Home         Forums  

Go Back   Marrowforums > Bone Marrow Failure Diseases > MDS
Register FAQ Search Today's Posts Mark Forums Read

MDS Myelodysplastic syndromes

Reply
 
Thread Tools Search this Thread
  #1  
Old Thu Aug 16, 2012, 12:18 PM
Al's Wife Al's Wife is offline
Member
 
Join Date: Jun 2010
Location: Jackson, Georgia USA
Posts: 205
Another port question

The cardiac doctor approved Al for port. What doctor inserts it? Do you have to make appt with surgeon or can doctor who does bone marrow biopsy do it at same time while he is under sedation or some other doctor? We have appt with Emory doctor in the morning but am just wondering and knew one of you could tell me. Al is still weak but temp is low grade and he is up, dressed and at his computer so at least he feels good enough for that. Got to be thankful for even small things. 😏
__________________
Linda, Al's wife, 75; dx MDS 5/2010; Vidaza 6/2010; ARRY614 & Sapacitabine clinical trials at Emory, no results, stopped 12/2011. Had BMB at NIH on 6/5/12, blasts 10-15% so he's not eligible for trial there. :eek Promacta trial, Tampa, blasts 25-30% 8/17/12 AML, trying Dacogen now and praying.
Reply With Quote
  #2  
Old Thu Aug 16, 2012, 12:58 PM
Sally C Sally C is offline
Member
 
Join Date: Dec 2010
Location: Chesterfield, Va.
Posts: 470
Hey Linda,
A surgeon put Don's port in - I believe our onc. suggested the one we used. There may be surgeons who do this procedure on a regular basis. I woudn't have remembered this if we hadn't been looking into surgery for Don's orange-sized hernia that's been there for about 13 years - he should have had it taken care of years ago when his health wasn't so complicated - but I digress .
You may want to check with your onc.
I think it's great that Al is up at his computer. It may be a small thing but with this disease you have to celebrate the little victories. And they do add up.
I know you've been having a hard time. You both have been in my prayers.
He will be so glad after he gets his port.
God Bless and (((hugs))),
Sally

Last edited by Sally C : Thu Aug 16, 2012 at 01:16 PM.
Reply With Quote
  #3  
Old Thu Aug 16, 2012, 02:07 PM
Neil Cuadra Neil Cuadra is offline
Owner
 
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,556
Linda,

Perhaps hematologists who do BMTs are technically qualified to do other surgery, but we had a "real" surgeon when my wife got her Hickman line, and also when it was removed.
Reply With Quote
  #4  
Old Thu Aug 16, 2012, 02:20 PM
ssdavi71416 ssdavi71416 is offline
Member
 
Join Date: Mar 2012
Location: Atlanta Georgia
Posts: 105
Port at Emory

Linda

I had a pick line put in at Emory back in April. A surgeon performed the procedure. I am sure that a surgeon also would put in the port. They performed the proceedure on the basement level of Winship where the imaging is performed.

Scott Davidson
Reply With Quote
  #5  
Old Thu Aug 16, 2012, 02:35 PM
Al's Wife Al's Wife is offline
Member
 
Join Date: Jun 2010
Location: Jackson, Georgia USA
Posts: 205
Thanks everyone. I knew y'all would come through for me.
He's still not 100% sure he wants one but I think he will change his mind before long, especially if they continue to have problems with his veins. After his blood transfusion and the liquid they gave him in the IV, they had no problem. But at other times, he's become a "hard stick."
I'll just be glad when 7:00 a.m. gets here. At Beth's suggestion, I bought a pulse oximeter. His oxygen level has been under 85 every time I've checked it and a couple of times 78. If I get him to take the deep breaths like Beth suggested, it goes up to around 90, most of the time.
I've emailed our local oncologist's nurse at Emory, where we are going in the morning, and shared my concerns. Haven't heard back from her yet. I just didn't know if I should be thinking about going to the ER or what.
Al is up and watching TV now and has eaten fairly good today. But I'm just freaking out at these low oxygen numbers, especially after reading online how much damage can be done to organs when your level is this low.
This has been a rough week.
Hope all of you are hanging in there!
__________________
Linda, Al's wife, 75; dx MDS 5/2010; Vidaza 6/2010; ARRY614 & Sapacitabine clinical trials at Emory, no results, stopped 12/2011. Had BMB at NIH on 6/5/12, blasts 10-15% so he's not eligible for trial there. :eek Promacta trial, Tampa, blasts 25-30% 8/17/12 AML, trying Dacogen now and praying.
Reply With Quote
  #6  
Old Thu Aug 16, 2012, 03:00 PM
Birgitta-A Birgitta-A is offline
Member
 
Join Date: Oct 2007
Location: Stockholm, Sweden
Posts: 1,918
Port

Hi Linda,
Inserting a port is quite complicated and it is often done with the aid of imaging guidance (X-ray) where the surgeon can see exactely where the catheter from the port is situated. This type of operations are done by sugeons. Hope Al will accept a port.

Persons with our kind of diseases are often used to low counts and not so high oxygen level. My doctor was surprised when I told him that I felt OK with HGB 70 at dx - I only felt a little breathless after long stairs.
Kind regards
Birgitta-A
Reply With Quote
  #7  
Old Thu Aug 16, 2012, 07:39 PM
milliken2 milliken2 is offline
Member
 
Join Date: Apr 2012
Location: Ellwood City, PA. U.S.A.
Posts: 163
Linda;
If Al does have the port put in - it should be done by a surgeon. Our hema/onc gave us the choice of 2 whose ports seem to heal quickly, and I was more familiar with one of them, so that's who we went with.

I know things aren't going as you would have liked - but please know that we are all here for you - no matter when. You are both in our thoughts and prayers. God Bless you and Al.

((((HUGS))))
Beth
__________________
Beth - R.N., B.S.N and wife of recently diagnosed husband who has been classified at stage 4 MDS. and I can't help the one I love the most.
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
how do i post a question for all MDS groups? sundco Site Comments 3 Sat Mar 31, 2018 12:16 PM
Transplant question marmab AA 12 Thu Jun 5, 2014 10:52 AM
Quick question about port Al's Wife Questions and Answers 11 Fri Sep 21, 2012 03:42 PM
Getting ready for 2nd round vidaza, getting port replaced Anne Yeomans MDS 0 Fri Jan 27, 2012 08:51 AM
Port problem kgtuck General Health Issues 0 Mon Oct 3, 2011 03:19 PM


All times are GMT -4. The time now is 11:30 PM.


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