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View Full Version : Emergency Kidney Biopsy tomorrow



ButterflyRN
07-08-2009, 08:51 PM
Hi Everyone! Well I showed up at the nephrologist's office today and was sent to another office where he was seeing patients and was seen! I am having an emergency kidney biopsy done tomorrow morning to see where things stand before any type of treatment is initiated. Instead of blindly treating me with cytoxan he wants to make sure that he considers the best treatment for me without putting me through such toxic treatments to increase other problems especially since I have been on cytoxan the last 2 times I have had a flare.

I will be away from the computer for a couple of days but I'll be back either Friday or Saturday!
Will keep you all posted!

Rastagirl
07-08-2009, 09:28 PM
Hi ButterflyRN....

Thanks for letting us know what's going on. I'm glad to hear your doctor is being thorough and careful with the meds.

Good Luck with the biopsy tomorrow...you'll be in my prayers.

Sending you positive thoughts for a great outcome! :musik28:

Keep us posted.... :yup:

Hugs,

:cool2: Lori

Danica01
07-08-2009, 11:18 PM
Thank you for telling us and I am so happy you were seen! I know this has been bothering you and I am just so pleased to hear that the doctor is really looking out for you and making sure they do whats best for you. I will keep you in my heart and send you good thoughts all day tomorrow and over the next few days as your body heals. Good luck and let us know how things go once you feel up to getting back on the computer :grouphug:

mountaindreamer
07-09-2009, 08:05 AM
hi butterflyrn,

so glad you got in to see the dr. I am sorry that you have to go through the biopsy today, but sounds like you have a dr. who will be compassionate and thorough.

good luck,,,,sending you lots of hugs today.

Oluwa
07-09-2009, 08:11 AM
Thinking of you ...head hugs...in my, our prayers you are, Butterfly.

Love.
Oluwa

Saysusie
07-09-2009, 08:45 AM
I am sending you hugs and my best wishes. I am so glad to hear that you have a doctor who is cautious and concerned about what is best for you. Please take care of yourself and, when you are up to it, let us know what the biopsy results are!

Peace and Blessings
Namaste
Saysusie

crmj1183
07-09-2009, 08:46 AM
Butterflyrn,

Im glad they arent gonna just give you cytoxan. Ive had it before and its killer. You sound very positive which is always a good thing. Keep us posted. I am sending you big hugs and smiles.

Chriss

ButterflyRN
07-10-2009, 12:59 PM
Thanks everyone for all of your well wishes! I got home late this morning and the biopsy went very well! I should hopefully have a better idea of results between Monday and Wednesday next week. I am very happy that I do have such great nephrology practice, my rheumatolgist now the jury is still out!

I am feeling well, very very minor discomfort. A few days rest here and I should be as good as new. I will keep all of you posted on what I find out. The covering nephrologist for the practice today said there could be a chance that Rituxan my be an option again for me with such advancement. It of course will depend on the results! I will let you know.

Angel Oliver
07-10-2009, 01:03 PM
Oh im so glad it went ok and he is being thorough . You rest up and you are in my thoughts.

love Amanda.xxxxxxxx

mountaindreamer
07-11-2009, 12:28 PM
hi butterflyrn,

You are in my thoughts this weekend....i hope monday goes great, and i hope this weekend is not too stressful....let us know how you are doing.

ButterflyRN
07-11-2009, 04:13 PM
Hey everyone things are going well! I haven't heard anything and don't expect to until this week. Just a little bit sore. This biopsy isn't giving me the discomfort like the other two did. just a little tender.

My mom came down from Pennsylvania to help me out and she's going to stay until Wednesday. She's doing a lot of the house work that I just couldn't do because of feeling so crappy! It's so very nice of her and I appreciate it so very much! It also allows me to stay off my feet and help with all that swelling which is still there but not nearly as bad as it was. At least I can see some veins in my feet.....LOL!

It's also nice to have mom's home cooked meals!

I hope all of you are having a good weekend yourselves!

mountaindreamer
07-12-2009, 11:41 AM
hi butterfly rn,

well, i see that once again "i was a day late and a dollar short". I don't know where i got so confused on the day for your biopsy, but i did. Sorry about that.

thank goodness everything went ok....i have heard some frightful stories, so it is comforting to hear yours. Please let us know about results....hope the drs. can treat you and bring some relief.

rest and take care of yourself....

Saysusie
07-12-2009, 11:58 AM
Hi;
I'm glad that you are doing OK and that you Mom is there to help you. Please let us know the results when you get them. Until then, take it easy and take care of yourself!

Peace and Blessings
Namaste
Saysusie

ButterflyRN
07-18-2009, 02:05 PM
I've gotten some preliminary results yet the machine they use to look at everything has been broken. My doctors really had me frustrated because noone was sharing any information with me this past week.

I got a call not from my doctors but Rituxan Access solutions wanting my verbal authorization to contact my inusrance co for benefits determination for my infusions for my lupus. I was a just a tiny bit mad that I didn't even know my results or a treatment plan and I have a drug company calling me about what treatment they are thinking about!

My husband finally got involved yesterday and had the doctor himself call me. He has been talking with the pathologist where I had the biopsy done at and it still appears to be Class 4 LN which I have had with some proliferation and possible membraneous appearence to it, but we won't know that until the final report comes back. But Rituxan is the treatment of choice they are leaning towards.

I see the nephrologist this Tuesday afternoon and will have my hubby with me to get all of the answers that I need. But at least I am making it though the weekend knowing a little bit of what is going on. I had a hard day yesterday with a little depression and just didn't want to deal. Then my mom went back home too which saddened me too.

Overall I am feeilng a little better. No depression today. My muscle pain thanks to the 60mg of prednisone daily has been relieved. Now I just have to deal with all the stomach upset/loose stools from the stupid cellcept which has been rough. I am trying protonix a proton pump inhibitor for the acid but the drug actually gives me bloating and gas. I think I might need something else.

So that's where things stand. I'm sure that I will be having a treatment either this week or next week so I will keep everyone posted. Thanks for all of you concern! You guys are a great group!

Saysusie
07-19-2009, 12:26 PM
Well, I am glad to hear that you are getting some answers and some indication of the direction they want to go. I hope that this relieved a bit of stress and, on Tuesday, you will have all of your answers (hopefully).
Try to get some rest and calm your nerves. I'm glad that the pain has subsided and this should help you to rest a bit.
We are here and I am sending you hugs to get you through until Tuesday!

Peace and Blessings
Namaste
Saysusie

mountaindreamer
07-19-2009, 07:00 PM
hi butterflyrn,

once again, i send to you my sincere sorrow for everything that you are facing. I would venture to say that your depression is justified. I find that when something out of the ordinary, hits really hard, i allow myself some "cry baby" time. This way, i release necessary emotions, and i don't make it worse by worrying about being depressed. I hope you have devloped coping skills, because you should not "beat yourself up" for anything....

i hope you are sleeping with peace tonight....

Danica01
07-19-2009, 09:06 PM
I am sorry you have had such a battle. I hope this finds you feeling better and I agree with mountaindreamer, give yourself some good crying time :hissyfit: I have to do that when I feel to overwhelmed with life and everything it gives me. Please keep us posted on your drug plan and everything going on. Hang in there love :hug:

mountaindreamer
07-20-2009, 07:01 AM
Thanks everyone for all of your well wishes! I got home late this morning and the biopsy went very well! I should hopefully have a better idea of results between Monday and Wednesday next week. I am very happy that I do have such great nephrology practice, my rheumatolgist now the jury is still out!

I am feeling well, very very minor discomfort. A few days rest here and I should be as good as new. I will keep all of you posted on what I find out. The covering nephrologist for the practice today said there could be a chance that Rituxan my be an option again for me with such advancement. It of course will depend on the results! I will let you know.

hi butterflyrn,

I was just doing some research on a new lupus drug that is in the testing stages, and i saw a reference to rituxan....this information that i was reading said that rituxan had failed twice in studies on treatment for lupus. I thought i would pass this on to you prior to your nephrologist appointment...you might want to ask the dr. about this.

lucky7
07-20-2009, 02:14 PM
AWWWW, you are in my thoughts and in my HEART and i hope tomorrow goes well for you. XXXXXXXX

ButterflyRN
07-20-2009, 03:49 PM
Thanks everyone! I am so happy to hear the promise of the new drug that is succeeding with Human Genome Siences! This is so promising for all of us!!! I hope it really happens!

I have read that Rituxan has been failing, but at this point I think it might be the best option to try, but that is definately a discussion I will be having at the nephrologists tomorrow.

I definately am not afraid to cry and I did so yesterday! I think my next step is a new pair of Pink Nike's....LOL!!! Pink of course would be my favorite color!!

I will keep everyone posted!

Thanks for all the hugs and prayers everyone!

lucky7
07-20-2009, 03:52 PM
YES!!!! You cry when you NEED to!!!! I do too!!! I believe it helps me when i do it!!! Its needed sometimes!!! How CUTE are you!!! Pink Nikes!!! You go girl!!!! I LOVE PINK too!!!!! YOu DESERVE them!!!!:cute:

dassar RN
07-20-2009, 03:53 PM
Hi Butterfly RN,
I hope all goes well with the biopsy results. Keep positive.

Dassar RN

Saysusie
07-20-2009, 09:06 PM
Best of Luck...let us know how you are

Peace and Blessings
Namaste
Saysusie

Danica01
07-21-2009, 01:07 AM
You deserve a new pair of shoes and a new outfit to go along with them!!!!! I really hope everything comes back ok and you can get the answers you have been looking for. It must be really tough right now but I am also happy to hear that you let yourself go and cry when you need to. I think we just let things pile up until it breaks down and we just need a good cry :hissyfit: Keep us posted and remember that we are all thinking about you all the time!

mountaindreamer
07-21-2009, 06:42 AM
hi butterfly rn,

hope you are doing ok today.....please let us know what you find out at the dr. today.

Angel Oliver
07-21-2009, 02:52 PM
Thinking of you.

love Amanda.x

ButterflyRN
07-21-2009, 03:48 PM
Well I got good news today! The nephritis flare is of course "fresh" so there has been little change. It is still class 4 which I have always had and my nephrologist is happy with that. We have chosen to do Rituxan (treatment by treatment basis) and see how it goes. Even though the clinical trials are showing no, there has been a patient in the practice with not only lupus nephritis but also cancer. He 25 grams of protein spilling and after the Rituxan treatments it put his nephritis back in check. Then the fact that I have had it before he feels we should give this a try.

He is going to follow an Italian physician's protocol that has been studying LN and Rituxan. I wrote the name down but can't think of it off hand. I'll have to let you know. But the point is to check my lymphocytes before and after treatment and see if it is actually working and of course check my kidney functions. This way lower side effects will occur and treatment will hopefully prove successful. They do not want to do cytoxan again because over my 19 years with this disease I have had too much cytoxan and the damage it could do in the long run by giving me more is not a road they want to go down.

I was happy with the visit. So now we are waiting to see what insurance says which hopefully will be tomorrow and get an infusion set up. I'm still on wonderful 60mg of prednisone a day and can decrease that to 40mg after my treatment!

The protein that's spilling has dramatically decreased my albumin and in turn my lipids have skyrocketed. But we are going to do treatment and then recheck in 6 weeks before he just puts me on another medication to lower my lipids. I'm a poly-pharmacy right now and don't want any more drugs if possible. If I need it then I will be he things lower the protein then everything should come back in check!

So good news and again thanks everyone! I know I say it all the time but all of you are the best and this is a great community to have!

I'll let you know when I hear my treatment date!

Angel Oliver
07-21-2009, 03:51 PM
Glad today you was happy with the doctor.Goodluck on the new treatment and hope you begin to heal n feel better soon.

Love Amanda.xxxxx

mountaindreamer
07-26-2009, 10:03 PM
hi butterfly rn,

what wonderful news. i know you are feeling a lot better these past few days since your drs. appt.

will your insurance pay for the rituxan? how often will you receive treatments?

hope you are having nights of peaceful sleep.

Danica01
07-26-2009, 11:38 PM
That is great news!!!!! You finally have some answers and you have a good plan set up to address the concerns. I think this is some wonderful news we can celebrate. Like you said, once this starts to kick in hopefully everything else will start checking in as normal. Keep us posted on how your treatment is going and how everything else is falling into place. I will be thinking of you and sending you gentle hugs through this time :hug: Remember, you are an amazing part of our lives and we are so thankful for you. We have a wonderful family here :heart:

abbasgirl
07-27-2009, 01:17 PM
(((Hugs)))) to you and praying you are feeling much better very soon, ButterflyRN.

SandyR
07-27-2009, 04:18 PM
butterflyRN -
I am glad to see that you got some good news with your results that came back! I can imagine that you feel a huge weight lifted from your shoulders. Did you get your treatment date scheduled yet?
Sandy

lucky7
07-29-2009, 01:49 PM
Oh Butterfly RN, im SO HAPPY you got some good news! Im thinking of you and remember YOU ARE WOMAN HEAR YOU ROAR!!!! This is how strong you are!!!!! GRRRRRRRR!:yes: