Checking in....hopefully giving hope!

We spend a lot of time talking about the bad news in this discussion group - here's the spot for the good news. If you've had c-diff and are now well, please tell us about it here.
dufzor
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Joined: Tue Jul 02, 2013 12:16 am

Checking in....hopefully giving hope!

Postby dufzor » Sun Mar 30, 2014 9:34 pm

Hi guys! Way back last June, I was the person who wrote in and asked "How do you know when to call an ambulance?". I thank you so much for all your support!!! In brief, I was really sick, went to the ER several days later..6, I believe, tested both positive and neg for c.diff and instead of following protocal and starting meds, the Doc said that he did not take starting those kind of meds lightly, and sent away the sample to a lab. Four days later, I was in my docs office, the labs came in, I was positive, plus that morning, when I sat down, my body felt like someone had stuck a knife thru the front of my, by my appendix and out thru my back. So my doc checked my reflexes and I nearly went off the table in pain. She said, I'm admitting you!!!! NOW!!!! I thought I had c. diff and appenicitis. I did not know I was nearly dead. After drinking dye, having CT scans, waiting in the ER and by now on some very heavy pain meds, the surgeon, not the ER doc came in and told me that I had the worse case of toxic megacolon they had seen in 25 years. It was very close to rupturing, and if it did, there was nothing that they could do for me. I would die on the op table of septicimea!!! Okay~so, I've got C. diff, I have a mega complication, I'm on heavy duty pain killers, I'm attatched to IV's, I have to "go" every 30 seconds literally, I have a rare neuro disorder that makes me fall quite a bit for someone my age (then 49), and I have to take my IV pole with me to use the bedside camode, then try to go all the way across the room with the IV pole and try not to set off the alarms, so that I could wash my hands with soap and water!!! To help keep my humour, and thanks to good happy drugs, I called it my "Pole Dance" from that point on!
Long story short, I was in critical cond. for 3 days. I woke up one night with 7 staff members around me and the RN yelling to get a doc stat! I asked what was going on...you've spiked a fever! Ok~then I went right back to sleep..when I woke up again there were 2 nurses there and I said "Why am I sleeping in a pond?". The fever had broken! But my lungs were not working right, and I am not allergic to anything! They could hear me wheezing 80 ft down the hall. I was put on oxygen. After a many day stay in the hospital, I was sent home too early with so much edema I couldn't put on my shoes or clothes, but had lost 40 lbs! I was leaving with most of the problem I came in with due to a medical mistake (that I caught, and the RN gave me copies of my records unasked for and her name, and said "He's having a tantrum and kicking you out because he is afraid of a law suit. I've seen this before. Here's my name if you decide to take legal action!!! Now that is scary!!!) So home I went, without even seeing a discharge planner...mistake discovered..2 hours later, I'm out of there...and the mistake was the doc had decided to switch me from liquid vanco to pill form, but didn't add the pill form on my chart, so I had been off it for 4 days and was symptomatic all over again. I live by myself in the woods, out of sight of a road or another house. I took care of my 14 pets solo and got sicker and sicker all over again. Couldn't take care of myself. I went to see my doc. I said I need to be back in the hospital but I have no one to take care of the pets, and there is no place to board my tropical birds. She sent me home with a nurse from home health sceduled for July 5th. By that time, I knew I had to go back. It took a miracle or 3....or maybe a village! but I was shipped to the hosp via ambulance not long after the nurse arrived and found me critical again. The next day, family and towns members worked on getting the cats and birds where they could get care. The dog was still with her 'god parents' from my first admission. This time I was only on the unit for 4 days, then sent to a rehab facility. Still symptomatic, but on my way back. I was there just short of a month. When discharged, I was physically stronger and could wait longer before 'going', but was still dependent on 'depends', needed a mart cart to get groceries, and was still on the highest dose of Vanco, plus all kinds of pain killers etc. It was now Aug and I had been sick for 8 weeks. I had a choice of home health, or out patient rehab. I should have choosen Home Health, since it took rehab 7 weeks to get me in. I had no idea how deconditioned I was. And, I was still on full vanco, etc (you know the drill). Finally, after trying to titrate off vanco several times and never getting more than one step down before my symptoms were out of control (and of course I had had to give up rehab because my colon could not take the level of excercise they wanted me to do), I had another meeting with my doc of 22 years. She wanted me to choose the days I felt like I wanted to be sick, stop vanco cold turkey, and then provide the lab with more material for testing. So I did stop. Waited and waited....everything kept going as if I were still on vanco, or pretty close to it! Could not get the lab what they needed for the test! That was in Dec. I had been on Vango longer than any other patient my doc had treated in her career, and my elderly pharmasist said the same! In Oct, my hair started falling out in clumps. That was scary but Doc said, that it was very common after a catastrophic illness. I became an ensure addict! I strengthened my body snow blowing my 1/4 mile drive myself and we've had the worst winter in Maine in 2 decades. I used to have to use pain killers for my colon after snow blowing. Now I can use that part of my body to help push the snow blower thru the ice after an ice storm, with little to no pain. I have been off Pain meds for 2 months, and off Vanco for over 3 months. I can't believe I was that close to death from an illness I have never heard of. I had never known deconditioning and had been a single woman power house, throwing canoes and kayaks onto my car roof and going solo. When I came home, I had a cane and could barely carry my 1 lb parrot in his small travel kennel when he moved back in!!! I can now lug 35 lb jugs of cat litter 64 feet withour setting them down! I know that this story is not over, as my doc said that I can not take antibiotics in the future, but I am here now, still getting stronger, and am taking things one day at a time. At the same time, I am definately paying more attention to future, like downsizing my home, moving to the desert, in a town with public transportation, and my bucket list. Last year, I had tickets for Fleetwood Mac...on my bucket list! When I couldn't go to one show, I sold and got tickets for another, and was laying in the hospital near death during that show..Now Christine McVie has rejoined and thats my ultimate concert! Tickets go on sale this week!!!! And, an item that has been on my list for a couple years....letting a rehabilitated raptor go back into the wild happened March 1!!!! I have vol at the wild bird rescue and helped a few raptors but missed 'my' birds release due to being in the docs office. My 'bosses' let me know that they had a Great Horned Owl that was all better and needed her own real estate, would I be interested in releasing her onto my own property???? LOL What did they expect me to answer! She is wild, of course, so I nicknamed her Miss Wings from the show Touched by an Angel, to refer to her and I picked up Miss Wings and brought her to my land and had the honor of setting her free myself! One more off my bucket list! And I saw Miss Wings 20 days later, near where I released her on my property! Life is full of surprises, unknowns, etc but I will deal with life and my body one day at a time. I am so lucky to have made it!

beth22
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Joined: Tue Apr 07, 2009 2:23 pm

Re: Checking in....hopefully giving hope!

Postby beth22 » Sun Mar 30, 2014 11:34 pm

I remember your story from last year and am glad it has a happy ending. Do be careful about antibiotic use again. I had to take Levaquin about 6 weeks ago and my doctor made me take vanco along with it. I did not do well on the combo. You have other options if you ever relapse (hopefully not) and there are new treatments in the works.

Glad you are getting stronger. Thank you so much for posting your story and giving others hope and it is good to hear back from you. Please check in with us from time to time and let us know how you are doing.

Bobbie
Administrator
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Joined: Sat Aug 06, 2005 8:00 pm

Re: Checking in....hopefully giving hope!

Postby Bobbie » Mon Mar 31, 2014 12:48 am

dufzor,
Of course I remember you. I was on the site when you posted about an ambulance last June. You posted for awhile, and then we didn't hear from you even after several PM's. We wondered what had happened to you.

Congratulations on your miraculous recovery. You are quite a woman and a free spirit. Keep up what you are doing until you are 100% OK. I like your bucket list idea. Since you are alone, it would be wise to move to an area with better weather, more medical care, and neighbors, but would you miss your present freedom and chance to be with your wildlife? I'm sure there are wildlife shelters where you could volunteer in other areas, however.

Do get tickets for your concert and enjoy! I am sure when you released "Miss Wings" you felt a sense of joy.

Congrats. again to a super woman who overcame many odds. Thanks for posting and giving other C. diff. sufferers hope.

getwellsoon
Long Time Contributor
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Joined: Mon Jul 18, 2011 8:33 am

Re: Checking in....hopefully giving hope!

Postby getwellsoon » Mon Mar 31, 2014 6:11 am

So glad you are so much better after being ill for so long. You give hope to everyone with your miraculous recovery. You have a fighting spirit and that is what will keep you going. Do check in once in a while and let us know how you are doing and we are so glad we offered you support here. Come back anytime. Carol
CAROL

dufzor
New User
Posts: 14
Joined: Tue Jul 02, 2013 12:16 am

Re: Checking in....hopefully giving hope!

Postby dufzor » Mon Mar 31, 2014 3:07 pm

Thank you so much, friends!
I did leave out one important, to me, hopeful note. I left my Docs office at 6:30 PM to go to be admitted. I was in the ER until 3 am, until they could get me a single room. Not the norm in our hospital in a city of 35K people. At 10 am the next morning, I woke up because I felt someone stareing at me! The person peeked out when I said "Come on, I saw you." It was my pcp of 22 years, on Fri morning, her "day off" ie, out of the office. She had called the hospital and received the news. As said, we have a long and also very honest relationship and she cares about me greatly as I do her, but we managed to keep most of the professional boundary's, except I pitched for the clinics softball team for 2 years because I had known staff were friends of mine before she graduated from being Chief Intern, and had been with her since she graduated, so in a way, I was part of the 'family'. But again, we don't cross too many lines or hang out together and I have only called her by her first name one time, and that was as pitcher, telling her to back up in center field due to the next batter being very tall and strong. Many of her other patients think nothing of calling her Barb, but I draw the line. Anyhow, she was at the end of my bed and ducked behind the curtain because she was in tears! So she pulled herself right together, and I could see the doctor was back on board (and she had no reason to be there except to support me, and for her own emotional needs as she had no responsibility for my care there.). She came out from behind the curtain and with the strongest voice she could muster, said "I want to get this perfectly clear now...you are never getting antibiotics from me again.". To me, dying was just not an option, because I had a family of 14 animals to get back to, because now I was single... so all I did was think about being very careful while doing my 'pole dance"! Doc had diagnosed my partner with breast cancer on my partners first visit to her in the early 90s. We had just lost her to her second go round with cancer 3 years before and it broke Doc's heart, as well as everybody who new her. She was a pediatric oncology social worker. I'm getting off track: I looked right back at Doc and realized how much she cared about me personally and was there to be with me if I was going to leave this existance that morning, and I smiled, then I argued with her. I said with a laugh "Now, Doc. One day at a time! Lets not throw out the baby with the bathwater!" And she smiled a worried smile and said "I mean it, Sue." And I said, we can discuss this later and grinned at her. She looked very worried still, yet reasured, as she left the room! I was arguing back. That was a good sign. I am so fortunate to have this woman as my PCP, and this is not a brag-I've been told many times over the years that I'm her fave patient, but I say that because I feel even more fortunate that she too keeps the boundaries so that she and I can stay doc and patient, and yet, when I might not make it, she was there as a person. Ad after that, she did not come back for any of my stays! Healthy boundaries, but let me know how much I mattered. :) Now I need to talk that Maine gal into moving to the desert and starting a practice there!

Bobbie
Administrator
Posts: 12688
Joined: Sat Aug 06, 2005 8:00 pm

Re: Checking in....hopefully giving hope!

Postby Bobbie » Mon Mar 31, 2014 3:42 pm

You've led a fascinating life. Keep it up!


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