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2/6/2017 Latest post:
In August of 2015 after multiple tests I was diagnosed with Alpha 1 Antitripson Deficiency. This can affect your lungs and/or liver. At this point and time only my liver has been impacted resulting in me having Cirrhosis.
In turn my GI doctor referred me to Johns Hopkins transplant team to begin the liver transplant process. In November of 2015 we had our first meeting with the transplant team, met with several doctors and a social worker, and had more tests done. The transplants are done based off of a MELD score which comprises of multiple blood tests. The MELD scores run 6-40, six being the least serious and 40 being the most serious. They also base their decisions on the patients overall health. Meaning your MELD score can be low but you are still very very sick. My MELD score at the time was 7 and I was placed on the transplant list. I needed to lose weight and get blood work done every 3 months so they could monitor my MELD score.
My MELD score went up to 14 in January but didn't change in 9 months so they took me off the transplant list but continued to monitor me.
I started noticing my feet and ankles were swollen. I went to my family Dr and he placed me on Lasiks for water retention. This worked well until September and the swelling increased. He increased the dosage and it worked until the end of October and the swelling then went into my legs as well. He increased my dosage in November and began monitoring my kidneys to insure they weren't being affected by the medication.
By the middle of November I was beginning to be uncomfortable because of all the water retention and weight gain from that and I was extremely tired. By Thanksgiving I was needing help to do normal things at home and having trouble going up and down the stairs and was working from home quite often. I was beginning to look more and more pregnant from all the water retention.
The beginning of December it was time for me to have bloodwork done for the updated MELD score, the results came back as 18. Still was uncomfortable but had good days and bad days but was working from home more regularly. On December 26th at 1:30 am Kent had to take me to the ER because I started getting shooting pains where my liver is. They gave me Lasiks through the IV and pain medication and sent me home around 6 am with instructions of following up with my family Dr. I scheduled an appointment for the following week due to the Holidays.
On December 29th the hospital called back and told me to follow up with my GI Dr for a possible paracentesis (belly tap, where they manually drain the fluid from your belly.). The hospital called and scheduled the appointment for December 30th. Kent took me to the appointment and as soon as the Dr came into the office she took one look at me and said you don't look good I said I don't feel good. She said we are admitting you right now. Go to the ER and I'm calling the Dr that's in charge. We went home and got a bag and went back to the ER and was admitted. From the middle of November until December 30th I had gained over 30 pounds in fluid...by this time I was looking 9 months pregnant.
We weren't expecting this to progress as quickly as it has. The beginning of December my blood work showed my MELD score as 18. I was admitted to the hospital on December 30th with my MELD score being a 19 and it only increased while I was in the hospital to 23. I'm now at 24 and back on the transplant list at #3.