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

HAPPY FATHER'S DAY

Today is Father's Day in which we celebrate our fathers, grandfathers, uncles, and any other father figures in our life. In many ways fathers are just as important as mothers. There role is to care for his household, show how to treat wisdom, an many other things. My parents divorced when I was two years old, and I have lived primarily with my grandparents since then, and my grandfather has been more than a grandfather, and really my father. I even find myself calling him Dad or Daddy sometimes. He has done so much more for me than most grandfathers, and even more than some father's, especially since I have gotten sick. He has given up his retirement years to continue working to provide of me, and has taken me all across the country by himself to see physicians to help me. He has taught me valuable life lessons, and given me so much love and support. Even though we fight sometimes, our love always wins. I am just so very blessed to have him as a grandfather, and that God chose me to be his granddaughter. 

Psalm 78:3 says, "Which we have heard and known, and our father's have told us." When I first read this verse I really felt that it fit my grandfather, because many of the the I know and have been told have come from him. I hope that today we are able to celebrate our father's, whether with us or in heaven, or any father figure, as they are truly blessings from the Lord. HAPPY FATHER'S DAY!!!!

NOTE: A LOT OF NEW MEDICAL STUFF HAS HAPPENED THIS PAST WEEK, BUT I WILL  GIVE MORE INFO IN MY NEXT/NEXT WEEKS POST.


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

Eye Not Feeling Well

On Thursday afternoon I woke up from my nap with my eye hurting. At first I didn't think much of it, and thought that something was in my eye. After dinner I went to look at it, and I noticed there was some gunk, and it looked maybe a tad red. I had my grandfather look at it and he said it was blood shot red and said that I either had a corneal abrasion or an infection. My grandmother looked at it and thought I should try to get into the after-hours clinic. Now, I usually don't go to the after-hours clinic, because with my medical stuff being so complicated the doctors there are intimidated by the complexity of my case, or they don't listen to me and my mom or grandmother about what we say is going on (since we have been through the rodeo before), and they say its just a virus, or allergies (which I've had 3 immunologists tell me I don't have) etc., and then I end back at the doctors 2 or 3 days later with walking pneumonia or something more serious. Same thing when I go to the  ER, and they usually admit me. But knowing me, we were afraid if I didn't get seen that night I would wake up with my eye really swollen, and who knows what else.


I called the after-hours clinic and told them what I thought was going on, that I am immunocompromised and that I needed to be seen because I really didn't want to go to the ER. They said they were 100% booked but she said that I should to talk to a nurse. After being on hold for what seemed like forever, I repeated the story to the nurse, and she says you need to be seen, and even though they were booked she was going to speak with the supervising doctor to try and get me in. She came back on the phone a minute or two later and said that I had an appointment at 8:20 that night. My mom came and got me after leaving Del Valley graduation and took me to the after-hours clinic at Austin Regional Clinic Far West. I actually saw a good doctor, who said that it looked like I had a an early eye infection, and put me on an antibiotic eye drop called Vigamox, that is broad spectrum, and with my medical stuff being aggressive and nipping it in the bud is important. He wanted me to start the drops that night, and my grandfather was so kind do go and pick the prescription up at 9 o'clock at night.


I have slept late the past three days, and am on the mend as it takes me longer than most to get over something. I was running a fever on Friday, and spent yesterday resting in bed. I'm glad that I was able to see a good doctor and am recovering. I am so grateful that the Lord is helping me to heal, and that it was nothing more serious. Psalm 91:2 says, "I will say of the Lord, He is my refuge and my fortress: my god; in Him will I trust." This verse is one that I think of when I'm sick, and in other difficult circumstances. It reminds me that God is my strength, and to always trust and rely on Him no matter what. Remembering that helps me to get through difficult circumstances, and gives me peace.




Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta