Re: mito cardiologist?

[Guest guest]

Thanks Joanne,

Her pacemaker was infected last February (and one of her leads had worn

through) so she had it excised via laser at the Heart Hospital - and had a

temp. pacemaker (blue wire in her jugular with an external generator) for 2

months. They put in a new state-of-the-art pacemaker (Medtronic Enrhythm),

and consequently took it out 2 months later during her open-heart surgery in

July. She has an epicardial pacemaker this time (leads sewn to the outside of

her heart) in hopes that keeping stuff out of her heart will prevent further

vegitative growth. She had multiple ablations before and after her first

pacemaker was implanted (starting at age 15). The third round of ablative

surgeries resulted in an ablated sinus node - so her heart was in a junctional

rhythm that caused her heart to stop (thus the pacemaker) yet also sped up

to 350 (as captured on the heart monitor). I had never seen someone pass out

while lying down before. The cardiologist she saw in Oklahoma (the " father of

ablation " - since he invented it) told us that he believed the arrhythmias/

tacchycardias/abberrant heart rhythms were actually caused hormonally, but

he had not had any success in finding an endocrinologist to work with him.

We were talking to the neurology director here (@ MGH) and she said there is

so much they don't know, but that they are looking at the impact of

hormones in mito/metabolic diseases.

As far as the barium issues being discussed, Bonnie too, had tremendous

problems with retaining barium (over 2 months). She was transfered from one

hospital to the Mayo hospital in Phx, and they couldn't evaluate her because

of the barium she'd gotten 2 months prior. A resident put her on a mineral oil

drip through her NG tube, but the attending (2 days later) told Bonnie that

was a terrible idea because it easily leads to pneumonia (the oil slips up the

outside of the tube and gets aspirated into the lungs). When she was

transfered back, the docs tube fed her Go-Lightly round the clock along with

5 daily doses of Miralax, and up to 12 Ducolax a day. It was horrible, and

didn't do much at all. Five months later, she had a loop ileostomy put in so

she could finally eat a little (YAY!). Her colon hasn't worked now for almost 3

years. I guess part of the work-up while she's here in Boston will be to

determine if she should still have a non-working colon - or if it should be

removed.

I have to say, being here is bringing back a flood of memories (I grew up

in Lexington), especially this bitter, thigh-tingling, frigid wind .

-Lyn (Bonnie's Mummy)

www.caringbridge.org/az/bonniemarie

Hi ,

I didn't realize Bonnie Marie had a cardiac pacemeker. So does our daughter

(16). Have they looked at the pacer in terms of harboring infection?

Every time has majoe infection issues, this is evaluated. Also, why

haven't they been interrogatign her pacer? 's is interrogated at least

every 4-6 months. She is actually on her second pacer as her generator

failed about 6 years ago.

I'm sorry that I don't know any of the docs in Boston. We do now have a good

one in Milwaukee that is very knowledgeable of mito.

Marie Codier lynmarieco@...> wrote:

Hi,

I wrote awhile back regarding my daughter who had been in the hospital

for 11 months. We flew (via Air Evac) from Phoenix to Boston so that the mito

docs at MGH and NEMC could help her persistant bacteremia. Two days ago

she cultured positive again, even while on she was getting IV Pimaxin every

eight hours. Her pacemaker hasn't been interrogated in a long time - and

since she has heart issues they are looking at having someone here take a

look. Does anyone know of a cardiologist who has privaledges at MGH (Mass

General Hosp) who deals with mito patients?

Thanks for all the helpful info folks have passed on to us. We are hoping

that the docs here can get my daughter out of this cycle of blood infections,

heart infections, and electrolyte imbalances. Once they resolve her dysmotility

issues (if that is possible) they hope to eliminate the source of these

infections.

Again, thanks,

Lyn (Bonnie's Mummy)

www.caringbridge.org/az/bonniemarie

Marie Codier

Early Childhood Music & Movement Specialist

Marie Codier

Early Childhood Music & Movement Specialist

[Guest guest]

Hi ,

I would love to hear what you learn in regards to hormones and miot. My goirls

are both having major issues in this regard and we can't seem to get anywhere in

terms of treatment or understanding. lies' thyroid function has been lousy

for almost two years with NO treatment. The current thought is metabolic X

syndrome, but still nto treamtnet. And, KRisten is startign to show similar

signs/symptoms.

I'm hoping you will get some cardiac answers as well. That is another area

where we have been floundering. I think they finally found a solution to all of

's bradycardia alarms (in spite of having a pacer because of two

different delay settings). I really don't like heart rates down to 20!!!

Hoping you obtain concrete answers and treatment recommendations while in

Boston.

Joanne Kocourek (mom to , lies, and )

visit us at: http://www.caringbridge.org/il/annakris