While researching information on late stage CHF I came across this site and have read many articles and posts here. It is a well designed site with a lot of good information and support. If this is out of line to post here please let me know, but I am frustrated and unsure at the moment.
My wife, who is 42, suffered a MI almost 10 years ago. Luckily she made to the right facility in time and the Doctors and Nurses were able to save her life. The bad news is that between the time the MI began and the time they cleared the blockage with a heart cath she suffered a large amount of damage. She has one of the best heart Doctors in the region and his care has probably added years to her life, but at the time the heart event happened he inserted stints and told us that she lost close to 70% of the capacity of her heart.
4 years later they had to replace the stint and add another stint. She continued to decline and was diagnosed with CHF and COPD. Soon after she was diagnosed with adult onset diabetes. All of which are heriditary in her family. Her heart Doctor told us that she would not survive even the most minor heart event and gave us the option to insert a pace maker / defib.
Since then things have gone well with the right medications, diet and exercise. But in the last 6 months things have declined quite rapidly. She spends days in bed sleeping and cannot engage in much activity without spending days being "down". On her last visit to the Doctor the Defib recorder showed that she had a heart attack which activated the pace maker, then the defib, then paced, defib and paced again which saved her life. This happened in early December while she slept and either of us had any idea.
She has been experiencing bouts of nausea the last few weeks, daily and sometime 2-3 times a day. Dry heaves and vomiting, both of which seeming to get worse. She is staying hydrated as best as we can keep her but cant eat with no appetite. She complains of waves coming over her that feel "unreal". She can barely leave the bed, chronic coughing, nausea and diarhea.
All this being said, we have a young son who is struggling with seeing his mother this way and even though I am pretty sure I know what I am seeing I am struggling too. I know that she is young to have these types of issues, but it is what it is. Answers are hard to find and answering our sons questions seem impossible. Only God and fate know when it is time but the pressure is building for us and the anxiety is overwhelming, especially when I have no answers for our son.
I suppose I am wondering, from the experience of those here, what time frame should we be preparing for in terms of planning, preparing our son for the coming event? Is this something that she can pull out of and expect years of good quality of life or is it time to make her comfortable and look more towards months? Is there a support group for families in this situation? Please help me help my family, I feel lost and helpless to help at this point.
Jun 25, '12
by NRSKarenRN, BSN, RN Moderator
If your wife's ejection fraction is above 20-25%, she may just need some fine tuning of meds and some emotional support to deal with chronic health problems. I've seen patients still alive with only 10-15 % heart pumping for MONTHS.
Please ask your cardiologist for home health care referral for CHF or Telemedicine program if not already involved in a program. We have worked wonders for keeping patients out of the hospital and fine tooning plan of care with Cardiologist. Depression is often under diagnosied and medications can help improve outlook on life. Nausea and vomiting are side effects of some meds: Is her Cardiologist aware of extent of problem?
A frank discussion with her cardiologist or Cardiology NP along with PCP should shed light if she is ready for a Palliative care or Hospice program. Many hospitals have support programs for family caregivers to prevent burnout and get support. Again your Cardiologist should be aware of programs or you can call hospital, ask for Case Management department to see what is available. Your local American Heart Assocaiation may have support group too.
Your wife is lucky to have you on her side. From your scenario, starting a conversation with you son will help prepare him for possibility of wife's death. Better to be prepared than have death hit suddenly when young. Best wishes in the days ahead.
Some articles of interest:
Heart Failure: MedlinePlus
Visit our Heart of Caregiving website
End-stage Congestive Heart Failure Symptoms | LIVESTRONG.COM
End-of-Life Care: Improving Communication Skills to Enhance Palliative Care
End Stage Congestive Heart Failure - Caring.com
Explaining death to children:
Leo Buscaglia The Fall of Freddie the Leaf -available book and on you tube video.
Max the Happy Caterpillar
Talking To Children About Death
Last edit by NRSKarenRN on Jun 25, '12
Jun 25, '12
by Esme12, ASN, BSN, RN Senior Moderator
I am so sorry your wife is so ill.
Please have her seen by her cardiologist and PCP ASAP if she hasn't seen him recently. She can become unnecessarily sick because of her diabetes.
My heartfelt prayers for your son, your wife and you. I have a couple of questions and then I will give you links so you can research possible options. NRSkaren has given you ton of information as well.
Has Your wife ever been seen at a University type medical center? Has she been evaluated for transplant? Has she ever been evaluated for a ventricular assist device?
From the Cleveland Clinic.
Surgery for Heart Failure
Surgical Treatments for Heart Failure
Ventricular Assist Devices (VAD)
- Left ventricular reconstructive surgery (Dor Procedure)
- Left ventricular reconstructive surgery allows the surgeon to remove the scarred, dead area of heart tissue and/or the aneurysm and return the left ventricle to a more normal shape. The goal is to improve heart failure and/or angina (chest pain) symptoms and possibly improve the pumping ability of your heart. Miller Family Heart & Vascular Institute at Cleveland Clinic has been performing these surgeries for many years with great success.
Other Names for Left Ventricular Reconstructive Surgery
- Various surgeons who have published their experiences use different names to describe the procedure. Here are some other terms that describe the same or a similar procedure:
- Endoventricular circular patch plasty repair
- Dor procedure (to credit Vincent Dor, MD, who authored many articles on the procedure he began performing in the early 1980s)
- Surgical ventricular restoration
- Left ventricular infarct exclusion surgery
- Left ventricular aneurysmectomy reconstruction
- Surgical anterior ventricular endocardial restoration
- Heart Transplant
A ventricular assist device (VAD -- also called ventricular assist system or VAS) is a mechanical pump that is implanted to help the heart’s weakened ventricle (major pumping chamber of the heart) pump blood throughout the body.
The VAD can be used as a bridge-to-transplant,
which means it can help a patient survive until a donor heart becomes available for transplant. This option may be appropriate for people whose medical therapy has failed and who are hospitalized with end-stage systolic heart failure. As a bridge-to-transplant, the VAD allows the patient to be discharged to an outpatient setting while waiting for transplant. Without this device, there is a greater risk of death during the wait for a transplant.
The VAD also can be used as destination therapy,
which is an alternative to heart transplant. Destination therapy provides long-term support in patients who are not candidates for transplant.
When used as a bridge-to-transplant or as destination therapy, the VAD provides effective hemodynamic support, maintains or improves other organ function, improves exercise performance and enables participation in cardiac rehabilitation.
There are some real viable options here. I hope this helps.....
Last edit by Esme12 on Jun 25, '12