peritoneal dialysis” (a way to remove waste products from your blood when your kidneys can't adequately do the job any longer, i.e. when you pee) inserted into my lower abdomen. Before it started working my weight dropped 60 Ibs and at that point I lost a good amount of body muscle and fat. 

 

Waiting for a donor has been a tricky one, with false promises and high hopes. My good friend and tour body and Cello Extraordinare Sam Quiggins soon stepped up to the plate! He offered to give me one of his kidneys!

 

Tomorrow December 16, 2020 @ 5:00 a.m. in the morning I’ll make my way to Columbia Presbyterian. I pray all goes well and I have faith in the lord that it will. Life is tricky with unexpected circumstances at every turn. Stay alert and listen to your body, sometimes it’s trying to clue you in on a bigger picture."

Jamal recounts what life has been like living with Peritoneal Dialysis:

“When I started dialysis I had to pump my stomach with 2000 ML of dextrose solution twice a day. It is what filtrates toxins as your kidneys regular function would be as you urinate. As I continued to get worse the amount I had to fill my stomach with went up to 3000ML. I would hold one over night for 8 hours, then switch to the next bag at 4 Am. The bags during the day had to stay in me for 3 hours at a time. It was a total of 4 bags a day in the end. I tried to do these all in the morning so I could live out some kind of dance and career normalcy. I would finish around 1pm. If I had to do something earlier I’d have to delay a treatment, go about my business then rush back home to make sure I carried out the rest of the required treatments for the day. It became routine and I did this for two years relentlessly. Today I can say I will not miss dialysis one bit but am grateful it is what kept me alive while my kidneys completely shut down.”

After his surgery on December 16th, doctors and nurses felt that everything was stable and that the new kidney was strong. Unfortunately, only days later Jamal would feel complications and understand that the kidney did not take. 

“So things didn’t go well and I am leaving the hospital at some point...I really don’t know with no kidney. This is what happened, I felt fine and then on Sunday my stomach started killing me and hardened and I apparently got a gastrointestinal infection through the surgery not only did I get that but the kidney itself committed suicide and clotted itself and now three surgeries later I am left with no kidney.

I don’t think I have ever been in this much pain in my life ,but 10 days later I’m feeling better. My stomach doesn’t hurt as much but my body has retained water retention so I can’t even get out of bed because I’m so heavy.

I am now doing a new form of dialysis and I think that it will help with the water retention. I am now in search of another B positive kidney and praying the surgery goes much better and happens a lot sooner as I’ve been waiting for four years."

We are hoping and praying that Jamal finds his match soon and that he can begin to heal and resume a healthier life - one that he is used to pre-diagnosis. He is incredibly talented and such a kind-hearted spirit. He deserves to feel well each and every day and free from the pain and agony of this terrible disease. 

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