Guest guest Posted October 1, 2001 Report Share Posted October 1, 2001 My surgery was laparoscopy, Nix. The doctor didn't mention having to stay off of work any particular length of time, and I had planned on going back today. My natural inclination is always to just get back to normal, so I end up pushing myself. That's probably why I felt so horrible yesterday - my body is probably telling me to quit it. hugs, lori Lori, What kind of surgery did you have? It sounds like you may be going back to work too soon. I had my tube removed 3 weeks ago and I have another 3 weeks off work. Please look after yourself, if you do too much too soon you will be back in the hospital. Take care, Nix x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2001 Report Share Posted October 1, 2001 Lori: I don't know what is considered " normal " time for the pain to stop. For me, the major pain ended about a week after the surgery for the most part. I'm sorry you're still sore and hope you're on the way to feeling up to par again soon. ~Kim On Mon, 1 Oct 2001 10:24:28 -0500, ectopicpregnancy wrote: > You know, I felt okay physically after the surgery on Thursday and also on Friday & Saturday. Then I woke up yesterday morning with horrifying cramps and ended up staying in bed all day, doped to the gills. I'm feeling better today but very sore. I've been bleeding just like a regular period. I suspect the cramps were probably just my uterus going back to normal, but I was sure surprised to feel so horrible after feeling fine the previous two days. Does anybody know about how long it takes to feel physically better after the surgery? > > I tried to keep busy on Friday & Saturday to keep my mind off things, but today it seems to be hitting me full force & I can't stop wanting to cry. I dread going back to work tomorrow. > hugs, lori > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2001 Report Share Posted October 2, 2001 Lori, the same thing happened to me after my surgery... I felt ok for the first few days and then it really hit me. It took me weeks to feel better physically, but I don't heal fast. As for the crying, it comes and goes... you are grieving, allow yourself to feel it... We are all here for you. lisa r Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2005 Report Share Posted August 22, 2005 Hi ! Well I am rejoicing with you on your brother's progress both in the weight loss and being worked up as a donor for you. I feel better that you are getting close to a transplant because I worry that your creatinine is already so high. I am glad the PTH is so much better too since you started the senipar. Please make sure to let us knowo when you get a surgery date. Update Hi everyone, I haven't posted in a while.My brother is getting worked up to give me a kidney. he was told he needs to lose 50lbs before they will proceed with the rest of the workup_I believe a CT scan is all that is left. He has already lost 21 lbs. He is great, he has joined weight watchers and is exercising everyday. I have been completely worked up. My brother is a 6 out of 6 match and also we are both CMV negative which is really terrific because if I got a cmv positive kidney, I would have a higher risk of problems.CMV stands for cytomegaly virus.80-85 % of all adults are positive.My last creatine was 5.0 and I actually feel pretty good. No nausea or problems eating. I see my neph mon. I also wanted to pass along that my PTH level was over 700 and my last one was 70 after I was started on sensipar 30mg a day. It really has corrected the hyperparathyroidism. Hope everyone is doing well, christine To edit your settings for the group, go to our Yahoo Group home page: http://groups.yahoo.com/group/iga-nephropathy/ To unsubcribe via email, iga-nephropathy-unsubscribe Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: http://www.igan.ca/id62.htm Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2005 Report Share Posted August 26, 2005 I would prefer it if you didn't have IgAN, but you have to be happy about having a creatinine of 0.6. That means you still have normal kidney function, so, you are potentially at a point where progression of the disease could be slowed down considerably. One thing though, with kidney function like that, there's just no way that phosphorus could be a problem for you, unless you have some other reason for having hyperphosphatemia. Pierre Update > Hello all! > > Well, I've had my first post-diagnosis neph appt. Very anti-climactic! My > creatinine is .6 (that seems good to me!) and my blood pressure is normal. > BUT ... my neph's practice is participating in a drug study so I am going > to be part of that. The study is the North American IgA Nepropathy Study > II through the Southwest Pediatric Nephrology Study Group. The drug > protocol will be Omacor fish oil, lisinopril and then a 75% chance of > getting Cellcept (vs. a 25% chance of getting a placebo). The study lasts > for 27 months and I will see the coordinator 13 times with blood work, 24 > and 48 hour urine collections periodically, etc. The study is hoping to > find if Cellcept can prevent further kidney damage from IgA. > > My neph says the goal is to keep my blood pressure at low-normal (~110/60 > or 70 I think) and that I should shoot for 2000 mg sodium a day. I also > asked about Advil and got the explicit NO WAY! Told him how the discharge > nurse after my biopsy sent me home with instructions to take as much Advil > for pain as I wanted. Nice! > > And, I fell down a flight of stairs at home (just careless!) and whacked > my tailbone and it hurts a ton and I can't take Advil (only tylenol or > excedrin migraine) and I feel sorry for myself! > > The other thing about the study is that women of child-bearing age MUST > use reliable birth control for the length of the study plus 6 weeks. After > spending 3.5 years trying TO conceive it feels weird to try NOT to. Are > birth control pills in general well-tolerated with IgA? My biggest concern > would be the effect on blood pressure but if combined with lisinopril > would it all even out? Since Cellcept and Lisinopril both are teratagenic > (cause birth defects) this is something I definitely want to be pretty > certain about. > > - I am a slow-healer, too, and have been tested for diabetes > repeatedly and I DO not have it. But the protein spill makes sense. I > think Bart (maybe?) posted about phosphorus causing itching and joint > pain. That makes sense to me, too, and gives me a starting point for times > when I am feeling particularly bad. > > Rita - I had posted before about myofascial release. It is specifically > indicated for fibromyalgia and is very effective. I think it also is > called trigger point therapy. Hope you are able to find some relief. I > have come to the belief recently that I am a pain wuss! > > For the person asking about what to expect with a biopsy: My advice is not > to put on too brave a face! I was a trooper and got treated very badly in > my opinion. I had no sedation, minimal anesthesia, and no pain management > follow up and I was hurting A LOT! I also was told light activity for 24 > hours afterward and no lifting for a day! Hah! Whoever got the > instructions on no lifting for a month was more like it! About a month > later I felt like myself but I was very, very sore, very tired, and just > in general felt fragile for awhile there. In hindsight I shouldn't have > tried to be brave and hide my tears!! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2005 Report Share Posted August 26, 2005 In response to your birth control question.....My doctors are emphatic that I be on it, because the drugs I'm on right now (especially the cytoxan i just finished....shudder!) would really mess up a developing fetus. I am under strict orders NOT to get pregnant! Fortunately, I'm not at a place in my life where I'm ready to, so for now it's not a big deal. So I think the birth control is OK.....or at least the benefits outweigh any possible harm. hope this helps, genevieve ---------- From: June051969@...[sMTP:June051969@...] Sent: Friday, August 26, 2005 9:45 AM To: iga-nephropathy Subject: Update Hello all! Well, I've had my first post-diagnosis neph appt. Very anti-climactic! My creatinine is .6 (that seems good to me!) and my blood pressure is normal. BUT .... my neph's practice is participating in a drug study so I am going to be part of that. The study is the North American IgA Nepropathy Study II through the Southwest Pediatric Nephrology Study Group. The drug protocol will be Omacor fish oil, lisinopril and then a 75% chance of getting Cellcept (vs. a 25% chance of getting a placebo). The study lasts for 27 months and I will see the coordinator 13 times with blood work, 24 and 48 hour urine collections periodically, etc. The study is hoping to find if Cellcept can prevent further kidney damage from IgA. My neph says the goal is to keep my blood pressure at low-normal (~110/60 or 70 I think) and that I should shoot for 2000 mg sodium a day. I also asked about Advil and got the explicit NO WAY! Told him how the discharge nurse after my biopsy sent me home with instructions to take as much Advil for pain as I wanted. Nice! And, I fell down a flight of stairs at home (just careless!) and whacked my tailbone and it hurts a ton and I can't take Advil (only tylenol or excedrin migraine) and I feel sorry for myself! The other thing about the study is that women of child-bearing age MUST use reliable birth control for the length of the study plus 6 weeks. After spending 3.5 years trying TO conceive it feels weird to try NOT to. Are birth control pills in general well-tolerated with IgA? My biggest concern would be the effect on blood pressure but if combined with lisinopril would it all even out? Since Cellcept and Lisinopril both are teratagenic (cause birth defects) this is something I definitely want to be pretty certain about. - I am a slow-healer, too, and have been tested for diabetes repeatedly and I DO not have it. But the protein spill makes sense. I think Bart (maybe?) posted about phosphorus causing itching and joint pain. That makes sense to me, too, and gives me a starting point for times when I am feeling particularly bad. Rita - I had posted before about myofascial release. It is specifically indicated for fibromyalgia and is very effective. I think it also is called trigger point therapy. Hope you are able to find some relief. I have come to the belief recently that I am a pain wuss! For the person asking about what to expect with a biopsy: My advice is not to put on too brave a face! I was a trooper and got treated very badly in my opinion. I had no sedation, minimal anesthesia, and no pain management follow up and I was hurting A LOT! I also was told light activity for 24 hours afterward and no lifting for a day! Hah! Whoever got the instructions on no lifting for a month was more like it! About a month later I felt like myself but I was very, very sore, very tired, and just in general felt fragile for awhile there. In hindsight I shouldn't have tried to be brave and hide my tears!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2005 Report Share Posted October 14, 2005 Hi Everyone, I just wanted to write and let you all know about my last Dr. visit. Well it defenitley was not what I expected. I did not have any labs done this time, it was mostly just a check to make sure I was not having any bad reactions to the prednisone. It was good to hear that my weight is fine and I really have not gotten any of the moon face yet. I'm a little puffy but not to much. BP is also doing good. I will go in Nov. 1st for my labs and see the Neph on the 4th. Then I will have to schedule my next 3 days solumedrol I.V. for the 12th, 13th & 14th of Nov. I'll keep you posted. So far so good, God's Blessings to all! Pam --------------------------------- Yahoo! Music Unlimited - Access over 1 million songs. Try it free. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2005 Report Share Posted October 16, 2005 In a message dated 10/14/2005 8:33:03 A.M. Pacific Daylight Time, ps_wagner9686@... writes: So far so good, Hey Pam, I'm happy to hear that you are doing well. May it continue! Hugs, Rita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2005 Report Share Posted October 18, 2005 Hi Ian, First, thank you so much to you and also to for the information on the ratios. On your doctor visit, I am sorry your doctor now says your prognosis is " guarded " instead of stable. Please do let us know when you get your lab results. Hopefully, the labs will bear out that your kidney function is in fact stable. In a message dated 10/18/2005 7:39:10 AM Eastern Daylight Time, " Ian Cotton " ian.cotton@...> writes: >Just got back from the hospital. An interesting visit. I saw someone >different to my usual Doctor and he was very good taking time to >explain things to me. > >My protein level was measured at 1.5g. This compares with 2.3g last >year and 1.5g the year before. He says in reality (as these things >vary day to day), that means my levels have probably stayed fairly >constant over the past two years. > >My BP is a little high at around 145/80. I think some of this is the >usual 'I'm in the hospital' anxiety but he wants me to go on another >BP med as well as the Ramipril I am on at the moment (I am taking >the maximum dose so can't increase this). > >I've been tested for lipids for the first time, something I was >going to ask about and had the usual sample of blood taken to check >my serum creatinine. > >The main thing I asked was my prognosis based on the statement some >years ago that it was good. He said my prognosis had definitely >worsened but still wasn't 'bad'. 'Guarded' was the word he chose to >describe it. It was good to hear as I have been worrying about it >recently. > >So, just a week or so to wait and then I'll find out my kidney >function results and my lipid test values... More tablets? We shall >see.... > >Ian > > > > > > >To edit your settings for the group, go to our Yahoo Group >home page: >http://groups.yahoo.com/group/iga-nephropathy/ > >To unsubcribe via email, >iga-nephropathy-unsubscribe >Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: >http://www.igan.ca/id62.htm > >Thank you > Quote Link to comment Share on other sites More sharing options...
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