Profile picture for user Kverissimo
Kevin V. Caregiver

HELP !!! HOW DO WE FIGHT FOR MORE REHAB ?!?!?

Hello all, first off thank you for being here !

My girlfriend and I are the primary caregivers of her 50yr old father who just recently received his LVAD. We understand thats a big undertaking and we are totally down for the job. We / he has had a few bumps along the way but i think we are finally off to a good stretch. with that being said ... The hospital is trying to kick him out without the proper rehab in our opinion! He received LESS THAN 1 FULL WEEK at an acute long-term facility before he was sent back to the icu with complications. Now that we jumped that hurdle the hospital isn't pushing for more rehab, which makes no sense to us! He can barely get out of bed by himself. He needs help getting off the toilet. He barley walks to the nurses' station without being winded.  Never practiced stairs (which he has going into his apartment). Cant wipe his own behind..... the list goes on .... AND THE KICKER , THE DISCHARGE COORDINATOR JUST TOLD US SHES HAVING TROUBLE FINDING A VISITING NURSE IN OUR AREA !    Again yes i know us as the family needs to "step up" but at what point is he just "not ready" ?!?!?

AND HOW DO WE FIGHT IT ??? 

This is so stressful and just all moving so fast 

Any info will help , THANKS IN ADVANCE

Profile picture for user Ginger
Ginger H.

In my personal situation,  I stayed in the rehabilitation hospital for about 10 days but I was still very fragile.   After I returned home, I enrolled in outpatient rehab ( Ivy rehabilitation).  After the twice a week sessions, I made really great strides both physically and mentally.  I hope your father will recover quickly also!

Profile picture for user roquewilm@gmail.com
William R.

Kevin,

I just went through the same issue with my Dad here in Georgia. Great doctor team he had but they were only going to give him 2 weeks of physical therapy and he had a lot of complications along the way. He couldn't get up out of bed without getting dizzy and passing out. They never could figure out why he was getting dizzy and they sent him home. Best thing I can recommend is when you get him home bring in home physical therapy and make him do the therapy everyday a few times a day even when the therapist is not there. In some states there are nursing homes that offer LVAD physical therapy but he would have to meet the criteria of being able to withstand 3 hours a day for 2 to 4 weeks. Then the problem is if they have a bed for him. They didn't hear in Georgia. The problem with LVAD there is not enough support after surgery for elderly. So my dad decided to have the doctors turn off his LVAD instead spending the rest of his days laid up in a bed in a nursing home. He passed the Sunday before Thanksgiving. I hope you have better luck with it than we did and if I can help provide any additional information please feel free to reach out.

William

Profile picture for user Giants17
Lee S.

I was released from the hospital to a rehab facility for about  3 weeks.I was released last December 8th,,,tomorrow will be a year. I still have trouble putting my pants on and off and shoes and bending down. I believe they treleased me to soon. I could've done another 2 weeks. I have neuropathy in both feet from my ekmo and comma. I went to Cardiac Rehab at a local Hospital. Had 36 sessions scheduled and completed 28 until I walked out. It got to the point where everytime I went they send me home because of my pressure was to high or I put to much weight on even they got a new scale and would't admit that it was the new scale....I didn't gain 10 pounds in 1 day!! Treated me like a child at times. I feel like they didn't care to have a LVAD patient there.....so I left and didn't return. Best bet is to go to a gym and work at your pace. I sorry yo hear about your father William!!

Profile picture for user hilleyja

In reply to by Lee S.

James H.

I hope you had an opportunity to provide feedback for your rehab sessions.  It does seem like you had issues that needed further attention from your doctor(s).  The rehab nurses have to operate according to rules, especially heart rate and blood pressures.  There is a maximum blood pressure and heart rate, based on your age, that is not healthy.  Though blood pressure was never a big concern for me, they did have to periodically have me halt my exercise if my heart rate got too high; they even sent me to the emergency room once and I was admitted for a couple of days of observation.

Profile picture for user Giants17

In reply to by James H.

Lee S.

Thanks James for the info.

I didn't have a chance or way to provide feedback for my sessions. It seemed to me also that a quite a few of the rehab nurses were not exactly sure how to pull my MAP as I sat there and watched. My doctors were notified and were not concerned about it. I have no plans to go back and pay out out of my pocket for the so called phase 3. I currently go to the mall and walk before all the stores open up for the day. I do alot of window shopping...lol. I'm a veteran so I really don't need all that equipment to exercise Uncle Sam taught how to exercise without any equipment. I do have my Cardiologist and LVAD appt tomorrow, so I'm looking forward to it and see what my status is for a transplant. Thanks again James for reaching out!! Hope your doing well.

Profile picture for user hilleyja

In reply to by Lee S.

James H.

I take my doppler with me when I have an appointment that does not include my VAD Coordinator.  I usually have to show them how to use it.  Note:  Sometimes a hospital auto blood pressure will give a good Systolic that matches my MAP.

Profile picture for user hilleyja
James H.

Most insurance will pay for 36 sessions, usually 12 weeks.  This rehab is considered phase 2 (phase 1 was while you were recovering in the hospital).  Some programs offer a phase 3 (not covered by insurance); this is usually about 3 sessions a week and you are charged about $37 out of pocket.  The difference between phase 2 and phase 3, is you are not electronically monitored during your exercise, though the nurse may check your vitals before and after your session.  For me this also included an EKG screening with my palms on two paddles.

Profile picture for user hilleyja

In reply to by James H.

James H.

That's $37.00 a month, not session.  I may get 12 sessions out of a month, so $37.00 is insignificant.

Profile picture for user hilleyja
James H.

Most insurance will pay for 36 sessions, usually 12 weeks.  This rehab is considered phase 2 (phase 1 was while you were recovering in the hospital).  Some programs offer a phase 3 (not covered by insurance); this is usually about 3 sessions a week and you are charged about $37 out of pocket.  The difference between phase 2 and phase 3, is you are not electronically monitored during your exercise, though the nurse may check your vitals before and after your session.  For me this also included an EKG screening with my palms on two paddles.

Profile picture for user irishman
Irishman J.

Is anyone like me an lvad patient who feels their support team is stumbling around in the dark? The best to all of you. Irishman