Home         Forums  

Go Back   Marrowforums > Treatments > Transplants
Register FAQ Search Today's Posts Mark Forums Read

Transplants Bone marrow and stem cell transplantation

Reply
 
Thread Tools Search this Thread
  #1  
Old Wed Jan 2, 2013, 04:37 PM
Cam Cam is offline
Member
 
Join Date: Oct 2012
Location: Jacksonville, Florida
Posts: 88
Post Transplant Question

I have been out of the hospital now for 11 days. They are taking my Hickman line out on Monday, YAY I hate having the lines in my chest. They do not want me to drive more than like 5 to 10 miles now even though all my numbers are a lot higher than they have ever been. My Hgb is over 11, platelets over 120, and ANC is 4. How long did everyone else have to wait to drive? When do you get your taste back? I am ready for food to taste like something other than unflavored oatmeal.... Also is wierd since my taste is gone my smell is heightened and that is my main cause of nausea. The smell of cyclosporine really triggers it. I know I am impatient, if you ask my wife and kids God left that out when he made me... LOL I hope everyone is having a better new year and hopefully those that are waiting will get matches soon.

Thanks..
__________________
Cam, BMT 12/6/12 for MDS, diagnosed August 2012 beat it in December 2012
Reply With Quote
  #2  
Old Wed Jan 2, 2013, 05:42 PM
Neil Cuadra Neil Cuadra is offline
Owner
 
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,553
Cam,

My wife was at home for 2 months after being released from the hospital following her matched-unrelated-donor transplant. It wasn't about driving, but about the risks of infection out in the world.

Perhaps that was overcautious, but we know another patient who ended up having health setbacks after taking unnecessary risks right after a transplant, contrary to doctors orders.

If you press the doctors they may relent on the stricter orders, but isn't sticking out the wait safer in the long run?

I'm glad you'll be done with the Hickman. It served its purpose and now you're safer without it.
Reply With Quote
  #3  
Old Wed Jan 2, 2013, 07:59 PM
Cam Cam is offline
Member
 
Join Date: Oct 2012
Location: Jacksonville, Florida
Posts: 88
Well the real reason for the driving is that my wife has to go back to work. I have to be able to get my son to school and myself to the hospital to make it all work easier. I really avoid places like the plague...
__________________
Cam, BMT 12/6/12 for MDS, diagnosed August 2012 beat it in December 2012
Reply With Quote
  #4  
Old Wed Jan 2, 2013, 08:35 PM
BrianFlaigmore BrianFlaigmore is offline
Member
 
Join Date: Jul 2012
Location: San Diego CA USA
Posts: 27
When I was released from City of Hope in Los Angeles +100 I was allowed to drive from San Diego to LA (2 hours) for my appointments alone within a couple of weeks and my numbers were quite a bit lower than yours. It's definitely a convenience to be able to drive, but perhaps there is good reason that your doctor keeping it a slow process. I would tend to blame Cyclosporine for all of your nausea/smell issues since the stuff tore me apart to the point we had to dis-continue it for Tacrolimus. But it's probably just my bias (:

Best wishes on your post-transplant days! Brian
__________________
26m Mystery liver failure 6/11 treated with prednisone. Falling counts, Rituxan attempted for Evans syndrome 11/11. Tx dependent and SAA dx 12/11. hATG 2/12, no response. MUD BMT 5/6/12. Living life!

Last edited by BrianFlaigmore : Wed Jan 2, 2013 at 08:38 PM. Reason: added information
Reply With Quote
  #5  
Old Thu Jan 3, 2013, 02:49 PM
Mary4Mike Mary4Mike is offline
Member
 
Join Date: Oct 2010
Location: Michigan
Posts: 68
I don't remember the time period they gave my husband not to drive, but on the way home from the hospital, he had me pull over in a rest area where he took over the driving. He drove to all his doctor check ups afterwards. We were 1 hour and 15 minutes from the hospital. I am not saying this was proper by any means. I am sure the warning is because you are in a weakened condition and your responses may not be up to what they should be considering what you have just been through regardless of the fact that your counts are coming back.
As far as taste, it took a good 2 to 3 months for my husbands to come back. Also, he couldn't stand warm or hot food. He preferred sandwiches, cereal, etc. He also had issues with dry mouth and had trouble eating because of that. I don't remember the heightened sense of smell. He, too took Tacrolimus, then was switched to Sirolimus. After 3 years, he is off everything. His only issue is dealing with high iron because of the numerous transfusions. He does phlebotomy every week and with the Lord's help, it seems to be working.
There is Light at the end of this tunnel. Just listen to your docs and be cautious when around other people~~~~especially this time of year!
All the best!
__________________
Mary, wife of Mike age 70; diagnosed MDS RARS 1999. Tried Vidaza, Revlimid, and Dacogen. SCT 10/1/09 at U of MI; induction FluBu2; sister perfect match donor. 5 years out, little to no GVHD. Off all meds. God is good
Reply With Quote
  #6  
Old Wed Jan 9, 2013, 12:10 PM
mausmish mausmish is offline
Member
 
Join Date: Mar 2010
Location: Maryland
Posts: 453
I can't remember how long I waited to drive. It took my taste buds a full year to return. For me, pretty much everything tasted very bad - not without flavor but with a horrible bitter/sour flavor. This much time is apparently uncommon, particularly since I didn't have any immunosuppressants. However long, don't give up! Eventually things will taste better again. I also had a heightened sense of smell. How are you feeling otherwise?
__________________
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

Last edited by mausmish : Wed Jan 9, 2013 at 04:52 PM.
Reply With Quote
  #7  
Old Wed Jan 9, 2013, 08:20 PM
Cam Cam is offline
Member
 
Join Date: Oct 2012
Location: Jacksonville, Florida
Posts: 88
I feel good. I actually dug out my running shoes yesterday and I think tomorrow I will get out and do some walking... Time to get out of the house and start working to get better... Right now they can not decide if I have a slight case of GVHD or an allergic reaction to a drug I am taking.. But it is a rash and no biggie... Thanks for asking...
__________________
Cam, BMT 12/6/12 for MDS, diagnosed August 2012 beat it in December 2012
Reply With Quote
  #8  
Old Wed Jan 9, 2013, 08:49 PM
mausmish mausmish is offline
Member
 
Join Date: Mar 2010
Location: Maryland
Posts: 453
Glad to hear you're doing so well! My doctors are alwys happy about a little GVHD, "just enough to keep the cancer away"!
__________________
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
Reply With Quote
  #9  
Old Thu Jan 10, 2013, 07:26 AM
Lori Patrick Lori Patrick is offline
Member
 
Join Date: Oct 2010
Location: Indianapolis, Indiana
Posts: 166
Cam, Wonderful news that you are feeling so well. I did not lose my taste buds while in the hospital. When I came home everything smelled like the hospital. I actually gained 20 pounds during my illness and with the prednisone I am on for the skin gvh I am not shedding any of that yet. As for driving, I was way too weak to drive. Maybe that is partially because I was 51??? I took it easy and napped a lot. Hang in there. I am 2 years post transplant this Friday. Woo Hoo! Blessings to you, Lori
__________________
Lori, female age 53 dx MDS-RAEB-II 15% blasts 10-2010. Induc Chemo 10/14/10 for 7 days - results unacceptable so 5 additional days chemo. Complete Remission 12/10/10!! SCT 1-11-11 remission achieved!!! BMB 1-29-11 100% Donor! cgvh eyes,skin (Caringbridge.org/visit/loripatrick)
Reply With Quote
  #10  
Old Thu Jan 10, 2013, 09:41 AM
Cam Cam is offline
Member
 
Join Date: Oct 2012
Location: Jacksonville, Florida
Posts: 88
Thank you all for your continued support. I have had one belief through out all this. You can get up every morning and decided is today going to be good or bad, I decide they will be good then work to make them that way... And having gone through this so far I find that has helped me a lot...
__________________
Cam, BMT 12/6/12 for MDS, diagnosed August 2012 beat it in December 2012
Reply With Quote
  #11  
Old Fri Jan 11, 2013, 08:59 PM
Lori Patrick Lori Patrick is offline
Member
 
Join Date: Oct 2010
Location: Indianapolis, Indiana
Posts: 166
Just remember that Cam!
__________________
Lori, female age 53 dx MDS-RAEB-II 15% blasts 10-2010. Induc Chemo 10/14/10 for 7 days - results unacceptable so 5 additional days chemo. Complete Remission 12/10/10!! SCT 1-11-11 remission achieved!!! BMB 1-29-11 100% Donor! cgvh eyes,skin (Caringbridge.org/visit/loripatrick)
Reply With Quote
  #12  
Old Sun Jan 27, 2013, 12:32 PM
gramous gramous is offline
Member
 
Join Date: Apr 2012
Location: belgium
Posts: 73
hello Cam,

how are you? I don't see any news of you for a while... hope that you're fine.
béné
__________________
boyfriend with RARS-T dx 11/02//dx : hb 11,5; plt 870000, wh : 6500//Before fasting cure (13/04): hb: 8,9; plt 2200000; white:6000//After fasting cure (14/09): hb 12,5; platelets 400000, wh 3000.//Now (15/08) : hb : 11,plt : 650000, wh 3000// hydrea 1c/day and cardioaspirin, 1c/day,age: 56 y.
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
Male fertility post transplant sstewart09 Transplants 1 Tue May 5, 2015 02:22 PM
BMB 1 Month post transplant question rar MDS 4 Wed Aug 13, 2014 04:12 AM
Post Transplant Meals Kari M Transplants 5 Fri Mar 8, 2013 05:42 PM
Post Transplant donna j. Transplants 3 Tue May 15, 2012 10:32 PM
NMDP Provides Transplant Information Marrowforums Transplants 1 Tue May 8, 2007 04:00 AM


All times are GMT -4. The time now is 11:29 AM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright © 2006-2020 Marrowforums.org