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  #151  
Old Sun Feb 23, 2020, 01:55 AM
Pearl Pearl is offline
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Join Date: Feb 2016
Location: New Jersey
Posts: 18
Quote:
Originally Posted by Meri T. View Post
Hello everyone,

This June will be post transplant 3 years ! Today, my blood counts were good, WBC 5.9 RBC 3.94 Platelets 172
My liver counts are still high, and I have nausea some times, I itch a lot too. I have chronic GVHD skin, liver, stomach, and esophagus. So so hope my GVHD will burn out soon.

I will be moving to Houston this April, looking at insurance now. From an NIS point of view, the US insurance is really hard to navigate, what with premiums and advantages, I totally respect the US people on how you do it. I have stopped working ever since my transplant, I guess my meager savings will just melt off !

However, I am really excited to go. I got my green card 3 years ago, together with my leukemia diagnose, so I decided to do my STC here in Tokyo before heading off. A very good choice. With the NIS it was affordable.

Any any advice is welcome.

Meri
As you probably know there is good news - Houston is home to the MD Anderson Cancer Center. Thee are many places to start and this seems one of the best ones. https://www.mdanderson.org/cancer-ty...-syndrome.html
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  #152  
Old Sun Feb 23, 2020, 06:09 AM
Meri T. Meri T. is offline
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Join Date: Aug 2016
Location: Tokyo, Japan
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MDAnderson

Hello Pearl,
Thank you for the link. MDAnderson is SO BIG! Gosh, I'm a bit intimidated already.
Meri
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Female born 1965, diagnosed MDS RAEB1 in August 2016, watch and wait for 9 months. Sibling match - Stem cell transplant in June 2017. Some GVHD skin, liver, stomach, esophagus.
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  #153  
Old Sun Feb 23, 2020, 08:02 AM
Pearl Pearl is offline
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Join Date: Feb 2016
Location: New Jersey
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Quote:
Originally Posted by Meri T. View Post
Hello Pearl,
Thank you for the link. MDAnderson is SO BIG! Gosh, I'm a bit intimidated already.
Meri
Give them a call and see what happens.
International +001-713-745-0450
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  #154  
Old Thu Mar 12, 2020, 01:17 AM
Meri T. Meri T. is offline
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Join Date: Aug 2016
Location: Tokyo, Japan
Posts: 153
Corona Virus

Thank you Pearl, you're a life saver!

With the corona running around, I think I will self quarantine for 14 days when I reach Houston.
The corona has reached and spread in Tokyo a bit too much, schools are closed (my teenager is whiling away on youtube), employees remote working (my husband is at home on his laptop) and masks are totally sold out.
People are now doing what we have been doing these past years, washing hands, wearing masks, avoiding sick people. So it's so natural for me now.

How is everyone during this time? I hope you keep safe on trips to the hospital.
By the way, my hayfever has really gone. Really gone. I read somewhere of a person who recovered from HIV because he had a transplant for leukemia ! Isn't that cool.
Anyway, where is everyone? Please drop in and let us know how you are dealing with this virus.
Lots of prayers for everyone in the forum.
Meri
__________________
Female born 1965, diagnosed MDS RAEB1 in August 2016, watch and wait for 9 months. Sibling match - Stem cell transplant in June 2017. Some GVHD skin, liver, stomach, esophagus.
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  #155  
Old Wed May 6, 2020, 08:29 PM
bobspez bobspez is offline
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Join Date: Jul 2017
Location: Southern New Jersey, USA
Posts: 13
Hi Meri T,
It's been over two years since I posted on your thread here. I'm sorry your chronic gvhd issues have persisted but I'm hopeful that new ways of fighting chronic gvhd are being developed. I hope your gvhd does improve over time.
I wonder if you have relocated to Houston by now?
The covid 19 has been a strange experience. We are in NJ, the second highest state with Covid cases, after NY. I'm 43 months on watch and wait with CMML and have been fairly stable so definitely will stay indoors for as long as it takes. I read that with a compromised immune system due to blood disorders we are probably 5 to 7 times as vulnerable to the virus as the general population. We have been ordering our groceries from a local store that delivers, and also shipment of non perishable items from Amazon, Target, Walmart and BJ's. My wife dons gloves and uses clorox wipes to wipe down all the items, then washes her hands with the gloves on, and washes them again with gloves off, and uses clorox wipes to wipe off all the doorknobs. It's a bizarre ritual, but we are trying to be as safe as possible.
We participated in a virtual birthday party last night for my cousin, with 10 others plus my cousin and her husband, using Zoom, a sort of SKYPE for multiple users. The party lasted an hour and a half. It occurred to me that maybe this is how people will communicate if we populate the moon or Mars.
I have enjoyed catching up on all your posts. Wishing you the best going forward from here. Good luck.
Quote:
Originally Posted by Meri T. View Post
Thank you Pearl, you're a life saver!

With the corona running around, I think I will self quarantine for 14 days when I reach Houston.
The corona has reached and spread in Tokyo a bit too much, schools are closed (my teenager is whiling away on youtube), employees remote working (my husband is at home on his laptop) and masks are totally sold out.
People are now doing what we have been doing these past years, washing hands, wearing masks, avoiding sick people. So it's so natural for me now.

How is everyone during this time? I hope you keep safe on trips to the hospital.
By the way, my hayfever has really gone. Really gone. I read somewhere of a person who recovered from HIV because he had a transplant for leukemia ! Isn't that cool.
Anyway, where is everyone? Please drop in and let us know how you are dealing with this virus.
Lots of prayers for everyone in the forum.
Meri
__________________
Age 73. April 2016 diagnosed with SMZL (splenic marginal zone b-cell lymphoma). In remission after 8 weekly infusions of Rituxan. Got 4 more weekly Rituxan infusions in Jan., 2019. Sept 2016 diagnosed with CMML-1. Presently on watch and wait.

Last edited by bobspez : Thu May 7, 2020 at 12:05 PM.
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  #156  
Old Sat Jun 20, 2020, 09:27 AM
John T John T is offline
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Join Date: Jan 2018
Location: North Texas
Posts: 2
Hi Meri T, Dallas here and welcome to Texas,

I have been following your posts since my MDS diagnoses. I am now 22 months post transplant.

Let us know how you are doing and how your move went.
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  #157  
Old Wed Jun 24, 2020, 03:31 PM
Meri T. Meri T. is offline
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Join Date: Aug 2016
Location: Tokyo, Japan
Posts: 153
Smile In Houston 3 year post transplant: doing well.

Hello everyone,
The flight Tokyo-Houston was great, 20 passengers in a 400 seat plane !
Houston is wonderful, the space, the food, the beef! I am very sure my Hgb is good, with all the beef I have been enjoying.The summer is great, sunny with showers. My skin gvhd has subsided, I used a cream from Walmart, it does wonders.

The corona numbers are a bit alarming though, 5489 cases yesterday in Texas. I flew into the US through the Seattle hub, there was no temperature testing, no distancing at the immigration line!? Tokyo Narita/Haneda airports have obligatory CoV testing for arrivals. They have only under 40 cases/day, but they are still concerned, not as open as over here.
After I arrived in Houston, I did the 14 day self quarantine, and even did the drive in CoV test near my place. I don't take prednisone anymore, so I don't know if that makes me immune compromised or not. I haven't taken any vaccines yet, so maybe I am still compromised.

Bob, thank you for letting us know how your family work with this corona life. it's amazing how you take precautions. Good for both of you.

Pearl, all the hospitals are more on coV patients, so I haven't gotten any appointments yet. My case is not severe enough for an appointment. I only take 2 pills a day, acyclovir for any herpes flareup, and entecovir for prevention of Hep b.

John T. my neighbour in Dallas ! Thank you for the welcome. I hope your posttransplant was less severe than mine. Some people do have just a bit of gvhd, then they move on very well. I have got 3 pairs of sunglasses, the sunshine in Houston is so bright, it hurts my eyes. I do eyedrops at night too.

All in all I am doing very well with my cgvhd. June 2nd was my 3 year post transplant. I congratulated myself with a thick slice of beef, and a box of fresh mangoes !
Meri
__________________
Female born 1965, diagnosed MDS RAEB1 in August 2016, watch and wait for 9 months. Sibling match - Stem cell transplant in June 2017. Some GVHD skin, liver, stomach, esophagus.
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  #158  
Old Sat Jun 27, 2020, 04:58 PM
John T John T is offline
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Join Date: Jan 2018
Location: North Texas
Posts: 2
Quote:
Originally Posted by Meri T. View Post
Hello everyone,
The flight Tokyo-Houston was great, 20 passengers in a 400 seat plane !
Houston is wonderful, the space, the food, the beef! I am very sure my Hgb is good, with all the beef I have been enjoying.The summer is great, sunny with showers. My skin gvhd has subsided, I used a cream from Walmart, it does wonders.

The corona numbers are a bit alarming though, 5489 cases yesterday in Texas. I flew into the US through the Seattle hub, there was no temperature testing, no distancing at the immigration line!? Tokyo Narita/Haneda airports have obligatory CoV testing for arrivals. They have only under 40 cases/day, but they are still concerned, not as open as over here.
After I arrived in Houston, I did the 14 day self quarantine, and even did the drive in CoV test near my place. I don't take prednisone anymore, so I don't know if that makes me immune compromised or not. I haven't taken any vaccines yet, so maybe I am still compromised.

Bob, thank you for letting us know how your family work with this corona life. it's amazing how you take precautions. Good for both of you.

Pearl, all the hospitals are more on coV patients, so I haven't gotten any appointments yet. My case is not severe enough for an appointment. I only take 2 pills a day, acyclovir for any herpes flareup, and entecovir for prevention of Hep b.

John T. my neighbour in Dallas ! Thank you for the welcome. I hope your posttransplant was less severe than mine. Some people do have just a bit of gvhd, then they move on very well. I have got 3 pairs of sunglasses, the sunshine in Houston is so bright, it hurts my eyes. I do eyedrops at night too.

All in all I am doing very well with my cgvhd. June 2nd was my 3 year post transplant. I congratulated myself with a thick slice of beef, and a box of fresh mangoes !
Meri
Hi Meri T.,

I have family I visit in North Houston maybe we can get tother for a beer and a burger sometime. I can highly recommend Goodsons in Tomball.

Even though my transplant was a high resolution matched MUD donor I still have cGVHD. Last year put me in the hospital with kidney failure from which I seem to have completely recovered. Kidney numbers are all normal, still have some elevate liver enzymes and lower than normal rbc and hemoglobin.

All my vaccines except MMR have been completed. My transplant center was Medical City Dallas which was classified by insurance company as a center of excellence along with MD Anderson.
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MDS RAEB-1 since early 2017
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