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cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 6/22/2009 8:51 PM (GMT -7)   
Well, I had a jerk vascular surgeon tell me that "nobody is going to fix" my retroaortic left renal vein, despite the relative simplicity of the procedure and the probable loss of my left kidney which is enlarged. I think they figure I'm dying of liver disease and autoimmune disease so why bother, besides they don't get paid much since I'm medicare.  He did run the test to see if any blood was getting to my kidney because the problem is that the vein gets pinched between blood vessels. He called and left a really rude message on my answering machine saying "Your renal vein is in fact behind the aorta. SOME blood is getting through" real mean like.  This from a guy who didn't even know what it was when I first came in.  At least I have the test run.  My kidneys have been crappy lately. I guess this venous deformity is what causes nephrotic syndrome in lupus patients and kidney problems in cancer patients. I STILL can't get in to see a nephrologist. I recently went to a health fair and had some kidney tests run and spoke with a rep and they told me they would call my doc and educate them since RALRV is so so rare a condition. Figures it had to be rare. It isn't even listed on NORD! I have spoken to several people withthe same problem and they did say I need to find a doc in the know because even if they won't fix it, there are some other things, posteral changes, etc that can improve things and testing that should be done oncein a while. Also, the "kidney infections" I get need to be taken more seriously and properly treated. I'm too worn out now to search.
 
I saw the neck surgeon again and we talked about my PET results and lymphoma and getting cut open again. There is some concern about a lymph node enlarged pressing on my jugular vein, which makes me dizzy sometimes. He said he is able to remove it, but I risk facial nerve damage and deformation of my face and other complications. A needle biopsy would be done first. There is no cure for indolent or follicular lymphoma I am on a watch and wait with no dx by my choice because I just can't afford the biopsy and feel that maybe not knowing will keep me healthier somehow right now. I will be getting a bunch of cat scns though to watch it, especially since this is a new development. Rituxin is being used experimentally, I can get that from my rheumie and may talk to him about that in light of the new problems.
 
And I havemore thyroid nodules that have to be evaluated. I really want them to take the darnthing out. It doesn't work anyway.
 
I hate to admit this but I have been really weak and tired, I don't care to do things I might normally do but am not unhappy. I felt a few months ago, that my health had turned a corner, and that I may be beginning to die. I don't know why I thought that since everyone is dying so to speak, we will all eventually go, but I am so weak now I can't fight a cold and my body is just telling me that something is different.  I think my liver may be damaged from the isoniazid and my liver disease may be progressing to a new stage, that or my adrenals. I fall asleep alot and cannot fight it. My body just feels like it is breaking down.  My endo calledme in about my bloodwork, hopefully it is just an adjustment needed. I can't wait to get done with them because I am going to try to get on some pred and see if that helps. My immune system is so weak though, Im afraid too.
 
I'm sorry to say this but I don't know if its just a form of depression, weariness, illness. It would be nice to know if anyone has felt this way before. I'm not sure what to do. I told my docs ad they just say "we are all dying". I think they think my liver is getting bad. I just think they don't care. I have thirteen diagnoses from Mayo of medical problems, just medical. And that's without the lymphnodes, thyroid nodules, and kidney vein thing.  The weird thing is that the feeling/realization? does not frighten me at all. Its just sort of a "hey, this is going on" kind of thing.  When I was sick bad, I was scared and fought, but when I was really facing death with pneumonia, I didn't care, but my mom did get me to fight by bringing my son in. There is so much wrong now, the docs do nothing. They say they are afraid to mess with anything. I have a hard time even getting antibiotics. They say they are "overprescribed". They don't understand I just can't fight the infections right now.
 
Oh, I'm supposed to wear tight support hose too because my deep veins aren't woring so well and I hate wearing them so  I don't, I can't get them on and cant afford them and medicare won't pay for them.  Any help on that fron't would be appreciated. I have some curved stiff fingers and its just hard to get them on.
 
Otherwise, I'm really pretty happy. I've been trying to spend more time with my son, he is really growing up and I'm less worried about him.  I guess I just feel totally spoonless. I do miss people here, I'm just too wiped out to do much and I seldom go online anymore. I'm pretty sedentary. What the heck is wrong? My mom's immune system is wiped out now and she's had mouth sores for seven weeks now. We are both a real pair.
 
I will be trying to catch up and be on more. Maybe that will help.  I do miss everyone and think about you often.
 
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 6/24/2009 11:12 AM (GMT -7)   
(((((((((((( Marji ))))))))))))

Prayers and blessings sis!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 6/24/2009 12:04 PM (GMT -7)   
Hi Marji,

I'm sorry you're dealing with this stupid doctor and so many issues to think about. I know exactly what you're talking about. There are times when it becomes difficult to care anymore. You just want to be left alone, have some peace, and BE. Just be. I hope you can find the peace you want Marji, and the care you need. Talk with you soon,

Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in to be content. Phillipians4:11-13
35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 Co-Moderator for the Lupus and Fibromyalgia forums


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 6/24/2009 3:09 PM (GMT -7)   
MArji, I am sorry you are experiencing this. My thoughts and prayers are with you. Blessed Be.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 6/24/2009 5:48 PM (GMT -7)   
So sorry! I agree with everything Ginny said! You are in my thoughts and prayers!

Amy

 

21 years old...Systemic Lupus , lupus nephritis , raynoids , Carpal Tunnel

Ultram, Prednisone, Cell-Cept, Lisinopril,  Ambien, Flexeril, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Aspirin 81 mg, Vitamin C

The Old Normal is no more so I and we have to find a New Normal...

 


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 6/24/2009 9:18 PM (GMT -7)   
Thanks so much Rosie, Ginny, and Amy--
I know you all know this worn out state. Last timeI saw the docs I told them that due to dementia/brain fog, I cannot even remember all the things that are wrong with me and my meical history. I told them that if I just had a one word diagnosis like lupus or anything that describes what is wrong with me, that it would really help so I don't have to go through all this listing. They didn't say anything except to say they understood, I don't think they do.

I am so excited about seeing the new endo tomorrow and getting labs so I can get back on steroids for a while. That should set me right again for a while and fix this weak feeling. Ido feel Im breaking down, probably having trouble healing the fibrosis from the isoniazid (for TB). I can only eat right, not take bad drugs and pray my liver is able to heal. It can take years, unfortunately.

I love you guys so much. Thanks so much for the support. Do these feelings, like the feeling of weaknes, mean anything? Or is it just my mind putting a gloomy feeling of dying on simple weariness and weakness. Hopefully soon, I will be geeked up on steroids. I'm afraid that I wll get reallysick coming downsince I'm so weak, but I just have to deal iwith it one day at a time.

Thanks so much again for he kind words and hugs. They helped alot.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids

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