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View Full Version : i know little of all of this but my childs other is in the hospital right now


darunimal
01-06-2006, 12:59 AM
I know little of all of this, but my childs Mother is in the hospital right now.
I have a complicated story so please bear with me. The mother of my child is 20yrs old, my daughter is 10mo and she just delivered another baby 3 weeks ago. She fell out of the shower when she was pregant with the 2nd child. She went to the ER they checked the baby and everything was fine, with the baby. 2 days later she went back for pain where she feel and was given valum and a muscle relaxer. (Day 1) 2 days later than that she went to the ER for severe sob. They told her she had a leaky valve and then (day 2) 28hrs later they decided they need to send her to a university. Well she delived (day 6)4 days later and they sent her home (day 9)3 days later with an almost foolish amount of advise "take it easy" no papers no social worker assistence nothing, and a make an appointment next week with your cardioligist. This was a person with limited to no movement having a fast pulse and a low bp. Unfortunately i was not envolved much at first to know all of what she was taking but digioxin was one thing as well as heperain. She had to be flown back (day 11)40hrs later with severe sob and chf. The doctors continued that therapy for another (day 15)66hrs and then they discontinued using digioxin and started using dobutamine and heperain they continued this course for 4 days all awhile changing doses and giving her 2oxicodones for severe migrains those 4 day, then she was transfered to another hospital on day 19. They pulled her cath out of her neck (day 23) 4 days later and that caused a clot and they bumped up the heparin to 15 because a clot being formed from the cath. Then (day 25) 49 hrs later they stopped with heperin and told her she need a heart transplant and (day 26)12hrs later they told her she was a 1a on the heart transplant list.
My question is with the verying care and nonstability of all these different approaches ,have they really given any a chance to work.
Also, I understand I just might be in great disbelief of the severity of her condition. She does not want anything to be done right now but time for nature to heal her with some advanced medicines helping her. What do i do on the medical side. I know just being there to support her and keep her spirits up is better than almost anything else, but what can i say to her dad and mom when they too just want to wait awhile and see what happens. btw today is january 6 day 27.5

Lisa V
01-06-2006, 07:21 AM
Im not really sure HOW to answer this thread...................
The only advice I can think about right is to let her start healing with the medications she is currently on. Majority of the woman on these boards have all been placed on THE HEART TRANSPLANT LIST and I think only 1 of us has had it done. With plenty of rest and the correct meds she will pull through this just fine and with out a transplant............She be there for her and let her know that there is a very HIGHLY chnace that she will get better and that she should always stay positive, positive thinking brings positive results. Please keep us posted as to how she is doing and if her course of medication schange.

SerenaWelsh
01-06-2006, 08:52 AM
Given what I learned from my own experience with "the list," she will likely have plenty of "waiting time," to see if medications can even begin to correct her broken heart fast enough - even with a 1a priority.
Rest assured that she will be evaluated again and again and they won't leave her on the list if she outgrows the need for it. Removing her from the list for a "wait and see" approach could jeopardize her in a number of ways.
1) perhaps she will get worse and not even be a candidate for a transplant anymore.
2) perhaps she'll still be a candidate, but have an even longer wait because she's not been on the list as long as another 1a.

It is true that many, many women with PPCM get better. And alot of those get better very quickly. However, that's not 100% and for those that continue to decompensate - especially so quickly - sometimes seemingly radical meassures are needed to save their lives.

A couple of questions: Where is she being treated? Have you asked about her cardiologist's experience with PPCM? Does he treat this regularly, or might he be relying on 10 year old texts for a treatment plan? If you're not comfortable with his expertise, you need to get another opinion. If she is not transportable, sometimes reviewing the existing medical record will give another doctor enough information to at least determine if her treatment is right on, or way off base.

If you need it, we can assist you with finding a heart failure cardiologist with expertise in treating PPCM. You can contact me directly about that at serenawelsh@earthlink.net .

I'm sure you're going to get some great responses from our nurses and Dr. Fett today. Their input is priceless.

darunimal
01-06-2006, 10:00 AM
thank you for the encouragement, just needed a boost and some advise. i read your reply early this morning right after waking up, it's set me up for great day.

JAMESFETT
01-06-2006, 10:36 AM
If I understand correctly, the mother of your adopted child has severe heart failure following her second pregnancy. The fact she has been referred to a university hospital assures me that she has had many knowledgeable doctors involved in the care of her pregnancy-associated heart failure. If her diagnosis is peripartum cardiomyopathy (PPCM) there is a very remarkable potential for recovery, even when the level of heart function is extremely low at diagnosis. Effective treatment involves several medications, and I'm sure she is on many of them. In patients with PPCM that is not responding to treatment, other evaluations should be considered, including heart catheterization and biopsy with very special tissue examinations. I would be happy to be available to discuss her situation with any of her physicians or family. Thoughts and prayers,

James

miracle baby
01-06-2006, 11:18 AM
My Thoughts And Prayers Are With You I'm Sure She'll Start Getting Better.keep You Faith

KellyDL
01-06-2006, 01:01 PM
First of all, you will be in my prayers. You've come to the right place for support. Did they officially diagnose her with PPCM? Do they know what her ejection fraction is? I personally am not an expert by no means, but I have read many of the girls on here talking about being on the transplant list and then improving with medicine. I hope this is the case for you guys. Please keep us posted.

darunimal
01-06-2006, 09:00 PM
I appreciate all of your replies. I am the father of the 10 month old, and ex-boyfriend. We did not go out long, but since our daughter was 3 months old talked daily. So I am an outside supporter helping the ways i know how. I have hope and so does she. We have pretty decent doc's just wasn't sure the past 4 weeks were going in a good direction.

They officially diagnosed her with PPCM. they also are doing heart catheterization and biopsy with very special tissue examinations. She is in a well known hospital getting great care. She just is not getting abundant amounts of information especially on expectations and what generally(vaguely) to expect. She is young and just learning what it is to be a great patient. i will see about her numbers and post them in a day or 2.

JAMESFETT
01-06-2006, 11:17 PM
About the biopsy, here is some important information you may want to share with your friend and her doctors:

ABSTRACT: Polymerase chain reaction (PCR) testing of "quick-freeze" endomyocardial biopsy tissue for identification of evidence of viral presence is an important new tool in the investigation of unexplained dilated cardiomyopathy patients; and particularly those who are not improving with conventional treatment. Alternate therapeutic measures, including anti-viral treatment and immunosuppressive therapy offer promise in contributing to left ventricular systolic function improvement. It is
important to include PCR testing for a broad spectrum of cardiotropic viruses prior to the application of immunosuppressive therapy. [Fett, JD. International Journal of Cardiology 2005, E-pub ahead of print]

tinabowen
01-09-2006, 08:00 PM
(((HUGS))) To you, her and the children...
It really sounds like she is in great care..

It's common for "some" doctors not to go into to great details about anything, so you came to the right place to ask questions..
I was told the younger you are(as long as you care for yourself) the better chance you have for a full recovery..The meds will take time...Help her as much as you can with the baby/babies and support her..



Tina

Bw3taz
01-11-2006, 08:26 PM
I just wanted to add that WHEN she gets out and she will she will still need you there. I know you said EX but they told me for everyday your in the hospital allow 3-4 days to recover. (To start feeling more yourself) Also allow extra time on top of that for the traumatic stress your body has been through for child birth or c-section and the stress your heart has went through. I was diagnosed 1-23-05 and really didn't start feeling myself till around end of April beginning of May and I was in hospital a total of 20 days. SO just continue to stay strong and involved and I bet her knowing that will also help her mentally.

I will keep you in my prayers also.

Thank you