Vera's Transplant [Archive]

Vera W

Tue Jun 9, 2009, 12:47 PM

Now that I am getting into the real deal I am starting a new thread to write about my transplant.Two weeks from today I will be admitted and I will receive my new cells July first.I don't know if I will get a blog together, it would have to fall to my husband and I think he will have his hands full. If you E-mail me I will give you my husbands e-mail address so you can talk to him directly if you are interested. I will write as much as my situation will allow. I did hear from Anthem Blue Cross yesterday telling me that I have been approved. I have never been in the hospital and that alone makes me nervous!

Neil Cuadra

Tue Jun 9, 2009, 02:05 PM

Good luck, Vera. You know we're all rooting for your success.

Here's a tip for forum members who want to keep up with Vera's news:If you'd like to be notified by email each time a post is made to this thread, click here to "subscribe" to the thread. (It's also a choice in the Thread Tools menu.) In the drop-down box, pick Instant notification by email. There's more information about thread subscriptions in the FAQ.

Laura

Tue Jun 9, 2009, 08:50 PM

Good luck to you!!! All my best of luck to you and best wishes!! We will have to keep each other updated on our progresses!

Laura

Vera W

Tue Jun 16, 2009, 10:29 AM

I wanted to pass this on to you all because I think it is important! You might remember my dismay when I found out there was no lodging/food benefit available for my San Francisco travel? However I was told that it was available in Sacramento if you have to travel over 100 miles. All the financial gal said at UCSF is that there is no travel benefit for under 250 miles one way! Last week the Anthem Blue Cross people called me to tell me that my transplant had been approved and they assigned me a case manager and we have been playing phone tag. I had this little voice gnawing at me to ask her about this conflicting information..she said to call again and see what the specifics of my plan were.. and yes there is no travel MILEAGE associated costs for below 250 miles but if you continue to read the contract we have the $100 a day hotel,$25 a day food for 21 days benefit and I had almost abandoned the possibility of this type of coverage. The financial gal didn't do her homework very well. So always ASK! This is $3000! It will allow my husband to have a place down the street from me where he can rest and shower and check his business e-mails. This is Huge to us!
Another interesting thing is I was looking at my itemized statement and it said "blood sample-ZKRD Germany". I googled that and it is a large donor Center in Germany so I guess my 10/10 match is a German gal. I have to honestly say that if my first transplant date had gone off as planed I would not have found this Perfect Match and that blows my mind!.
I am still waiting my written confirmation on the 23rd admittance date. I will probably get that tomorrow so I will keep you posted!

amykdb

Tue Jun 16, 2009, 09:51 PM

Hi Vera-

Good for you! I'll be thinking of you and hoping that it goes well.

Amy

squirrellypoo

Wed Jun 17, 2009, 06:07 AM

What a relief it'll be to have him nearby and not have to worry about money!

And it's funny your donor is in Germany, as I only recently found out mine is in America, which surprised me as I didn't even realise Anthony Nolan extended the search outside the UK...

Vera W

Wed Jun 17, 2009, 07:12 PM

Everything is set. Day -8 will be Tuesday June 23rd. I finally got my Chromosome analysis back, it took 3 weeks for some strange reason, but thankfully I am still normal! I will be getting my catheter about 1:00 on Tuesday.
The other news is Rob has an infection and back in City of Hope, his counts are real low and he will have another battle with GVH. He was doing so well so PLEASE continue your prayers for him I think we all forget what a long process this can be.
I spoke with Heather(FLOWER LADY) Who was at MD ANDERSON, and she is writing me again and she has been having highs and lows but she is coming along.
Our other member Laura is in the Mayo Clinic, she had 4 days of Chemo and radiation yesterday and has broken out in an itchy red rash. She will be getting her new cells on Thursday!
Then there will be me and squirrellypoo right after me so keep those prayers coming!!

squirrellypoo

Thu Jun 18, 2009, 05:47 AM

Thanks for the community update, Vera!

Then there will be me and squirrellypoo right after me so keep those prayers coming!!And I know a Welshman, David, from another community who's going in on the 24th for his BMT, too. I've been in constant contact with his American fiancee as she tries to sort together all her immigration paperwork so she can come be by his side through all this... So please spare a thought for them, too.

Vera W

Sat Jun 20, 2009, 11:16 AM

I will remember David and hope we can all join in Spirit and tap into each others strength!
We will be leaving today for the house in Petaluma it is a 2 1/2 hour drive! I have been working on packing household items and clothes for different legs of my journey, books, books on tape, family pictures..It is a lot of coordinating.
My brother and family are coming to the house for a BBQ tomorrow and we decided to spend Monday night in San Francisco so we can avoid the commute traffic.We are staying about a block from Ocean beach so I can get another Ocean fix. My husband will be staying here while he is in town.
I finally got my chromosome report and they are still normal thank God. I guess the German Donor spot services a lot of Europe so my donor may not be German. Maybe She will be a Swede like me! I am so curious. Anyway I have to be at the Clinic at 9 am Tuesday . More blood tests, an appointment to make sure I'm not sick! Hospital Admission paperwork. Catheter placement around 1:00 PM eventually I will make it to a room so I will give you that info when I get it. Every one take care!!

Birgitta-A

Sun Jun 21, 2009, 05:08 AM

Hej Vera,
Som jag skrivit många gånger tidigare beundrar jag de modiga patienterna, som vågar satsa på SCT. Själv vågar jag inte ens pröva Vidaza, eftersom jag är så rädd att må sämre. Dessutom roligt med en forskningsintresserad medlem som Du!

MDS Foundation hade ett Patient Forum i Stockholm i april 2009. Jag satt brevid en kvinna, som genomgått en 100-procentigt lyckad SCT vid 63 års ålder 2007 helt utan allvarliga komplikationer eller kronisk GVHD.

Hoppas allt går lika bra med Din SCT!
Varma hälsningar
Birgitta
70 år, MDS Interm-1 diagnos sedan maj 2006, transfusionsberoende, Desferal och Ferriprox (inte godkänt i USA) samt Neupogen-injektioner 2 ggr/vecka. Fortfarande helt symtomfri.

Vera W

Fri Jun 26, 2009, 01:25 AM

I was on my husbands computer this weekend and I was having problems with my pass word. I thought I wrote on day -8 but I can't find that. At any rate I am here at UCSF. I started chemo yesterday and I am on my 9TH bag. mostly busulfan, but fludarabine too! I wish I could tell you that the Hickman was a breeze but it really hurt, and was sore for a few days after. The nurses check your vital signs about every 3-4 hours, At 5:30 Am you have blood draws and have to weigh on the scale. I had my head shaved last night and i have been tooling around the halls with my pole that I have named Bertha. Things are going well.

squirrellypoo

Fri Jun 26, 2009, 09:42 AM

Thanks for checking in, Vera. I'm scheduled to have fludarabin and busulfan, too, along with a new one, campath. Do you know if you're having a mini-transplant (RIC) or a full blown one?

I'm sorry the Hickman line was rough for you. I've had mine in for a month now, and as far as I can see, having it an extra month is the only good thing to come out of my delay! Even despite having an infection almost immediately after insertion right up until yesterday, I'd still take it over being jabbed 10-15 times a week, and to me, the insertion procedure itself was TONS EASIER than a BMB...

I hope you and Bertha have an easy weekend, and not too much partying on Saturday nighht. ;)

Vera W

Fri Jun 26, 2009, 11:15 AM

I am having a full transplant. I was sup prized that the hickman hurt.I was expecting it not to! I can tell my counts are dropping, I am really tired and cold all the time. Bertha is pretty slow and she follows me everywhere!! Not much of a party person!

wslandry

Fri Jun 26, 2009, 09:31 PM

Sherry and I are thinking about you and want to send positive thoughts your way. Just cuddle up with those blankets and remember we are praying you have the strength to get through this difficult time. Tell Dennis we said hi and we are thinking of him also. We hope you can get some rest tonight.

Love you,
Wayne & Sherry

Vera W

Sat Jun 27, 2009, 11:51 AM

Thanks Wayne.I am waiting to hear if my counts dropped yet.I lost track on my bags of chemo.16 I think.I am losing my appetite and couldn,t hold my food down. Then I woke up in the early morning and found that I had ripped open my central line and blood was everywhere. i AM FEELING PRETTY SQUISHY!!:eek:

Vera W

Wed Jul 1, 2009, 01:50 AM

My new cells will be at San Francisco tomorrow at noon. I will have my infusion between 6-8 PM. Nausea is still my biggest problem!

squirrellypoo

Wed Jul 1, 2009, 04:59 AM

Godspeed, little cells!! I'll be thinking of you tonight. Make sure you take a photo of the big event, the moment your new life entered you!

PH Steele

Thu Jul 2, 2009, 01:06 PM

Vera, I kept watching the clock yesterday and saying prayers for you throughout the day as you waited and as the time approached for the transplant. I hope that today is not too tough for you. I am keeping you in my prayers and checking often for an update.

PH Steele

Ruth Cuadra

Thu Jul 2, 2009, 04:52 PM

Vera, July 1st is a great day for a transplant. The sun will be around to keep you warm as you recover and the days will be bright to help keep your spirits up. Thank you for taking the time to share the details of what's happening with us here at Marrowforums. You're helping lots of people now and even more who will come to the site in the future looking for encouragement.

Good luck! Go cells!

Regards,
Ruth

PH Steele

Fri Jul 3, 2009, 11:14 PM

Vera, thoughts and prayers are with you. I hope that you are not feeling too low today.

The news about Rob has been hard to accept. I know that he would want you to stay strong and encouraged. I am anxious to learn how it is going for you.

Vera W

Sat Jul 4, 2009, 05:09 AM

All in All I am doing well, Sore throat and phlegm, Waiting for the graft. I still have Had no transfusions. And still not neutopenic! Platelets are 300, go figure,
Dennis and I both cried about ROB, I still can't believe it, and yes I feel his BEAUTIFUL spirit!

Ruth Cuadra

Sat Jul 4, 2009, 03:57 PM

Hi, Vera.

Good to hear you are doing so well. Seeing that your post came at 2am reminded me of all the nights I spent in the hospital wide awake and writing to friends and family in the middle of the night. It seemed like I was thinking most clearly in the wee hours, but I wonder now if what I wrote was actually jibberish. You seem very clear-headed but I hope you're getting your sleep too!

I know you and Rob were closely connected and supporting each other throughout your transplant journeys. Please accept my condolences on the loss of your friend.

Regards,
Ruth

Vera W

Mon Jul 6, 2009, 06:13 AM

Yes Ruth some things never change! I am still in shock about Rob even my husband cried at his passing, what a dear man he was, He once said to me "Vera we are the lucky one's, we have found a way out of this dreaded disease".
I had a fever of 100.8 last night, My mouth,throat and tongue are horrible, I have the blasted cold sores on my lip. I have been on interveinous anti-biotics and it broke me out in a rash. I don't think I have a fever now but I am not going to be eating any time in the near future. I slept like crazy last night, that's why I am awake now!
Thanks for thinking of me!!

Birgitta-A

Tue Jul 7, 2009, 07:18 AM

Hi Vera,
I admire your spirit! Hope they will find antibiotics that not give rash and that the sores in your mouth, throat and tongue will disappear!
Kind regards
Birgitta-A

amykdb

Tue Jul 7, 2009, 09:02 PM

Hi Vera-

Just wanted to say hello and that you are amazing! Keep up the good work! It all gets better from here!:)

Amy

PH Steele

Wed Jul 8, 2009, 08:18 PM

Vera, I pray that you are coping well. I am anxious to hear from you as to how things are going. Love and prayers are with you each day.

Vera W

Wed Jul 8, 2009, 11:47 PM

My worst problem is this persistent painful mucositis.I woke up with a very dry throat and when I gargled I spat up blood so I had to wait up and see the floor doctor, They were considering ordering platelets which are down to 40 now! Every thing turned out fine.My catheter site is still a bit red but I am on antibiotics for that! I started neuprogen shots today, we need to wake up the donor , OLGA!!! I am very tired!! Good night All!

Ruth Cuadra

Thu Jul 9, 2009, 01:47 AM

Vera,

They should be able to give you pain meds to suppress the discomfort of the mucositis. I was on dilaudid (substitute for morphine because I turned out to be allergic) for about 3 weeks during the worst of it. Don't know how I would have survived otherwise! You need your energy for healing so you shouldn't be expending a lot of effort coping with pain.

Hope you have a comfortable night!

Ruth

Laura

Thu Jul 9, 2009, 09:07 PM

I agree with Ruth ask for some Morphine or Dilaudid iv. There is no reason for you to be in pain. You could ask for a PCA machine too. Best wishes to you!
I am on day 21 and finally have a white count of 0.7 but no ANC yet.

Vera W

Fri Jul 10, 2009, 11:12 PM

Hard to believe that I have been here 18 days tomorrow. My counts WBC ,03, No anc, HCT26.4, Platelets 20. I am on my second red blood transfusion as we speak I had platelets done yesterday and might need them tomorrow. I have a non itchy red rash on my legs that no one knows what it is. The worse part of my day was my mucositis. I had trouble breathing and i got a shot of dexamethasone, it really broke up the mucous. Ruth and Laura they offered me a diladid pump but it made me sick and did nothing for the pain.What works the best for me is norco (low Tylenol vicadin) and oxicodon, I can't swallow that too well but the pain relief is amazing. I did settle for a fentsnyl pump.It is another morphine derivative! The docs are pleased with my progress. Thank you for your encouragement! I have had three neuprogen shots.

Vera W

Sat Jul 11, 2009, 10:24 PM

The doctor came into my room this morning and said, Vera guess what? I looked at her and said I am grafting? and she said yes and it is the fastest graft that she had ever recorded, 3 days after neuprogen ,from .03 to1.1.anc.085,33 hemocrit,10 platelets I had another transfusion. This is all very exciting,:)

Neil Cuadra

Sun Jul 12, 2009, 07:23 AM

Going from no neutrophils to your first new neutrophils is great news, Vera. There was nowhere to go but up, and that's exactly where you are headed!

squirrellypoo

Sun Jul 12, 2009, 08:07 AM

Congrats, Vera! That's brilliant news, which I'm sure will boost your spirits somewhat! :)

launch

Sun Jul 12, 2009, 02:31 PM

Wonderful News Vera! We've been praying for your successful transplant and restored health. We praise God for your progress! AWESOME!!!!

Cindy

michelle_lapuz

Mon Jul 13, 2009, 12:37 AM

hurray stem cells, hurray Vera!! I'm glad to hear your neutrophils are on the up, that is fantastic news. Let me know if you need anything from the outside world - I'm free on Saturday to stop by if you would like a visitor!!

Michelle

Birgitta-A

Mon Jul 13, 2009, 05:51 AM

You are a true fighter! How wonderful with the results :)! Congratulations!
Kind regards
Birgitta-A

wslandry

Mon Jul 13, 2009, 11:41 AM

Dear Vera

Sherry and I are so excited that you are responding to treatment. Thank God and we are praying for your post treatment response everyday. Love you,

Wayne & Sherry

tmc3tom

Mon Jul 13, 2009, 06:43 PM

Vera....you and your family will be in my thoughts and prayers....tom

Vera W

Tue Jul 21, 2009, 08:11 PM

Hello friends, Well I am being released tomorrow for the next leg of this journey.I thought I wrote an E-mail to you Ruth and Laura, about the pain killers. I didn't mean for it to sound like they left me hanging the first thing they offered me was the morphine drip it makes me feel weird and didn't relieve the pain. I have better luck with norco ( Vicadin with Tylenol ) Everything was fine and my counts were climbing nicely then I found myself in ICU with a 101 degree temperature and I guess I wasn't getting enough oxygen. They were worried about pneumonia so I had a CT and heart scan and everything was fine. I got a couple of latix shots and things leveled out.They are having a hard time regulating my anti-suppression drug, trycolymus, First I have way too high blood pressures, and now they are way low.They are working on the right combo. BUT I am headed for Petaluma tomorrow.
Melissa, i am happy that you are home and it took me 3 weeks to lose my hair too!
Special kudos to Ruth and Neil for a job well done!! Rob is smiling down at us from above!!:):)

Ruth Cuadra

Tue Jul 21, 2009, 08:53 PM

What a lucky lady you are, Vera, to be out of the hospital and doing well in such a short time. Hope the transition to Petaluma goes smoothly! And, thanks for your kind words.

Regards,
Ruth

michelle_lapuz

Tue Jul 21, 2009, 11:52 PM

OMG!! You are already out? That is WONDERFUL news - hurray!! Bummed that I didn't get to meet you - you were in and out so fast!!

Michelle

Birgitta-A

Wed Jul 22, 2009, 04:41 AM

Hi Vera,
You know it is so good for us to read about your SCT :)! You give hope to many members and their relatives.
Kind regards
Birgitta-A

squirrellypoo

Wed Jul 22, 2009, 07:50 AM

That's great news, Vera!! It'll be such a relief to stay at your friend's now instead of the hospital...

I'm finding I still need to take things really slowly and lay down a lot. The biggest thing for me was realising how tired I get just sitting up at the table. And then it dawned on me that I'd been always leaning against something for the past three weeks!

PH Steele

Sat Jul 25, 2009, 12:11 PM

Vera, how wonderful that you are home. Keep us updated about your progress. I received a letter from Rob's sister.

She shared some thoughts and concerns regarding Rob's setback. She truly feels that he began to feel so well that he took some risks that he should not have taken.

She strongly stressed that the restrictions put on patients are not guidelines, but ironclad directives to be followed to the letter. She believes, too, that Rob failed to report his symptoms soon enough due to the dread of going back to the hospital.

I share these things with you and other readers of the forum not to be negative, but to stress the importance of being cautious and take no risks with your recovery.

Rob touched all of our hearts with his courage, optimism, and humor. His sister and his family are still in shock and deep grief over this devastating turn of events. I feel that her letter was incredibly thoughtful in sharing Rob's experiences in order to benefit others.

My very best to you, Vera. I will be checking the forums for news.

Vera W

Tue Jul 28, 2009, 09:12 PM

I really need to write laura( robb's sis)but my own condition is holding me up!

launch

Tue Jul 28, 2009, 09:54 PM

I know we all were concerned about Vera. I'm in a group email on my home email address and just received this update from vera... I've extracted the message... I wanted to share....

Extracted message from Group Email From Vera: DAY+28 at 8:54pm (ET):

.....Guess I had better write an update before a riot begins Last week was hard ,I was suppose to get out Monday, Tuesday and Wednesday. They have been trying to regulate my anti rejection drug and it it all over the place..I was also dehydrated and myB 0 was 57/46 so i had a bag of saline, I don't feel bad just really tired but I am only 28 days old! My wbc is 3.9 reds 2.34 hemocrie31% and plateletts 328,No GVH sightings. it is still early...

Vera W

Wed Jul 29, 2009, 01:57 PM

I guess you figured out that BO IS BP<<HA HA

flowerlady

Thu Jul 30, 2009, 08:27 AM

Great to hear you are well as can be expected for having such a new immune system. The tacrolimus/prograf played with my blood pressure too! I was just taken off the two meds for it. They really have to "fine tune" these new machines of ours. But it all comes together before you know it. I am day 108 and still find myself great one day and rather weak the next. Just taking baby steps to recovery. Sending hugs, patience and strength...

PH Steele

Thu Jul 30, 2009, 09:33 PM

Flower Lady, I am so happy to see that you are feeling strong enough and well enough to be on the forums. I often checked for reports and worried about you.

My young friend, age 20, is 60 days out from his transplant. He is doing pretty well and desperately wants to go back to college soon. I really doubt that can happen. He probably ought to take off the whole semester since he lives in the dorm.

Have you been able to return to your home yet or are you still in Houston?
My young friend lives in Houston.

PH Steele

Thu Jul 30, 2009, 09:36 PM

I meant my young friend is 30 days out--had his first bone marrow biopsy with a good report all donor marrow and normal chromosomes.

Birgitta-A

Fri Jul 31, 2009, 05:59 AM

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

PH Steele

Sun Aug 2, 2009, 10:50 PM

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

Mon Aug 3, 2009, 04:36 AM

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 :eek:), 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

Mon Aug 3, 2009, 05:11 PM

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

Mon Aug 3, 2009, 09:20 PM

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

Tue Aug 4, 2009, 02:25 PM

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

Tue Aug 4, 2009, 03:09 PM

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

Tue Aug 4, 2009, 11:03 PM

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.

Tue Aug 11, 2009, 09:10 PM

does anyone have an update on vera

launch

Wed Aug 12, 2009, 04:47 PM

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

Fri Aug 14, 2009, 07:18 PM

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

launch

Tue Aug 18, 2009, 11:09 PM

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

Tue Aug 18, 2009, 11:32 PM

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

Tue Aug 25, 2009, 04:59 PM

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

Wed Aug 26, 2009, 05:18 AM

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

flowerlady

Thu Aug 27, 2009, 08:26 AM

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

Thu Aug 27, 2009, 09:27 AM

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

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

squirrellypoo

Thu Aug 27, 2009, 12:29 PM

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

Fri Aug 28, 2009, 04:12 PM

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

Sun Aug 30, 2009, 05:03 PM

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

Ruth Cuadra

Thu Sep 3, 2009, 02:05 AM

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

Regards,
Ruth

Laura

Thu Sep 3, 2009, 09:40 PM

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

Beryl

Sun Sep 6, 2009, 11:10 AM

Vera W

Wed Sep 16, 2009, 01:00 PM

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

Wed Sep 16, 2009, 06:39 PM

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

Vera W

Thu Sep 17, 2009, 11:16 AM

I am glad that you are in better Spirits! Keep up the good work! Hugs,V

Vera W

Sun Sep 27, 2009, 09:07 PM

Tomorrow at 11 is my 4TH bmb. I have days when I see no rash but I have to completely cover up in the car because even indirect light will pop it out. I feel good but the drugs really mess with my muscles still. I hope I get another reduction this week. Even with all the immune suppressant my counts are good.
WBC 6.2
RBC 3.64
Hemoglobin 12.3
Hemocrit 35.8
Platelets 109
neuts4.22
Lymphs (which they are really suppressing)1.51
Chemistry all good little bit elevated on bun and alt from all the drugs
CMV still neg
Love to all Vera

Birgitta-A

Mon Sep 28, 2009, 04:43 AM

Hi Vera,
Congratulation to the very impressive counts :)! Too bad that light makes the rash pop out and that you have problems with your muscles - as you wrote these symptoms will hopefully disappear.
Kind regards
Birgitta-A

Vera W

Sat Oct 3, 2009, 11:03 AM

Hi all,
my little nurse practitioner did my bmb and she is not much over 5 feet. She said i had really strong bones and she was sweating up a storm. She did not get enough bone so she went in twice...YUCK!! However they gave me ativan and a shot of Demerol but I still felt the first puncture with that pressure running down my leg and butt! I hate that part. They lowered my Prednisone another 10 mg. Rash is good, I still have muscle weakness and I move as much as I can.Still can't complain, I am feeling well. Next Friday is day 100!! My hair looks like twigs in a field and my finger nails are all coming off.
I got an E-mail from Heather. She has been back in the hospital for a month now with GVH but she has hopes of being released today. Please say a little prayer for her!

Vera W

Tue Oct 6, 2009, 01:30 PM

My bone marrow biopsy came back totally normal and I have no MDS. The chromosome report is not in yet but it was normal to begin with and I am still waiting on the % of donor cells report. I am getting my regular flu shot tomorrow with my local hematologist. we are not sure how much good it will do me but my whites are 7.7 and neuts 6 even with all the immune suppressants:) so I think my immune system just might a fighting machine! they cut the prednisone down to 30 mgs now from 100, I am very Happy!!!!

Laura

Tue Oct 6, 2009, 08:36 PM

I know I already said this via email but I am SO HAPPY to hear the great news Vera!!! That is so awesome and I know the chromosomes will all be perfect too!!!

tserdogan

Wed Oct 7, 2009, 06:10 AM

Hi Vera,

Good news.That kind of news raise my morale.

squirrellypoo

Wed Oct 7, 2009, 08:36 AM

That's brilliant news, Vera! Oh, what a relief it must be to hear the words "no MDS"! Congratulations!

Vera W

Fri Oct 9, 2009, 06:27 PM

Just in case any one forgot...... TODAY IS DAY +100 !!!!!

Laura

Fri Oct 9, 2009, 09:01 PM

YEAH!!!!!!!! CONGRATS!!!!!!!!!!!!!!!!

I hope you celebrate!!!

Laura

Beryl

Sat Oct 10, 2009, 12:08 AM

Just in case any one forgot...... TODAY IS DAY +100 !!!!!
Hi Vera,
This is fantastic! Way to go!!
Take care,
Beryl

Vera W

Mon Oct 12, 2009, 11:23 PM

My Chromosomes are still normal. My husband had to ask again if my MDS was gone. These UCSF doctors are so guarded you could tell he was very pleased with my outcome. My white cells are 100% donor and my reds are 98% but that is due to the immune suppression drugs. I forgot to see if my blood type changed. Dennis asks the doctor if this is all good news and he finally smiled and said it was very good news!! So I am doing a daily drop in the prednisone down to 15% by the end of the week. After I get off the prednisone I can get off the valcyte. And go back to local care!!:)

Gloria J

Tue Oct 13, 2009, 09:59 AM

Vera, What wonderful news for you! You must feel it's been a long time coming, but so welcome. Best wishes for continued good health, and a speedy recovery!

PH Steele

Wed Oct 14, 2009, 01:16 PM

Vera or Brigitta, have you had news of Heather recently. I am anxious to hear how she is doing.

TJ (21 year old boyfriend of my daughter) is just over day 100 after his BMT. He is doing well, but must be very cautious about infection. He is having a hard time gaining weight. He is down to 120lbs and is six feet tall. Any suggestions for gaining weight?

Melissa, hang in there, and good wishes and prayers for both you and Beryl.

Laura

Wed Oct 14, 2009, 02:13 PM

You could see if he would drink those nutritional drinks. Otherwise encourage him to eat high calorie foods. Or he could try eating many small meals throughout the day, that way he is eating more.

Beryl

Mon Nov 23, 2009, 11:08 PM

Vera W

Tue Nov 24, 2009, 02:02 AM

Laura

Tue Nov 24, 2009, 09:33 PM

Vera,
Are you taking anything for the nerve pain? I am and it helps a lot.

I had issues with really dry lips...vanicream chapstick and the Bee's Wax Medicated chapstick work great for it.

Hoping things clear up for you soon.

Laura

Beryl

Mon Nov 30, 2009, 07:38 PM

Hi Beryl, all in all I am doing well. I have a few minor issues, my rash still pops up from time to time. I am having some mild gut issues and I went back on stomach steroids but less than last time.They are already helping. Still waiting for hair, eyelashes and nails! They are slowly moving like turtles, my magnesium was real low last blood test so I went back on 1000 mg a day. This week it was back to top of the range. Some yeast issues even with all the fungus medicine I take but my tests showed that the Vfend was suppressing something. Eyes are blurry and water a lot they are not sure if it is gvh, my nose runs and lips are dry, I have dry mouth! My stamina is better but I still have to be careful. I have tingling in my feet and numbness but not all the time! I have pinched nerves in my shoulder blade but my Chiropractor is helping me. I get tired but most of the time I feel pretty good, My best friend that lives in San Fransisco Met us at our hotel and we all went out for dinner, we went early and no one was there so we got a back booth, That was my first outing since June! She was a superb assistant caregiver and I ordered her some hand crafted Roman glass earrings from Israel, she loved them.I just have a lot of minor irritating things but nothing major, I was very blessed! Now..How are you?

Hi Vera,
I'm ok. It's good to hear your update. I'm still on Vidaza- I just started my 5th cycle and got another bone marrow test today too. My energy is good and it's still hard to believe I'm sick. My blasts are down from 13% to 8% and my chromosomal abnormalities have gone from 100% to 80%. I'm seeing an acupuncturist, doing EMDR, drinking fresh organic juices and taking vitamins like a fiend. I'm in training for the BMT. My Doc wants me to do it in the late winter but I'm pushing for early June. My son is getting married mid May and I want to help with the reception etc. I also don't like the idea of being at the mercy of winter weather. I feel very scared of the whole thing. I think I'll make it through but it feels very scary. Is there anything you would do differently? Are you staying near your hospital for 6 months? That's the plan for me.
Thanks for writing- i appreciate it.
Take care,
beryl

Vera W

Wed Jan 27, 2010, 02:44 AM

Hi all,I just thought it important to mention my dear Heather again. She has been having such a hard time with her GVH. She recently got off the feeding bag and is having a hard time still gaining weight. She is down to 90 pounds. Please keep her in your thoughts and pray for her to be whole, She is really a warrior! Peace and love Vera

Jen B

Sun Jan 31, 2010, 11:15 PM

Hi everyone,
I hope you don't mind me intruding on your group, but I just wanted to say that I love reading your posts. My son is on day +82 and as he is so young, I worry that he won't be able to communicate some discomforts to me. It helps me so much hearing your experiences so I know what to look for.

Thanks so much for sharing!
Jen

Vera W

Mon Feb 1, 2010, 02:07 AM

Hi Jen. As far as I am concerned these posts are for all of us, It might be harder on you but your son probably won't remember too much of this and will go on to have a healthy happy life.:)

Laura

Tue Feb 2, 2010, 10:24 AM

I agree with Vera. These posts are for everyone. Feel free to read or post whatever Jen :) We are here for everyone.
Laura

flowerlady

Thu Mar 4, 2010, 09:19 PM

Hi Everyone,

I am writing to let you all know that our dear friend Vera has been hospitalized since last Tuesday at UCSF with lung issues that they are still trying to determine. Dennis, her husband has asked us all to please keep her in our prayers! She was on a respirator at the time of his message. Dennis asked that we let everyone know and continue praying. Hope you are all doing well...I will write more about myself at another time....right now lets pray that Vera is soon home! ;)