Cindy M.--Case History

[cindym]

February 2006- Still battling! Have had two respiratory track infections and one of them battled doctor to forego antibiotics. Recently I have been experiencing my left foot swelling really bad. The doctor thought initially it was cellulitis and wanted me to take antibiotics which I declined and wanted to watch it longer. Sure enough, it did NOT turn red and is still very much swollen. My doctor xrayed etc and found no problem ,but is now sending me to orthopedic doctor on Monday. I am worried it is all the vanco starting to cause problems because I think I would have known if I had done anything to my foot. Time will tell. Meanwhile stomach is once again controlled and I am starting to reduce vanco dosage once again.

[cindym]

October 2006- After MRI, indium bone scan, regular bone scan, vein ultrasound study and 3 doctors I am now going to a rheumatologist. He initially ran lots of bloodwork thinking this whole thing was arthiritis but now he is not so sure. He had me go for chest xray and is going to be doing more test thinking perhaps it is now sarcodosis. It seems that this disease is hard to diagnose. If in the event he can rule this out he says that it could be only reactive arthiritis due to the cdiff. I am hoping that reactive arthiritis is all that it is. I am so sick of test and doctors I could scream. Bone scans show abnormalities in both feet and both ankles. The pain initially was only in one foot with swelling but now has progressed to the other foot as well. Swelling is not as bad in the right foot. It is scary because the pain is now starting up the leg in both legs. I AM SO TIRED OF THIS but this rheumatologist seems to be on top of it and I do like him so at least that part is manageable. Meanwhile cdiff is still controlled and I am currently pulsing once again!

[cindym]

November 2006- Finally got diagnosis on my foot and leg problem. They have determined after tons of test that I have reactive arthiritis brought about by having cdiff infection. I never knew this was possible but I suppose cdiff is the gift that "keeps on giving". They now want to put me on chemo (which I never knew they used for arthiritis) 2 kinds since I am not able to tolerate any of the anti-inflammatories. I am struggling with this decision due to the fact the drug literature says that this type of chemo can make you 3 times more likely to contract cancer. My family is full of cancer and I do not like the idea of inviting it into my house. I also read the side effects are not that wonderful. Also, I have read that cdiff can be brought about through chemo even though the rheumatologist says he has never heard such a thing. He tells me that with the way this thing has spread since February that if I do not do anything to fight it I may very well end up crippled. I now am having problems walking in the mornings and have ankle and foot pain in both feet all day. They ache at night alot and if I get cold the pain is miserable. I have to come to a decision by the 22nd of this month as to whether I will agree to treatment or not. I am very scared.........more so than with the cdiff (which is under control for now).

[cindym]

August 2007- Still hanging in there with continual foot and leg problems. Constantly something going on with me. Had really bad scare a few weeks ago which turned out to be kidney stones again. It is hell not to know whether you have cdiff related pain or kidney stone pain....it is horrible! Finally passed 3 stones and back to normal with only arthiritis related problems and continual stomach problems from time to time. Still have two stones (one in each kidney) which are too large to pass and for now the urologist is just "watching" them as I have had lithotripsy done 3 times and everytime they just come back. Hopefully these "big boys" will stay put and not cause me any problems. The little ones really do enough pain giving! Arthiritis swelling has managed to get somewhat better even though I have refused to go on "big dog" drugs as the rheumatologist wanted me to do. Remicade or Enbrel or Humira have many side effects and also lower immune system..........I NEED NO MORE PROBLEMS. Well it has been 7 years last month since all this started and still no relief in site. My doctors are totally against me coming off meds totally so I am on low dosage for now until some of my other problems subside and then I will once again try my hand at going OFF the vanco. WHY DO I BOTHER? If you lose hope----you die! I am still around but not posting on site much any more due to all my ailments taking up so much of my time. The rest of my time I just try to keep from even thinking about cdiff. I still manage to educate everyone I come into contact with and give the doctors HELL so I am still alive and kicking!

[cindym]

April 2008-------Still struggling with horrible bouts of frequency and chronic cramping. Found out through trial and error as I have everything else that I can NOT tolerate salads AT ALL and only limited amounts of veggies. Seems I also can not tolerate ground meat or dairy. Had a couple of really bad scares since I last posted that I was becoming resistant to vanco........but it was just something I had eaten which got my system on a tear that lasted over a week each time. Doctor is still mandating I stay on the vanco but I am determined to come off it one more time before I say........vanco will be with me for life. I currently am down to 2 per day and doing okay and will take it very very slow coming totally off. Seems everytime I get to one per day I start having horrible pain and lots of problems. My whole family is sick to death of my problems.........(they should be me!) Keeping faith that ONE DAY I will regain my health. Tons of other problems have crept up to go along with cdiff and it seems it is always something. SICK OF BEING SICK. Thank goodness the arthiritis is staying under control.

[cindym]

May 2009- Has been a rough year for me. I had a kidney stone lodge in my bladder and had to have it removed in December. Then in April I have had tons of test run on my heart which have showed that the heart muscle is thickening. Everyone (doctors and myself) are hoping that by changing my blood pressure meds and seriously bringing down my pressure and stabilizing it more that this condition will resolve on its own. Worse case scenario it could mean more test and not so good prognosis going forward. Cdiff controlled at this point after having to take antibiotic after the bladder surgery in December and relapsing big time. Feeling pretty good these days but still deal with fatigue and the reactive arthiritis (which I now wonder if could be my heart and not arthiritis at all!) Nausea problems have been controlled for the most part. My doctor has agreed not to prevent me from going to infusion doctors but is saying until the heart thing is resolved to do NOTHING. He also says he still is not recommending the infusions due to lack of evidence of complete cure by them, but will not condemn me at this point for going that route. The only problem is trying to get him to refer me in view of the fact I can not give a positive test result........still working on it but for now its all about the heart.

[cindym]

June 2010- This year has been just as lovely as the last. I had yet another kidney stone surgery in January and then when I went back for check up I was sent to lab. Upon exiting lab I fell and fractured my elbow and it took me 10 weeks to get back to normal from that. I continue to have kidney stone problems and never know whether it is my stomach pain or new stones. I have to wait until my urine turns to blood to distinquish the difference unless I want to live in a doctors office. They have run 2 more test trying to determine cause of stones but so far all my bloodwork looks good with no cause. This ole woman needs a break!
However, I thank God for each new day and with it the hope of beating this beast at some point in time. Since my updates and crisis or continual I have decided to update history only once per year.

[cindym]

June 2010- Failed to mention heart remains fine with no problems found that doesn't go along with someone my age or condition. Arthiritis is still a part of my life with both good and bad times. I had a test run to see if my body was absorbing vanco and THANK GOD it is not. So, therefore I am now a believer in it being non-systemic as told. My doctor was also rather surprised thinking there would be minimal findings ---MY FIRST BREAK!

[cindym]

January, 2011
Thought this year would start off better than the last two but it was not to be. I had been feeling almost like my ole self for the last few months and then developed a umbilical abscess (I never knew that could happen to an adult) and was given my first full course broad spectrum antibiotic since developing cdiff. The others I had taken even with surgery were short courses. The abscess had caused cellulitis and doctor was sure if not treated I would be critically ill within another week. Good news is I survived it and better news is he gave me a drug that even says on the written literature is less likely to cause problems with gut flora! It was a sulpha drug and I took it without problem other than it making me feel horrible since I was having to take both the antibiotic and increased vanco at the same time. I feel like I have been ran over by a truck but NO DIARRHEA and crawling my way back from severe fatigue. I thank God my doctor took the time to study what to give me prior to just handing me a prescription! Maybe this is the year of cure-----------HOW MANY TIMES HAVE I SAID THAT??

[cindym]

January 2011
I have had many PM's asking me name of antibiotic I was able to take. The name of the drug is
SULFAMETH/TMP DS TAB.........there was no milligram listed and I assume it is just a double dose sulpha drug. I had no bad reaction at all except for feeling bad the whole time I was on it but, this could well have been from the infection itself. Four days after last dose I started to feel better. Slight frequency but nothing even remote to cdiff symptoms. I also took vanco along with this drug. Took it twice per day for a week. I just called and asked pharmacist and he said it is the generic equivalent to bactrim DS. You best believe I will always ask for it. The paperwork even says it is RARE to cause cdiff and does NOT affect gut flora.

[cindym]

September 2011- Lots of changes. Due to doctor change and his wanting my blood pressure to be lower I was put on a new medication which ALMOST killed me before he decided it was not to be and took me off from it. It had the opposite effect on me in that it raised my pressure (both top and bottom) to extreme heights as well as raising my pulse. I now am back on my original med that other doctor had prescribed trying to get stabilized and Thank God I am feeling better, and pressure has moved down. The only thing about going off my bp med was finding out it was the culprit for all the swelling in my feet and legs, and all the pain that doctors (including rheumatologist) were saying was arthiritis. Bad news is it is the only drug I can tolerate as my system is so screwed up by cdiff. Hopefully once stabilized this doctor will find something to help me. Now, the worst thing that I can imagine has happened and that is that after January 1st my husbands company has changed the insurance to HIGH deductibles and NO CO-PAYS for medicine or doctors. I am not sure of my future at this point in time as we certainly can not afford the high cost of vanco. Luckily I am down to one per day at this point and am weaning slowly (as I have tried so many times in the past) and hope to come off it. Prior to the bp episode I was feeling pretty good for a change.

[cindym]

April 2012- Still hanging in there and had been down to one vanco per week and feeling very good for a change. I discovered through all my trials and errors since 2001 that VANCO is the culprit in me feeling like I am on my last lap most of the time. Once I got down to one vanco every 4th day I started feeling more like my old self and once down to one vanco every 7th day I was BACK or so it seemed. Every time I get near stopping the vanco I have to have surgery for some reason or another and therefore yet another antibiotic which opens the door to the beast once again. I had kidney stone related surgery 3 weeks ago and had to go back up on vanco and INSTANTLY started feeling horrible again. Slowly I will wean down again........is there no end? Meanwhile, my husband has been diagnosed with a rare blood disease and we have yet another war to fight! I do feel if I can find something (and we have tried lots of things) to keep kidney stones from forming and can keep from having constant surgeries to remove them with antibiotics that I will be able to get off vanco! I have hope again for the first time in 11 years!

[cindym]

October 2012........Have recently been diagnosed with esophageal cancer (Stage III) and while reluctant will be entering treatment within the next couple of weeks. Plans are for radiation and chemo followed by RADICAL surgery which truthfully I do not know if my body can possibly endure. Have never come totally of vanco and now chemo could bring it back. If not, certainly the surgery and the amount of drugs I will be given will. All doctors are aware of the problem and think it is still possible to do it. If they can shrink the tumor to a stage I or II then the surgery has a 67% chance of going well. If I were to have the surgery now, or if the tumor does not shrink the outcome of surgery would not have a good outlook. Please keep me in your prayers! It is strange how I fear the cdiff almost more than the cancer! I am having my surgery at EMORY in Atlanta and both the surgeon and the oncologist specialize in the esophagus. I am told if it can be done these people are the ones that can do it. It is in God's hands now. LOVE TO ALL and still in HOPES of CDIFF CURE!

[Bobbie]

Postby Bobbie » Thu Sep 12, 2013 2:42 pm

Many of you remember Cindy Mislivets. She was one of our first posters on this web site and continued to post for many years. She had a great sense of humor and was empathetic. Both her parents died of cancer, and she took care of them. After she developed C. diff., she had many other health issues. See her story in "Case Histories - CindyM."

Several from the site (including Nancy and Christina and I ) kept in touch with Cindy for years until she suddenly said she didn't want to do so anymore. We emailed her without success. When she posted she had cancer of the esophagus, we emailed again - again without success - so we respected her privacy. Yesterday, on 9/ll, Christina and I decided to try again. I'd lost her phone number and was unable to white-page her so PM'd her through the site. Her husband, Ken, answered me today. Here is his message.

"This is Ken Mislivets husband of Cindy Mislivets returning your email that you had sent to Cindy. Cindy passed away on March 11 2013 due to the radiation had damaged her lungs. This happen after operation. The operation had been successful. She lived 2 weeks after the operation on 2/22/2013. The radiation had damaged her lungs and harden them and she was unable to breath on her on. So let the people through the C-Diff web site know that knew her.

Thank you for trying to contact her, but she did not like talking about it through the process of chemo and radiation

Ken Mislivets"

A tribute to a lovely, intelligent woman who consoled many on this site while she was suffering. She is a loss to many. She is survived by Ken, two daughters, four grandchildren, and two dogs she adored. She lived in Augusta, GA, and loved the beautiful flowers there, especially the azaleas. When you see an azalea, think of Cindy.