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RE: Husband sees the light

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I am sure you are relieved. My son will not do it in his abdomen but using his

love handles we get 30cc per site with NO problem. He says it is MUCH less

painful than in his abdomen or thighs. We do not rotate much as we have been

advised that the body makes a natural pocket to recieve the meds over time. He

has not had any problem with thickening in the area after 5 years. I am

impressed.

BARBIE

________________________________

From: Ursula Holleman <uahollem@...>

group < >

Sent: Tue, February 1, 2011 6:49:48 PM

Subject: Husband sees the light

So for those of you who have been on here since the dark ages you will be

pleasantly pleased to hear that after 13 years in the PID tornado and 9

years diagnosed CVID himself, my husband, Macey's dad, is finally about to

start infusions.

Everyone hear the angels singing?

For those who are newer, my husband has been symptomatic of CVID since he

was 7. He grew up seeing specialists and being sick but everyone just said

he was a frail child and he had asthma. Lots of meds and lots of time out

of school and no sports. When Macey was diagnosed I repeatedly asked him to

be tested but he refused. He finally was tested 5 years later and infusions

were recommended along with maintenance antibiotics. By that time though he

had seen Macey have repeated life threatening reactions and refused to take

the chance. He was not having the same life threatening or severe

infections she did. He did agree to start the antibiotics. He stayed on

those for about 6 years but stopped them about 3 years ago. He has had his

levels repeated and they're always low but never any more detailed testing.

Recently he started with a new internist who because of his history wanted

to repeat a chest CT done in 2002. It showed the same scarring (probably

due to repeated infections as a child) and some granulomas. But none had

grown in size. The new doc did not know of any immunologists nearby and

asked if we did so I shot off an email to Macey's immunologist who promptly

answered with a name. This was before the holidays and just last week they

called back and said the referral was set up. For this week.

We had to go up to Atlanta (turned out to be exactly 100 miles) and we first

met in her office to talk and then she examined him in a treatment room.

She did spirometry testing in her office which was good in the 90% range.

She told him that his best bet was subq treatment and asked if he was open

to the idea. He said yes.

She said that the insurance would not approve the treatments on pneumococcal

levels so old. His only Ig low is IgM and since it's not replaced by

infusions we would need to prove the antibody deficiency was still there.

So she gave him a pneumovax shot and gave us a slip to have pre labs done.

She also ordered a

CBC,

Immunoglobulins,

Tetanus antibody level,

Lymphocyte subset panel 2 (Absolute Lymphocytes, Percentage CD3, Absolute

CD3, Percentage CD4, Absolute CD4, Percentage CD8, CD4/CD8 Ratio

(calculated), Percentage CD19, Absolute CD19)

pneumococcal levels (Serotypes 1, 3, 4, 8, 9 (9V), 12 (12F), 14, 19 (19F),

23 (23F), 26 (6B), 51 (7F), 56 (18C))

Also the day he goes back in March he has a CT of his sinuses set up at the

hospital near her. We will then meet with her that afternoon and see how

things look. She said these blood tests should be what insurance needs to

approve the infusions. So I thought I would mention them since many wonder

just what it takes to get approved or diagnosed.

A miracle could happen and the antibody levels could come back ok. But

since the others were run as an adult and were really bad (even worse than

Macey's) I doubt it.

I'm really thinking this is going to do alot for him. He's going to need

alot of product though. He's twice Macey's size so I foresee 4 needle sites

or infusing twice a week. He is really wanting to do it in his upper arms

and not his stomach (Macey looked at him like he was crazy when he said

that).

This is truly a wonderful thing. I have prayed about this for so many years

and so had to refrain from being a nagging wife. But sooner or later it has

caught up with him and he's lucky he hasn't landed in the hospital from

something really nasty up until now.

Ursula

mom to Macey (15,CVID) and wife to Les (CVID)

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Ursula,

I'm so happy to hear this! You are a good wife for not nagging - such a hard

thing to do :-)

My husband has been on the fence for a long time about treatment too. Our kids'

immunologist in Cincinnati was actually the first doc to test him. He is a

pediatric immunologist so he couldn't treat him, but he gave the test

results (low IgG, severe complement deficiency and non-responder to some

vaccines)and urged him to see an immunologist. Unfortunately the doctor he went

to retired before all of the testing was completed as was dragging his

feet, he hasn't bothered to find a new doc. Since then our immuno has been

harrassing him about getting on treatment and he was finally starting to

consider it. His biggest issue is sinusitis and has had multiple surgeries,

however he wanted to give surgery one last try and had the " balloon " surgery

done. He used to have nearly constant infections, even on prophylaxis, but since

the surgery he's only had two in the last year. I'm not sure what happened, but

for now he's doing well and he's even stopped the rinses and nose sprays. I

think if he starts getting sick again he will probably be ready to try it.

Unfortunately, finding an immunologist in Indiana is pretty much impossible.

says if he does start treatment, he will try the daily injections first to

see if he can manage that way.

Keep us posted, maybe I'll send to Atlanta too :-)

Take care,

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Ursula,

I'm so happy to hear this! You are a good wife for not nagging - such a hard

thing to do :-)

My husband has been on the fence for a long time about treatment too. Our kids'

immunologist in Cincinnati was actually the first doc to test him. He is a

pediatric immunologist so he couldn't treat him, but he gave the test

results (low IgG, severe complement deficiency and non-responder to some

vaccines)and urged him to see an immunologist. Unfortunately the doctor he went

to retired before all of the testing was completed as was dragging his

feet, he hasn't bothered to find a new doc. Since then our immuno has been

harrassing him about getting on treatment and he was finally starting to

consider it. His biggest issue is sinusitis and has had multiple surgeries,

however he wanted to give surgery one last try and had the " balloon " surgery

done. He used to have nearly constant infections, even on prophylaxis, but since

the surgery he's only had two in the last year. I'm not sure what happened, but

for now he's doing well and he's even stopped the rinses and nose sprays. I

think if he starts getting sick again he will probably be ready to try it.

Unfortunately, finding an immunologist in Indiana is pretty much impossible.

says if he does start treatment, he will try the daily injections first to

see if he can manage that way.

Keep us posted, maybe I'll send to Atlanta too :-)

Take care,

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Les spoke to someone at the National convention who did the daily push

medicine and seemed interested. When he mentioned it to Macey he got

another blank stare. She just rolls her eyes when he does these things.

She said she's just waiting until he starts and then she can make fun of

him when he pokes the needles in for the first time and yelps.

Ursula

On Wed, Feb 2, 2011 at 10:11 PM, kristinz4 <kristin-smith@...>wrote:

>

>

> Ursula,

> I'm so happy to hear this! You are a good wife for not nagging - such a

> hard thing to do :-)

>

> My husband has been on the fence for a long time about treatment too. Our

> kids' immunologist in Cincinnati was actually the first doc to test him. He

> is a pediatric immunologist so he couldn't treat him, but he gave the

> test results (low IgG, severe complement deficiency and non-responder to

> some vaccines)and urged him to see an immunologist. Unfortunately the doctor

> he went to retired before all of the testing was completed as was

> dragging his feet, he hasn't bothered to find a new doc. Since then our

> immuno has been harrassing him about getting on treatment and he was finally

> starting to consider it. His biggest issue is sinusitis and has had multiple

> surgeries, however he wanted to give surgery one last try and had the

> " balloon " surgery done. He used to have nearly constant infections, even on

> prophylaxis, but since the surgery he's only had two in the last year. I'm

> not sure what happened, but for now he's doing well and he's even stopped

> the rinses and nose sprays. I think if he starts getting sick again he will

> probably be ready to try it. Unfortunately, finding an immunologist in

> Indiana is pretty much impossible. says if he does start treatment, he

> will try the daily injections first to see if he can manage that way.

>

> Keep us posted, maybe I'll send to Atlanta too :-)

>

> Take care,

>

>

>

>

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Les spoke to someone at the National convention who did the daily push

medicine and seemed interested. When he mentioned it to Macey he got

another blank stare. She just rolls her eyes when he does these things.

She said she's just waiting until he starts and then she can make fun of

him when he pokes the needles in for the first time and yelps.

Ursula

On Wed, Feb 2, 2011 at 10:11 PM, kristinz4 <kristin-smith@...>wrote:

>

>

> Ursula,

> I'm so happy to hear this! You are a good wife for not nagging - such a

> hard thing to do :-)

>

> My husband has been on the fence for a long time about treatment too. Our

> kids' immunologist in Cincinnati was actually the first doc to test him. He

> is a pediatric immunologist so he couldn't treat him, but he gave the

> test results (low IgG, severe complement deficiency and non-responder to

> some vaccines)and urged him to see an immunologist. Unfortunately the doctor

> he went to retired before all of the testing was completed as was

> dragging his feet, he hasn't bothered to find a new doc. Since then our

> immuno has been harrassing him about getting on treatment and he was finally

> starting to consider it. His biggest issue is sinusitis and has had multiple

> surgeries, however he wanted to give surgery one last try and had the

> " balloon " surgery done. He used to have nearly constant infections, even on

> prophylaxis, but since the surgery he's only had two in the last year. I'm

> not sure what happened, but for now he's doing well and he's even stopped

> the rinses and nose sprays. I think if he starts getting sick again he will

> probably be ready to try it. Unfortunately, finding an immunologist in

> Indiana is pretty much impossible. says if he does start treatment, he

> will try the daily injections first to see if he can manage that way.

>

> Keep us posted, maybe I'll send to Atlanta too :-)

>

> Take care,

>

>

>

>

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Ursula,

That is great news! I hope that everything goes well with the follow-up appt

and if needed that there are no issues getting the subq approved and

started.

Mom to Caelan 11 (CVID)

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