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Post by christel on Jul 31, 2014 6:56:29 GMT -5
Everyone has been quiet these days--hopefully, it's because of taking advantage of summertime and it's lovely weather! I wish I could say I fall I into that group, but, alas, I do not! I have had an ulcer on my lower leg which opened spontaneously at the beginning of June. It's been getting bigger, even with rather aggressive treatment at a wound clinic. The burning pain in my entire lower leg and foot, along with inability to sleep, is what sent me to University of Michigan Hospital about 2 weeks ago. The hospital is where I am a patient at the scleroderma clinic, so I opted to go there, which is 75 miles from my home (not convenient for me or my family), but I felt it was best place for me to seek treatment. I was admitted for 5 days, was seen by a parade of specialists, had numerous tests, and was discharged with same pain and no answers!! Frustrating and discouraging to say the least. So I am back to local wound clinic and the wound is being called vasculitis. I am in an unnaboot (compression dressing), on high dose steroids, and return to clinic for recheck next week. If not dramatically improving, it's off to surgery for a deep debriding with biopsy. There goes my summer. . I have been unable to bear weight or walk for more than a few minutes before pain takes over. I have had many bad times with this disease, but this is something else that took me by surprise--not the nice kind!! Updates to follow... Christel
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Post by jeffn on Jul 31, 2014 20:08:48 GMT -5
Well Christel that truly sucks! No one really needs a hole in their leg. Have they tried any antibiotics? I had digital ulcers back when and while reading your post I realized that in my SD journey IIRC I have never seen any info on what causes them. Do they think your leg ulcer cause is similar to the ulcers many of us have on our fingers? Yeah I know too many questions. Does your wound clinic use any hyperbaric O2 treatments. I have done some reading about the process it appears interesting and promising for some conditions. At any rate hang in there and please keep us posted.
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Post by nhnancy on Jul 31, 2014 20:10:00 GMT -5
oh Christel, I am sorry to hear this! I truly hope that this will soon be history. I hope that it heals. Please know that you are in my positive thoughts. We get the strangest things! We baffle the docs...I have never had any open ulcers so I cant lend any advice from experience. I am hoping someone else can. I have a great niece that is a wound care specialist and head of the visiting nurse district close by, maybe I could pick her brain...if need be. She is a very smart and successful nurse. Get Better vibes....TO YOU, nancy
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Post by christel on Aug 1, 2014 5:43:33 GMT -5
Well, sorry to say, I had another rough night of interrupted sleep due to this awful pain. Have been on prednisone for two days, and I would have thought I'd have felt a little relief by now.
A little more background on the origin of this ulcer: I have had venous insufficiency in my left lower leg for a few years. The blood vessels must be in pretty bad shape down there and more fragile, as is common in SD. I guess there is a breakdown of the vessel wall and it kind of works it's way to the surface, causing an ulcer. The pain is due to the vessels being inflamed, getting both swollen and can also constrict (ischemic pain due to decreased oxygen, like in Raynaud's ). I had been describing this pain as ischemic to anyone who was treating me in order to narrow down a diagnosis. Through some digging online, the preferred treatment for vasculitis is steroids...of course, that is a slippery slope as steroids also suppress, so we need to keep a closer eye on the wound for infection, for example. Hence, I am getting this compression dressing changed again this morning, on Monday, and on Wednesday, when I also see the wound dr. for a recheck and evaluation of effectiveness of the treatment. I was on antibiotics, both topically and orally for about five days before my hospitalization, with no improvement. The infectious disease drs. didn't see any reason to treat with antibiotics any longer. Both wound and blood cultures did not support antibiotics at this time,
There are hyperbaric chambers in our area, but I haven't considered that route just yet as the cost would be pretty hefty. A friend of mine (the one with GAVE, Jeff!) used hyperbaric treatment for a finger ulcer a few years ago with good results. FYI, she is married to a physician and had just received a small inheritance from a deceased aunt...! So, I know the money is not important for our health, but at the same time, it is very important!
More later, my faithful friends. Gotta get ready for my dressing change at the clinic at 9 a.m. Woohoo!!
C.
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Post by Nancy - South Jersey on Aug 1, 2014 7:35:33 GMT -5
Christel, So sorry you're going through all this. Hugs!!!
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Post by christel on Aug 5, 2014 6:05:18 GMT -5
Oh my, I see that the last post I made was prior to my big emergency on Friday morning. I put a dressing on my leg after my shower and proceeded to my car in the driveway to go to wound clinic. I noticed blood dripping down my foot, so went back inside to clean up and change dressing again. Well, I had left a trail of blood from garage and back to passage door to house. I got into my laundry room and noticed that I was saturating my sandal as well as forming a puddle on floor from artery that was pumping blood out of my wound... My husband soon came home from walking our dog and followed the blood into the house, not sure what disaster he would find. (He watches way too many 20/20 and Dateline episodes!). I was becoming lightheaded due to blood loss, so my husband made the very wise decision to call 911. I could feel myself fading and losing consciousness. Of course, I didn't like to lose control, so promptly provided as much history as I could for the paramedics, as well as reminding them that I needed a line (an IV) and some oxygen. Nothing like having an old ER nurse as your patient! I lost quite a bit of blood, with my hemoglobin going from 12ish to 9.7 in a matter if minutes. I was discharged to follow up with wound clinic, which I will do tomorrow. I have been very lightheaded and being careful with movement so I don't keel over..my blood pressure is low on a normal day, and now is even lower. I think the wound will be getting a deep debridement and biopsy, since I've failed all other options to treat it. Will get the word tomorrow. And the summer marches on...to be continued..
Hope you are all doing better than me.
Christel
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Post by jeffn on Aug 5, 2014 18:36:05 GMT -5
Never a dull moment in your house huh and emergency room visits are always fun. At least when Hubby got home he did not find you a victim of a roving chain saw murderer. How did they stop the bleeding at the hospital, just pressure or one of the new clotting dressings? Or something else. You certainly have your wits about you as you handled it all well. I hope you get some answers tomorrow at the wound clinic. Arterial bleeding tends to be just a tad disconcerting, so stop with the SD adventures and heal up!
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Post by christel on Aug 6, 2014 3:17:17 GMT -5
The bleeding was stopped with direct pressure and then a pressure dressing with 'gelfoam' was applied by the wound care residents while in the ER. Yes, I have had a lifetime's worth of scleroderma-related issues, so I am craving a big break in the action. Lack of sleep and pain is enough to wear down even the strongest person. Enough, already! I have been the recipient of some meals from my church family, both humbling and appreciative being at this end of the caring.. These are some of the things that help me to keep going!
More later after my wound recheck. Enjoy your summer days, my friends!
Christel
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Post by nhnancy on Aug 6, 2014 15:10:22 GMT -5
Christel, wow... I am sorry! I am glad your hubby came home in time....enough is enough!! Keep us posted we are thinking of you! Nancy..
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Post by grammie on Aug 8, 2014 13:39:42 GMT -5
Wow, Christel, you have had more than your share! Pray the team can get this under control soon for you and your hubby. Tough going.............
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Post by nhnancy on Aug 12, 2014 22:13:00 GMT -5
today, I am thinking of you, wondering how things are going for you! Nancy...
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Post by christel on Aug 13, 2014 12:27:41 GMT -5
Since I have failed all the traditional/conservative treatments, I am going to have surgery on Friday for a wound debridement and to hopefully find the source of this unrelenting pain. I was getting some relief with the use of a sleeping pill, but that now also seems to not be working--waking after 4-5 hours of sleep with pain.
More info as I get it..keep praying, please!
Christel
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Post by nhnancy on Aug 13, 2014 21:08:12 GMT -5
ok, Christel, you are in my positive thoughts and prayers, keep your chin up, we will be anxious to hear from you after the surgery and hoping they find something to relieve the pain you are in....Get better, honey! Nancy in NH (((((hugs)))))
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Post by jeffn on Aug 14, 2014 6:20:43 GMT -5
Hopping for some relief for you Christel. Will be thinking of you tomorrow. Update us when you feel up to it.
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Post by christel on Aug 16, 2014 20:25:26 GMT -5
Thanks for all your concern.. Surgery was ok but no specific causes for pain were found.. Maybe the calcified blood vessels could be contributing, but my surgeon's not convinced. Pain is probably worse than ever and I had chills last night and this afternoon. Surgical resident suggested I come in to ER for iv pain meds. (Morphine isn't even doing anything.). I am in hospital now for not only that but to figure out why my hemoglobin is down some more to 8.4 from 9.7 (after that eruption in my garage and laundry room). I am going to be here for a few days to figure out what the heck is going on! Man, this truly is going from bad to worse... More drama as it becomes available!!
Christel
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