(Mom, Me and Dad post-op)
(Family and I being silly day after surgery)
Hello everyone,
I know its been awhile since I updated, it has been a crazy ride for me these past weeks. So lets get started! While waiting for my doctors appointment at Loma Linda which is tomorrow finally, I ended up being admitting to the hospital. My stay there was absolutely terrible, worst I’ve ever had and I’ve had my fair share, about 3 times a year since I was 12. I went in for pain in my flank which is my kidney also for; body pain, bruising, loss of appetite, and vomiting(All normal to renal failure). While I was there they did a set of ultrasounds which I found funny because I had done them the Sunday before and they were not able to access them, so I did them over. They noticed my gallbladder was full of stones which the tech had mentioned before. They decided to go ahead and prep me for surgery and take it out. So now I’m gallbladderless. Still recovering now. The surgery went well and I was release from the hospital about a day later. I was so happy and thankful to finally be home, unfortunately my excitement was a little short lived. The next night I started vomiting violently and didn't stop. I could tell something wasn't right and needed to be rush to ER immediately. When I got there I was losing all body functions and feeling like I was dying. I was catheterized because I couldn’t use the bathroom by myself. My body was failing me I couldn’t even walk. Luckily they pumped me with medicine and fluids and I stabilized. It was by far the scariest thing I have been through to date. I was later released that night. They have no idea what caused it and I had elevated liver levels but that can also just be from the surgery, so I will be tested on that again in a week just to make sure. Since then I’ve been at home trying to recuperate and heal. Luckily my grandma is able to come over and keep an eye on me so I don’t die on anyone. I haven’t been taking any pain meds, as I am scared to put anything else in my body now that I am feeling “normal” so everyday is different for me on how I’m feeling. Just trying to take it one day at a time. Tomorrow I finally have my doctors appointment at Loma Lina with the nephrologist (kidney doctor) because I’m still in stage 4 renal failure, my function is about 30% right now so I’m anxious to find out what is next. I’m pretty nervous and emotional because I think that for the most part in order to deal with how sick I am I’ve kinda kept myself in some kind of denial and now I can’t really do that. Everyone has a different way of cooping with things, and I suppose that was mine. Fingers crossed that I don’t have a break down, which I’m terrified of happening. Also I got a call from nephcure foundation where I submitted my story. They are basically the main nonprofit kidney disease awareness group trying to help find a cure because for my disease there isn’t one. I’m hoping that my story will appear on the website soon and I will keep you guys updated. They also set me the sweetest get well soon card that everyone in the office signed and it was so sweet! I haven’t been on the computer much lately or social media. I’m sure I will once I start feeling better but until then I’m trying to take it easy and relax. I just wanted to give everyone an update on whats been happening like I always promised I would. I have more appointments to go to this month and I will update again when I have more information. Thank you all again for the love and support through this journey in my life. Remember life is short, so love the people you care about while you still can because you never know when they can be taken from you or you from them. Out of the last couple weeks what I have taken from everything is that I just want to spend my days loving the people that love me and cherishing the days when my health is good.
(My love holding my hand and staying by my side)
(Card I received in the mail from Nephcure Foundation)
Xoxo
Tashara
Picture from after surgery
Hi, my name is Courtney! I know what you're going through. I am 20 years old and I also have FSGS. I just recently I found out that my kidney function is 22%. I am so scared and I feel so alone. I thought it would help me cope if I found other people that share this disease with me. I found your story on nephcure.org. Then I discovered your blog. And I must say, you are so brave! I wish I had the positive attitude you have kept. But every day I worry myself. I cry all the time. I have trouble sleeping at night, because I am just so worried what the future holds.
ReplyDeleteIf you would reply to this and give me some kind of encouraging words then maybe I could feel a bit better. I just wanna know I'm not alone.
Hi Courtney you are definitely not alone I know how you feel! Do you have a fb account? We could totally be friends on there and I can talk to you a little more about your situation. I haven't updated my blog in awhile and I was just making a video to update that Im hoping to get up in the next day or so and saw your comment. S My fb name is Tashara Kipp if you would like to find me and send me a request! Thats what I'm on most. I've been dealing with this for 13 years I would love to talk to you more about it!
DeleteI just read your story on the nephcure website and it brought tears to my eyes. I was diagnosed 3 years ago with FSGS and always get comments on how I don't look sick. No one but someone else going threw this can understand the horrible side effects that go along with this disease. Thank you for sharing your story, it's nice to hear from someone else that understands. I hope you are doing well and will keep you in my prayers!.
ReplyDeleteHi Amanda yes I was always bullied by girls who would say to me I don't look sick, I am now on dialysis just started 2 weeks ago emergency catheter and dialysis from the ER and it has been such a big adjustment I haven't updated in awhile because I have been so ill I went from 22 function to 18 to 16 in two weeks and then completely bottomed out to 6 and am now doing dialysis 3 times a week. Now that I feeling a little more up to it I'm going to sit down and type up my experience and be posting it soon and keeping an up to date blog for those who want to read for awareness and to no they aren't alone. If you have any questions at all please feel free to reach out to me!
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