Tuesday, January 31, 2017

Rosie's Lyme Journey

January 3, 2015 Rosie texts me she feels something funny in her heart. I was in Ithaca with a friend listening to a band at the Dock. She sounded really concerned, so I asked her to have her sister bring her to the ER at Cayuga Medical Center and I would meet her there. When we arrived, they did an EKG and then watched her on a heart monitor for a short while, and said they didn't see anything and it was probably just dehydration or stress.

Apparently, Rosie kept having more episodes of this over the next couple months.

Friday, February 13, 2015 - Rosie was scheduled to get all four of her wisdom teeth out as they were hurting her, at Dr Noren's in Ithaca in the morning. She told me as we were getting ready to go, she said "Mom, I feel that heart thing again" and I said what am I supposed to do, the ER just said it as dehydration or stress. So we go to the office in front of the hospital, and the nurse hooks her up to the EKG monitor, and after a very short time she says "I am sorry honey, we can't do this today, you need to go see a heart doctor ASAP." She prints narrow strips of the ekg, which shows her heart rate at around 180, and wide. Dr Noren actually calls our family doctor's office and explains what was happening and makes us an appointment in two hours. We go to that appointment, and see Dr Loehr, and as we are finishing the appointment, Rosie says I am feeling it again, so he runs to get EKG machine and gets her going out of the fast rhythm and back into it. For some reason they all have to see for themselves...So as we start to set up an appointment with a heart doctor, he realizes Rosie is only 17 years old and can't see local heart doctors. So he said he needed to figure out what to do, and he would call us when he did. So we did a couple of errands and before leaving Ithaca, he calls us and says go to the CMC ER. We go there, and they do an EKG where they see her weird fast rhythm, and put her in a room and hook her up to the monitor, which alarms many, many times. We had our neighbor Dr Murray as our ER doctor, and he came in to tell us about the fast rhythm, and draws us a picture of a heart and says if the rhythm is coming from the top, no big deal, if from the bottom, then it's dangerous. I joke that it's probably the lower part, just our luck. (at some point Rosie's boyfriend John joins us there.) Later, he comes in and says we have two choices of hospitals to go to, Rochester or Syracuse, but if we go to Rochester, I would have to drive her as her insurance would not cover an ambulance farther than the closest one. I said I have heard good things about Rochester, and he said his wife has heart issues and she goes there and that was a good choice. He comes in a short while later and said Rochester didn't have any beds, so we had to go to Syracuse. When they called Syracuse, they said they wanted her by ambulance, not to take a chance driving her, so they called Bangs to bring her there. I drove up ahead of them to Golisano Children's hospital at Upstate Medical, after the ambulance driver told me how to get there.  They took her (and John in the front) to the pediatric ICU unit at Golisano, where she had a room right outside the nurses' station. The ambulance personnel said the ride up was uneventful, she slept most of the way and her heart was fine. In ICU, they hooked her up to a heart monitor, which turns out is portable we learn towards the end of our 5 day stay. I posted on my Facebook where we were, and that she had ventricular tachycardia (the lower part of the heart, the dangerous one.) I slept in the bed room with her (without my CPAP so little sleep, while John had to sleep on uncomfortable chairs in the family waiting room. The next morning, I counted how many times in a hour she set off the alarm, 17 times!!  At some point in this morning, my natropathic doctor Deanna Berman, who is my friend, asked why we were there, and when I told her, she said have her tested for Lyme disease, she sees it in her Lyme patients. I requested it done, and they did it. One of the heart doctors came in and told Rosie while I was out, that her Lyme test was positive, but it must be a false positive. Shortly after that, the pediatric electrophysiologist, Dr Byrum, tried giving her an oral medicine to stop the v tach, which did not work. Then they put a medicine in her IV, which did stop it. During the night, her veins where the IV was put in hurt her so bad, and so the nurses switched the medicine to the other arm. The next morning, Sunday, an adult electrophysiologist, Dr Luna Bhatta (from Nepal) that Dr Byrum called in as a consult, since Rosie was close to an adult, came in the room and said "we are going to get that caustic medicine out, and get you on another medicine called flecainide and see if that stops the v tach. Ohhh, wait, I will tell Dr Byrum to do that, you aren't my patient." LOL So, they took out the one medicine from her IV, and then had to watch her take 6 doses, every twelve hours, to make sure it really worked. So we had to stay there a total of five days. Monday, one of Rosie's friend's dad brought her friend and several others along with stuff we needed/wanted (like my CPAP) to visit. When they came to visit, Rosie was sitting on the floor, in protest to being "tethered" to the bed. It's hard being 17 and feeling fine except the heart thing. This is the day we discover that there is a "lending library" where you can check out books, dvds, and games, which was very helpful to pass away the time (not open on weekends, I think.)
In each patient's room, is a big screen that shows the patient's test results, data, etc, and you can touch it to see more information about a test or whatever. At some point, in the first few days, I happened to notice that there was a Lyme test result, which when I clicked on it said positive!! When I asked the heart doctors about it (we had seen a total of four,)  they said it must be a false positive (no such thing), it doesn't affect the heart that way (false,) and you can't get Lyme that time of year (also false -granted it was the polar vortex winter.) Displaying WP_20150218_001.jpg

(That is only picture I could find with positive.)

After getting home on Wednesday (we went in Friday before,) I called our family doctor, Dr Loehr and requested doxycycline for 28 days (per Deanna's recommendation) for Lyme treatment, which he agreed to prescribe. So Rosie took that, and when finished, she had started feeling other symptoms, like joint pain, muscle pain in legs so she couldn't walk far, irritability, fatigue, brain fog, and so when we told the doctor, he said well if the 28 days of doxy didn't make her better, it wasn't Lyme. :-(  Dr Berman had told us from the get-go since it affected her heart right from the start, she needed IV antibiotics, so she told me to try to get in with another family doctor, so I called them often trying to get her in, finally getting an appointment April 9. Meanwhile, I ordered an IGNEX Lyme test, which was also positive (not according to CDC.) When we brought in both Lyme tests which were positive, he looked at them both and said "I don't understand why you wouldn't treat for Lyme disease when you have two positive tests!" He prescribed Cefuroxime Axetil, another oral antibiotic used to treat Lyme disease. We tried that for two weeks, which didn't help, then he put her on Azithromycin, and in June he put her on Amoxicillin. (all separately.) By the beginngin of July, he finally decided to try her on an IV antibiotic, so he ordered a PICC line and Ceftriaxone Sodium in her IV 5 times a week, and weekends she was to flush with heparin, (Steep learning curve on all this, he didn't know he had to order the "installation" of the PICC line, and the first weekend we didn't know she was to flush it each day, but we managed to get through it all.)  She started getting her treatments at the infusion lab at CMC, but after a couple weeks, we were able to get visiting nurses to do it, and eventually she was taught how to do them herself, and visiting nurses would change the dressing once a week. After two months in one arm, the PICC line was so irritated (think blistering, oozing hives) from the dressings, that we asked for it to be switched to the other arm, and they didn't want to at first, but the visiting nurses pressed the  doctor about it, so he agreed. The visiting nurse also tried different dressings and found Sorbaview was the best for her not to get horrible hives. Also learned that she was allergic to chlorohexine during this time.

After four months of IV antibiotics, the doctor and Rosie decided she felt a lot better so he took her off the IV antibiotics in October 2015.

During this time, Dr Byrum (heart doctor) told Rosie to try going off the flecainde several times during this time. The first time he told her to try, he went to a conference (where all the other electrophysiologist were in the country!) and when she tried going off it, after less than 24 hours, she started to feel the v tach again, so we called the heart doctor on call (we hadn't met him yet) and he talked us through getting her back on, and checked on us - talking with us 7 times within 14 hours! When he talked with the other doctors, they said he should have sent us to the ER or their hospital in Syracuse to get back on it, but we were grateful he didn't do that! And were successful at getting her back on. The next time we went to see her heart doctor, we asked to meet this doctor, and we did and thanked him!

After getting off the IV meds, and trying to go off the flecainde and not succeeding, we asked the heart doctor if she could try a cardiac ablation, which had been mentioned since the ICU visit. This is a surgery where they go thru the leg arteries and try to burn the place where the v tach is coming from - an electrical signal sending the wrong signal to beat too fast. I had hoped to have the Nepal doctor do it, as I didn't think Dr Byrum had much experience at doing them as he was a pedatric heart doctor and they don't see v tach in young people usually.  When I called to ask about it, the person who answered the phone said he would do the surgery and I asked if Dr Bhatta could and she said no. Then she called me back shortly after and said surprised, Dr Byrum wants Dr Bhatta to do it! So we scheduled it for Dec. 23rd, but it got changed to Dec. 29 so she could get her team together (maybe the holidays caused an issue?) So Dec. 28th, my friend Aileen, Rosie's boyfriend John, myself, and Rosie drove up to Syracuse and stayed at Ronald McDonald House, and very early the next morning, drove to the hospital in bad road conditions (ice storm kinda) and got Rosie prepped for surgery. The three of us were directed to a waiting room, and one of the nurses in the operation room, would call me every hour or two and say all was going well, Rosie was doing good (knocked out of course) but it was the slowest six hours of my life! They have to map the heart before looking for the location of the v tach. Other people came and went who were also having heart operations, but we kept waiting. Finally they brought her out, and she was in a lot of pain in her heart and whole body, so they gave her morphine for the pain. Dr Bhatta said she was pretty sure she got the spot where the v tach was coming from, they burned it for 9 minutes (not straight) and they couldn't make her heart go back into v tach. They didn't admit her, but she did spend the night. Apparently about 3AM, Rosie flatlined/set the alarm off, and the nurse ran in to see if she was all right. Rosie said right before then, she felt a bunch of people around her bed and two people were touching her. I told her it was probably all the people who were praying and thinking about her. She couldn't sleep after that, afraid it would happen again. She texted me around 6am, and I had just gotten up, and rushed to get ready and walked the 6 blocks to the hospital, and told Aileen to bring my stuff when she opened her eyes for a second. When Dr Bhatta came in, she said that happens sometimes but not to worry about it, and she was sorry the nurse scared her. She was released later that morning.

Dec 31, 2015 - Rosie started to feel v tach again (the birds we called it cause it looked like birds on the monitor) so we went to the ER, where they put her back on flecainde and also a beta blocker for the first time. The ablation didn't work. Talked with Dr Bhatta after this incident, and she said sometimes in the first month v tach occurs but goes away. She researched more about Lyme and v tach and found a case where until the Lyme was healed, no number of ablations helped one patient. She also wanted us to see the doctor who trained her, who had more experience, to try another ablation. She set up for us to see that doctor in Philadelphia,  and have ablation the next day.


January 22, 2016
So, am not sure how I feel about this, but another cardiac ablation is scheduled for Feb 3-4 in Philly for Rosie. Not so sure the doctor knows anything about Lyme disease, even though the person on the phone said she would talk to the doctor about it.

 Ablation postponed till Feb 29 as didn't have everything lined up, including insurance coverage.

Feb 8, 2016 Rosie was able to get two of her wisdom teeth out, even though the oral surgeon was nervous, the heart doctor said it should be fine. He did not want to do all four at once, so the other two were postponed.

February 25, 2016
Just confirmed that Rosie will *not* be going to Philly for another ablation (was supposed to be Monday), insurance won't pay out of state. So, back to drawing board...

Dr Bhatta asked *me* what we should do, and I said only thing I know of is see the electrophysiologist,  Dr Huang,  in Rochester, she knew him and set it up.

March 7, 2016 
Rosie's heart doctor appointment with Dr Huang went well. He is being very thorough which is great! Holding off on another ablation till more tests are done, and he gets more records. So at least two more months before more surgery.
 April 6, 2016
Just watched both Under Our Skin movies at Cineopolis with my dear Rosie Rönke, and makes me so sad and more resolved to somehow come up with the outrageous amount of money to take her to a Lyme literate doctor, so I may start a gofundme for her soon, unless I figure out another way. Initial visit is $850 plus supplement costs...

April 20, 2016 - Went to Rochester to have MRI of heart (second one, first at UofR) and first stress test. Had time in between tests so visited the Susan B Anthony Park.

May 10, 2016 We went to see Dr Huang in Rochester, to hear about the heart MRI results, and he said they found a large scar on her heart, opposite where the ablation was done, and he was concerned about several diseases, sarcoidosis or myocarditis.  He mentioned things like open heart surgery (!?) and said he wanted more tests done, like a PET scan and nuclear study of her heart. I asked if either could be related to Lyme disease, and he said no. Rosie and I left the office in a daze, and went to see some of the lilacs in bloom on a bright sunny beautiful day, trying not to think about what the doctor had just told us. Also couldn't walk too far because it made Rosie's heart go too fast.

May 17, 2016 
Feeling slightly better about Rosie's situation. Family doctor ordering a couple of tests that may confirm sarcoid, long before the nuclear pet scan which is scheduled for June 22. Talked with local heart doctor who thinks waiting over a month will be all right. Please keep her (and her scared mom) in the light, that she stays stable until then! Thanks!!
>> N Glad you got some other tests scheduled and some reassurance a month delay will probably be OK. I understand how scary this is. You're doing a great job of looking out for her, try not to weaken yourself with too much worrying about the worst possible scenarios, though.

>>S If I try to research, I start crying, so I just can't!!!

>>N the diagnosis isn't definite yet, so just don't go there if it upsets you that much. One of the challenges of any journey with a serious illness is knowing how to limit the information you expose yourself to. There may end up being lots of distressing stuff you need to know eventually but you don't need to know that stuff right now.

>>N And my hope is you never will!

S: Rosie is so worried, she was looking up what open heart surgery scars look like and how they do them!!

June 2, 2016 ·
Update on Rosie, her PVCs went away (for 20 days) with a treatment from Dr Deanna, they came back yesterday, hoping a booster treatment will stop them again.

June 20, 2016 · Ithaca, NY ·
I decided it is ok for me to feel worried about rosie's pet scan and nuclear study (on Wed) now...lol been trying to not think about it. But she lost the paperwork telling about the sarcoid diet and the locations so I had to track those down. Bought food to make her in the am, cause she can only have water after 2pm, she planned to not eat after tonight but I said no way, can't eat till lunchtime Wednesday. Whew...

June 21, 2016 We went to stay at a friend's house near Rochester so she could have her PET scan and nuclear study of her heart to check for sarcoid.
June 22, 2016 PET scan of Rosie's heart, to check for sarcoidosis.

June 24, 2016 I started a gofundme after calling Dr Daniel Cameron's office and asking the cost of a visit. It was $850 for the first, and mostly $300 after, and they had appointments the next week! I had researched and talked with various people which doctors they recommended and it as a very difficult decision to make, as some many people had various opinions! None of them had experience with heart issues, which made it harder. After raising enough for the first visit (it was a 9 hour round trip drive, as well, so needed money for fuel and meals), I made an appointment on July 7, 2016.

June 30, 2016 -Rosie took a friend with her to the ER in the middle of the night, cause she was feeling v tach, but they said all was ok, and follow up with heart doctor. (I missed this visit, she didn't call me. This was around the time Rosie moved out of the house I think.)

July7, 2016
Doctor is treating Rosie based on her symptoms, for Lyme and co-infection Babesia, with two oral meds. He is very knowledgeable about Lyme disease and co-infection, and has a sense of humor to boot! Nurse was also knowledgeable! He doesn't know much about the heart and related symptoms, says oddball case, but thinks we can get Rosie better (when I asked if we could, he said "in this life!?) Lol We are to go back monthly, follow ups are $300, ugh. Hoping her insurance might reimburse at least some. Long trip, started at eight am, back at 10:30pm.

Aug 4, 2016 - Next visit with Dr Cameron. He asks her to fill out a chart with her symptoms, how bad they are, and compares them to the previous month.

We went in September, October, November and December. He kept her on both meds for the six months, and the last two months her symptoms were almost gone. In October, she had another heart MRI and we saw her heart doctor, who said her "scar" was the same or slightly smaller and if she wanted and thought she was ready, she could try going off the flecainde. So after the November visit with Dr Cameron, she went off of it cold turkey, and could feel her body and heart adjusting to not having the medicine. In December, Dr Cameron said he thinks she is better, and she can go one at a time off the other medicines. She was able to get off all of them, the beta blocker last and slower than the rest. That lasted two and a half weeks,

January 11, 2017 Rosie had her appointment to get her last two wisdom teeth out, and the procedure went fine. That night however, Rosie started to feel v tach again, but hoped it would go away. Friday night, she finally told me she had been feeling it for two days, and after she was done work, we went to the ER. There they said it was higher than it had been before, and ended up admitting her to make sure the beta blocker they put her back on was keeping the v tach away.

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