Final Kidney biopsy results

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Regular Member

Date Joined Oct 2003
Total Posts : 262
   Posted 9/7/2007 11:12 AM (GMT -6)   
so i went to my transplant doc last week to get the results of kidney biopsy, and it turns out that everything is good now, she said that there was no rejection and no signs of lupus, and that if we wanted, my hubby and i could start trying for a baby in a few months (she wanted me to get a few more blood tests in before we changed my meds around) i'm not sure why and i dont mean to sound like i'm ungrateful for the news but i really wasnt excited about the results, i just kinda felt like "oh ok so this flare is done, when's the next one suppose to come on" and i know that is not how i should look at it, but for some reason it is.  My hubby was super happy about the news and he took me out to celebrate and everything (he's so wonderful).  We are both happy that we can try soon, but that opens up a whole new can of worms.  i'm not sure that i can even get pregnant and i know that even if i do that i am at an extreme high risk for miscarriage and i dont know if i would want to put my marriage through that, i kinda want to talk about it with him but he refuses, he says that we will deal with it if/when it happens.  thanks to all of you for your wonderful thoughts and prayers i know that they helped even when i wasnt so optimistic.  i think i need to up my anti-depression meds i dont think that they are working, i still pretty much feel the same and when i talk to my psychologist i feel better but that is only once every two weeks and i usually  have bad weeks the week that i dont see her.  Well thanks for "listening" any words of advise or supports is always welcome.
Hugs and prayers,
diagnosed in May '95 with lupus nephritis, hypertension,hypothyroidism, avascular necrosis (knee) '98, kidney transplant April '06, pseudo-cerebral tumor '07
prednisone, cellcept, prograf, lopressor, allopurinol, synthroid, diamox, OsCal +D, lunesta, celexa, percocet for pain

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Date Joined Jan 2005
Total Posts : 8616
   Posted 9/7/2007 1:27 PM (GMT -6)   
Hi Suzanne,

(((Hugs)))) for you Suzanne!! The mental game we have to play is a tough one. Of course we are happy when our disease does not progress . . . but at the same time, we still feel *rappy and we want to make some kind of medical plan to deal with the pain, fatigue and other issues. I hope you've been feeling well . . . I think, from your post, that you you are. I think we are always waiting for "the other shoe to drop" and we want to be prepared to deal with it . . . but we don't get to know anything ahead of time. So we are living in a mind-field of sorts.

I hope you will be able to enjoy your new kidney!! Your husband sounds like a peach. It does take some time to get our brains wrapped around any new feeling of hope OR illness.

In His Grip!,
AlwaysRosie          "We can't control the waves, but we can learn to surf!"
Psalms 139
Co-Moderator ~ Lupus Forum
UCTD (Undifferentiated Connective Tissue Disease), Hashimoto's, Irratable Bowel, Inflammatory Arthritis
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Veteran Member

Date Joined Sep 2005
Total Posts : 2573
   Posted 9/7/2007 4:16 PM (GMT -6)   
Suzanne, I totally understand your fears and the lack of excitement that a lull can bring. I am one of the lucky ones who thus far, knock on wood, has had no kidney problems. Yet I have lost 4 pregnancies and had 2 babies die a few weeks after birth (genetic issue and what they labeled SIDS but now we wonder). Still my husband and I are trying since I am in remission because we both love children. If you and your husband love each other, are open and honest about fears and feelings, and do not blame one another then nothing that happens will break you apart. If your relationship is troubled or not close then you would be well advised to fix the relationship before having a child- that is the advice I would offer anyone not just a fellow lupie. I have watched friends and family who had so-so or even bad relationships have a child and that child suffered. Heck more than half the time a divorce resulted from the issues having a child caused. Worse a loss will cause those in a bad relationship or an iffy one to blame each other.

Still, your husband's happiness at your good news, and his saying we will deal with things when and if they happen bodes well. Unless his saying when and if is a way of evading your desire to voice fears. Perhaps if you explain that you just need him to listen to your fears and accept them he will be more receptive to talking, men who deal with the constant assault that lupus puts on their self-image as husband or significant other and protector often like to pretend that there is no risk so that they can deal better with things. Men hate feeling helpless and that is exactly how lupus makes them feel.

Perhaps a high risk consult would make him more receptive and ally some of your fears. I have done consults with geneticists and high risk doctors and understand exactly how much risk there is in solid numbers. Given your fears having the actual numbers might make you more ready or might make your husband want to discuss it more. Only the high risk ob-gyn can give you the most accurate numbers when it comes to risk. The one thing to be sure of is that the doctor you consult has the latest info and isn't quoting old numbers and ideas. I saw one who still stood by the no pregnancy for any lupie stance of more than 30 years ago yet she has been in practice for less than 5 years which means she had to have been educated with the current info. while a doctor who has been in practice 30 years gave me the most up to date numbers and risk information.

I truly wish you luck and hope all turns out the best for you. I am not trying to say anything about your marriage either just giving you the standard answer for all situations. Personally the standard answer can seem insulting because I got it several times.
Dx:fibromyalgia 2002, systematic lupus 2005, psoriasis 2006, rheumetoid arthritis 2006, early sjogrens 2006, low positive anti-phospholipid antibodies/lupus anti-coglutant 2001-2004 and 2007, osteoarthritis 2005, Migraine 1994, Compression fracture 2001, Disk problems 2006, Multiple allergies 2006, Post traumatic stress disorder (PTSD) 2007, Bipolar type II 2007, possible siezures 2005, probable lupus CNS involvement 2007

Tx: plaquenil, Imuran, Enbrel, Celebrex, Tramadol, Norco, Singulair, Skelaxin, Evoxac, Clonazepam, Zonisamide, Baby Asprin, Relpax, Copper IUD

Regular Member

Date Joined Oct 2003
Total Posts : 262
   Posted 9/7/2007 4:29 PM (GMT -6)   
thanks redrose, and no i totally appreciate your input, i took nothing that you said as an insult but it actually gave me some insight on how i am going to progress at this point. My hubby and i are actually one of the luckier couples, we are an army couple and he has already been deployed three times since 2001, and our marriage is very strong. We have been through the deployments, my relapse in '03, then my transplant in in '06 and he has been a wonderful form of support and comfort. As for the whole baby thing, i think in his mind its more if we dont talk about it then it wont happen, everything will turn out fine if we dont jinx it by bring it up, and if thats how he feels i honestly have no problem with that, i will let him cope the way he wants cuz i know that, god forbid, if it does happen he will be there to comfort me and we will be there for each other. And i do plan on seeing a high risk doc for this but i am kinda just waiting til probably next month cuz i already have so many doc appointments that i believe that this one can wait a month or two cuz i still need a few more normal blood tests before the transplant doc will give her ok. thank you so much for the responds rosie and redrose i really appreciate it.
Hugs and prayers,            God grant me the serenity to accept the
   ~Suzanne~                 things I cannot change, the courage to    
                                    change the things I can, and the wisdom
                                    to know the difference.
diagnosed in May '95 with lupus nephritis, hypertension, hypothyroidism, avascular necrosis (knee) '98, kidney transplant April '06, pseudo-cerebral tumor '07, AVN of R ankle '07
prednisone, cellcept, prograf, lopressor, allopurinol, synthroid, diamox, OsCal +D, lunesta, celexa, percocet for pain

Regular Member

Date Joined Aug 2007
Total Posts : 206
   Posted 9/7/2007 7:56 PM (GMT -6)   
My hubby and I are in the same boat, although my Dr. is saying kind of a now or never thing to having kids.  He would like to up my meds, due to some kidney involvement, but we want kids so badly.  Last Oct I had an ectopic pregnancy which resulted in me having surgery and losing my right tube.  It was a very difficult thing to go through.  My hubby and I were both very lost for a long time.  We still talk about it like it was yesterday.  He is very ready to have kids now, but I am afraid.  I've read so many things that can go wrong because we are "high-risk" pregnancies.  We are, however, going to a high-risk consult, then to my rheumy and following those appts. up with a visit to an infertility clinic.  We want to explore all of our options and try to make this as easy on us as possible.  It will however, be very hard on our pocketbooks:).  I believe it will be worth it.  We go in 2 weeks, and I'm hoping to make some real decisions that day.  I wish this whole thing were easier.  Best of luck to you and I hope you get your baby:) 

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 9/8/2007 11:18 AM (GMT -6)   
Suzanne, I am so happy for you that the results of your biopsy turned out so well. I'm sure that's a huge relief. I can certainly understand your worries about getting pregnant. I went through one miscarriage and it was very traumatic and difficult emotionally. I'm hoping you and your husband can find a way to talk about this. Do you think he'd be willing to go with you to the psychologist and talk about some of these things?

Keep us updated on how things are going and about any developments you have about getting pregnant. You'll be in my thoughts and prayers.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears



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Regular Member

Date Joined Aug 2006
Total Posts : 334
   Posted 9/8/2007 12:20 PM (GMT -6)   
Hi Suzanne,
Having, or trying to have children can be the most stressful thing you can ever go through. I had 2 ectopic pregnancies first, lost both fallopian tubes and was absolutely gutted. We decided to go through ivf treatment as this was our only option and naively thought that it would get me pregnant first time. It didn't and I had several attempts before it worked. It was hard work, on my body and more so my mind. I was an emotional wreck. I really believe if I had been forewarned about everything it wouldn't have been as bad. I would suggest some form of counselling which deals only with the issues you are about to face with trying to get pregnant, the problems you can go through etc. I think to be forewarned is forearmed. I now have a fantastic little girl who really does make all the heartache worthwhile. Never give up hope, you and your husband sound like lovely people and I truly wish you every success. x x
Chillblain Pattern LE, possible SLE, tachycardia, proctal fugax, anismus, slow transit constipation.
Prednisoloe, 35mg

Veteran Member

Date Joined Jan 2005
Total Posts : 659
   Posted 9/8/2007 10:13 PM (GMT -6)   

Hi Suzanne,

After all you have been through it is understandable you would be leary even when the news is good. Lupus teaches us to worry about what will happen next. I am glad your new kidney is OK and that you will be able to try for a baby. I wish you much success. You deserve it.


DX: Kidney Disease, (? Lupus Nephritis) 2002
DX: Raynaud's Phenomenon and Lupus 2005
DX: Anorexia and Hypokalemia 2006
meds: plaquenil, lasix, klor-con

Veteran Member

Date Joined Dec 2005
Total Posts : 1950
   Posted 9/9/2007 10:26 PM (GMT -6)   
Hi Suzanne,
I noticed you are hypothyroid and maybe that needs to be increased? If you are hypothyroid and unless you don't have one, your thyroid is slowly dying and eventually will not work at all, so during your life they need to adjust that. Maybe that is why the psych meds are not working so well. Coming off pred and going through surgery can really make you drained and down as well as pain meds. I just wondered if they'd checked these things recenty, because maybe your depression is related. Also, your adrenals rest on the tips of the kidneys and I don't know what a kidney transplant can do to them, but I imagine they might be temporarily affected.

Its such great news you are doing well after the transplant, you must be a very strong person and I hope that you continue to do well. For me, flares happen when I least expect them so I can't ever figure out when one will come, but do notice that when I forget about it I go a while without it affecting me so much. But then I get reminded that I'm sick.

I had to have a medically necessary abortion due to accidentally gettin pregnant on interferon, which we still cant figure out how that happened and I've also had a miscarriage. I ended up needing a hysterectomy at thirty five, so if your stuff is still working pretty good, you will want to consider that.

I know it is hard to make these decisions, but you can't feel bad whatever you decide because you are deciding and being responsible. I wish you all the best in having a family, however you choose to do it or not to have a child if that is your choice. I don't envy your position. You will be in my thoughts an prayers and I hope that things go well for you. It sounds like you have a very caring husband and you would be great parents.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments

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