Geez, it's been over a year since I've posted anything on here. I hope I'll stick to it this time. Procrastinate much? Anyways, journal it's that time again. Time to face the sleeping giant. Tuesday July 7th I am having the tumors on my right kidney removed at NIH. I'm scared. I know it sounds "babyish" but I dread going up there alone for this. Granted my mom and my g/f are driving up to pick me up after I'm released (so I don't get stuck at D.C. airport for 7 hours by myself eating codiene like pez). I'm so tired and flustrated. I wonder what it's going to be like pain wise this time? Will it feel as bad as the time they removed the Hemangioblastoma? Let us hope not. I was pretty much suicidal after that one (they sent me home with darvocet...it never touched the pain. They refused to give me anything better I guess because I was honest and told them I smoke herb when they asked). Ok, well get ready couch,computer,playstation,and guitar because there will be NOTHING to do for months. I hate VHL...
Already a member? Sign in
Welcome to Inspire!
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
Round 3!! FIGHT!
- By FridayThe13th
- Posted May 30, 2009 at 8:38 pm · 15 replies
- Shared with the public
Explore topics in this journal entry and replies:
15 replies
- Oldest first
- Newest first
- By donnainflorida
- Posted May 31, 2009 at 8:03 pm
- Report post
Are you having an open surgery or laprascopic? I have had both. The laproscopic has a much shorter recovery time. But actually, pain wise i didnt think either was too bad! The meds took care of it. (Of course, like childbirth maybe i am forgetting-it was 7 years ago)
- By Bikrbarb
- Posted May 31, 2009 at 8:29 pm
- Report post
God bless. Hope you have more compassinate docs this time. Talk to them about meds before surg. Keep us posted on recoverey when able.
- By FridayThe13th
- Posted May 31, 2009 at 8:33 pm
- Report post
My research nurse and surgeon pretty much put it to me this way: If at all possible they are going to try laprascopic. If not they mentioned something about they might have to remove one of my "floating ribs"? Honestly, I don't get into too much detail with them about surgery. It makes me nervous. I figure at NIH they have some of the best docs in the world for this and I do my job (lay there) while they do their job. Do you remember if they gave you special instructions after surgery? Liquid diet or anything? How long was your recovery time? Thanks for getting it touch with me. It's always great to talk to people who've been there, done that.
- By FridayThe13th
- Posted May 31, 2009 at 8:42 pm
- Report post
Yeah, I plan on trying to keep my journal updated from now on. Oh, and about the meds that wasn't NIH. The local hospital here removed my hemangioblastoma and they were pretty strict about what I took. NIH shooooot they'll let me have anything. Last September my nurse came in and said "Well, what do ya want?" lol she was half kidding I'm sure but they gave me Tylenol 3 which was just enough to take the edge off. Maybe, I'm a tad looney but I HAVE to keep some medium range pain going or I go in superman mode and end up doing stuff too early and hurting myself.
- By joyceg98
- Posted May 31, 2009 at 10:12 pm
- Report post
Having a total nephrectomy is less painful than a partial nephrectomy.
When they do a partial, you have a wounded kidney in there working to heal.
When they do a total, you just have the incision(s) and the places where they disconnected the kidney to heal -- minor in comparison with the partial.
It's still not a walk in the park, but should be easier.
Best wishes,
Joyce
- By donnainflorida
- Posted May 31, 2009 at 10:26 pm
- Report post
Once i left the hospital, i dont remember having any dietary restrictions. They told me no lifting anything more than a pound or two. I am pretty hardheaded, so i think i was back to work 3 weeks after my open surgery. My laproscopic surgery was on my pancreas. i think i felt fine after a week or so.
- By TinaDiane
- Posted June 1, 2009 at 11:12 am
- Report post
Hang in there, you are doing the right thing. I had a bilateraladrenalectomy (opened in a v from under the entire rib cage) and the pain was totally controlled by meds. I could eat anything I wanted after, but ONLY after my bowels started working again. They usually start you on clear liquids and work the way up to solid food. You will need to be quiet for at least 3 weeks, but walking is as soon as you can. No heavy lifting for 3-6 months and no VACUUMING!!! I was back at work in 6 weeks. Then, they opened me up again for exporatory work and took some tumors off my pancreas (same huge scar). I had a lot of pain from abcesses that formed after surgery, but the drugs were fine.
NIH will do a great job and we will keep you in our thoughts and prayers. Hang tough!!!
xoxo
Tina
- By FridayThe13th
- Posted June 6, 2009 at 9:08 pm
- Report post
Thanks for telling me your personal expereance with the surgery. You must have hurt youself vacuuming lol. I just try to not think about it. The thing that majorly stinks is my family can't be there for it. We're pretty poor so nobody can afford the time off work. They do however plan on driving up to get me after I'm released (I got stuck at the DC airport for 7 hours after my last surgery). Do you happen to remember how long they kept you afterwards? Mines going to be on Tuesday July 7th and they said the earliest I could possibly go home would be the Friday after but more likely the Monday after. Just kinda hard to let my family know when to head up and I'm stressing about it. I dread going up alone but thinking about coming back alone is terrifying to me after what happened last go around.
- By TinaDiane
- Posted June 7, 2009 at 10:03 am
- Report post
Surgery is terrifying enough without having to worry about being alone! I wish I could be there physically for you.... But I am always here.
I was supposed to be in the hospital for 4-6 days after surgery. My bowels did not seem to want to wake up after each surgery (Gross, right!) and I had problems with vomiting the 2nd time, so I ended up in the hospital for 10 days. Maybe you can have your doc write an order for visiting nurses? Mine did that and it helped the first few days after I went home, as I was alone at home too. I was alone for most of the time in the hospital after my first surgery (my family was on the other side of the country). I just made friends with the nursing staff, and it helped. Praying always helps to, remember, we are never alone. God will hold your hand, and hold your head up when you can't...........
Thinking of you,
Tina
ps vacuuming sucks anyway!
- By kq182
- Posted June 7, 2009 at 3:28 pm
- Report post
I am praying that your surgery goes well and that you have a speedy recovery, and also that someone can make it up to be with you, or you have a great roomate in the hospital, and that the nurses treat you well. Take care, and try and not worry, you will be glad when it is all over and done with, the waiting sucks big time!! Karen
- By lifeandhope
- Posted June 7, 2009 at 7:19 pm
- Report post
You'll be in good hands at NIH. They cared for my Dad for years. He had his right kidney removed and I do not remember it being a terrible surgery for him; painful, but not the worst he's had. I hope everything goes well with you. Let us know. I'm with you...I hate VHL.
- By TinaDiane
- Posted June 7, 2009 at 11:14 pm
- Report post
I wish for a cure for all of us. We are all together on this one. I have faith in NIH. I think we ALL hate VHL.
Every time one of us has surgery, all of us feel it.
Thank God and Joyce for this website. I mean it.
Tina
- By donnab
- Posted June 8, 2009 at 3:27 pm
- Report post
I think you'll be pleased with your care and pain control at NIH. Why don't you talk to your Nurse Coordinator and see if they can put your Family up at the Safra Lodge, then they could drive up on Friday in case that is your release day, but have the option of a place to stay if you're in until Monday or so.
I'm sorry that you will be there by yourself, but maybe someone from these boards will see this and be there at the same time and will be able to visit with you. Unfortunately I won't be there then or I'd come visit you each day.
- By tqm1ed
- Posted June 9, 2009 at 10:19 am
- Report post
it's been two days since your surgery and i don't know if you took a 'laptop' but i'm hoping you get this reply.my surgery was similar but not exact. when i had my residual tumor removed once they opened me up it was discovered that the tumor had attached itself to one of my transplanted kidneys. it ended up being 9 1/2 hours which initially i was told maybe 4 1/2 hours. so instead of just a tumor to be removed it ended up tumor and a kidney removed. once complete initially alot of pain (24hrs) but in 3 total days i was up and walking with truly no pain at all. i started on clear liquids (2days) and slowly graduated to whole foods in a total of 5 days. i truly pray your opperation went well and you keep up the fight!
ed
ps. i also have kidney failure and have attempted two transplants which is why with colon cancer (tumor) when being removed they discovered the attachment to the kidney.
- By FridayThe13th
- Posted June 9, 2009 at 9:25 pm
- Report post
sorry, I don't have time for a lengthy reply, but I did however recieve your private message and plan to get back to you when I can. No, I haven't had my surgery yet. It's on July 7th. I hope you're feeling/doing well. Talk to you soon.
Add to the discussion