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  #1  
Old Thu Sep 12, 2013, 12:14 AM
Heather8773 Heather8773 is offline
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Advise for returning home after BMT?

Any advise on things I could/should do or be prepared for after my husbands release from hospital after BMT? Is there any caregivers or PTs that would be willing to "paint a pic " on what day to day will look like when he first gets released?
All replies appreciated!
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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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  #2  
Old Thu Sep 12, 2013, 11:16 AM
KathyM KathyM is offline
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Hi Heather-
My H is almost 5 months post-transplant. His was an unrelated donor 10/10 male match.

Like you, we had no idea what to expect. I think we had visions of his being perhaps bedridden, not able to perform any daily functions of living, etc. I thought he would need round the clock care, etc.

He was tired, weak and needed to rest a lot. But he was able to manage the steps, fix himself something to eat and basically do all the things he needed to do for himself, personally. He wasn’t able to manage his medication – I did all of that for him (I still do)– and that was overwhelming – I remember it would take me about 45 minutes to get it all together. I used those weekly pill containers – and he had 5 of them – wake up, breakfast, lunch, dinner, bedtime – each of the little containers were filled to the top! I remember it used to take him about 30 minutes at each sitting, just to swallow all his pills because he was still having mouth issues. He also was suffering from hand tremors at that time.

I also remember his being quite cranky at times too. No matter what I did – he wasn’t happy. He was argumentative and just not himself. He’s typically very easy-going. However, that too, soon passed. I would just brush that off because I knew emotionally he was going through so much – he was scared and coming home from the hospital after being there for 5 weeks – I think he missed the comfort of knowing the doctors and nurses were just a few feet away in the event something happened. Again, that didn’t last long either.

He had issues with gvhd of the skin and the intestines; at one point his wbc counts dropped for about 3 weeks – then went back up. About a week after he was discharged from the hospital – he was back in for 6 days with a-fib of the heart. He was back and forth to the clinic and specialists for tests and procedures, it seemed almost weekly. The drs all assured us this was NORMAL. In time those issues resolved.

When I look back at pictures from that time – I can see that he was pretty much in a daze – like “what the heck just happened – I feel like I’m in the twilight zone”

Each week he has gotten better and better. There have been slight set-backs, for sure – but honestly, the anticipation was much worse than the reality. When you consider the monumental thing that his body went through – its just absolutely incredibly amazing!

One piece of advice I will give you is – make sure you have a few reliable people who can help you with taking him for his appointments. That was a huge help.

I stayed home for 2 weeks when he was originally discharged. When I went back to work we both felt confident that he would be fine by himself…and he was. Luckily, I only work about 20 minutes from home, so in the event that anything happened, I could get home quickly. We developed a routine where he would call me in the morning and the afternoon so that I would know how he was doing. Also, friends and family would check in on him periodically.

Today – at 5 months out – he is doing great. He just began driving himself to his own clinic appointments (which are now down to once every two weeks). He’s teaching himself how to cook (yay! for me!). He does the laundry and handles the day to day things at home while I’m at work. He’s beginning to get bored – which I see as a really good thing! That means he’s getting better. He tries to get outside most days for a walk and he says that really helps with his energy level.

We did try to get creative with the restrictions – for instance, in the beginning, he was not allowed to go outside very often – if it was windy or too sunny – so, he took to sitting in the garage with the door up, as a way to get outside. Also, when he was feeling up to it – we would go to restaurants for dinner – and bring his dinner with us – and I would order off the menu. At least it got us out of the house. We would even take his own utensils and napkins. I would call ahead to the restaurant and explain the situation –and people were always very accommodating. Again, it was a good way to begin to feel “normal” again and get back out in the world.

He still has a ways to go – but overall we are both really pleased with his recovery so far. Dare I say, life almost seems to be getting back to normal, or maybe I should say a “new normal”.
__________________
Kathy, wife of Dennis (58 yrs old) diagnosed October 2012 w/MDS; bone marrow biopsy confirmed significant fibrosis;blast cells of 5%-10% of total cells, high risk refractory anemia w/ excess blasts (RAEB1); 3 cytogenetic markers; +1, -7, and +21
http://www.caringbridge.org/visit/dennismolyneaux
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  #3  
Old Thu Sep 12, 2013, 11:48 AM
Whizbang Whizbang is offline
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First let me say Heather, good luck on your Husbands SCT/BMT, we've started getting my bedroom bathroom in order, decluttering, getting the carpets cleaned, have to get new sheets and mattress bags (hypo-allergenic covers)... I also put vent filters on all the heating/AC vents...

KathyM,

It's really good to hear a good success story, especially since I'm due form mine very soon (next month)... Wishing you guys the best...

God Bless and be well...
__________________
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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  #4  
Old Fri Sep 13, 2013, 01:28 AM
mausmish mausmish is offline
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Heather,

I was the transplantee. My husband and I kept a blog, mausmarrow.com. If you go to the archives for December 2010 - May 2011, you will get some insights from our experience. My biggest complaints were nausea and dysgeusia (everything tasted bad). My husband made me special milkshakes to keep me going. We cleaned out the fridge and pantry completely and started everything fresh. I didn't keep leftovers for more than a few days. Before coming home, we had the house thoroughly cleaned and took up the area rugs for the first six months. We didn't permit anyone to visit who was ill. We keep hand sanitizer by the door for everyone to use as they enter.

Mostly, I needed lots of rest. I've never been partically active - basically a loner computer nerd, ha ha, so my recovery was not difficult from from the standpoint of restrictions. I had trouble concentrating so watched tv shows instead of my usual computing, video gaming, or reading. I am not usually a tv watcher but that's all my attention span would allow the first few months. I used my ipad a lot with simple apps. I didn't really need much assistance with anything. I waited a few months before driving, again because of attention span. My cats were close by my side to keep me entertained. Hope this helps.

Best wishes to you both!
Karen
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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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  #5  
Old Fri Sep 13, 2013, 01:39 AM
Heather8773 Heather8773 is offline
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Kathy thank you so much! I really appreciate your answer! It is exactly what I needed to read. Thank you for all the good advice and support you have given to me in this thread and others
I am happy your husband is cont to improve! I have been thinking of y'all. I LOVE the creative advise on sitting in the garage! My husband will appreciate that. Hes always been a fan of sitting on the porch or in the garage at the end of the day. (even in our teens)
Wizbang good luck on your upcoming BMT we will be right there w u! When does yours start?
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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 Fri Sep 13, 2013, 08:27 AM
DebS DebS is offline
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Kathy,

First, it is wonderful to hear things are going well with Dennis! We have all hoped and prayed for that.

Secondly, thank you as always, for such great ideas. I am now including many of your ideas in my lists. They are so practical!!!! Those will help a lot of people on these forums.

Finally, we are headed to transplant. Got the dates yesterday. It is very scary as it gets closer, but just as in diagnosis, we have to hit the ground running. There is so much to do!

I will put those details in another thread that I started.

Deb
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  #7  
Old Fri Sep 13, 2013, 10:58 AM
KathyM KathyM is offline
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I'm so glad I was able to offer some help. When I first joined this forum so many people reached out to me - so I'm thrilled to now be doing the same for others.

I was even thinking about this again last night - some other important things to do might be making sure you have all the online account user names and passwords for banking, etc. - Dennis and I each had our own accounts, don't know how that ever came about - but we sat down one day and made a list of all of them which included user names and passwords so that we now each have any information we might need.

Dennis also tried to get as much done around the house as possible, he arranged for lawn mowing services and had his car inspected..those types of things.

Your hospital will probably give you a number to call during the day and evenings and weekends. I typed those numbers on labels and affixed the label to the all the phones in the house. If you have to make a call - there is no scrambling for the phone number!

Wait until you see all the medications your husband will be on! I didn't want all the bottles out on the counter so what I did was fill up the pill containers but left the actual prescription bottles in a cabinet in the kitchen. I cleaned out a bottom shelf in my kitchen cabinet which houses all the bottles and masks, sanitizers and anything else pertaining to medication. It made for more organization and easy reach. After a few weeks I cleaned out another cabinet shelf - now we have one shelf for medications he is currently taking - and another one for medications he has stopped taking. You never know when they add/stop a medication.

And definitely do a blog of some sort. You'll be amazed at how many people will want to know whats going on and you just won't have the time or the energy to keep repeating everything! Please feel free to read Dennis' blog at the link below. We've had a great response and I have really enjoyed using it.

Dennis has a tip he wanted me to pass on - when the time comes that food doesn't taste so well - sort of a metal taste - use plastic utensils - it really helps.
__________________
Kathy, wife of Dennis (58 yrs old) diagnosed October 2012 w/MDS; bone marrow biopsy confirmed significant fibrosis;blast cells of 5%-10% of total cells, high risk refractory anemia w/ excess blasts (RAEB1); 3 cytogenetic markers; +1, -7, and +21
http://www.caringbridge.org/visit/dennismolyneaux

Last edited by KathyM : Fri Sep 13, 2013 at 11:00 AM. Reason: spelling
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  #8  
Old Fri Sep 13, 2013, 11:41 AM
Whizbang Whizbang is offline
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Heather,

No date yet, but consult 9/16 at MSK and BMB/BMA 9/20 again at MSK, and my Brother is scheduled for 9/23...

So barring any calamity, and pending any results, it looks like the middle of October...

Best wishes, for a smooth and eventless transplant for your hubbies (DebS too)...

Dave
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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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  #9  
Old Fri Sep 13, 2013, 08:59 PM
DebS DebS is offline
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Heather,

So sorry I neglected to acknowledge you!!! Good luck to you and your husband. Knowing the dates is huge. We just found ours out day before yesterday.

Remember to check in here. There are so many caring people here. And people know EXACTLY how you feel. Friends and family may empathize, but here, people are in the trenches!

Whizbang--at last, we can call you Dave Good luck to you and keep us posted.

Deb
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  #10  
Old Sun Sep 15, 2013, 03:58 PM
dfantle dfantle is offline
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Quote:
Originally Posted by Heather8773 View Post
Any advise on things I could/should do or be prepared for after my husbands release from hospital after BMT? Is there any caregivers or PTs that would be willing to "paint a pic " on what day to day will look like when he first gets released?
All replies appreciated!
Hi Heather, I am 7 months post Mini (non-myeloablative) Unrelated Donor transplant for Aplastic Anemia. So although I know my transplant was different than Ronald's will be, the home protocols will likely be pretty much the same. I would definitely recommend keeping candied ginger, ginger ale, and gingersnaps on hand which sometimes helped my nausea. Some folks also like ginger tea.

I'll focus on the home environment and precautions, since my post transplant experience would likely be different than Ronald's.

GERMS: The most important thing will be to keep Ronald away from germs when possible. This includes anyone with ANY illness symptoms, (colds included). Our friends and family fully understand this and no matter what, we don't see them if any are symptomatic at all. If you have 2 bathrooms where you are living or will be staying, it would be helpful (tho not necessary) if one is fully dedicated for his use for showering, washing up... I did & still do everything hands free outside our home, including door knobs, elevator buttons, restroom stall locks... and frequently wash my hands (for 30 seconds or 2 renditions of the happy birthday song). I even have the medical gloves in the car for shopping carts. These may appear a bit extreme, but at 7 months out I haven't had even a cold, and I am out & about regularly. My husband did have a cold a few months back. He slept in a spare room, used a different bathroom, wore gloves in the kitchen & we completely avoided each other until he was better (I got all my own food during this time).

The reason why I'm still so cautious is I heard a couple of months ago that any illnesses can possibly increase your chance of GVHD because this will ramp up the immune system which isn't preferable within the first year of transplant.

FOOD: Cook foods per transplant guidelines: heating all hot foods and leftovers to 165, cool left overs for no more than 30 minutes before refrigerating in open containers until cold (keeping them uncovered allows the food to cool fairly quickly). The friends who cooked for us had a copy of our clinics food prep guidelines. If I knew anyone who I didn't think could cook to these guidelines, I didn't eat the food they brought over, so let my husband have it & I made something else for myself.
Many fresh vegetables & fruit were not OK for me within the first few months of transplant because of possible bacteria (they had to be cooked).

CLEANING: cleaning the kitchen & keeping dust to an absolute minimum are imperative. (dust can contain microbes which could be harmful to him). Our clinic suggested daily wiping down of kitchen & bathroom counters, door knobs... with a 10 part water to 1 part bleach solution & a weekly cleaning of the refrigerator using the same solution. (My husband was very good about this). The solution was to be made fresh daily as the concentration lowers after 24 hours-so he made a fresh spray bottle daily & did a full wipe down before he went to bed each night (keep rubber gloves on hand for yourself as this can really dry out your hands)

EXERCISE: Ronald should move whenever he can. Even moderate exercise will help with his healing and strength. He will be very tired tho, so may need to sleep a lot the first few months

GARDENING: None for 1 year after transplant (longer if still on immunosuppression). Dirt has microbes which aren't good for transplant patients to be exposed to

PETS: If you have any pets, he should not pet them or hold them the first few months post transplant (pre too if you have cats)/

We live near Seattle, so my transplant was @ SCCA which is part of Fred Hutchinson. SCCA has required pre and post transplant training classes for transplant patients & their caregivers in Nutrition (which includes food prep)Home Care, & Line Care (for the central line). Does your clinic offer similar classes or training? These really helped prepare us for what to expect and how to care for transplant patients at home.

Lastly, try and keep your sense of humor, find funny things to read or watch on TV or you tube. A healthy sense of humor really does help.

I am doing really well, my labs are all normal now and I feel great. What a difference from pre-transplant when I required weekly transfusions...

If you have any questions, feel free to send me a message in MarrowForums as I don't always keep up with the different message strings

Best wishes to you & Ronald.
__________________
Dena
Age 54; DX Heavy Chain (AH) Amyloidosis 6/10; AutoSCT 3/11; Amyloidosis remission 6/11; DX SAA 7/11; Horse ATG 3/12; Mini MUD SCT 1/13; Recovered from SAA 5/13 & feeling great
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  #11  
Old Tue Sep 17, 2013, 01:31 AM
Heather8773 Heather8773 is offline
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Quote:
Originally Posted by mausmish View Post
Heather,

I was the transplantee. My husband and I kept a blog, mausmarrow.com. If you go to the archives for December 2010 - May 2011, you will get some insights from our experience. My biggest complaints were nausea and dysgeusia (everything tasted bad). My husband made me special milkshakes to keep me going. We cleaned out the fridge and pantry completely and started everything fresh. I didn't keep leftovers for more than a few days. Before coming home, we had the house thoroughly cleaned and took up the area rugs for the first six months. We didn't permit anyone to visit who was ill. We keep hand sanitizer by the door for everyone to use as they enter.

Mostly, I needed lots of rest. I've never been partically active - basically a loner computer nerd, ha ha, so my recovery was not difficult from from the standpoint of restrictions. I had trouble concentrating so watched tv shows instead of my usual computing, video gaming, or reading. I am not usually a tv watcher but that's all my attention span would allow the first few months. I used my ipad a lot with simple apps. I didn't really need much assistance with anything. I waited a few months before driving, again because of attention span. My cats were close by my side to keep me entertained. Hope this helps.

Best wishes to you both!
Karen
Karen idk why I didn't see your response last time! Thank you! It was good to read your point of view . Interesting about the attention span thank you. I will keep that in mind while hes healing.
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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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  #12  
Old Tue Sep 17, 2013, 01:54 AM
Heather8773 Heather8773 is offline
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All of the advise on this tread you all have given has been amazing thank you!! Kathy My husband said to tell Dennis thank you for the plastic wear advise. He seemed to already relate to it (?)
Dfantle thank you for your response! So clear, I needed that. And im very greatful for the GVHD advise!yes we have had the pre transplant class so far and they said we will have the post. I'm so happy your doing well! That's awesome your w the Fred Hutchinson group! We really considered relocating so we could go there.
Debs thank you I appreciate your trenches comment so true we will be right there w y'all in oct. praying and fighting!
Dave I wish the same for you thank you! My husband had another BMA/BMB today. It was the smoothest so far but more leg (calf) pain after(?) idk has anyone had pain mainly in calf after? But BMA was way more tolerable this time so that's awesome! Dave deb and I w our husbands will be right there w u next month!
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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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  #13  
Old Tue Sep 17, 2013, 07:27 AM
susanML susanML is offline
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Advice

Hi all - I am in the process of searching for a donor and all the advice is really helpful - I am wishing everyone the best of luck and hope I do as well as what I am reading. I do have to admit I am going thru the nervous part now waiting for a donor. I know one will come my way. Best wishes 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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Old Sat Oct 26, 2013, 07:10 PM
dfantle dfantle is offline
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Susan, I hope your donor search is going well!
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Dena
Age 54; DX Heavy Chain (AH) Amyloidosis 6/10; AutoSCT 3/11; Amyloidosis remission 6/11; DX SAA 7/11; Horse ATG 3/12; Mini MUD SCT 1/13; Recovered from SAA 5/13 & feeling great
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Old Mon Oct 28, 2013, 09:10 AM
susanML susanML is offline
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dfantle

Hi - Thank you - I heard they found a 10/10 match for me and couldnt believe it!!! I kept saying are you sure? I go Nov 4th for the timeline of what happens next. Hope you are doing well.
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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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Old Thu Oct 31, 2013, 07:32 PM
Heather8773 Heather8773 is offline
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Susan that's fantastic!
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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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  #17  
Old Fri Nov 1, 2013, 07:21 AM
susanML susanML is offline
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Hi all -

Well Monday is finally coming faster to get the details. I am so happy and ready to get going. I have loved reading everyones blogs on how they are doing and am ready to become one of the successes also. Keep it going!!! Love ya - 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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  #18  
Old Fri Nov 1, 2013, 05:53 PM
sbk007 sbk007 is offline
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Lots of luck and you have to change looking for match to found my match.. .
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Old Fri Nov 1, 2013, 06:22 PM
Susan L Susan L is offline
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Smile sbk007

Thank you and will do----excited - scared - all at once
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Susan Patient, 58, MDS, UPDATED 9/13
Now have RAEB-2, Firbrosis 3+, blasts 18% peripheral, 10 - 14% blasts marrow, chromosomes now T 1:21, trisonomy 16 and 1.- Match found ---10/10 -couldn't believe when I heard - Tentative day is 1/09th!!!! Admit date changed to 11/12. WOW -
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Old Fri Nov 1, 2013, 07:10 PM
DebS DebS is offline
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You go, Susan!!! We are all rooting and praying for you. I am sure that once you get a schedule and get more things in place, you will feel more at ease. The not knowing part is always the scariest.

Rest up, exercise, and eat this weekend!!!

Deb
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Old Sat Nov 2, 2013, 08:00 AM
Susan L Susan L is offline
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Deb/Doug

Thank you - I will be so happy for the news and hope to do as well as all of you - it is amazing to me.
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Susan Patient, 58, MDS, UPDATED 9/13
Now have RAEB-2, Firbrosis 3+, blasts 18% peripheral, 10 - 14% blasts marrow, chromosomes now T 1:21, trisonomy 16 and 1.- Match found ---10/10 -couldn't believe when I heard - Tentative day is 1/09th!!!! Admit date changed to 11/12. WOW -
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Old Sun Nov 3, 2013, 02:15 AM
Tii Tii is offline
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after the hospital

I had my dad move in with me and be my caregiver after I got back home from the hospital. He had the Merry Maids-cleaning service come and clean the place, he had the carpets washed professionally and he cleared some counter space for the 14 different medications I came home with. The home nurse brought 2 boxes of supplies as well. (Dad ended up staying for 5 mo!!)

You want to change bed sheets every few days, change his towel every day, maintain a germ free environment by using lysol spray and the antibacterial wipes and gels.

Eating and drinking enough was the hardest part since now it was really up to you to figure out what was going to be healthy and tasteful. Which water bottle brands were on the authorized list. But if it was a half a can of pineapple or a slice of rye bread that appealed to me, then that's what I got, as long as I ate something every now and then, dad was happy. The liquid nutritional drinks from CVS or pharmacy were a good source of vitamins and minerals.

Car rides were fun, because I couldn't be in the general public, but this way you kind of got out of the house a bit to get fresh air. Also one or two block walks, covered with long sleeves, scarves, hats, mittens, masks felt like a overwhelming task, but very important to do during early morning or after the sunset. And it is not so you wouldn't be sunburn, but the BMT could fail.

It was bit challenging when dad got sick with a head cold and fever. We had to maintain long distance from each other in the same house, yet I still needed his help occasionally with the port dressing or with driving to the clinic. That forced me to cook for myself.

Go with the flow, keep a daily log with daily temperature, blood pressure and weight on a bathroom scale. Do not hesitate to call the on call doctor for any symptoms that happens. They are your doctor and get paid big money, no shame on asking a question. Really not much happens after discharge other than doctors appointments, bunch of laying around and napping. And washing hands.

I wish you all the best!

Tii - 37 yrs old, MDS (11 mo post BMT)
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  #23  
Old Sun Nov 3, 2013, 03:09 PM
Susan L Susan L is offline
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Tii

Quote:
Originally Posted by Tii View Post
I had my dad move in with me and be my caregiver after I got back home from the hospital. He had the Merry Maids-cleaning service come and clean the place, he had the carpets washed professionally and he cleared some counter space for the 14 different medications I came home with. The home nurse brought 2 boxes of supplies as well. (Dad ended up staying for 5 mo!!)

You want to change bed sheets every few days, change his towel every day, maintain a germ free environment by using lysol spray and the antibacterial wipes and gels.

Eating and drinking enough was the hardest part since now it was really up to you to figure out what was going to be healthy and tasteful. Which water bottle brands were on the authorized list. But if it was a half a can of pineapple or a slice of rye bread that appealed to me, then that's what I got, as long as I ate something every now and then, dad was happy. The liquid nutritional drinks from CVS or pharmacy were a good source of vitamins and minerals.

Car rides were fun, because I couldn't be in the general public, but this way you kind of got out of the house a bit to get fresh air. Also one or two block walks, covered with long sleeves, scarves, hats, mittens, masks felt like a overwhelming task, but very important to do during early morning or after the sunset. And it is not so you wouldn't be sunburn, but the BMT could fail.

It was bit challenging when dad got sick with a head cold and fever. We had to maintain long distance from each other in the same house, yet I still needed his help occasionally with the port dressing or with driving to the clinic. That forced me to cook for myself.

Go with the flow, keep a daily log with daily temperature, blood pressure and weight on a bathroom scale. Do not hesitate to call the on call doctor for any symptoms that happens. They are your doctor and get paid big money, no shame on asking a question. Really not much happens after discharge other than doctors appointments, bunch of laying around and napping. And washing hands.

I wish you all the best!

Tii - 37 yrs old, MDS (11 mo post BMT)
Hi - Just a question - did you work before the transplant? If so - are you back at work now or going back?
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Susan Patient, 58, MDS, UPDATED 9/13
Now have RAEB-2, Firbrosis 3+, blasts 18% peripheral, 10 - 14% blasts marrow, chromosomes now T 1:21, trisonomy 16 and 1.- Match found ---10/10 -couldn't believe when I heard - Tentative day is 1/09th!!!! Admit date changed to 11/12. WOW -
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  #24  
Old Mon Nov 4, 2013, 11:30 AM
Heather8773 Heather8773 is offline
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Join Date: Jan 2013
Location: Houston, TX
Posts: 254
Tii thank you so much for your response very helpful. Can you clarify for me about wearing long sleeves and a scarf so the transplant wouldn't fail?
Thank you for writing your age, and months out I see your close to 12 months how exciting! If you dont mind me asking.. Did you have a MUD or sibling match? PBSCT or marrow?
Thank you again so much for your response!
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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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  #25  
Old Tue Nov 5, 2013, 02:23 AM
Tii Tii is offline
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Join Date: Nov 2013
Location: Los Angeles, CA
Posts: 22
Hello

Susan, hello, I was working full time until the 4th of December and then on 5th of December I was at the hospital at 7am getting platelets for my port surgery and then checked in at the transplant department after that. Staying busy, being at work with friends kept my mind strong and pre-occupied from worrying etc.
My doctor estimated that I would maybe, maaaaaybe go back to work in July, and I ended up going back in August. Currently I work 4 days a week, 5 hours a day, but I am going to increase the hours to 8 hours a day very soon. I am restricted to be in the office setting only and around up to 3 people.
Going back to work has been the only one thing I wanted the most during this recovery time. I hung my work shirt on the cabinet door so it was the first thing I saw when I woke up, motivating me to get better. And it worked

Hi Heather,
My only sister was my donor, she went through a very hard time with all of this. I think she was far more emotional and scared than I was. She had to do the cell harvesting two times and unfortunately they couldn't get enough cells, so they had to do the hip puncture. She was poked 150-200 times on each side and stayed at the hospital for one night. My transplant was frozen bone marrow/stem cells, that were forced into my port, rather than a bag of blood like the preparation book said. I also had a bad reaction to it, because my sisters red blood cells had survived the freezing and her type B reacted immediately with my type O blood. My whole stay ended up being 6 weeks and I was staying in the same room that she had. That must have been a sign, that she was with me all the time.

The sun rays are radiation, and can be very harmful for transplant patients. I first thought that it was so we wouldn't be sunburn, but like antibiotics, the anti rejection medicine comes with warning labels to stay away from the sun. It is serious. Therefore I still cover up with long pants, long sleeves and I spray SPF50 on my neck and head. Now finally that I have some hair and don't have to wear a scarf, bandana, wig or a baseball cap. My other transplant friend was told to stay away from the sun for at least two years. I have always been a beach bum, and the thought of not going to Mexico is sad, but I'd rather live a longer life than risk it.

So how are you, as a care giver handling all of this? What scares you the most?
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