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  #1  
Old Tue Sep 17, 2013, 10:01 PM
DebS DebS is offline
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Transplant Bound

Hello,

As most of you know, Doug is going into Loyola on Sept. 30 for his conditioning and then the new birthday, Day 0 is October 8. I know you are all thinking good thoughts and wishing us luck.

I wanted to share a couple of tips with everyone. Some practical things you don't find out until the last minute. For example, they asked that Doug have slippers and gym shoes that are a size or two larger because his feet will really swell. I had already purchased these and was lucky to be able to exchange them for larger ones. Who knew???

The other thing that really worked out for us was about books. Doug is an avid reader and with books costing what they do, he buys a lot of them used at garage sales, libraries, Goodwill, etc. I can't tell you the look on the nurse's face when he asked if he could bring in his well used books!!!!! Anyway, our niece bought him an e reader so it will be easier on his eyes and she was able to download all of his books. Boom--two boxes eliminated! Then I bought him a tablet so he can watch movies from Netflix on streaming--another box eliminated! The other good thing about these two devices is that they can be wiped down with antibacterial wipes. I understand that these two solutions are a bit costly, but I think they will be worth it in the long run.

Meanwhile, we are spending a lot of our time at the hospital for platelets. His are now tanking to 2 or 3! That has been scary. But he gets a decent bump after the transfusions. They don't last long however. His blood tests will be increased to two a week to keep this in better check.

Deb
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  #2  
Old Tue Sep 17, 2013, 10:17 PM
Neil Cuadra Neil Cuadra is offline
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Deb,

We have our fingers crossed for you and Doug and we hope you'll be able to keep us updated.

Thanks for posting some very practical tips.

When my wife had her transplant they made a fuss about our bringing a laptop computer along, making us first get it inspected by their facilities department. I think they were worried that it might produce an electromagnetic field that would interfere with medical equipment. That was a few years back and I'll bet they don't do that anymore. Personal electronics are more common than they used to be and people depend on them more too.

If the hospital provides patients with tablets (e.g., for watching movies) then patients might also use them for email, blogging, etc. If people bring their own phone or tablet or laptop then there's plenty they can do with it.

I'm curious what hospitals do about security. If you bring your own equipment, how do you keep it safe? There are a lot of people wandering around hospitals (staff, patients, visitors, and vendors) and patients are often sound asleep. Is there a safe lockup for personal possessions? Do caretakers need to take all personal electronics away with them between visits? And if the hospital lends you an e-reader or tablet to use, is there a privacy risk when you use it for personal communications like email?

During a transplant, the biggest concerns are the medical ones, but since you brought up the subject it got me wondering about typical hospital policies about electronics.
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  #3  
Old Tue Sep 17, 2013, 11:03 PM
Chirley Chirley is offline
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Neil, security is a worry.

A couple of years ago I was in hospital and they came to collect me for a CT which I hadn't been told about. I very quickly had to remove my earrings. I put them in the bedside locker. When I got back and went to put them in again they were missing. I was very upset because they had been given to me by a boyfriend (serious) a month before he had been killed in an accident. They were the only diamonds I owned but the sentimental value was priceless.

When I go into hospital they make me (everyone) write out a list of their valuable items eg iPad, iPhone etc and sign a form relieving the hospital of any obligation if they are lost, damaged or stolen. They used to insist on electrical checks too but they don't worry about that any more. I think all the power points are isolated with safety switches.

They do have a combination safe available in every room but its such a bother to put everything away and get it back out again if you are only going for a walk around the ward with a physio that you tend to not to use it.
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  #4  
Old Tue Sep 17, 2013, 11:08 PM
Whizbang Whizbang is offline
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Deb / Doug,

I'm right behind you, I'm tentatively scheduled for Oct 20th Admittance, and Oct 31st Day 0...

Good to know about the sneakers / slippers... They provide computers in every room, but they said you can bring your own laptop... I have a few to choose from, since I rebuild them (as a hobby)... I also have a remote TV device, kind of like a slingbox, so I can tune in to channels at home over the internet (Vulkano)... Nothing like flipping channels at home... (while your away)...

I have to let them know if I'll participate in a study for palifer min and/or Leupro lide acetate or neither, supposed to help immune system recover faster... I can opt out, and get palifer min for mucositis, but not get the possible added benefit of the other drug (which lowers hormone levels)...

Tough descision, but I'm leaning toward participating, and my Hemo and Nurse Practioner agree, since it will get me better and more closely mointored for symptoms...

Best of luck, to you and Doug... God Bless and see you through...
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Married, father of three daughters; now 46; diagnosed w/ Major form MDS 6/18/2013; had low counts across the board; Multiple chromosome abnormalities; Finished 2nd round Dacogen 9/13; SCT - Oct. 31, 2013; Sibling match 10/10 ; 5.5% blasts down to 3%, now 1% (post BMT)

Last edited by Whizbang : Wed Sep 18, 2013 at 02:22 PM. Reason: edit
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  #5  
Old Wed Sep 18, 2013, 12:16 AM
Heather8773 Heather8773 is offline
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Deb thank you for the advise! My husband is admitted oct 3rd and we have not been told about the shoes and slippers.

Neil we have always brought lap tops, iPads, games, even E cigs ( that is how we quit smoking. We brought them during his ATG stay) and never had a problem.
The only thing is when I use the hospital wifi I cannot access certain sites (pnhdisease.org is one of them)
Chirly very good point we didn't pay much mind to our personal things when we were not in the room during his ATG . I will now! Sorry that happened to you!
Deb and Dave keep me updated and I'll do the same!
Next up for us: body mapping and banking
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Heather, wife of Ronald 36; dx PNH 2012; Dx VSAA 2013; eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets. Post BMT -pentam,vorconizole,valtrex, valcyte, actigall, Pepcid , prograf, magnesium.
10/10 MUD 10/10/13
Now no PNH or AA. Mixed Chimerisim
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  #6  
Old Wed Sep 18, 2013, 07:29 AM
susanML susanML is offline
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Wink Deb/Doug

Thank you for the good hints - I am praying for you both. Keep the updates coming - I am waiting for my donor - but feel it will be fast. Best to you - Susan
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MDS RAEB 2 w/excess blasts - 3+ Fibrosis - previous treatments ATG, Vidaza, Dacogen and Rituxan. Waiting to find my match - Susan
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  #7  
Old Wed Sep 18, 2013, 07:31 AM
susanML susanML is offline
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Heather -

Best wishes to you both -- I am waiting for my donor. What is body mapping? I havent heard that.
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MDS RAEB 2 w/excess blasts - 3+ Fibrosis - previous treatments ATG, Vidaza, Dacogen and Rituxan. Waiting to find my match - Susan
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  #8  
Old Wed Sep 18, 2013, 07:33 AM
susanML susanML is offline
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Whizbang - :-)

Best wishes to you too!! I am getting jealous all of you going in around same time. Best to you also !!
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MDS RAEB 2 w/excess blasts - 3+ Fibrosis - previous treatments ATG, Vidaza, Dacogen and Rituxan. Waiting to find my match - Susan
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  #9  
Old Thu Sep 19, 2013, 01:18 AM
Heather8773 Heather8773 is offline
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Maybe I called it the wrong name. They are doing imaging to see where the bones, organs, and I think deep veins(?) so they can target the bones and try to avoid the organs as best they can during the total body radiation. Also I think to locate where they will set up his port. I can't remember if they are doing that at the same time as locating bones and organs.
Susan hoping the best for you! Pls keep us updated!
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Heather, wife of Ronald 36; dx PNH 2012; Dx VSAA 2013; eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets. Post BMT -pentam,vorconizole,valtrex, valcyte, actigall, Pepcid , prograf, magnesium.
10/10 MUD 10/10/13
Now no PNH or AA. Mixed Chimerisim
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  #10  
Old Thu Sep 19, 2013, 07:23 AM
susanML susanML is offline
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Heather -

Hi - Thanks for replying - I havent heard about the radiation yet - so that'll be interesting. I am praying for all of you- I am nervous waiting but I just have a feeling it will be quick. I worry so much about my husband going thru all this with me. Its just us - and we have 4 dogs that need to be tended too and live in the country and he is not well himself. I just keep praying - best to all.
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MDS RAEB 2 w/excess blasts - 3+ Fibrosis - previous treatments ATG, Vidaza, Dacogen and Rituxan. Waiting to find my match - Susan
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  #11  
Old Thu Sep 19, 2013, 08:51 PM
Chirley Chirley is offline
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Hi Susan,

When it looked like I was heading to transplant I had two dogs, one of which needed medicine twice a day. I didn't want to put that burden on my Dad so I rang the RSPCA and they had a service where they sent someone to your house to tend the animals. I can't remember now but I don't think it cost much. In my case it was going to be free because I'm leaving them a bequest in my Will.

Also one of my Veterinarians nurses said she'd be happy to call in twice a day and I also had an offer from the Vet to house my dogs at the Vet Hospital for a small fee.

I wasn't going to put them in a boarding kennel under any circumstances, they would have been too stressed.

I had decided on housing them at the Vet Hospital so they weren't left alone during the day but then I didn't go to transplant and didn't need my girls to be looked after.


Chirley
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  #12  
Old Fri Sep 20, 2013, 07:31 AM
susanML susanML is offline
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Chirley -

Thank you for the ideas - We are going to try all avenues. I love my pets like they were children as they are our little people. :-) Sending best wishes to you -
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MDS RAEB 2 w/excess blasts - 3+ Fibrosis - previous treatments ATG, Vidaza, Dacogen and Rituxan. Waiting to find my match - Susan
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  #13  
Old Mon Sep 30, 2013, 07:54 AM
DebS DebS is offline
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Big Day

Well, today is the big day when everything starts.

We went to Loyola on Saturday and had Doug's CBC. As anticipated, he needed platelets. That did not bump him up quite enough so this morning--very early-- he is receiving more platelets before the surgery to put in his port. Then this afternoon they start his high dose chemo.

He is in great spirits and is so positive. We are both cheerleaders for each other this morning. However, I know that I will soon be head and only cheerleader for him.

Deb
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  #14  
Old Mon Sep 30, 2013, 09:15 AM
susanML susanML is offline
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Deb and Doug

Quote:
Originally Posted by DebS View Post
Well, today is the big day when everything starts.

We went to Loyola on Saturday and had Doug's CBC. As anticipated, he needed platelets. That did not bump him up quite enough so this morning--very early-- he is receiving more platelets before the surgery to put in his port. Then this afternoon they start his high dose chemo.

He is in great spirits and is so positive. We are both cheerleaders for each other this morning. However, I know that I will soon be head and only cheerleader for him.

Deb
I am sending my love to you both - wishing the very best. Cheer on - you can do it. I am waiting to hear if I have a match and when I will start - I am nervous as I am sure you both are too. Best to you and let us know how it goes all thru this. :-)
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MDS RAEB 2 w/excess blasts - 3+ Fibrosis - previous treatments ATG, Vidaza, Dacogen and Rituxan. Waiting to find my match - Susan
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  #15  
Old Mon Sep 30, 2013, 11:55 AM
Whizbang Whizbang is offline
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Deb and Doug

Will be thinking of you both, wishing you the best possible outcome, now and in the foreseeable future...

God Bless, and be well...
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Married, father of three daughters; now 46; diagnosed w/ Major form MDS 6/18/2013; had low counts across the board; Multiple chromosome abnormalities; Finished 2nd round Dacogen 9/13; SCT - Oct. 31, 2013; Sibling match 10/10 ; 5.5% blasts down to 3%, now 1% (post BMT)
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  #16  
Old Mon Sep 30, 2013, 01:18 PM
MagicBob MagicBob is offline
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DebS, my wife and I are sending our very best for Doug's upcoming BMT.


Our thoughts and prayers to you.


Dru and Bob MagicBob
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  #17  
Old Mon Sep 30, 2013, 04:52 PM
Heather8773 Heather8773 is offline
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Deb and Doug
God bless! I am praying for the both of you!
I think your a fantastic Cheerleader! I can tell by your posts
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Heather, wife of Ronald 36; dx PNH 2012; Dx VSAA 2013; eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets. Post BMT -pentam,vorconizole,valtrex, valcyte, actigall, Pepcid , prograf, magnesium.
10/10 MUD 10/10/13
Now no PNH or AA. Mixed Chimerisim
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  #18  
Old Mon Sep 30, 2013, 09:53 PM
Lisa Z Lisa Z is offline
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Deb and Doug


Best of luck! Thinking of you!
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Dx. 6/08 with AA, then changed shortly thereafter to MDS. Campath trial at NIH March '09 and have been transfussion independent since June '09
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  #19  
Old Mon Sep 30, 2013, 10:15 PM
DebS DebS is offline
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Thank you all!

I am so touched by all of your kind words and prayers. They mean so much.

This has been quite a day! We were supposed to be at the hospital at 7:00 for Doug to get platelets before his port was put in. Three hours later they were putting in the first bag Then his platelets went up to 45. They wanted them at 50. Sooo, an hour and a half later, he got the second bag. He doesn't "wait" well, so I tried to be entertaining for him, but I think I was just annoying Anyway, they finally did the surgery and wheeled him up at about 4:00 P.M. We were 6 hours behind, but we are moving forward.

I left him as he was eating dinner and getting the first infusion of chemo. He has such caring doctors and nurses. I felt that I was leaving him in good hands.

He knows it will be rough, but he always says that we have to go through the bad stuff before we get to the good stuff. What a great attitude!

Signing out for tonight.
Deb
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Old Tue Oct 1, 2013, 12:02 AM
LizR LizR is offline
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Deb and Doug

So glad you've made it through the first big day of the journey. Sorry to have not posted earlier. We're having our own hospital stay so I'm behind reading and posting.

Prayers and good thoughts always headed your way. Bob rolled his eyes at me because I was annoying today when I tried comic relief! Oh well, can't blame we girls for trying..... I'm just looking for a smile.

Just keep moving forward. Sounds like you're on your way!

Liz and Bob
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  #21  
Old Tue Oct 1, 2013, 04:29 AM
gramous gramous is offline
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Hi Deb and Doug,

Thinking of you and I wish you both good luck. Stay positive also in the more difficult moments. We are always here for you on this forum if you need. Friendly regards. béné
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Old Tue Oct 1, 2013, 07:56 AM
susanML susanML is offline
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Deb and Liz

Best wishes to both of you - I too believe comedy sometimes helps the situation and my hubby also rolls his eyes at me. Hey gotta do something to keep it moving during these stressful days. I am praying I will get my call quick so I can get started also. Thank you for posting what happens each day as I am so curious - Sending virtual hugs
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MDS RAEB 2 w/excess blasts - 3+ Fibrosis - previous treatments ATG, Vidaza, Dacogen and Rituxan. Waiting to find my match - Susan
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  #23  
Old Tue Oct 1, 2013, 02:25 PM
mausmish mausmish is offline
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Best wishes as you begin your journey!
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
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  #24  
Old Tue Oct 1, 2013, 08:39 PM
DebS DebS is offline
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Day -7

Today was a much better day! I arrived at the hospital to find Doug walking briskly up and down the halls to log in his 60 minutes of walking. He has already made fast friends with men in the unit. One got his stem cells today and was walking right after! He is a real inspiration.

The doctors saw Doug today and said that they were going to give him a stronger antibiotic and start ATG along with the chemo. Help me forum friends! I thought that ATG was usually given to patients who were not going through a BMT. And the doctor said it was rabbit serum--I thought it was from horses! Someone please clue me in!

We know that this is the "honeymoon" period for Doug. He is eating well and feeling well. We are enjoying these times while we can.

Deb
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  #25  
Old Tue Oct 1, 2013, 08:51 PM
Whizbang Whizbang is offline
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This is what my schedule looks like:

-9 TBI (3 doses)
-8 TBI (3 doses)
-7 TBI (3 doses)
-6 TBI (2-3 doses)
-5 Chemo A
-4 Chemo A
-3 Chemo B / Rabbit ATG
-2 Chemo B / Rabbit ATG
-1 Rabbit ATG
+0 Transplant
+7 Neupogen

TBI - Total Body Irradiation
A & B are different types of chemo drugs
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Married, father of three daughters; now 46; diagnosed w/ Major form MDS 6/18/2013; had low counts across the board; Multiple chromosome abnormalities; Finished 2nd round Dacogen 9/13; SCT - Oct. 31, 2013; Sibling match 10/10 ; 5.5% blasts down to 3%, now 1% (post BMT)
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