Medical Incredible

There has been a lot going on these past few weeks and I wanted to give an update on what has been going on medically. I had an appointment with Dr. Carrasco a few weeks ago, he has decided to stop my Cell-Cept medication and switched me to Azathioprine/Imuran because the Cell-Cept wasn't working. He had not wanted to use Azathioprine before because it is a level 1 carcinogen, and am already at a very high risk of cancer and is much more immunosuppressive than the Cell-Cept. but the doctors are monitoring me closely. He is trying to wean me off my prednisone, and transition me to an adult rheumatologist at an academic center where all of the specialist can be in one place, but with me being so medically complicated not a lot of doctors are willing to take me on so I haven't had one willing to see and treat me. He was also very concerned with my swallowing getting worse despite using thickener in my drinks and being on a mechanical soft diet. After meeting with my GI doctor the day after my appointment with Dr. C my GI doctor said after looking at my swallow study images and talking with a very panic ridden speech therapist that I really need to have a PEG/feeding tube placed for 100% of nutrition and only occasionally have milkshakes, ice cream, and pudding. I was not hat surprised and am handling it well. I feel as though that after I have it put in it may be harder. I was supposed to have it put in this week but it will probably have to be delayed due to my next medical adventure.


On Tuesday night I noticed a mosquito on my leg, and flung it off but it still bit me. It itched a tad but I didn't think much of it. Wednesday night I noticed that same leg was red and irritated around the ankle. I thought the striations from all the swelling were just inflamed. I put some cortisone and other prescription creams I have for inflammation. When I woke up Thursday I thought it looked maybe a tad better and continued applying the Rx creams. I noticed that leg and foot was more swollen, but that sometimes can happen when my feet and ankles swell from my disease. One will be more swollen than the other. It started to get more uncomfortable but I didn't want to panic. I showed it to my grandmother and she didn't think it looked better. But she didn't want to argue with me, and me being 21 I just want to be independent and take care of it myself. But that afternoon the swelling, itching, and burning pain was more intense to where my leg, ankle, and foot were going to burst. When  I went to the bathroom to put more cream on my leg I was horrified, it was bright red with streaks, and I told my grandmother I needed to go to the doctor. I left a message with my  primary doctor, and my dermatologist. When I talked to my primary care physician's nurse and she said I most likely needed to be on IV antibiotics, and to go to the ER. I went, but had to wait awhile. Because of my immunosuppression I usually am triaged right away. The redness was getting worse, and rising up my leg before our eyes. It took the doctor less then 3 minutes to say I needed to be admitted. They had some trouble accessing my port-o-cath and then when it was accessed getting blood. They said I had Cellulitis which is commonly caused by the strep bacteria or staph, and prescribed IV antibiotics. The admitting doctor says patients usually require 48 hours of antibiotic, but for me with my history possibly a bit longer. I was given IV phenegrin, for nausea from the antibiotics and pain medicine, which was IV morphine, and IV Benadryl for the itching. Before they started the antibiotics we noticed a red mark on my right heel similar to the ones on my left leg. It wasn't from shoes because I can't wear anything but flip-flops. I was running a low grade fever when I arrived, and with the difficulties they were having with my port they used Altoplase to make sure there wasn't the tiniest clot, and the medicine worked. The IV antibiotics were every 8 hours and when my grandmother came in the next morning she was shocked about how better it looked after just 3 doses/12 hours on the antibiotics. When the floor doctor came in, it was a different one than the admitting doctor, he said that as far as Cellulitis it wasn't that bed, when we told him about what it looked like the day before, and my history he said that he was surprised how well I responded, and said I could go home that day. He said theoretically it could of been caused by the mosquito bite. Everyone was so surprised, and the nurses and doctors all believe that I responded so well because I had been off of the Cell-Cept for about 6 days and had my first dose of Azathioprine/Imuran on Thursday morning, so my immune system wasn't as low than it would of been on either drug.


It is by grace of God that I got this problem when I did, and that I responded so positively well to the medication. I still have to be on oral antibiotics for 7 days (2 pills 3x a day), but with each dose I see improvement. Palm 30:2 says, "O Lord my God I cried unto thee, and thou hast healed me." This verse really describes this past ER and hospital visit, because I called out to God to heal me, and my friends and family did as well. This experience this past week is just one of many of the Lord's blessings upon me and my family, and another example of His healing hands.




Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta