I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: Clara on August 17, 2012, 10:16:35 PM
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I started out as a sickly baby. My first ear infection was at 3 months old. I seemed to be allergic to everything. It all seemed to be normal problems. I did start having problems in school when gym class was before lunch. I would become shaking and the teachers would give me a carton of milk.
I began to notice problems when I entered college. I can remember walking across campus and my eyes just clouded over. It was like someone had dropped a water drop into them. I would stop and blink trying to clear them. It lasted only a couple of seconds. I went to the eye doctor. Even paid extra to have my eyes dialated, but was told I just needed new glasses.
My Senior year in college, I began losing weight without doing anything different. I was constantly thirsty and drinking tons of water. I felt like I would kill for water at times. I was also sick all the time. I would have sinus infections and bronchitis back to back. My friends thought I was faking being sick. I went to a routine yearly physical and at the end of the appointment when the P.A. was wrapping it up, I mentioned the weight loss. She then started asking me questions about if I had excessive thirst, urination, and hunger. My answer to all of the questions were yes.
After a quick urinalysis, she came back and told me that I had sugar in my urine. I had no idea what that meant. I was told they would do some tests from the blood already drawn and let me know but that this was a sign of Diabetes.
The next day I was at work when I received a call from the doctors office saying I needed to come in right away. I don't remember exactly but my sugar level was somewhere in the 400's. I went through a month of different pill combinations with no success. I was referred to an Endocrinologist who walked into the room and immediately said that I was not a type 2 diabetic, I was a type 1 and would be starting insulin that day. I have been on insulin ever since that day, April 3, 1996. I was 21 years old. I knew my father had been rejected from enlisting because he was a borderline diabetic but had never known him to have any problems.
I spent the next 16 years making a career, going to through various types of insulin and shot schedules. I went through many Endo's. I am a very stubborn person and do not need a doctor to lecture me. I am intelligent and understand to "rules". I believe if I would have found the right Endo earlier in my life, I would be in a different place now. Insulin pump therapy was already available when I was diagnosed. However, you must show your book with all your blood sugars written down. I was a young active working woman who believes living life was more important than writing those numbers down. A year ago, I made another Endo change. The first day I was the new Endo, she said you are going on an insulin pump. Here's the ones I recommend. Research them andcall and let me know which one you want and I will start the process. She told me don't worry about costs because the manufacturers would work it out with me.
I LOVE THE INSULIN PUMP. It has made my life easier. Yes there are still needles but it takes me seconds to dose and I am receiving insulin all day. I don't have that run out of gas feeling as often. Unfortunately, my eyes and kidneys were already damaged. I began seeing blood trails in my eyes in 2007. I had approximately five laser procedures on each eye to stop my retina from regrowing the blood vessels that were popping and clouding my vision with blood. As the blood vessels pop, they leave scar tissue on the retina that can begin pulling the retina. If the retina is pulled to much, it will detach and cause blindness. My Retinologist advised doing a Vitrectomy on my left eye because of the damage and scar tissue. I agreed. I was scheduled for surgery three days after my wedding.
The day before the surgery a blood vessel broke completely clouding my left eye. I felt fortunate that the surgery was already scheduled. The surgery went well, but my vision was still very bad after the surgery. My right eye had a major bleed which then completely blocked the vision. I could not even see the very first E on the eye chart at this point. I still managed to keep my job. I was no longer able to drive. A good friend of mine who lived in the city where I worked and worked in the same area as me offered her home to me during the week. My home was an hour and half commute from my home without traffic. I was spending four to five hours a day commuting. This came to an end. I spent the next two years living this way and only seeing my husband on the weekends. He is a teacher and lost his contract the year we were married, so I had to keep my employment.
In May of 2009 it was time for the right eye surgery. This one did not go so well. I was given a shot behind the eye to numb it. Unfortunately the needle hit an artery and my blood pressure was through the roof (they had been giving me IV fluids for hours before the surgery). The doc and to put a slit in the corner of my to relieve the pressure of all the blood pushing my eye out. The surgery could not go forward. I had a blood awful looking eye for a month. I was swollen with fluids and my blood pressure was up. This was my first visit to the Nephrologist. I was retaining fluid. After four months of my friend Furosemide, I was able to have the eye surgery. This marginally improved my sight. I already had cataracts and the surgeries caused them to worsen.
In January of 2010 I had cataract surgery in both eyes. It was the greatest thing. After three months, I actually passed the eye test at the DMV. I could drive again. In May 2010 I quit my job and found one closer to my home. I knew there was some kidney damage from the earlier appointments with the Neph, but it was mild.
In December of 2010 I had an incident of Diabetic Ketoacidosis. I began vomiting at work. I drove myself home and had my husband take me to the doctors office. I continued to vomit at the office even after a shot to stop me. I was then sent to the ER. I was admitted into ICU. I vomitted for over 24 hours. My kidneys completely stopped making urine. All the fluids being pumped into me went into my tissues. I was like a pumped up watermelon. Fortunately, I survived. They finally knocked me out with Morphine. When I woke up, I had stopped vomitting. I couldn't talk because of all the acid erosion of my throat. My kidneys slowly starting working again. The Neph said they were in shock, but that I had 1g of protein in my 24 hr collection. Took forever to get that since I still wasn't making very much urine. The Neph said about four to five years I would need a new kidney.
Well it has not been four years. My creatine has been slowly increasing, but in the last four months it jumped a whole point. I am now running about 4.0. When he first mentioned transplant, my sister offered her kidney. She is now been diagnosed with Type 2 diabetes and high blood pressure. I hear that this will know her out of donating. She will need her own kidney. I also decided that since my only full sibling was out, why not go for the Pancreas too.
I completed the application to be listed. I was scheduled for my first Glofil test. They ran out of Glofil, so it was moved to next Thursday. I have already had a stress test for my heart with no signs of a problem. Eventhough it made me want to vomit. Apparently my stomach is not emptying properly.
So this is my story for now. I hope for more to come. I believe I am a type O, so not sure how long I will have to wait. Looks like a little over 2,000 on the list waiting now.
I believe God has brought me this far in my life. He gave me my wonderful husband. I believe that we should live each day to the best of our ability. I pray each not for God to help me be the best that I can be. I know some days that may be a couch potato taking multiple naps, but others I am a tank trudging along.
Thanks for reading :) I hope to get to know more of you as time passes.
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Hi, Clara :welcomesign;
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Welcome to the site Clara
take care Cas
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:welcomesign;
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It has been an interesting couple of days. My husband received a grant to take a college course which will help him change careers. He is currently an unemployed teacher. He has been substituting during the school year which helps me. However, he signed up for classes in the middle of the day. I haven't confirmed yet, but I am guessing these were the last available times.
I have been working 50 to 60 hours a week. I am extremely fatigued. I have explained more than once that I can't keep working like this. So what does he do, he ensures he will be making no money anytime soon to help with the bills. My blood pressure (which has been too low the last couple of days) just shot the heck up. I guess I will just have to have faith that it will work out. Either way, if I die he will be st with my life insurance. It just makes it really difficult to want to continue fighting when everytime you turn around is another hit.
On a side not, has anyone lost their ability to read? I was having really low blood pressure on Saturday and I could not read my grocery list. After a couple of hours, I was able to read it. Is this something I have to get used to?
Thanks everyone.
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Hello there.
After reading your intro, I think I want to put off my next eye surgery. I have a queezy feeling now because you had a shot behind the eye. Never had a shot to that area and want to keep it that way :puke; Shots to the eye area just seem wrong!
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The put you to sleep for the shot behind your eye. I made the choice to not be put under anesthia fully for the surgery thinking it would save me money. In the end, I paid for the surgery twice. I say if you don't have any problems with anethesia, do it that way. The surgeon said normally there are no blood vessels in the area where they put the shot but I was one of those people who are different. I completely suggest the surger because in the end it save my eyesight.
I still use the same guy and have had nothing but success since. My husband still doesn't like him but I trust him with my eyes. ;)
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Forgot to reply to side note.
My vision changes sometimes on a daily basis to where everything is blurry even with screen magnification. It is something I had to get use to, but still can use pc due to screen recognition speech software.
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Hi Clara, and welcome to IHD. I'm so glad you found us. You have been through a lot already. I hope you get your k/p transplant soon so you don't have to prepare for dialysis on top of all of it. Is your job physically stressful or mentally stressful?
Some people work while on dialysis and some just can't swing it.... like me.
Hang in there.....
Rerun, Moderator :welcomesign;
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:welcomesign; Hi, I am new too. Look forward to getting to know you. Praying everything goes well for you, well for all of us.
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I am a Paralegal and work high risk accounts. My job is mentally stressful. I have already had to move conference calls to the first part of the day because I am so tired in the afternoon it is just too hard to concentrate. I sit at a desk all day so it is not physically stressful. As a matter of fact I could use some activity.
I had my Glofil test and the results show GFR of 22%. I will not be put on the list. I have to have a reading of 20% or below. The doctor said we will talk about it on my next visit. It was very encouraging when I took the test though. There were five others taking it with me. All of them have transplants. One even had a cadavar Pancreas-Kidney transplant. She is going on 16 years with both of them still going strong.
I do hope that I don't have to do that test again to show I have fallen under 20% when it is time. I am going to bring this up at my next visit. That was just way too much water. I had to drink 13 cups in 3 hours. They could only find a vein in my wrists and hands so that was also painful. I don't mind the stick but bumping my hands and wrists for days after the stick just hurts.
All in all I am feeling pretty good this week. My car started smoking/steaming last Wednesday on my way to work. The A/C no longer works. I took it to a mechanic and the condenser has a hole in it...darn it. I just about caught on fire I was soooo hot on my way home today. I literally drowned myself with cold water and a fan when I came home. I am getting this thing fixed tomorrow somehow.
Thanks the Lord for my In-Laws. They have helped my husband and I with unexpected expenses over the last couple of years. Truly Angels in our time of need.
Thank all of you. I hope everyone is able to find the good in life and continue living the best that we can everyday.
:) :flower;
I love the flower. I may just have to make a post of flowers one day.
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Welcome Clara. Sorry for the lateness! Bad lmunchkin! Glad you found this site!
Again welcome & God Bless,
lmunchkin :kickstart;
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Thanks lmunchkin :)
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Welcome Clara! Nick