Home         Forums  

Go Back   Marrowforums > Bone Marrow Failure Diseases > AA
Register FAQ Search Today's Posts Mark Forums Read

AA Aplastic anemia

Reply
 
Thread Tools Search this Thread
  #1  
Old Wed Oct 1, 2008, 09:07 PM
paulaespada paulaespada is offline
Member
 
Join Date: Mar 2008
Location: Azores, Portugal
Posts: 91
Thumbs up Back Home, some questions

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
__________________
Preview
Paula Espada - wife of Jorge Espada, diagnosed AA in June 2008, ATG, cyclosporine until Janury 2010, relapse and 2nd ATG June 2010
Reply With Quote
  #2  
Old Thu Oct 2, 2008, 10:59 AM
Marlene Marlene is offline
Member
 
Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,341
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
__________________
Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
Reply With Quote
  #3  
Old Thu Oct 2, 2008, 01:50 PM
Connie Connie is offline
Member
 
Join Date: Aug 2006
Location: Kalama, WA
Posts: 1,322
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
__________________
Connie, diagnosed with AA in Nov. of 2000. Had ATG treatment with short remission. Then had ALG treatment in 2001. Am in remission as of 10-2007.
Reply With Quote
  #4  
Old Mon Oct 13, 2008, 06:01 AM
paulaespada paulaespada is offline
Member
 
Join Date: Mar 2008
Location: Azores, Portugal
Posts: 91
Smile

Quote:
Originally Posted by Marlene View Post
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!
__________________
Preview
Paula Espada - wife of Jorge Espada, diagnosed AA in June 2008, ATG, cyclosporine until Janury 2010, relapse and 2nd ATG June 2010
Reply With Quote
  #5  
Old Mon Oct 13, 2008, 06:04 AM
paulaespada paulaespada is offline
Member
 
Join Date: Mar 2008
Location: Azores, Portugal
Posts: 91
Smile

Quote:
Originally Posted by Connie View Post
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.
__________________
Preview
Paula Espada - wife of Jorge Espada, diagnosed AA in June 2008, ATG, cyclosporine until Janury 2010, relapse and 2nd ATG June 2010
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
Questions, Questions, Questions!! MrHandy2013 MDS 2 Sun May 26, 2013 07:35 PM
6 year old son newly dignosed... Questions Bolinger Pediatrics 15 Wed May 8, 2013 03:59 PM
Home BUT .... Al's Wife MDS 10 Thu Aug 16, 2012 12:34 AM
low back pain marmab Drugs and Drug Treatments 10 Thu Jun 7, 2012 07:47 AM
aunt took mom from nursing home Kathyete Questions and Answers 3 Thu May 1, 2008 10:37 AM


All times are GMT -4. The time now is 08:11 AM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2019, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright 2006-2019 Marrowforums.org