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 was 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.)
(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, the new family doctor 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 beginnign 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!!
>>
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.
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.