bbbdirector's current condition

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bbbdirector

Well-known member
Joined
Apr 18, 2008
Messages
45
Location
Washington, DC
It's been a while since I last sent an update about my mom (bbbdirector).

My mother was released from the Cleveland Clinic on Saturday, Feb. 5th and transported by ambulance to a Washington DC Specialty Hosp/Rehab. My mom was totally out of it the next day (assuming she was exhausted from the 7 1/2 hr trip). The next day my mom continuously told us (the family) that she wants to go to the hospital for a few days but could not give us a specific reason. Later that day while my brother was sitting with her she started complaining of chest pains. The nurse and dr came to see about her and called the hospital where my mom wanted to go (Wash Hosp Ctr) but they said they were full and could not accept her, so another hospital was called (George Wash Univ Hosp) and they said they had room and to bring her. (This is the hospital where the heart disease originated, where she received the chemo and radiation treatment for hodgkins disease). My mom was immediately put on oxygen and eventually a breathing tube (the drs said because her carbon dioxide levels were dangerously high). The breathing tube was taken out 2 days later but my mom's breathing continued to be a struggle. She was weak but talking and eating a little and got up and walked a few steps to the chair a few times. On this past Tuesday morning, I arrived @ the hosp around 9 am and was told that a nurse or dr will come out and get me. After waiting for about 5-10 mins two drs came out to tell me that my mom was complaining of having a hard time breathing and her blood pressure dropped to 40/30 and they immediately put the breathing tube back in her which is where she is now. It was such a shock to me because she had a really good day the day before. Now she's on blood pressure medication (norepinephrine), heparin, fluid pills, occasional lasix and I'm not quite sure what other meds (I need to write all of it down tomorrow).

After spending 74 days in the Cleveland Clinic and now 11 days at George Wash Univ Hosp, we see a difference in her care and we aren't comfortable with it at all. The drs do not communicate with us regularly as Cleveland Clinic did, we have to chase down a "resident" to get an update and plan of action. It's very frustrating because we see that this hospital is a 'teaching' hospital and we have to deal with a number of different 'residents' speaking with us which we have yet to get a clear understanding of what they're doing and plan to do with my mom. This is my mother's life and having students try to figure out how to make my mom well is really weighing on me and the family. Today we were told that they will consult with the Intervention Radiology dept for a possible x-ray to search for these 'pockets' of fluid that are in both of her lungs and that this may not get done until Monday (2/21).

We're trying to find her a dr who will take her on as their patient so that they can follow her, we also would like her to be transferred to another hosp who has experience with radiated heart patients who has had OHS.

Has anyone experienced ANY of this? We truly need guidance.
 
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I'm sorry to read that your mother is still struggling with her recovery. Have you expressed your unhappiness with her care to any of the hospital staff? I would start there.
Please keep us updated.
 
So sorry for all the issues mom and your family are facing

Has anyone suggested cardiac resync via three lead ICD ....a recent study RAFT has been completed and is improving quality of life as the heart function improves it increases endurance.....may be worth looking at.... if not this I hope answers are near
 
Patient Advocate?

Patient Advocate?

I'm sorry to read this. It all sounds so very difficult, complicated, and very frustrating, especially with the weekend coming on. I recall something like this happening to us many years ago when a family member was also in a teaching hospital with complicated injuries; we needed one accessible medical person to put things together for us but it never happened.

I was reminded too of an experience a member, briansmom, had with her young adult son -- maybe another member here can recall the details? -- where she needed someone at the hospital (Cleveland I think) to coordinate the unique and complicated medical issues her son was facing. I'm thinking it was possibly a "patient advocate" though maybe that terminology was incorrect.

There is a term for some type of medical coordinator though, who can overview complicated treatments.

I web searched the hospital and found this link with a phone number: http://www.gwhospital.com/Patient-Information/Patient-Rights which has a patient hotline number on it. And, or, maybe call Cleveland's patient advocate people and see if they have a suggestion as to what to do next.

Please keep us posted. Hoping for the best :)
 
I'm sorry to read this. It all sounds so very difficult, complicated, and very frustrating, especially with the weekend coming on. I recall something like this happening to us many years ago when a family member was also in a teaching hospital with complicated injuries; we needed one accessible medical person to put things together for us but it never happened.

I was reminded too of an experience a member, briansmom, had with her young adult son -- maybe another member here can recall the details? -- where she needed someone at the hospital (Cleveland I think) to coordinate the unique and complicated medical issues her son was facing. I'm thinking it was possibly a "patient advocate" though maybe that terminology was incorrect.

There is a term for some type of medical coordinator though, who can overview complicated treatments.

I web searched the hospital and found this link with a phone number: http://www.gwhospital.com/Patient-Information/Patient-Rights which has a patient hotline number on it. And, or, maybe call Cleveland's patient advocate people and see if they have a suggestion as to what to do next.

Please keep us posted. Hoping for the best :)

EXCELLENT Recommendations Lily!

I'm not intimately familiar with the duties / functions of a Patient Advocate, but know that our Local Hospital has them and encourages patients to use them if there are 'issues'.

For Medical Coordination, that is 'usually' the domain of a Primary Care Physician.
Internal Medicine Doctors are typically more highly trained in Adult Medical Issues.

I concur with Lily's idea of contacting Cleveland Clinic for suggestions on how to get the help YOU and you mom need.

Best Wishes,

'AL Capshaw'
 
I think I know something about what you are experiencing. When my wife had a stroke while at a convention in Baltimore, she was transported to a teaching hospital. She got basic, critical care, for which we were grateful, but in the days thereafter, there was an irritating amount of student visitation and ridiculous, reptitive jargon about "outcome-based medicine." (What other kind of medicine is there?) Anyway, she was transported by ambulance back to a regular hospital in Richmond and her daily care improved bery much.

I think Lily's recommendation is excellent advice. I wish you and your mom the best goping forward.
 
, maybe call Cleveland's patient advocate people and see if they have a suggestion as to what to do next.

I agree as well. 6 months after my first surgery, I got some desease that sent me to the hospital for 10 days. After 5 days in a non-CCF hospital, my wife called my Cardio, who immediately arranged for me to be transported to the CCF. My point is, do not be afraid to get others involved.

I wish your mom well.
Scott
 
9:30am yesterday I woke up and called the doctor @ the Cleveland Clinic and poured my heart out to her that my mom is in a bad way and I do not feel as though GWU Hospital has the expertise to solve her issues, please help! The doctor told me that the Cleveland Clinic can send their airplane to get my mother if the family is okay with her coming back. I told the doctor that I will consult with the family and let her know. EVERYONE in the family said YES because we all know that the Cleveland Clinic has the expertise to test and solve her many medical conditions and due to non-expertise of the Rehab Hosp Facility as well as GWU Hospital. By 11:30pm Cleveland Clinic's airplane was @ Dulles Airport to transport her back to Cleveland! The doctor originally told me that it will more than likely take a day or two to get her transferred but GOD knew better and she was transferred early that morning. That doctor went above and beyond to get my mom back in their care and I am eternally grateful! The entire family now feels so much better within their hearts that My Mom is @ the best place for her to get back on track!

I am now back in Cleveland with my mom and a couple of my aunts and cousin are on their way now. My mom is resting comfortably and the doctors are doing everything they can to find the problems and solutions.

Thank you all for the advice!
 
What great news. i'm sorry things didn't work out so that your mom could be closer to home, but so glad she is where she needs to be to get the best care.
 
Wow, I was really feeling despair for your mom until I read that she's back at the CCF.

I really dislike having a bunch of different resident doctors too. If you're in a hospital with that setup, you could see a different resident each day. Hell, you could see a different resident at several intervals throughout the day. The problem with residents is they're too scared to make moves that may not agree with the Attending Doc's course of action. They don't dare disagree with the attending because that could potentially cost them their training/job/education/career path. There's too much at stake for them to be insubordinate, even if it is the right thing to do.
 
I haven't had internet connection for a few days so I haven't really been able to post, just read occasionally from my phone, but I knew that CCF would send the plane for her because I've seen it happen several times on another site I'm on. I'm sorry I couldn't get on to suggest it to you earlier, but glad that it finally happened for you. I hope that your mom gets the help that she needs now and can get on the path to get well. Bless her heart, she has really been through it and all of you really deserve a break. How lucky she is to have a daughter like you to be such a strong advocate for her. Hang in there.


Kim
 
9:30am yesterday I woke up and called the doctor @ the Cleveland Clinic and poured my heart out to her that my mom is in a bad way and I do not feel as though GWU Hospital has the expertise to solve her issues, please help! The doctor told me that the Cleveland Clinic can send their airplane to get my mother if the family is okay with her coming back. I told the doctor that I will consult with the family and let her know. EVERYONE in the family said YES because we all know that the Cleveland Clinic has the expertise to test and solve her many medical conditions and due to non-expertise of the Rehab Hosp Facility as well as GWU Hospital. By 11:30pm Cleveland Clinic's airplane was @ Dulles Airport to transport her back to Cleveland! The doctor originally told me that it will more than likely take a day or two to get her transferred but GOD knew better and she was transferred early that morning. That doctor went above and beyond to get my mom back in their care and I am eternally grateful! The entire family now feels so much better within their hearts that My Mom is @ the best place for her to get back on track!

I am now back in Cleveland with my mom and a couple of my aunts and cousin are on their way now. My mom is resting comfortably and the doctors are doing everything they can to find the problems and solutions.

Thank you all for the advice!

My heart sank to read all that your mom has been through. I am eternally grateful that you followed the advise of others on this site and spoke with the Cleveland Clinic. My mom spent 9 days in a teaching hospital with me fighting every single day to get her transferred to the hospital where she her doctor's were. So having your mom in a hosptial where her condition and treatment is undestood and not being guessed at is a blessing. I will keep you and your family in my prayers.
 
So relieved to read that your mom is back at CCF where she can finally get the care she needs.

Please keep us posted on her condition & do take care of yourself! These situations are very stressful to family members too!
 
What an ordeal! I hope your mother is improving. Continued best wishes :)
 
Hi All,

Just wanted to give a quick update on my mom. She's now in the Pulmonary Care Unit with a tracheonomy learning to breath healthy again. She's struggling with not being able to talk and having been in the hospital for over 3 months but she is making baby steps of improvement. They've been weaning her since last Saturday and today she breathed on her own w/ 5% help from the ventilator. Her heart rate is high but the drs are working to bring it down.

Please continue to keep her in your thoughts and prayers. The family is forever grateful that CC brought her back to their care!

Warm regards
 
Hello All,

Just wanted to let you know that my mom is still @ the Cleveland Clinic in the Pulmonary unit. She's doing well with the weening from the ventilator. She almost had a set back in regards to the "pockets of fluids" outside of her lungs, the drs were thinking she will need surgery to remove the fluid in order to get her passed this hump she was stuck at in regards to her being weened off the ventilator. But Mom came through and really worked hard and her numbers began to improve, so much so that the nurse capped her trach and she was allowed to talk for 10 mins on Sunday. She hadn't talked in over a month so we were all very happy to hear her beautiful voice!

She's doing well and I wanted to let you know and to ask for your continued thoughts and prayers. Tomorrow will be 4 months since the surgery. It's been a long road but she's definitely a fighter who wants to live!

Take care. Until next time...

bbbdirector's daughter
 
bbb's daughter -

I can't help but wonder if your mom's pulmonary issues were a result of her Heart Surgery or additional co-morbidities due to Radiation Damage to her Lungs from her cancer treatments. Can you elaborate?

'AL Capshaw'
 

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