Vera's Transplant

[Birgitta-A]

Hi Pam,
How wonderful that your young friend is doing so well ! Hope everything will continue to be OK with him!

[PH Steele]

Are you still at your summer cottage, Birgitta? Sounds lovely and cool from very hot and dry Texas.

Yes, TJ is doing well. His parents are hoping that he can come to his own conclusions about returning to school in the fall and realize that would be a dangerous thing for him to do.

Hope to hear soon that Vera is recovering well since she is out of the hospital.

[Birgitta-A]

Hi Pam,
Hope TJ will recover soon!

Yes, I am staying at my summerhous with my grandchildren. The ticks (I have got one bite this summer ), insects, animals like sheeps, horses, dogs and cats (I have 2 persian cats myself) makes me a little afraid though I love animals. They all have different types of parasites that can make me ill but I hope that I will manage this summer too without any complications.
Kind regards
Birgitta-A

[Vera W]

I have a skin rash all over my body including the palms of my hands. Also some intestinal GVD. I am starting Predisone treatment. Can't keep any food down. I have lost 32 pounds. Feeling puny but counts are solid, WBC is 8! Pam, Heather is home

[flowerlady]

Hi,
Is your friend at M.D.Anderson? They were incredible...it is almost frightening to be so far away from them now...I am in N.E. Georgia since the 21st of July.
Because your friend is young and depending on so many factors I am sure his Dr.'s goal will be to protect him until he is ready. School will wait...maybe winter semester...or after flu season passes! So many temptations for us to ignore...I wish him all the best...our paths have probably crossed at the hospital ATC.

[PH Steele]

Heather, my young friend had his transplant at the Baylor Hospital. I think it is very near MD Anderson. He had to go back to the hospital yesterday due to the rash on his body. Bless his heart. It was such a disappointment for him;though, at this point according to his doctors very manageable. What a roller coaster for all of you as you recover from such an intense procedure. My thoughts and prayers go out to all of you. I know you long for normal and boring.

Coincidentally, I have another young friend, age 24 (Meryl) who will be having her transplant at MD Anderson as soon as a good donor match is found for her. I get her updates from the MD Anderson journal. She is the daughter of a college friend of mine while the young man is the boyfriend of my daughter.

If you need answers to questions or help when you return to Houston, I feel sure the two above mentioned families would be most gracious to help out. E-mail me if you would like their contact information.

Birgitta, I have thought of you as I see a new Steig Larsson book has been released in the US. This is a new one for me: The Girl Who Played with Fire. I think I will enjoy it.

Heather, if you enjoy reading and can concentrate at this time, you might enjoy the Steig Larsson series. The books are intriguing and interesting. They are set in Sweden.

Thoughts and prayers to each of you--Vera, Heather, Birgitta.

[Birgitta-A]

Hi Pam,
Too bad with rash - I suppose it is a GVHD symptom. Hopefully they will manage to treat the rash!

How sad with these young persons who have so dangerous diseases - I am very thankful for the 67 years when I felt OK (though I must have had MDS several years without knowing it).

Hope you like "The Girl Who Played with Fire" as much as the first book - then you can start waiting for the third part where the girl gets her revenge.
Kind regards
Birgitta-A

[PH Steele]

Birgitta, I am looking forward to both of them. I am in a book club. One of them may by my pick when I moderate.

[helen c.]

does anyone have an update on vera

[launch]

I checked with Dennis (Vera's husband), asking how she was doing? I told him our last update was that Vera had intestinal problems and a rash all over her body. He responded today with the following message....

" ...She is doing better and will update as she can..."

[Vera W]

I just spend 45 minutes writing and I lost my post. I am dealing with a lot but I am coming along.

[launch]

I know we're all following Vera, and I received an email with the following update.... and wanted to share... Cindy
-----------------------------------------------------------------------
From Vera's Email, dated 8/18/09 at 5:45pm (ET).

"...It is my intent to do an update and not start reading emails because when the energy goes it gos! I had a grueling appointment Monday, We have been going home for a few days after my Thurs appointment. Had to get up early to get to UCSF, had a nice steroid induced non sleep.They wanted a stool sample (up at 430 am) and fasting apparently some of my 35-40 meds came cause diabetes. Left at 6 got to UC the computers were down Took me 6 hours in there.I was having such a hard time keeping anything down that I think I threw up most of my immune suppressant and the GVH got the better of me. But my gut test had no GVH so it seems to be all external. The Predisone is helping I have had no bloat or weight gain in fact I have lost 40 pounds and it feels good and I am so happy that I went into this transplant healthy as it is a hard road to tow! Last week CMV virus came up on my blood test as present but dormant so I am being treated for that, my glucose is normal my energy is slowly coming back. I think I hold the record for grafting the fastest ever at UCSF which was on the fourth day. I had 2 red transfusions and 2 platelets my platelets got down to 10 now they are between 200 and 300! All of my blood work is on the high normal side but my whites and neuts are higher then normal because of the immune suppressants. I know they are excited about my grafts but they remain guarded. And I have 3 more bags of blood in cold storage! I think I am still as bald as a bald eagle but it will grow .Most of my eye lashes are gone! Thank you for all of the cards and email ls,Thank you Pam.Love to all me..."

[PH Steele]

Vera, it sounds intense, but hang on. Time is all it takes, and you will be so much better. Love and prayers are with you every day!

[Vera W]

Hi all, things are progressing nicely. My rash is going away and with that I feel stronger every day. I was able to get off 3 stomach steriods and lower the prednisone from 100 mlg to 75!!YEAH. Liver is great, kidney ALT dropped in half. I will spend part of my 56th birthday in Clinic Thursday the 27TH, This time last year i wasn't sure about any more birthday,s!! Again your prayers and support are the BEST!!! LOVE V

[Birgitta-A]

Hi Vera,
Congratulations to your recovery!
Kind regards
Birgitta-A

[flowerlady]

Congratulations Vera on your progress and Happiest of Birthdays to you today friend! I will be celebrating your day right along with you!...You go girl! Each day is a day to celebrate the so many miracles that have touched our lives! Hugs to you!

[Neil Cuadra]

Happy Birthday, Vera! I guess you should update your forum signature.

It's great to hear about your progress. Onward and upward!

[squirrellypoo]

Happy birthday vera! Each year I make myself a goal to make this year even better than the one before it. And with the year we've just had, I think that's pretty much in the bag!

I hope you're able to enjoy some cake!

[Vera W]

All is well. The rash is still clearing nicely, they are starting to cut my steroids.I am so happy that we have 4 days at home this week. It is so healing to be home. Next week I have Tues and Thurs Clinic and if all is well with the GVH the following week I only have One appointment!! That means almost a whole week at home. I am working my way toward Day 100 a day at a time! Love to all

[launch]

Vera,
Congratulations on your Recovery.... Ron & I continue to pray for you....
Hugs, Cindy

[Ruth Cuadra]

Great news, Vera. Day +100 will be here before you know it!

Regards,
Ruth

[Laura]

Vera,
Congrats, I am so glad you are doing better!!! Enjoy your time at home.
Laura

[Beryl]

Originally Posted by Vera W

All is well. The rash is still clearing nicely, they are starting to cut my steroids.I am so happy that we have 4 days at home this week. It is so healing to be home. Next week I have Tues and Thurs Clinic and if all is well with the GVH the following week I only have One appointment!! That means almost a whole week at home. I am working my way toward Day 100 a day at a time! Love to all

Hi Vera,
I am new to this forum and have been following your thread- we have a similar situation in terms of age and health. How are you?
Take care,
Beryl

[Vera W]

I continue to do well. I am down to one clinic visit a week so we will be spending Sunday nights at our friends and Monday in Clinic. Back home, I love it. My CMV is back to normal so I was cut from 1800 mlg to 900 on the meds and as of tomorrow I will be 60 on the prednisone. You have to look hard for the rash. BMB coming up on Sept 28th! Still immune suppressed but counts are not terrible. Whites 5.6 neuts 4.6, reds a little low plates 97. I want to tell you all that I am VERY humbled and thank full for all my good fortune and that I NO WAY take this for granted. I am forever mind full of all your struggles and especially Melissa, Laura, and Heather and all of your troubles and you are always in my thoughts and prayers. Heather (FLOWER LADY) is back in the hospital with GVH of her gut. She has been at Emory since 9-2 so please remember her!

[Laura]

Vera, I am so glad to hear you are doing so well! I think of you often. Can you believe today is day 90 for me? I feel so blessed by how well I am doing and can't believe I had a transplant 90 days ago. I had my BMB today and am working on 100 day testing right now. I will never take for granted how "well"
I am doing and am just so blessed!!

Laura