How are you? Celia and I just got back last night from another trip to CO! We learn something new each time we go for me to have a treatment. I had some questions and was not necessarily happy w/the answers. I wondered if other avm patients Dr. Yakes has, have as much trouble w/bleeding as I do. Yes. I also had wondered and hoped that the closer I would get to finishing treatments (embolizations) that maybe I would be less likely to have a spontaneous bleed. The answer was, as long as there is a trace of avm, then there is a chance of a bleed. So, from now on until this avm is completely gone, I can have a spontaneous bleed - ugh! I can't help but think about whether this will really all be over one day. The answer I got was one I pretty much knew the answer to - after Dr. Yakes declares the avm is taken care of, he'll have the patient come back w/in 6 months to have an MRI done, to make sure he didn't miss an area, or that there has been any regrowth. If there is, then there will be more embolization done (usually very mininmal) and then another 6 month wait and another MRI done to see if all is clear. I'm thinking once a year has gone by, then the reconstructive surgery begins. I hope not to have any more facial paralysis or chipped teeth or losing crowns! As time goes on, I can wait a year and then longer to have the avm checked out and we make sure it won't come back!
Some of my favorite nurses - Jill, Judi and Laura came to say a special hello, as did Jason and of course Alex (a/k/a "Jacob Black") was on duty, so I enjoyed talking to him! Burgess must have been off, because I didn't see her, and Saba has gone to nursing school from what I understand, so I don't get to see her as a tech to come in and take my vital signs anymore! Each night I was there, Jack was my nurse and he came in the room one time to find me nearly tipped off the bed to the right! He made sure an extra hand rail went up so I wouldn't fall off the bed! I always enjoy talking to Victoria - she is in housekeeping and is from Africa! Always in a good mood and assures me I will recover completely as she has seen many patients do so! She keeps me in her prayers and that is very much appreciated!
The day before being released from the hospital, one of the nurses came by to ask if she could have my blog address to give to another Dr. Yakes patients that was in a room down the hall! Of course - always nice to hear from a fellow avm-er! I went down to the nurses station later and asked about the patient, hoping to meet her, but she had company @ the moment. We left the following day, so I never did get to meet this patient! I will always be grateful for all Shalon has done for me regarding having an avm and relating to someone pretty much in the same situation!
The weather was decent - no snow during the time we were there! I think Celia said the lowest it got might have been in the 50's. I was pretty much stuck indoors @ Swedish the entire trip! We did get a chance to hit Wally World, so Celia treated me to some cute jammies and a nice jacket! Got a t-shirt from the space store @ the Houston Airport as well! We enjoy talking books - her with her I-pad and me with my Nook! These trips help us catch up - we're all so busy during the week but we always do make time to touch base w/one another @ least once a day by texting or calling each other!
All in all it turned out to be a pleasant enough trip. I tell everyone @ Swedish that I tell people here how much they make their patients feel well cared for! Had fun talking to one of Dr. Yakes fairly new patient coordinators - JoAnn! She's got us hooked on drinking some Chi Tea from the coffee shop downstairs! I believe Becky is the other patient coordiator and she was telling us what she likes ordering @ Starbucks, so we got some good tips! Andie was the P.A. we dealt with most this trip - did see Mandi as well, but didn't get a chance to see Kelly!
For the most part, I have been able to deal with having to go through this medical crisis, and sometimes I even forget about it until someone stares, I feel rotten or I have a bleed! I know there is no way Mark and I could get through this without our faith, love, prayer and support of our families! It's great to be home after Mark had been gone 4 days to OH. Then I was in the hospital a couple of days here, then Celia and I left for Denver! Hanz and Bella are probably wondering what's going on w/their folks coming and going all the time! I know when Mark was gone, they missed him terribly!
My sister Celia and husband Greg go above and beyond in helping us through this difficult time! From expenses to emotional support and lots of prayer! Marks brother Jim and his wife Shelley in Rockport give us so much support as well! They are both there for us if we need anything and never hesitate to let us know how much they care! If I didn't have all that, I would be a lot worse off! My darling husband is amazing - he often has to clean the bloody mess my avm bleeds leave behind since I can't bend down to do it myself! Mark knows exactly how to make my favorite comfort food, so even if I can't always eat what I want, @ least what I do get to eat is delicious! Mark puts in a full day of work - (sometimes working out in the hot, humid, Texas heat and that can really drain you)! He'll rest a bit and then make sure I'm well taken care of. Makes our dinner, takes care of the dogs if they need bathing, grooming, feeding - plus he picks up the chores I can no longer do depending on how I'm feeling! All I really do around here is the wash and that's not much, but all I can handle @ the moment!
Here are some photos of our trip - Fall in Denver, leaves changing colors, something we don't see down here! Being transported to OR talking to Mark and then waiting in OR to be set up for procedure. The bulletin board on the 7th floor feature my peeps that take care of me while I'm thier patient! Then of course, that's me in front of the hospital sign - my home away from home!
So onward we go ... hoping and praying for mininmal bleeds until all of this is behind me one day! Thank you for coming on this journey with me! Every single one of you matter and are a part of my recovery from what we are going through right now!
Sunday, November 4, 2012
Posted by Dulce at 11:12 PM