highsmith
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Ladybug-I am so sorry Dave is struggling. I hope things turn around! I am new to the board, but my dad is being treated at Barnes and we were in the ER for 12 hours today and my dad was admitted. We seem to have different doctors (Linehan and Crippin for GI and transplant) and Tan for Oncology but it is a small world! We spent 44 days there in March, April and May and had fabulous care in CICU on the 8th floor and then the 6th floor(all over, five different rooms and counting. We, too, have had two different wound vacs and J and G tubes and all the home care and agony that goes with it and now eight admissions since then.
I spend many,many days in the halls. Please feel free to email me if you want to have coffee or lunch!
I am sorry your husband is not doing well, mostly mentally and emotionally.
In addition to everyone else, I would talk to the Dr. about antidepressants. My dad has had about three cross words with me until his CC diagnosis in March. I never saw him cry before all this. Even with a positive diagnosis, this has to be life changing for him in many ways…and you too, but he likely can’t see that yet. Frankly, in the beginning, I was annoyed with the social worker, but she was a godsend in the end. They can help you with so many things and they have been through this before!As the primary caregiver and trying to take care of small children, you are doing so much! Give yourself a break too!! I,too, am new to the board and they have been so welcoming and kind. I hope you get some answers!
Stacey
We spent twelve hours in the ER today and they decided to admit my dad. I am actually grateful they admitted him. He needs fluids and a few more tests but no bowel perforation, which was our biggest concern. Because he is still under treatment for MRSA, he gets a private room and I get a night of sleep.
On a sour note, his liver function is worse today than it was Tuesday. Not a big surprise, but disappointing too.
Welcome Schrums4! The roller coaster seems to give all of us a once in a lifetime experience. I am new to the board and it has been wonderful.
Stacey
I am new to the board but wanted to add a few fabulous docs at Barnes (St. Louis, Missouri).
Dr. David Linehan-Chief of hepatobiliary-pancreatic and GI surgery-THE best!
He did three surgeries, in three days, on my dad and two started before dawn! I think he may have spent more time than his residents and fellows(later to be known as an entourage larger than Lady Gaga’s), in the ICU, that first week after my dad’s surgery.Dr. Benjamin Tan-Oncologist/Hematologist; Very conservative in treatment but very knowledgeable and caring. He has a star of a right hand wo(man)…his main nurse and our life line, Joan James.
Dr. Ida Fox-Not many of you will need her, but she is a plastic and reconstructive surgeon and AMAZING!!! My dad is a big guy (6’2″, 250+pre-surgery) and his entire abdomen was left open after complications of the Whipple (x3). She did an amazing job and had a beautiful pencil line scar…before he had an awful encounter with MRSA…but not Dr. Fox’s fault.
Dr. James Duncan-Interventional Radiology-I have had less face time with him, but he has been there through it all.
Dr. Jeffrey Crippin-Transplant surgeon…He turned us down, but he is one of the best!
If anyone has questions, feel free to email me!
Stacey
kmiller-If I may be so bold, after only seven months, giving your mom a weekend “off” or a break would likely be helpful. Phil has had major complications that have required more “nursing” than many, but the day in and day out without any change take a huge toll.
Magic-Congrats on the escape!
My friends are early 40’s, so it will be a bit before they escape. Her husband is a VP with Westpac and does quite a bit on the telly these days. Another dear friend is an Ex-pat who was born in Melbourne, but raised in Brisbane. Last year, I was lucky enough to have a long holiday all over Australia and take in all the tourist and local sights and sounds!Kmiller-I totally understand where you are coming from. I actually live in Denver and have a five year old daughter. I have left her in Denver, as she is in school and has all her activities there and there is no way I could care for my dad and take care of her at the same time. As hard as it is for us to accept Phil’s diagnosis, I cannot imagine that same diagnosis for my sister (or myself), who are verging on 40. I have spent about six weeks of the last seven plus months in the same city as Charlotte and it is brutal. The role of caretaker has fallen exclusively on me and it is taxing.
Linda Z-My dad is on a strict no Ibuprofen “diet”. We use Aleve for discomfort and Percocet for real discomfort. Because my dad runs fever on a regular basis, we try not to give him anything extra unless it is 103 or higher. Then, it is ES Tylenol. My dad did have his stomach resected as part of his Whipple, so I think that is part of his issue.
kmiller-
Welcome! I am so sorry your sister is fighting this battle. Many thoughts and prayers to you and your family. Have faith that MD Anderson is amongst the best in the world and your sister gets the best treatment choices she that are out there.
Stacey
Thanks Janet!
My dad, Phil, was in really good shape for his age. He is an ex-football player (US style) and was very “fit” for 61 years old going in. We thought we lost him three or four times and my sister, who was 38 1/2 weeks pregnant the day of his surgery, had to fly to St. Louis and deliver here, to make sure she got to see him. Luckily, he defied the odds the last seven months. I am just trying to gather as much information as I can these days, as the battle seems to be “on” again.
We had to wait for his abdomen to be closed to get back in line for chemo and now the MRSA has totally set us back. I appreciate the insight. We have been warned the MRSA will complicate everything and his reconstruction surgeon was visibly upset when the diagnosis came back. She is a pro at what she does and was just crushed for him.
As a side note, I have a dear,dear friend in Epping! Are you in Sydney?
Have any of you heard of this?
http://www.bizjournals.com/stlouis/stories/2009/01/05/story11.html?surround=etf&ana=e_article
I am not endorsing it, simply trying to find any background on it.
TIA,
Stacey
Thank you Lainy!
I have been trying to read and I am encouraged by some of the posts. Unfortunately, my dad has had a return of too many symptoms for comfort, but we fight every day. I flew here with a carry on and it has now been over seven months!
Pam-
I am new to the board and wonder how your dad is doing? My dad is also going to start chemo, as soon as he is well enough to tolerate it and we are deciding between the one or two combo. My dad had a Whipple, in March of 2010, and had to have dialysis, after many complications, thus the concern with heavy duty chemo.
Tom-
My dad has CC and was able to have a Whipple, but still needs further tx and are awaiting him to be healthy enough to start the chemo combo. We, too, are fortunate to be in a facility where they are doing the genetic testing to try to customize chemo treatment. There is a sub-branch of the NIH at our main hospital (Barnes, St. Louis, MO.) Unfortunately, we have been told that the back log is 3-6 months, so we may have to change mid-stream. My dad
signed the eight page release and we are in the cue. Fingers crossed we get some results from this exciting new path!Best of luck,
Stacey
