View Full Version : Hello, here is my introduction.

01-24-2009, 01:13 PM
Im not sure what to put here, so i'll start with the basics, Im 31 years old, i live in a small town in Utah called Huntington. I am married to a wonderful man. I have a 10 year old daughter and I have had Lupus for 9 years (in august 09). I was not new to what Lupus was when i was diagnosed, my older sister (who is 8 years older than I) was diagnosed 10 years before me. So Lupus has been a part of my life since 1990. Lupus was even more hard to diagnose then, and we were told that it was NOT hereditary, so we were not worried about me having it. A few years ago i sat down and wrote my story down for others so that i would have easy access to it, so here it is:
I know its long, but arent most lupus stories long?????

Let me first tell you that I have been extremly healthy my entire life, other than the occasional cold/flu, I had no other childhood illnesses, I even managed to never get the chickenpox, even after being exposed to them serveral times. I had a VERY good immune system.

My story starts on December 14 2000. I was leaving a friends house after a morning of partying, when I went to put my key in to unlock the door, my head started spinning, and I passed out. A woman found me a few minutes later on the ground, I had soiled myself, and was laying in my own vomit. I got up and in my car, my head was still spinning, the woman that had discovered me went to get my friend. The paramedics had been called, and wanted me to go with them, I was confident that it was just part of a hangover. The paramedics had taken my vitals, and urged me to go to the ER. I fought tooth and nail, but they got me in the ambulance and took me to Cottomwood Hospital (i asked for that hospital becuase my father worked there). Once at the hospital the doctors took several tests and after several hours of tests, they finally came to me and told me that my left lung was that of a 70 year old smoker, and my right looked very healthy, which confused myself and the doctors, and they sent me to have a scope done of my lungs, where they discovered a blood clot in my left lung. They had also found later that there was another clot in my right leg, behind my knee. So here I was at the hospital, with a blood clot in my leg and one in my lung. They kept me for a week, to get my blood thinned, then sent me home with a referal for a doctor, and the reason for the blood clots was due to my birth control pills. Life went on as usaul after that.

On August 22 2001, I went to the hospital for some pain in my back, and was told I had a kidney infection, and was sent home with medicine to clear it up, after a week, I went back, as I was not feeling ANY better, and the kidney infection was still there, and not looking like it was going to clear up. I was admitted to the hospital once again two days before my 24th birthday. On August 24 (my birthday), my sisters kidney doctor, came into my hospital room, and knowing that he delt with the kidneys I thought nothing of it since I was having a serious kindey infection. Dr. Stinson proceded to tell me that after all the tests they ran, that I had Systemic Lupus Erythematosus, or Lupus for short. He had asked me if I knew what it was and I told him I DID and that he was my sisters doctor, once I told him who my sister was he knew that I had known what I was in for. I did not expect what I got though. My sisters Lupus was very mild, so I was really not that concered about actually having Lupus. I had seen my sister live with it for the past ten years, and knew I could live a normal life. I went home somewhat relieved to finally know why I was not feeling tiptop.

October 21, 2001, I was waiting to have lunch with a friend, when I started having tunnel vision only the opposite, instead of being able to see like I was looking through a tunnel, it was as if the tunnel was blocked out and I could only see a rainbow of colors around the blocked out part of the tunnel. I was worried and drove myself to the hospital, telling the bartender to tell my friend where I had gone. I got to the ER and the triage nurse had taken my vitals and the blood pressure machine was showing that my blood pressure was extremly high (219/138). She took my blood pressure manually and still things were odd. She got me back into a room and told me that the DOCTOR would be in to take my blood pressure, now I knew that the doctors dont take your blood pressure unless there is something seriously wrong. As I was waiting for the doctor, everything when downhill, the following is from my medical records:
the patient's mental status suddenly deteriorated. She is initially found to be confused, standing up in the bathroom with her pants down, then shortly thereafter was noted to be grunting with respirations and being somewhat agitated and combative without any verbalization. She started screaming and began spitting up a blooding mucus. She remained combative, nonverbal, confused and agitated and required sedation with Ativan while blood pressure monitoring continued. She remained markedly hypertensive with systolic blood pressure of 180 - 220 and diastolic pressures of 120 - 140. ............ She would not hold still, therefore she is intubated, using rapid sequence intubation technique with Lidocaine, fentanyl, Versed and succinyl choline, resulting in excellent sedation.
I was placed in a drug induced coma for three days, waking up on October 24, 2001. I was send for a kidney biobsy, and put on dialysis to try to get my kidneys working again. I was there for 4 weeks, i was so swollen from the prednisone that my skin was seeping water, and i had some unexplained blisters, they sent me to the U of U burn center for treatment, then I was sent to LDS hospital because I had lost use of my right leg during the drug induced coma, and was so severly swollen that I was unable to walk. I was sent to the physical therapy floor of the hospital to work on walking again. I was there for another 4 weeks. I was released on December 22, 2001, even though I was still not completly steady on my feet, I had gained over 100 pounds of water due to the medications I was on, bringing my weight to 310 lbs. Once home I was able to get up on my own and walk to and from the bathroom with a walker when I needed, and slowly lost the water weight and was walking better by the New Year. One month after being released from the hospital my weight was 180, I had lost the 100 lbs of water plus 30 lbs, from the hospital diet I was on. I was starting to feel good again.
June 3, 2002, I was placed back in the hospital due to the lupus shutting down my kidneys, and was placed on dialysis once again, my kidneys did not come back this time and I was sent home and was sent for dialysis treatment and a dialysis center 3 times a week for 3 hours, and started talking about a kidney transplant with the doctors and family.
I would be tested, and put on the waiting list while family members and friends were tested to see if they were matches. Normally a sibling is the best match, but with my only sister having Lupus as well, she was not even considered. My mother was not considered at first either, due to she would be the one caring for me after the surgery. My father was tested and a perfect match. The transplant doctors wanted my father to loose some weight before they would do the surgery. So he worked hard, and the weight would not come off where they wanted it to, which was around the mid-section, he did however loose weight everywhere else. In December of 2002, I couldn't wait any longer, my fistulas were not taking, and the shunts I had in were getting infected. So they scheduled the transplant for December 12, 2002. The day before, it was canecelled due to a emergency transplant for another patient. Things were put on hold again until January 9, 2003. Everything went according to plan this time, and my dad and I went into surgery early that morning. I woke up later that night feeling great. I got up the next morning and was walking around, as I didn't want to loose use of my leg again. Later in the day i was having severe pain in my stomach, after an ultrasound they thought that my ovaries were being crushed, and I was back in surgery, I had them tie my tubes while they were in there. My ovaries were fine, I had been bleeding internally due to all the small veins that had been cut and where I had been on blood thinners, it just took a little longer for them to heal themselves. I was realased from the hospital with my new kidney on Jan 21, 2003.

Fast forward to today 2008, my kidney is working great, I have had no serious problems with it. The anti-rejection medications are a bit rough on the body, I have to be careful to not get sick, as I dont have an immune system. The medicine lowers it so I won't reject the kidney. The doctor tells me that this kindey should last me 15-20 years if I have no problems. Its been 6 years (Jan 9th), and things are going well.

Angel Oliver
01-25-2009, 04:44 AM
Just to welcome you and say hello. Sorry this is short but i will catch up with you soon. There are many knowledgeable people here who are lovely and understand. Glad you found us :)


Angel Oliver
01-25-2009, 04:47 AM
Sorry i forgot to say, thank you for sharing your incredible story WOW!!


02-04-2009, 09:52 AM
Hi It's me your sister. Your story is still amazing to me even though I already know the story and I was there.

love honey

02-04-2009, 12:37 PM
Hi SummerDragonfly,
Welcome to the site. My name is Kathy. I have SLE, Lupus and a host of other Auto-immune diseases. I am sorry to hear that the Lupus destroyed your kidneys. I have been very lucky in that it has not attacked my kidneys. In my case it affected my heart muscle and lungs in a very bad way. Basically I am very lucky to be alive. I have been on medications for years, since 1996. My doctor believes that I have had Lupus since the age of about 5 or so and I am 50 years old now. I am not in remission at the moment, but then again I go in and out of remission all the time. Well I just wanted to welcome you to the site. This is a great site with a lot of wonderful folks that come in here with a vast wealth of information. Please keep posting ok.

I want to welcome you too. I think that it is neat to see both of you sisters on here. I wish my younger sister would come on here as she has Lupus too, but she said she does not want to yet. Please keep posting.


02-05-2009, 08:25 AM
Hi Summerdragonfly :lol:
Welcome to our family. You story is amazing and I am so happy to hear that your kidneys are functioning well. How is your father?
It is scary, sometime, how Lupus (and its cohorts) causes so many unusual symptoms that baffle doctors. Meanwhile, we are passing out, hallucinating, having brain disorders, etc.
I am assuming that your current treatment regimen is keeping most symptoms under control. What anti-rejection medication are you taking? Many anti-rejection medications are standard treatments for SLE, so you meds may be doing two things at once.
You've come to the right place to be amongst others who truly understand and who are here to give you information, comfort and support. I'm glad that you found us and that you decided to become a part of our family!
Once again.....Welcome
Peace and Blessings

02-05-2009, 11:38 AM
hi summerdragonfly and hyeres,

welcome to both of you. Family....what a wonderful part of our lives. I am thankful each and every day for my children, who each takes an active role in my cause. Sometimes a little too much for my preference, but at least they are there.

Summerdragonfly, your story is incredible. I wish you many happy days.

share a smile today,

02-05-2009, 09:57 PM
Welcome to the group. I am new here also and have found everything and everyone great. What a story-WOW :) You are in the right place now and have support from more people that you thought you ever would. Welcome and I hope you find answers that you need and support that you deserve.

02-07-2009, 01:12 PM
Amazing story! Thank you for writing it down for everyone to read.

I keep seeing over and over again MDs are missing opportunities early on to diagnose Lupus. I had a PE at 29 and have had problems ever since and only this week was it found I have high antibodies to clotting factors (Antiphospholipid antibodies) and finally getting answers.

I pray your health stays well!

02-07-2009, 02:03 PM
just a quick hello and welcome from me too....

02-07-2009, 02:46 PM
Just wanted to say hello and welcome i am also new to the site.

02-17-2009, 12:43 PM
Sorry i haven't been on recently, just been busy getting some exercise in (walking and swimming). As for my father, he has had no complications that i am aware of. he healed quickly and was out of the hospital a week before me.
As for the Anti-rejection meds, the prednisone and cellcept work for both the Lupus and TX. I also take Prograf for the TX. As for the other meds i take there is the coumadin (history of blood clots), Pepcid (acid reflux), Actonel (for deteriorating bones), Lasix (for water retention), Ultram ( for my back and daily aches and pains) and Lortab (for my back on really bad days).
Right now my most annoying issue is my back problems, which are from my weight and a slowly deteriorating spine (doctors say i have the back of a 70 year old, i am 31). I am in the process of getting ready for a gastric bypass which both my back doc and kidney/lupus doc both support. So im in the process of doing my best to loose 28 lbs. (which is hard because of that predisone). So i have been walking and recently started going to the pool. Ive only lost 5 lbs so far, but i have til april before i can afford the down payment to the doctor so i will just keep working my butt of when i can.

Angel Oliver
02-17-2009, 12:56 PM
Hello and well done on the 5lbs you have lost. Dont rush it, it will come off slowly.Wow a band hey.My friend has one and it took her along time to loose weight but she got there and feels so much better now. I hope you feel a little better every day and enjoy the walks and the swimming. Glad you are back, you were missed.


Angel Oliver
02-17-2009, 12:57 PM
Hi Davita,

How are you doing? What have you been up to recently? Let me know.


02-17-2009, 03:36 PM
hi summerdragonfly,

major congrats on loosing 5 lbs. (especially on prednisone). Slow weight loss is the best, because this means it is really weight loss,not water loss. keep up the good work. I too am trying my best to walk everyday, but i really need to do more...my hat is off to you.