MedicalZebra

Thank you ALL for your kind words and condolences. You REALLY have helped me through this difficult time in my life. Sincerely, Rick Dar's Fiancee

I thought I would bring you all up to date on the "prelimary" findings from the Pathologists. The Cardiac Surgeon has been great answering all of my questions and concerns about Darlene's death (MedicalZebra to all of you). He has PERSONALLY contacted me via phone and usually right away, which I must say I appreciate considering I'm sure he has a hefty surgery schedule. In fact, it was this Cardiac Surgeon who took the initiative to speak with the Pathologist. The findings seem to indicate SEVERE scarring on the heart and the muscle itself was very thick. Something I'm told would not have been picked unless there was a biopsy done. The Pathologists had wondered how she could've made it this far with the degree of damage she had to her heart. I must confess we all knew of her enlarged heart but, attributed to almost 18 years of Dialysis. The Cardiac Surgeon had given us ample information about her chances getting the Mitral Valve Replacement to which Darlene replied, "Well, if I don't get this I'll die of Congestive Heart Failure". She was an amazing woman who had a firm grasp of her situation and if she had any question I know she would often seek this forum out. She was always beating the odds and perplexing doctors and it seems she did that right to the end. She shouldn't have been able to do the things she didon a daily basis from what the Pathologist discovered, I'm just glad I got to have her in my life as long as I did. If anything can be passed on from this I think you should NEVER underestimate the sheer strength of Love and will power. I'd like to think that's what kept her with me these last four years. I can't thank you all enough for helping her AND me. And I will always remember how much her Cardiac Surgeon went out of his way to make sense of all this and settle any fears, regrets and questions I had and be forever grateful. Take Care Everyone, Rick MedicalZebra's Fiance'

She DID often have trouble with DANGEROUSLY low BP after dialysis sessions. Her sessions usually lasted 4 Hours, 3 Times a week. Her solution to it was unusual but IT WORKED every time: A container of Kool Aid Juice and a candy bar. No one could explain why that worked. It also seemed allot of things that would bring normal patients BP up would bring HERS DOWN. Is this yet another anomally to postomously add to her Medical Zebra resume! Has anyone ever encountered this and could it have been something ICU didn't consider (or Telemetry for that matter)?

This is MedicalZebra's Fiance' Rick, I have some questions I need you all to shed light on: 1) Her Mitral Valve Surgery with initially a success. But, her BP was never really that high and eventually got to Hypotension levels. One of you mentioned this problem. 2) In a four day span (including during the operation) she had 3 dialysis sessions. One of mentioned continuous Dialysis. I think the dialysis was a contributing factor in her death. 3) Preliminary results (unofficial of course) have ruled out infection or embolism as a cause... Her BP just could not get high enough for the team to do anything (a cruel paradox if you ask me). She was CLEARLY not getting enough circulation to all parts of her body (her right hand was even turning blue). The cardiac surgeon was very perplexed and I just want to know what happened. I don't want to blame anyone but, I just feel that the dialysis played some part in this outcome! So,... what should I be asking and what should I be looking for when I get the official autopsy?

This is the "XX eulogy" I did as one of her final wishes. I'm sharing it with you because it includes something she had written that puts in perspective why she so vigorously sought out sites likes yours. I can't thank you all enough for all the help you gave her. This will be my last entry... Take care everyone. I just wanted to begin by telling a bit about Darlene. And I will be brief and to point as Dar would want it. You know by looking at her you wouldn't have known the life she was living or how she even pulled off having one: You've seen the certificate from SETI. She'd spend hours on the computer helping find signs of life out there through a special program online. She also did the same type of thing with gene research to aid in cures for things like Cancer and other diseases like the one that took her Kidneys. And you've seen the pictures of her singing. And she had such a beautiful voice and she loved to go to Karaoke. I guess after braving all the things she braved, getting up in front perfect strangers to sing was a cake walk for her. And she didn't NEED the music or the words on the screens she KNEW the songs she sang... and boy could sing! She turned a feral cat she named Mars, into the "snuggliest" lap cat you have ever seen. And on top of that, she trained him to walk on a lease! You don't believe go see the pictures. I implore you to ask anyone that knew Dar about the things you see here. Feel free to read her "Final Instructions" she left us. (then my unknown caller ringer went off on my cell phone - that's the one that plays "When the saints go marching in" I turned it off and picked up where I left off... I enjoyed the irony later. ) It's a true testament to her uncanny ability to drive home her "will" even if it meant driving you crazy or off the road in the process. She had allot of will power but, in the end even that could not sustain her. I loved her dearly, so if I'm crying it's just because I miss her. I hope she understands that. I'm not crying FOR her because I know she's in a better place NOW. Finally, I'd like to share with you some of HER words in hopes it will help you to better understand her and life she was living. These are her words-- I started hemodialysis in 1988, at the age of 23. My kidneys failed due to MPGN, an auto-immune disease which destroys kidney tissue. I learned that I would need to have dialysis three times a week, for four hours per session. To say I was scared was an understatement! I had never heard of dialysis before I became ill. There were no books in the library about dialysis, and I didn't have a computer at the time-- which meant I had no access to information about dialysis other than the Patient Handbook I received at my first treatment. I felt isolated, and angry at the amount of time I was forced to spend at dialysis. As if the sheer waste of time wasn't bad enough, I began to have non-stop complications. I was in the hospital at least once every year, and it seemed that as soon as one problem was solved, another popped up. After six harrowing months on dialysis, I got a transplant - but that was filled with complications, too. The kidney rejected after three years of peritoneal dialysis before that option closed, also-- too many bouts of peritonitis. So it was back to the dreaded hemo, living my life around the dialysis machine. I told Sue, my social worker, that I had been through it all. She agreed, and said, "You could help allot of patients, because you've been through every modality." It had never occurred to me that all of the suffering I'd been through could form a knowledge base which I could use to help other patients... suddenly, all of the problems I'd experienced became valuable because they gave me the ability to identify with other patients. I could then help others going through the same things, because I had "been there"-- something well-meaning doctors and nurses could never do. I'm thankful that my social worker took the time to talk to me at dialysis-- otherwise I might be still dreading my dialysis sessions instead of looking forward to them as more opportunities to learn. I know that I have helped fellow patients, which gives meaning to my life and the suffering I've endured-- that's what gets me through it. Those were her words, and I thank you for listening to them and allowing me to share her life with you.

Thank you all for your well wishes and condolences. I loved her dearly and know that you helped in ways no one else could when she was here. Wake is tommorow and Funeral is Friday. Thank you again. I will check back in on her sign in if that's OK - Rick

Just in case I did this wrong the first time (I'm sure I did). The poster you know as MedicalZebra passed away Monday January 30 as a result of complications after a seemingly successful Mitral Valve replacement. The cardiac surgeon was truly perplexed at the degree and speed of the problem which caused low BP that was never able to be raised high enough to correct. She was not getting blood to her extremities which may suggest a clot form somewhere. After Dialysis Satuday it was a battle to keep her pressure up. She was moved back into CICU where her body eventually failed to recover. I don't know if I'll ever find out what truly happened, but, I thought I should let you know. This forum helped to educate and inform MedicalZebra. And I thank you on her behalf for being there. She was my fiance' and I know you help her allot. Thanks again, RICK

On January 30, 2006 the poster you know as "MedicalZebra" passed away due to complications that followed a seeminly sucessful Mitral Valve replacement. I am her Fiance' and I must say it happened very quickly and the cardiac surgeon was truly perplexed at how they could not raise her pressure. No details to share. I know this forum was very helpful to her and a great outlet for her to explore. Thank you all for ANY help you been to her in the time she was here. - Rick

They accidentally gave me my mother's Valium before my kidney transplant, and I had no time to tell the OR crew about it before they slapped the anesthesia mask on me-- so I got an overdose. They couldn't wake me up post-op, and my vital signs were getting weaker. I remember that I was reclining in an armchair made out of blue-gray clouds, which was itself floating in a blue-gray room, with a warm breeze flowing over me. I was wearing white pajamas and I was barefoot, and SOOOO comfortable! And then-- I woke up to find a nurse with her finger in my eye, yelling my name, and suddenly EVERYTHING hurt! It's a good thing I woke up when I did, because they already had out the big heart needle! My nurse yelled, "We don't need that!" and another nurse put the big needle away. I had no tunnel or white light in my NDE, just a comfy place where I was recovering before returning to a VERY painful situation. (Incidentally, I was wearing a regular hospital johnny and some slipper-socks post-op-- no idea why I saw myself in white pjs and barefoot!)

I had a cardiac cath with an AngioSeal-- and they still kept me in bed for 6 hours! I thought the whole idea behind the plug was to avoid that-- and it was never explained to me why it was done. The nurse at the end of the night had no idea why I'd been kept there that long, either.

I'm a dialysis patient, and there is absolutely NO privacy in the unit-- I hear everyone's business whether I want to or not when the neprologists make rounds-- all of our dialysis chairs are about three feet apart and it's impossible not to hear patients and doctors talking. For all of the yammering about HIPAA, nobody seems to care about the lack of confidentiality at dialysis!

Well, I had the cardiac cath on Friday-- and needed SIX doses of Versed plus a Valium-- and I still was screaming! I thoroughly scared the hell out of everyone in the cath room! I don't think there's any doubt that I need more anesthesia than what they are currently giving! I got the collagen plug on the femoral artery, which is really sore now, but at least it's not infected. (It feels really gross, especially when I stand up.) I am going for a consult with the cardiac surgeon on Wednesday the 18th, with a tentative surgery date of Jan. 25. The cardiac cath also showed a foramen ovale, which the surgeon didn't know whether it had been there since birth, or was caused by one of the tips of the IJ catheters I had for hemodialysis. So that will be repaired when they do the mitral valve replacement. The surgeon said because of the extensive calcification, the surgery is going to be a lot tougher than they originally thought-- he mentioned the possibility that the heart could split during surgery. I am getting my Healthcare Proxy filled out tomorrow at dialysis-- just want to be ready in case the unthinkable happens.

In the unit I formerly dialyzed in (and this is one of the MANY reasons I switched units!), a patient had died because the nurse who initiated his treatment had grabbed a syringe of lidocaine instead of heparin-- his heart stopped in the unit and the ambulance people were unable to get it started again. At the time, both lidocaine and heparin bottles had purple and white labels and were easy to mix up-- but the fault for the patient death should also be shared by whatever nurse put that bottle of lidocaine on the heparin shelf. That unit had multiple instances of mix-ups like this... thankfully a unit opened up in my own city and I was able to transfer. Dialysis is scary enough-- wondering if I was going to be alive in 4 hours was definitely too much to handle!

In 1990, I was thinking about getting married and having a baby. I'd just had a kidney transplant two years before and still had Medicare and CommonHealth (the Medicaid for working people). The transplant clinic told me I should be able to have a 'normal' life after getting the kidney-- and that included having a family. I called the Medicaid office to find out if getting married would affect how much I had to pay per month. "It sure will-- we'll drop you!" the office worker replied. "If you get married, your joint income will be over the program limits. But..." she said, "You can still have a baby... just don't get married! We'll pay your rent, and you'll get WIC, diapers, a corificeat, a crib, baby formula, and baby clothes." "So you're telling me to have an illegitimate baby," I said. "If you want any financial help, you can't get married!" was her answer. So much for living a 'normal' life after a transplant! I didn't get married-- and also didn't have any children. The kidney rejected a year later and I went back on dialysis. I am really not surprised that so many unmarried women have kids on Medicaid-- the workers practically call you an idiot if you don't go for it.

I never heard that the right to privacy only exists for people with private insurance! I am a frequent patient at a teaching hospital, and even though I am a Medicaid patient (ESRD eligibility), I have always been asked if it's ok for students to observe.