1st appointment

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debkale2
New Member


Date Joined Apr 2009
Total Posts : 16
   Posted 4/6/2009 5:30 PM (GMT -7)   
Scott has his first app. with Henry Ford in a few weeks, can anyone tell me what to expect? And I thought I had read a liver has to be transplanted in the first 4 hrs. so it has to be pretty near by? I'll never get all this info. Thank God his g-friend is in the medical field, but talking to her is alot like the Dr. alot of big fancy words!   Debbie

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/6/2009 7:29 PM (GMT -7)   
Deb, I'm glad your son got an appt. for evaluation.  It's true that there is a window of time to harvest the organ and get it into the recipient.  However, there is so much more he will have to go through before getting to that point that you shouldn't even worry about that right now.  He will be going through tons of tests to evaluate him completely.  He also has to get a psychological eval., I believe.  Those here whose loved ones have received transplants, or are waiting for one, will be able to give you much more information than I.  They will calculate his MELD score and that number will determine his placement position on a waiting list...or whether he is even placed on one.  Get ready for a long roller-coaster ride.  It is good that his g.f. is in the medical field.  Will she be going with him to appts.?

hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


pscwife
Regular Member


Date Joined Dec 2008
Total Posts : 302
   Posted 4/7/2009 4:11 PM (GMT -7)   

 

Debbie,

 

Don’t get you hopes up too soon   You may be surprised at how slow the process goes.  He probably already submitted a lengthy application.  If not, he should be prepared to provide his family medical history, his own medical history, and hospitalizations or surgeries he’s had, shot record, whether or not he’s had any of the typical childhood illnesses (chicken pox, mumps)  as well as any other diseases he’s ever had.  Names and addresses of all of his doctors, prescriptions he is currently taking, insurance coverage, current conditions and dates of diagnosis/procedures.  He’ll need to provide a history of ESLD symptoms, date of onset, treatments, etc.

 

He will probably meet with a hepatologist for a consultation on the first visit.  Then they will probably want to do blood work.  My husband went to Shand’s hospital for almost 6 years and only got recommended for transplant evaluation (this is recommended by the hepatologist) twice in the last year and a half we went there.

 

If he were having an evaluation, they would send out a schedule of tests and meetings that cover 2-3 days. 

 

During the evaluation, meetings would be set up with:

 

o        Transplant Coordinator – To discuss the evaluation process through to the transplant procedure as well as financial considerations to include fundraising.  They will also want to determine who is his support system to include caregivers and anyone providing transportation as well as backup caregivers in event something happens to the primary.

o        Financial Services – To discuss transplant costs and how he intends to pay—insurance, copays, etc.

o        Pharmacy Services – To discuss maintenance drug costs, insurance coverage, copays, etc.

o        Social Worker – To discuss his history—drug use, alcohol, marital status, mental state, family history, etc.

o        Transplant Surgeon – To discuss their opinion and answer any surgical questions

 

The tests involved in the evaluation include:

 

o        Cardiac Stress Test

o        Echocardiogram

o        EKG

o        Abdominal Ultrasound

o        ABG (special blood draw to measure gas levels) taken from the wrist

o        Chest Xray

o        Lab Draws

 

Each case is different, so there may be additional tests schedule.

 

There are vaccinations that must be up to date in order to proceed with transplant.  These were required to be up-to-date for my husband:

 

o        PPD [TB skin test]

o        Flu Vaccine (Annually)

o        Pneumovax (every 7 years)

o        Tetanus (every 10 years)

o        Double Dose Hepatitis B Series (only after shown negative for the HepB surface antibody)

o        He should also have a recent Endoscopy and Colonoscopy

o        Some centers require a recent liver biopsy

 

I hope this information gives you an idea of how complex the process is.  If and when he is scheduled for an evaluation, I encourage you to see that as many family members attend as possible.  This show of force can make all the difference in their decision to proceed.

 

Good luck and my God bless you.

 

Penny


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/7/2009 4:39 PM (GMT -7)   
Penny, thanks for stepping in with all the info deb should have.  I assumed that the visit she spoke of was his first transplant evaluation visit, but you are probably correct that it is just with a hepatologist.

hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


pscwife
Regular Member


Date Joined Dec 2008
Total Posts : 302
   Posted 4/7/2009 6:32 PM (GMT -7)   

 

You get Connie.

 

I haven’t been able to participate as much as I would like.  I’ve been working 7am to 7pm most days and it’s hard to keep up.

 

Hope you are doing well. 

 

Penny


pscwife
Regular Member


Date Joined Dec 2008
Total Posts : 302
   Posted 4/7/2009 6:43 PM (GMT -7)   

 

What I meant to say Connie was, “You bet” not “You get” smilewinkgrin


mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 4/7/2009 8:10 PM (GMT -7)   
LOL! Penny, I can relate at how tired you are. Hubby back in the hospital....having seizures. His poor body can't take much more.

I wanted to add a couple of more things....when we went for our transplant evaluation, we also met with a dietician and had kidney testing....depending on the center it can be by s 24 hours urine collection (so be prepared to carry an ice cooler) or Glofil test. My husband had the Glofil test. Also, just be prepared to be given ALOT of information during the evaluation. Take a notebook and write down everything, and then write down questions. I found that to be very helpful for us to help me keep track of all the information given. When we went for evaluation, it was all day, every day for 5 days. They also did a couple of other tests along with what Penny mentioned above.....MRI and MRA, doppler ultrasound, they will also measure his chest.

Penny did a great job of outlining it all for you. Take a deep breath and just be prepared to learn alot! You need to literally take it one little step at a time, because it can get overwhelming. Glad you have someone that is also in the medical field on your side. She can probably help sort through alot of this as well. Make sure that someone is with your son during every visit....not just during evaluation, but every office visit, because liver patients to have a tendency to have memory issues (thanks to elevated ammonia levels).

You hang in there!

Mer

pscwife
Regular Member


Date Joined Dec 2008
Total Posts : 302
   Posted 4/8/2009 2:36 AM (GMT -7)   

 

Thanks Mer,

 

I’m so sorry that you are having such a rough time.  I hope you get some relief soon.  I'm glad to see you are maintaining a sense of humor.  I think about you and others on this forum all the time.  I think Harvey gets a little jealous of the amount of time I spend checking in.  But I can never forget the relief I felt when I first stumbled on this forum.  I had no idea how many people were suffering the effects of ESLD.  The support I found here proved invaluable.  I want to give back as much as I can.

 

The additional tests you mentioned were performed on Harvey after he was hospitalized at Florida Hospital.  It further confirms for me that Shand’s was blowing smoke.  We met two other patients that had similar experiences with Shand’s and ended up getting their transplant at Florida Hospital.  It’s a crying shame. 

 

Thank God for the Internet.  When Harvey was first diagnosed with PSC, few people had access to the Internet.  I went to the public library and only found one reference to this disease.  It was in a large medical reference book and it was only one paragraph long.  It wasn’t encouraging at all. 

 

The knowledge I gathered from the Internet has helped me actively participate in Harvey’s care and engage those responsible for his medical care.  It’s given me the confidence to advocate for him. 

 

I gotta get ready for work.  Take care of yourself and your husband.  Keep the faith.  You are in my prayers as always. 

 

Love,

 

Penny


debkale2
New Member


Date Joined Apr 2009
Total Posts : 16
   Posted 4/28/2009 11:24 AM (GMT -7)   
Thank you all sooooo much for the info and well, just for being here. Scott's first app. took about 4 hrs. and we found out even though they think his meld score will be high. Its gonna take time for all the tests etc. (as long as 3 months)  I just hope he has that long as hes not doing so well. His g-friend is a very organized person so I have faith she'll keep things together. Kinda worried though, His pcp has already changed some of the meds. Should he be doing this? I was under the impression they (the team) were now in charge. All they did was a chest x-ray and blood work, which he was way low on potassium, he doubled up on his pills and we should know today (after blood work yesterday) how it is.  And hows Harvey doing Penny?           Debbie
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