I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: Boberry20 on November 15, 2007, 03:02:57 PM
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My name is Cheri. I was diagnosed with membranoproliferative glomerulnephritis in 1988 when I was 8 years old. The most likely cause was one of the many strep infections or Scarlet fever that I'd gotten around that time. Untreated it damaged my kidney's. At a very young age I learned about fluid restrictions(although "the diet" never gets easier with time)and salt and potassium and lasix, persantine etc etc. For several years I had been in the hospital with kidney problems or Pneumonia(over 30 times). One year I was in the hospital for every holiday without fail. Eventually I stopped getting pneumonia thankfully. About 2 weeks before the end of 7th grade my whole body just started swelling up. At the time I didn't really notice. I could press on my leg and a big dent would sit there for quite awhile. One day I woke up and my eyes were swollen shut and my skin looked yellow so my mom took me to the hospital. They admitted me and realized I was retaining lots of fluid. I was put on Bumex and lost 20+ lbs of fluid within 24 hours. So my fluid restrictions were helped by the new diuretic. Around age 16 I started getting worse and was put on Cellcept and lots of prednisone. I gained lots of weight from it but after about a year I was in much better control. Eventually I lost the weight as well because I could lower the prednisone dose. Fast forward to age 18 when I met someone I thought I'd spend the rest of my life with. Knowing I had the kidney problems and they'd only get worse, it was a decision. Have a child now and damage the kidney's or don't ever have a child and eventually they become damaged anyway. I chose to have a child. It was obviously a high risk pregnancy. I had to get tested and have visits every week. Things were going very well for quite some time until about month 5 when the doctor realized my size didn't match with how far I was so he scheduled me for an ultrasound. Unfortunately in this one case they weren't concerned and scheduled it for a month away. Once the appointment finally came the test showed I had Polyhydramnios or too much amniotic fluid. Unfortunately because of how big it made me, it was like I was full term. I had started dialating. I was put into the hospital right away. They started me on steroids to mature his lungs, meds to prevent contractions and drained the fluid by amniocentesis(twice and I finally didn't feel like I might pop literally) To make this part of the story as short as possible, for about a month I was in and out of the hospital on bed rest, stopping labor and then being sent home again, only to come back. The last time it was too late. I was 8 cm and my water broke. David was born 3 months premature and was 2 lbs 5.7 oz. After about 2 weeks I started feeling really week. While I was at the hospital visiting David in the Nicu, I stopped by my sisters hospital room(she was birthing my nephew) and I layed down while I waitied for my blood work to explain why I was feeling so weak. While I was there my nephrologist came and told me I needed to be admitted because I need dialysis. So I went to the "kidney flood"(as i call it) and had a permacath put in. I got my first treatment for 2 hours. After that my kidney's kicked back in. Not 100% of course but enough to get me by. About 10 months later that familiar feeling of weakness came back. I would be exhausted but couldn't rest. My legs would kick around on their own. My doctor called and said I don't think they have failed because you should feel worse than you do but we're checking anyway. I'm glad he did because my numbers were horrible. I was scheduled for a PD catheter placement because we thought I was a good candidate for it because of my age and I thought it would give me more freedom. I started the training. Things were going ok but I was having a hard time complying with everything, every night and giving my own EPO. I stuck it out for two years and one day I got a peritoneal infection because I hadn't taken the lozenges properly. They had to remove my catheter and wait for it to heal and then put it back in. In the meantime I had to go on HEMO. I did and lost 20 lbs of fluid instantly. I also no longer needed any blood pressure medication. I felt much relief from not having to connect myself every night, no more trash and supplies over taking my house, no more worrying about germs getting into my belly. Now I even had one less medication to take. When my doctor was rounding during my treatment, he said you can be scheduled to get your pd cath put back in, I said, can I please stay on HEMO? I said I have never felt better. He reviewed my numbers, I told him about my being off bp meds, and the fluid weight loss. He was very happy and agreed. I was scheduled with the surgeon to have a fistula put in. I waited 2 months and it never matured the way it should have. I never got use of it even once. So they revised it into a graft. I clotted many times. I was put on coumadin. I clotted less often but I still clotted nevertheless. Too often. One time during a declotting round, I was in there for 4 hours because they had declotted it 9 times and it clotted back up right away. They had to give up. The next day when I visited the surgeon to talk about a solution, he asked if I remembered anything he was saying during the surgery(since I was "awake" but sleepy). I said no and he said good because he was saying some not very nice things everytime it clotted on us. To Speed this up. I had continuous problems with my arm. I had 2 bovine veins put in, neither of which ever got used. They clotted so quickly before they could be used. Eventually they had to throw in the towel with my ruined and scar tissue infested arm. I had even lost an artery in my lower arm. The problem was I have really small arteries. I also had a parathyroidectomy in 2001. They decided they should move onto my leg because obviously the arteries are larger there and a better choice for me. I went in for surgery on my right thigh MAY '05 Everything seemed great during the placement. I stood up to leave and as I put my shoe on I felt alot of pressure where the graft was. It had separated from my artery. My leg was filling up with blood. They called the surgeon fast and put pressure on it. I usually don't freak out about anything but this time I started to go into shock. I had to get blood transfusions and was rushed back into surgery. 4 hours later I emerged and was in a hospital room getting pumped full of morphine. My thigh was swollen to twice its size and bruised so bad that it spread up my torso, around to my back. I was sent home 2 days later and was swollen so bad I couldn't even sit up. I had been taught how to clean the wound and it looked bad. After awhile I noticed the wound was looking pretty awful and when I went for a visit to my surgeon he realized that alot of the wound around the incision was necrotic. Right there in the office(as i closed my eyes and looked away pretending it wasn't happening), he started cutting away some of the flesh. I couldn't even feel it(further evidence it was dead). By the time he was done I had a gaping hole that was about an inch deep and about 4 inches across in my thigh. He gave me new instructions on how to care for this. Unfortunately it was already infected although we just didn't know. For some reason my body doesn't react to infection right away. One morning while at dialysis I was fine. Between the beginning and end of my treatment I started having chills and a fever. By the time I got home my fever had gone from 99.9 to 102.4. I called and was admitted. I have a hard time remembering because of all the pain medication I was on but I spent 11 days in the hospital and had 4 surgeries in that time. They had to remove the graft. I was on morphine and ms contin. I had to have the surgeries just to change the dressings. When I finally didn't need surgery, I still needed to be given valium on top of the other pain meds just to have the dressing changed. I recieved a home nurse to come and change my dressing once I got home. I got a wound vacuum. They basically put a sponge into the hole and seal it with a hose hooked up to it that sucks on the wound at all time. it makes the hole close faster, while drawing your blood to it. I couldn't have a new graft put in until the wound completely healed. That took from May-october. Finally they wen't for my left thigh. You have no idea how careful I was, walking on that one after that. Just for fear of the same thing happening again. my surgeon gave me extra "slack" just in case this time, I think more for our own peace of mind. Don't think I'm crazy but yes, the same surgeon has done many of my surgeries. He didn't do anything wrong. It's just one of the risks and the number of surgeries I've had, who can beat those odds? lol I'm happy I can laugh about these things because if I didn't I'd be one sad and mopey person. Anyhow, my PTH had gotten pretty high and they knew they hadn't put a piece in my arm or something so I was sent for a Hawkeye scan. They found more Parathyroid gland in there. Apparently, they stop looking after they find 4 glands. People can have 3 or more. I was one of the lucky who had 5. So this ONE got over active all by its little self. I was scheduled to have it removed In September. This time I had to have half of my thyroid removed with it. It was successful. My PTH dropped to like 12. Unfortunately I'm having a hard time with the calcium still but it takes time for it to balance itself back out. A Plus is my Phosphorus dropped by alot after the surgery as well. Very happy about that because it seemed like nothing I did aside from not eating at all, would help it before. Now its 4.9 yay! And now we arrive at where I am now. 27 years old. On the transplant waiting list. Working on my 7th year of dialysis. I heard about this site from one of the techs at my unit and here I am :) It'll take me a while but I'm going to try and read as many of the stories as I can. One of the hardest parts of being a young person on dialysis is seeing the numerous older folks who have passed since I started there. It has been many. Some who had given up. And I don't ever look down upon them for it.
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Hi Cheri, Welcome to ihatedialysis.com. First of all i'd like to tell you THANK YOU for such an AWESOME introduction :clap; :clap; That is one of the things our founder (Epoman :angel;) loved, was an excellent introduction ;) Wow, you have been through so much, i am so happy the tech told you about us, there is so much info here and i am sure you have alot of info you can share as well. We have become a great big family here (welcome to the family) :) And in time you will notice we dont hold nothing back. We are here to offer each other support and encouragement, advice and whatever else we possibly can give to help make each others lives a little better. I am really looking forward to hearing more from you soon. :2thumbsup;
Goofynina/Admin.
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:welcomesign;
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Thank you :)
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:waving; Hi Cheri-
When I saw that big long story I was thinking... wow, this is gonna be tough to get through!
But there's a lot to cover and you did it well - it's amazing all the challenges you have faced.
So glad you're here! Welcome!
:welcomesign;
okarol/moderator
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Wow. You've been through a lot, Cheri. As I tell people about us, we are are STRONG, often
times not by choice but by what we've had to go through. You've gone through enough for
4 people, let alone one person! I admire your strength, and your ability to not harbor bitterness.
We're happy to have you here at IHD! :welcomesign;
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:welcomesign;
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:waving; Glad you found us. I'm semi-new myself. I look forward to getting to know you better.
Kelly ~*
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Wow! Great intro! Welcome to the site! You have so much to share.... :)
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:welcomesign;
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Thank you so very much! Now I just have to coax some of the patients from my unit who are tech saavy to hop on here lol.
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Welcome to our community! So glad you decided to join us. Marvellous intro - Epoman would have been thrilled with it. You have been through so much! But that you are still keeping on is tribute to the human spirit. I am really looking forward to your interaction here with us. And, yes, invite others to join us. The more the merrier! This is a tremendous website. In fact, we have become a family. If you look around you will find that out. This place is a second family to lots of us (and a first to some, I might add). So keep reading, and definitely, keep posting.
Bajanne, Moderator
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What a great intro! Welcome to the site!
kitkatz,moderator
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Welcome Cheri, good to have you aboard.
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:waving; Welcome
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:welcomesign; cheri. Great intro.
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Hello Cheri,
Welcome to ihatedialysis.com, that is a great introduction. You have been through a lot, it took me two days just to read it. :lol; Not often we get the privilege of such a great read.
It's great to have you join the family, we do our best to continue Epoman's dream of having a place where kidney and dialysis patients are able to voice their success's and failures and sometimes just to rant. Take your time reading and feel free to post as often as you like.
Sluff/ Admin
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:waving; HI and :welcomesign;
See you around
Take Care
Tamara xxxx oooo :grouphug; :grouphug;
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:welcomesign;
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:welcomesign; Cheri
You have found the most amazing site available. Look forward to hearing more from you.
willieandwinnie
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Hello and :welcomesign;
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Outstanding introl! And what a life you've led...it's a real honor to read your story and to have you around our little corner of the world wide web. I hope today is a good day for you...and I really hope tomorrow is a better day for you!
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:welcomesign;
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Actually, I had to cut and paste it to Word and then I double-spaced it! My eyes were playing tricks on me! ::) Great introduction!
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First- so glad you found us. You have survived more than one person should ever have to deal with.
Second- how great that your tech told you about this site! This is a wonderful place to come to. There are so many amazing people here and they all really do care. I will look forward to hearing more of you lifes adventures :welcomesign;
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:welcomesign;
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Welcome.
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hello and :welcomesign;
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:welcomesign;
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:welcomesign;