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About jread

  • Birthday 07/27/1979

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    Austin, TX

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  1. So, this morning she woke up with a fever of 104.4, which was pretty scary to say the least. She hasn't been above (or even near) 104 since around December, so it was quite defeating to see her body temperature get so out of control after months of remaining low-grade at worst. I immediately got the sheets/blankets off of her and turned on the fan. I felt around her body to check if she was sweating and there was not a DROP of sweat anywhere on her. Her skin was red and flushed on her face, head, neck, chest and arms, and was burning hot to the touch. Even the whites of her eyes were very red. I got a wet rag and started wiping her down, letting the water evaporate under the fan and trying to simulate the way sweating would work. Within 10-minutes she was down to 103.5 and another 20-minutes she was down to 103. At this point she was tired of having a wet rag on her so she decided to get up and try to drink some water, etc. Her temperature continued to fluctuate throughout the day but generally stayed between 101.8-102.3. Right now it is around 101.4 in our dark, cool living room. We have an appointment with a neurologist next Tuesday and hopefully we can start working on figuring this out. I honestly do think that she is completely unable to sweat or cool herself down, which results in this hyperthermia-like state she can get into. It also seems to be greatly affected by times when she is anxious, excited or stressed, further pointing to something nervous-system related. I will let you guys know what we find out (if anything).
  2. Was your fever during the cancer/abscess, or was it after that? See, that is the one thing that throws me off as well, though like you said, it affects everyone differently. However, there are common things that most people on here have (bp issues, fainting, etc.) that my wife does not have now but did have in the very beginning. It is really hard to say. Some of the replies about nutrition have me curious as she constantly craves sodium (she even eats bouillon cubes sometimes, ick) and her potassium was always low in the hospital. It seems that maintaining sodium/potassium levels are issues for people with dysautonomia. Also, when her fever is higher her neurological issues are more pronounced: she gets kind of jittery and has trouble with fine motor skills (drops things from her hands more), and her neuropathy pain tends to get worse. Oddly enough, it does not seem to affect her heart rate (sometimes she'll be running 115 bpm with a low fever, and 85 bpm with a fever near 103). It is all very frustrating, and since the doctors have seemed to stop caring about what is causing it, I feel like it is my duty to keep searching until I find an answer. The stance from the doctors is, "We have ruled out everything that can kill her, so this should probably run a benign course in the end." And while it is true that they have tested her for everything horrible and nasty, there is still no answer and that's something that I cannot live with. My degrees are in computer science, and for us everything is a 1 or a 0. There is *always* a reason for everything. I think we are going to start by seeing a neurologist, and then also see a rheumatologist to look into autoimmune diseases. I do think that one of these (or a combination of the two) is the source of the fever. We know for sure that it is not "tumor fever" because her cancer is in remission, and we know that it is not an "infectious" fever because she's had an exhaustive workup for every infection they can think of. Plus, this has been going on for 6-months and I don't know of any infection that would run for 6-months without eventually revealing itself and/or getting much worse. Further, it does not behave like an fever from an infection at all: she doesn't get lethargic or light-headed, her skin doesn't get clammy, there is no sweating or chills, she just simply "heats up" and her skin flushes and becomes very hot to the touch. I want to thank each and every one of you for your replies so far... every little bit of information helps. I can't imagine being in this situation back in the days before the Internet!
  3. Something I have noticed recently: if she is hungry, the fever is worse. As soon as she eats, though, it starts dropping almost immediately. Is hunger a "trigger" for any of you?
  4. It is very interesting that you ask this question, because yes, she does still have it. We actually went to her pre-op appointment this morning as she is scheduled to have it removed next Wednesday. Now I'm quite curious about your reply because her doctor and I briefly talked about the possibility that the port-a-cath could be part of the problem. It has always been uncomfortable for her, and has even caused shooting pains at times as if it was pinching a nerve or something. Also, a few of her CT scans showed fluid buildup around the port, as if her body was rejecting it and trying to "get rid of it" since it is a foreign object. Her oncologist considered having it removed mid-treatment just to see if it helped matters, but my wife didn't want to deal with going through chemo without using a port so that idea was short lived. They have kept a close eye on it to make sure it did not get infected, and so far it doesn't seem like it has been (no abnormal swelling and nothing in her blood cultures). Apparently when they get infected, you *know* they are infected. Anyway, looking forward to seeing what you have to say about it. She did have fever before the port was implanted (which was only two days before she started chemo), but things were a lot worse after it was there.
  5. Wow, so many wonderful replies and great information! You truly are a great group of people and I appreciate all your kind words. As for the question about whether or not I have looked into mast cell disorders, I have briefly but I did not see any mention of fever so I moved on. I will try to look into it a little further and see what I can find. I guess the reason I think that her fever is autonomic and not inflammatory in nature (as it would be in something like auto-immune disease) is that it does not really respond to fever-reducing medication at all. Inflammatory types of fever typically respond to steroids or other non-steroidals like naproxyn, etc. Two drugs I have seen that work for autonomic fever are propranolol and morphine. One of the doctors did try propranolol on her but it did nothing. However, she was on morphine for pain when at MD Anderson and her fever did go away for a week or two while she was there. But, she was also on naproxyn at the time (which the hospitals here were not using), so it's hard to say which one did the trick.
  6. Thanks for all the great replies and information! Interesting to read about another person who had bad reactions to ABVD. Everyone seemed perplexed by how it affected my wife, even other Hodgkin's patients. ABVD is supposed to be a relatively "mild" chemo regimen, but it sure wreaked havoc on her from day one. As for IVIG, she has had that a few times actually. Her oncologist gave her an infusion her first day in ICU since she had no idea what else to do. She told me that IVIG is sometimes useful for mystery fevers, etc. She was even considering plasmapheresis at one point (and it is still in the play book). We may apply to the program in Maryland just to see what happens. Her symptoms match so many things, but not quite "exactly" like those conditions. It makes it so hard to try to pinpoint what is wrong. However, dysautonomia is something we have not looked into so I thought it was worth a try. As was mentioned, though, the spiking fevers are not typical even for this condition. Also, I have measured her blood pressure and heart rate sitting vs. standing and there is hardly any change, so I don't think it is POTS or anything, but who knows for sure. She definitely has not had a tilt test or anything like that yet.
  7. Chaos, thank you very much for your reply and well-wishes As for our daughter, she had to go live with my parents (5-hours away) during all this since my wife has been in the hospital almost the entire time. They brought her to see us in the hospital as often as they could, but it has been very hard. At this point she has lived with them longer than she has lived with us. We are hoping to bring her back home very soon once my wife's daily radiation treatments are done. We also have to figure out a daycare situation since my wife would not be able to take care of her alone once I have to go back to work. As for the dysautonomia info, I appreciate it very much. I had no idea of the link between CFS and autonomic issues, and it does seem that postpartum definitely had something to do with it. I also truly think that the chemotherapy is what really sent her over the deep end, as she really went downhill after the first dose.
  8. My wife has unfortunately been a "medical mystery" for the last 6-months, and I have been trying my best to figure out what is going on with her. The story is a long one, but I want to provide all the information that I can: My wife's past history includes having mono when she was 19, and was later diagnosed with CFS which would flare up from time to time. She also had a thyroidectomy a few years ago and is on hormone replacement pills. She gave birth to our daughter last May and everything went extremely well. In the months after she had lost quite a bit of weight and began feeling tired all the time, as well has having trouble controlling her body temperature (sometimes she felt too hot and would wake up drenched in sweat, and other times she would be so cold that she'd go outside in 105-degree weather in a sweater just to warm up). We attributed all these things to postpartum (losing weight, hormonal imbalances, etc.). Around early September she started feeling worse and would feel dizzy, like she was going to pass out, especially after going up the stairs to our bedroom. One night she was brushing her teeth and said it felt like "all the blood rushed out of her head" and she thought she was going to faint. She immediately sat down on the bed and we went to sleep. The next morning she felt really hot to me, so I took her temperature for the first time and it was around 103-degrees. We then went to the doctor and he tested her for the flu, strep, etc. and all the results were negative. He decided to send her for an x-ray and noticed a "gray area" in her chest. He then sent her for a CT-scan and there was a mass present in her chest. After that she had a biopsy and we discovered that she had Hodgkin's Lymphoma, a type of cancer in the lymphatic system. This, of course, was terrifying as we had a 4-month-old baby and now we find out she has cancer. The good thing is that Hodgkin's is very treatable and has a high survival rate, so the outlook was good. We were set up with an oncologist who laid out a plan for chemotherapy, got a port-a-cath implanted, and got started on treatment. In the meantime, the fevers would not stop no matter what medication they tried, and were spiking over 104-degrees at times. So, she went in for her first dose of chemo, can home that afternoon and all was well until the next morning when basically all **** broke loose: The next morning she woke up with a high fever (104.4), and her hands were shaking and hard for her control. It was quite strange. We contacted the oncologist and she said she had "never heard of that" and that we needed to "go to the ER and be evaluated by a neurologist". So we went to the ER and they did an MRI of her brain and spine, both of which came back perfectly normal. They were worried about the fever, though, so they admitted her to the hospital to test her for infections, etc. This was on a Sunday night, and Monday she was worse. She was having trouble walking to the bathroom and back (her legs were shaking really badly) and eventually they put a catheter in so she could stay in bed. In the meantime they could not find an infection so they assumed the cancer was causing the fever (lymphoma is notorious for this). They gave her every type of drug they could think of: tylenol, indocin, high-doses of steroids, etc. and nothing touched the fever. By Tuesday night she was at a temp of 104.4 so they brought her down to intermediate care. By the time she was there, her temp was up to 105.6. The only thing they could think of was to put her on a cooling blanket to physically cool her like they would with a hyperthermia patient. The cooling blanket worked, but it was quite miserable for her as you can imagine. By this point she was on so many drugs that she was out of it anyway. The next morning things were no better and she went down to ICU where she spent a week. Physical Therapy would come in and try to stand her up, but she was so shaky and her heart rate would jump up to nearly 200bpm when they tried (her resting rate was in the 140s-150s). Magically, she got better soon after and went back to intermediate care, and then to a room. While she was alert and everything, she still had fever that they could not control without ice packs, etc. and still had high heart rate. She also began to have quickly-worsening neuropathy to the point where she could not walk anymore, and her feet became so painful that she was in tears just from the sheet touching them. After 5-weeks in the hospital, she went to a rehabilitation hospital where they were going to work on getting her to walk again. She was there for 4-weeks and made great improvement physically, though she still had the fever/heart rate issues the entire time. The doctors kept doing more tests: spinal tap, bone marrow biopsies, CT-scans, etc. and everything was negative. Also, the good news was that the cancer was responding extremely well to chemo and every scan they did showed great improvement. This was especially puzzling the doctors because if the cancer was going away so quickly, the symptoms (fever, etc.) should have completely disappeared by that point. She was discharged to go home in mid-December and it went well for the first few days. She was still not able to walk or go up the stairs, but she could get around with a walker/wheelchair. We had therapists coming by for home visits as well throughout the week to work on getting her stronger. Then, about a week after she got home, her mom called me and said that the therapist was very worried. My wife's temp was around 104 and her heart rate was almost 160. I called the oncologist who told us to go back to the hospital, and that she would arrange for us to go to MD Anderson (top cancer hospital in the country) to see if they could help. She said she was basically out of ideas and didn't know what else to do (I admire her for still trying her best to help, though). So, we spent 3-weeks at MD Anderson and saw some truly brilliant doctors who did even more testing. They were also baffled by the fevers and heart rate, saying that they have never seen Hodgkin's act like this, and they have pretty much seen it all. They even did her pathology over again to make sure she was correctly diagnosed in the first place (she was). They had their rheumatologists come in and test her for autoimmune diseases like Lupus, Still's Disease, etc. and found nothing. They also did and EEG/EKG of the heart and found no problems, just sinus tachycardia that seemed to be there for no reason. We spent Christmas and New Years there, which sucked, but at least they were able to rule out a lot more. A neurologist came by and did many tests and said that while many people undergoing chemotherapy end up with some neuropathy, he had never seen it this severe and especially not after the very first dose. His opinion was that she had some sort of "preexisting condition that was aggravated by the cancer and/or chemotherapy" (I think he's right). By this point she needed more physical therapy, so we went back to Austin and she spent another 4-weeks in the rehabilitation hospital. During this time she did well and her fever spikes stayed under 103 mostly. Her heart beat was also more in the 115-120 range. She ended up finishing chemotherapy there and was discharged in mid-February to come home. I was able to get a lot of time off from work, so I came home with her to help her get around the house, etc. Since then, we have hit many milestones: she made it up the stairs for the first time last week and got to sleep in her own bed for the first time in months, she was done with chemo and started radiation (which is easy compared to chemo), and we found out that she is in remission from the cancer! Yes, the cancer is gone, which was the most wonderful news ever! Also, her nerves seem to be regrowing and she doesn't have pain as often or as severe as before. Her fine motor skills also seem to be coming back finally and her handwriting, etc. is really improving. Now, the troubling thing for me is that she STILL spikes fevers daily (up to 102-degrees and even 103 once) and while her heart rate is better (95-105bpm), it is still above normal and still gets up to 120 on occasion. We told her radiation oncologist about it and he said that he has no idea what is causing the fever, but it is obviously not cancer related at all at this point. So, what do we do now? This is obviously something outside of the field of oncology and they have (understandably) thrown their hands up. The rheumatologists found nothing either, and she's seen many infectious disease specialists who said that she does not have an infection of any kind. All MRIs, etc. came back normal. And still, this started with weakness/dizziness, then to high fever, and then after the first dose of chemo severe nerve damage that is still not allowing her to walk, drive or be independent in any way. As for the fever, it is the one that scares me the most. I'm so afraid of it getting too high and me not being able to do anything to help her. As one doctor said, it is like her "thermostat is broken". Her whole face will flush bright red, and sometimes even her arms and chest will have red areas. The strange thing is that where her skin is red it is burning hot, but anything outside of the red area is cool to the touch. The doctors have no idea why that happens. Also, she does not sweat at all when the fever breaks... she just gets hot very quickly (1-2 degrees in literally 20-minutes sometimes), and then it will eventually drop, almost as quickly, but it never goes lower than 99-100 (her temp before all this was typically around 97-degrees). I'm sorry that this is such a long post, but I didn't want to leave anything out (though I probably did). Does ANY of this sound like dysautonomia at all? I have read that it is possible for dysautonomia to not really show up until something "sets it off", such as cancer and/or drugs like chemotherapy. I can say that all this was A LOT worse when she first was diagnosed with cancer, and it is much better now that she's in remission, but it's not gone. If you do think it could be something somewhere in the spectrum of dysautonomia, what kind of specialist should we see about it? Are there any doctors in Texas (preferably the Austin area) that we could visit? Thank you so much for your time and for any suggestions you may have.
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