Back Home, some questions

[paulaespada]

Hi!

We were sent home from Porto to Azores because my husband has achieved what they call stability.

Today he went to consultation and his blood count is:

Platelets - 140
Neutrophils - 1.9
WBC - 2.7
Hb - 12.2

He is doing well and today went to buy walking shoes to start doing some exercise. I notice he is losing muscular mass.

Now some questions are coming to my mind:

1) What is the prognosis? (a person sent me a medicice college appointment in which there is atated that average time of life is 1 year. I didn't have this idea at all. When my husband was hospitalized nurses tell of people living and being all for many years. Even a young lady had a child after her treatment and is good now. Maybe that medical doctor appointment was pointing for the prognostic without treatment. What do you think?)

2) We're entering in flu and cold season. If someone get it at home what will my husband supose to do? (My 21 years old son had cold and fever some days ago and my husband stayed well. I made him use a mask at home)

3) Until today I had the idea that this is a rare condition. About 1:1 000 000. The today I knew that only in this island (about 500 000 people) there are 5 cases. What are your opinion?

As always, I'm thankful for this forum.

Wishing you all the best.

Paula Espada

[Marlene]

Hi Paula,

Regarding colds and flu....If I got a cold, I would be the one to wear a mask when John was around. I feel it's better for me to wear it to keep the germs as contained as possible. I would sleep with one on. Change it daily. He never caught a cold from me. Lots of hand washing by everyone and cleaning door knobs, phone, etc with peroxide or alcohol wipes. We also have an air purifier with UV light that kill germs and mold.

I think in the early stages of recovery, stay out grocery stores, crowded public place and wear a mask during peak cold/flu season. Keep the nasal passages moist. In the winter, the dry heat causes the nasal passges to dry out more. We do use a humidifier in the winter. Also, John coats his nasal passages with Vitamin E oil to keep them from cracking and drying out. Dry nasal passages provide an easy entry for germs to get into your system. Do not do yard work without a mask. Way too many molds in the soil and leaves.

With his ANC, he should be able to fight off any infection. But with that being said, we still take precautions because an illness can take a toll on his counts and stresses his bone marrow.

I have a small arsenal of natural approaches I use when he has gotten a cold or the flu. They seem to shorten the duration and have kept it from going to his chest.

Here's what we do when he feels something coming on:

1 - Elderberry syrup and/or tea. Elderberry has been used for years to keep viruses from replicating. In USA, New Chapter has a viral block formula that we use.

2 - Zinc lozenges

3 - Vitamin C. 2000 - 4000 mg/day

4 - Therapeutic grade essential oils. These vary depending on what I'm trying to do. Some help with congetion, some with coughs, etc.

5 - Use a good probiotic to keep the gut healthy.

On the issue of prognosis....I do think that statistic applies to someone who's AA is not treated and contiues to progess. John is six and half years out from treatment and there are many others leading long healthy lives.

Marlene

[Connie]

All great advise from Marlene. I will only add this little bit. I keep paper towels in the bathrooms for people to dry their hands with and use antibacterial hand soaps. I also wear gloves. I wear them to Church (hand shaking) and to open doors. I also carry around single Wet Wipes hand wipes for grocery carts, doors, etc.
I hope this helps some.
Oh, I also do get flu shots. They seem to help and my Hem. seemed to think better to prevent flu (if possible) than for my body to deal with the effects of flu. Not everyone agrees with the flu shot, but it has helped me.
Good luck! I was diagnosed in 2000 and am doing pretty good now.
Connie

[paulaespada]

Originally Posted by Marlene

Hi Paula,

Regarding colds and flu....If I got a cold, I would be the one to wear a mask when John was around. I feel it's better for me to wear it to keep the germs as contained as possible. I would sleep with one on. Change it daily. He never caught a cold from me. Lots of hand washing by everyone and cleaning door knobs, phone, etc with peroxide or alcohol wipes. We also have an air purifier with UV light that kill germs and mold.

I think in the early stages of recovery, stay out grocery stores, crowded public place and wear a mask during peak cold/flu season. Keep the nasal passages moist. In the winter, the dry heat causes the nasal passges to dry out more. We do use a humidifier in the winter. Also, John coats his nasal passages with Vitamin E oil to keep them from cracking and drying out. Dry nasal passages provide an easy entry for germs to get into your system. Do not do yard work without a mask. Way too many molds in the soil and leaves.

With his ANC, he should be able to fight off any infection. But with that being said, we still take precautions because an illness can take a toll on his counts and stresses his bone marrow.

I have a small arsenal of natural approaches I use when he has gotten a cold or the flu. They seem to shorten the duration and have kept it from going to his chest.

Here's what we do when he feels something coming on:

1 - Elderberry syrup and/or tea. Elderberry has been used for years to keep viruses from replicating. In USA, New Chapter has a viral block formula that we use.

2 - Zinc lozenges

3 - Vitamin C. 2000 - 4000 mg/day

4 - Therapeutic grade essential oils. These vary depending on what I'm trying to do. Some help with congetion, some with coughs, etc.

5 - Use a good probiotic to keep the gut healthy.

On the issue of prognosis....I do think that statistic applies to someone who's AA is not treated and contiues to progess. John is six and half years out from treatment and there are many others leading long healthy lives.

Marlene

Hi Marlene,

Thank you very much for your answer.
For some reason, I post this entry but was not able to find it.

Your recommendationg are precious, and even thought I can't find some things here as elderberry I will look for others.

Can you recommend me a good probiotic?

Again, thank you very much and I'm sorry for not having seen it before.

I can tell you that Jorge went to my son's cold without problem.

His platelets are now 140, neutrophils 1.8 and WBC 2.7

God bless you!

[paulaespada]

Originally Posted by Connie

All great advise from Marlene. I will only add this little bit. I keep paper towels in the bathrooms for people to dry their hands with and use antibacterial hand soaps. I also wear gloves. I wear them to Church (hand shaking) and to open doors. I also carry around single Wet Wipes hand wipes for grocery carts, doors, etc.
I hope this helps some.
Oh, I also do get flu shots. They seem to help and my Hem. seemed to think better to prevent flu (if possible) than for my body to deal with the effects of flu. Not everyone agrees with the flu shot, but it has helped me.
Good luck! I was diagnosed in 2000 and am doing pretty good now.
Connie

Hi Connie!


Thank you very much for your answer and suggestions.

Indeed my husband doctors say he won't have flu shot anymore...

I'll do my best to help him overcome and live a normal life.