Re: If things get critical

[Guest guest]

Louise,

I have had ongoing pain in the lower left side of my chest. I never

used to experience pain. All of January was bad for me. Infection

and Avelox, another infection, Zithromycin. All through that period,

pain. I carry a prescription of Avelox with me at all times, once the

snow melts, high humidity, smog, heat, the same will happen again,

usually in March/April every year.

Karin

>

> , I am saddened to learn of all you're experiencing.

> Is there anyway you could come to the U.S. for treatment?

> There are excellent doctors in the Detroit & Ann Arbor, MI areas.

> I know there are waiting lists for organs but perhaps another

doctor's evaluation could hasten the process. I shall pray

specifically for God to open a door so that you might receive the lung

transplant.

> May God bless you as you go through this. My doctor has talked of

lung resectioning, but said that for me, it would be last option due

to my other health issues. God knows and for that I am thankful.

> I have a question also. Do you or any of the other ladies deal with

on-going pain in the lung area? Mine began almost a year ago when I

was hospitalized with asthma & pneumonia and hasn't left. It worsens

when I'm in a full blown infection, but never goes completely away. My

doctor has told me this is something I will most likely have to learn

to live with.

> Thank you for listening.

> Louise

> Re: If things get critical/ H.

>

>

>

> Dear Karin,

>

> I agree that this is a miracle and was wonderful news on CTV. I

was very happy for this young woman and her young family and husband.

>

> Unfortunately, respirologists in Toronto never did a thing to help

me and its exceedingly frustrating. It seems like they pick and choose

whom they want to help. I hate to sound bitter, but after flying to

Toronto for appointments on four occasions and never getting anywhere

and having worsening lung function its extremely frustrating. Always

promises to follow up, but once back in Nova Scotia they choose not to

follow up. Always promises for a treatment plan, but that too never

happened. I'm stuck between a rock and a stone with my lungs and with

lung transplant. Everyone says that I should be on the transplant list

now according to my FEV1 and worsening CT-scans, but nothing ever gets

done. Dr. Singer of the Toronto Lung Transplant program had the nerve

to tell my father and I that lung infections were no big deal! Yeah,

right. These infections have lead to respiratory failure, O2 24/7, and

have landed me in the ICU , and now I'm on IV antibiotics monthly.

This was the only reason we were given that I'm not on and the lung

transplant list. During my transplant assessment in Toronto my FEV1

was 26% and FVC was at 27%, my CT-scans were awful, and some other

tests were far from normal. the team more or less acted as though

these numbers, etc were of no concern. Toronto has never ever done

anything to help me. Wasted trips. Promises broken. Treatment plans

never stared by the doctors that promised to create them. One

disappointment after another. If it were not for Dr. Haase and

my family doctor Doran, I'd likely not be sending this

message. They are doing their best to keep me alive with little help

from respirologist in Toronto or Halifax

>

> Toronto might have the largest lung transplant program in Canada,

but this team certainly does not help everyone. My family and I have

spent a mint trying to get me to and from Toronto, for in flight 02,

for 02 during my stay in Toronto, etc and not to mention cost of

flying elsewhere in Canada. If it were not for The service groups and

church it would have been much harder to make these trips. Every time,

I go and have to come back and with no new information I feel that I'm

letting down everyone who has tried to help me to Toronto, etc.

>

> I'm hoping to give Edmonton a try ad hope to get the new lungs

that I desperately need in Alberta or at least have a fair chancw of

being listed. Hoping for good communication, as well, as this was

lacking amongst St.Mike's and Toronton General.

>

> Anyhow, sorry for the vent, but its certainly sums up how I feel

about my treatment.

>

> Hugs:0)

> Liz

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> Pre-Lung Transplant Journey - For updates please visit my carepage

and leave a message. Thank you! )

> carepages.com name: maryelizabethholt

>

> Please watch: Live Life Then Give Life! - UK

> http://www.youtube.com/watch?v=Nz33i6prkuQ.

>

> " Don't take your organs to Heaven, heaven knows we need them here. "

>

>

>

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