Too Much going on now 165/115

I'm a 48 yr old woman who was diagnosed with Lupus sle in 1985. Had a heart murmur since 1978. Had my spleen removed in 1985 while 5 months pregnant with a baby that had a complete heart block. They called what I had ITP. Then in 2002 I had complete renal failure and spent 3 months in hospital. Was released with a bilirubin of 21.7. After a few years of recuperation I started to lose weight rapidly and had frequent chest pain and abnormal selective swelling. Like one muscle i my leg or arm and knees. I went from 230 lbs to 130 lbs in 6 months. I went to the ER 18 times from April to October of 2009. Repeatedly I was sent home with pain meds and steroid pills. Finally I begged them to keep me and I soon found out I was in stage 5 lupus Nephritis and heart failure. My protein levels were at 7000(a high being 150) and I had one muscle of my heart beating 235 x / min and the rest functioning normally. Another 5 week stay in the hospital and the cardiologists put a defibrillator/pacemaker in me by may 2010. This one was faulty and the screws came loos and the one lead had come unattached from my heart. 3 Weeks after the first implantation I had to go thru the surgery again only this time they could not get me to go under. I have PTSD now from the trauma of being awake during the 4 hour procedure and feeling everything they did including cutting into me ad removing the faulty pacemaker. My blood pressure has always been very very good. Then I started to get a high top number. 165/80 so I went through a nuclear stress test and they said it showed I had a blockage. Went for angioplasties and there was nothing there. Now my blood pressure is averaging 165/115 on a daily basis. I'm really frustrated and scared at the same time. I have multiple issues. due to the Lupus that cause alot of pain daily. Like 35 other diseases to be exact. Is there anyone out there with anything close to what I'm dealing with?

3 Comments

Yikes!

by Zia - 2013-05-22 02:05:52

You've really been through the mill. I have nothing like you have had, but wondered what kind of docs you're seeing? Sounds like you need at least a cardiologist, rheumatologist, nephrologist, maybe others, and somebody to keep them all talking to each other, the latter being the most important of all. If they don't form a close team, you get treated as a collection of parts instead of a whole person, and things get missed as a result.

I can only wish/hope you get better care in the future.

Z

Thanks

by Judewah - 2013-05-23 02:05:00

I have been dealing with this for some 30+ years now. I have a PCP who is my hub. I have a nephrologist ,rheumatologist, orthopedic surgeon, 2 cardiologists a neurologist, a physical therapist a massage therapist and a shrink and a psych med doctor and a pain management specialist, I've been on a drug called cellcept for over 3 years to force the Lupus into remission and it's not the fastest route to take although its the safest considering all the complications. I'm om lasix for the water retention 40mg / day to 60. i'.\m on lovely prednisone so I retain water from that. The lasix drains your body of sodium and potassium so I have to be very cautious when not getting enough salt into my system because I'll have immediate heart failure if it drops too low. The Cellcept is a strong drug they use on chemo treatment of patients so I'm always throwing up or taking Zofran to hold down the 18 pills they got me on day to live. I was kinda hoping for a homeopathic or holistic approach. Been to the pain dr and been high on oxycontin and been zoned out for three years then the dr decided he didn't want me on his hands anymore because he couldn't cure my pain, just calm it. I have sciatica, fibromyalgia and chronic neck and back pain. spinal bifida occulta just to name a few of the things on top of this whole heart thing. From what I've read on the internet it sounds like my heart doesn't have enough umph to push thru the blood on the lower number. thats why the pressure is reading so high. Both numbers. I'm going to have to break down and go see my cardiologist. I jjust am so sick of being sick and just waiting for the next surprise Lupus has to throw my way. It's just like living a damned life in a prison. Can;t drive, go in the sun, walk anywhere because of the pain and weight. I eat very healthy but the prednisone has a way of puffing you up when subjected to high doses over years at a time and there is nothing one can so about it. I can't even leave my apt until I get a ramp to exit the doorway in my new wheelchair my PCP got me.. God I'm thankful for her everyday. Anyway stay away from the pain meds. They dropped me as a patient and I had to go thru the withdrawals from them all on my own and it was not un. You literally become suicidal and can not stand to be im your own skin. you can't begin to imagine the intensity of those meds. They are the newest form of population control around. People hold up pharmacies at gunpoint in our neighborhood for these pills and will do anything to get their next fix. It;s awful, I decided not to go with another pain management dr and to just see one for maybe muscle relaxers because I Hold myself so tense all the time even when I sleep because the pain is unreal. I have no words to describe it except I wouldn't wish this on Satan himself. I can;t have a heart, kidney or liver transplant because I'm rejecting my own organs already making me the least likely candidate to even get on the waiting list.

Thanks for your feedback. It was helpful and kind of nice to talk to someone who has experienced even some of the issues. I do appreciate it very much for the time you both took to reply to my plea for help. God Bless and be
safe!!

Judy

I think that how people react to withdrawal

by kathykat11 - 2013-05-23 03:05:41

is an individual thing i went off the maximum dose of 5 different pain meds cold turkey when I no longer needed them for the pain. I went in the hospital for gallbladder surgery and not only came out without a gallbladder I came out without a pain I had had for 18 years at the time of surgery and a pain level of five which is manageable for me without medication. they were never able to tell what the pain was that I had had for so long and that I had lived with for 15 years until I had a decortication which injured a nerve in my side so I was in constant pain from that as well. taking away the first pain allowed me to live with the injury pain without narcotics, I felt so good after my gall bladder surgery that I never needed more than tylenol. I didn't have any of the terrible emotional or physical types of reactions. when I had no need I just stopped taking them and never looked back. I am not saying that pain is not debilitating I call the years between my decortication and my gallbladder surgery my lost years. I was so doped up. I appear in pictured of events I do not remember ever having attended with cakes I do not remember decorating, hugging people I do not know the names of... and it is not just that I have a high tolerance to pain either if you hit my fingers or toes you have a howling ball of pain on your hands. It could just be that having watched both my sister and my mother waste their lives on drugs licit or otherwise I scared myself straight. I see a doctor about any pain I cannot manage myself after 3 days with guided imagery and OTC but I still thank my stars that I don't have an addictive personality and was able to just drop those pills without repercussions. I hope you have luck as good as mine in finding an answer.
Kathykat11

You know you're wired when...

You have a $50,000 chest.

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