Post Number: 1
|Posted on Saturday, March 03, 2012 - 07:41 am: ||
Hi there all. I hope to find this site helpful do to the fact I have a ton of questions.
Let me start by giving a bit of my background. I'm a 53 year old male, married for 32 years to a great wife with 2 kids and 1 grandson.
Health wise, well lets just say, I'm hanging in there. I weigh in at 170 lbs and I;m 6' tall. I was a very active person up till about 18 months ago when all hell broke loose. Now, I have heart failure. All due to a viro infection. I have no blockage and in fact before this, I didn't take any meds and was able to do the work of a 20 year old kid. This all started in Nov of 2010. Last April, I had a CRT-D implant due to my heart was down to 20%. I been pacing 100 % of the time now. Well after the implant, my heart output reached around 25% and was feeling a bit better. I was going for morning walks of up to 2 miles. Then things got bad again last Aug. More test and then my heart output dropped to less then 10%. More test and more drugs and more test. Now last Jan, I had a IV line put in, having Dobutamine pumping into me 24/7. That has my heart output up to around 30% and in fact I do feel way much better, but my mental health has gone way down. I guess it has to be somthing to do with me retiring and having something hooked up to me all the time. In fact, I feel like a dog on a short leach.
Anyway, I been seeing a heart transplant team almost from the beginning. At this point, they keep talking about a heart transplant, but yet to work me on the list. My days are most good, but yet I still have very bad days to were I just can't do anything. Its been one hell of a yoyo ride. My case has been as stated by my doctors "as one outside the box" from the start!
So, with all that BS aside, first question I would like to ask is, how long does one have to go thru before moving forward to a heart transplant list? I was at my doctors last Wensday and he just keeps telling me my numbers are good one day, but yet the next they are down and he is not willing to move forward or give me an answer as to when he is willing to get me on the list for a transplant.
Now, I have a second question. People that had a transplant, how has your life changed if you were a very active person before getting sick and needing a transplant?
Thankyou for your time and i'm sure these questions were asked at one time or another.
Post Number: 637
|Posted on Saturday, March 03, 2012 - 11:18 am: ||
First of all Paul welcome to our little family!
Your story is like most of us here who have heart transplants so you're in good company. Like you I had CHV due to a virus and as time went on got an ICD - as I worsened I had to get an LVAD (left ventrical asssist device) this is a bridge to transplant device - received my transplant 4 months later. I was able to lead a pretty active life on the LVAD.
Your wait on the list is a variable thing at best - those who are in the hospital awaiting transplant are at the top - those able to wait at home are generally further down. That being said I believe a lot of the decision of who gets what heart when, depends on the match. I knew of several patients like me awaiting transplant on LVAD's who were 18 months or more on the list. I only had to wait 4 months as I was blessed to find a perfect match.
What center are you listed with? I think you'll find that the more you can communicate with them the better off you'll be - they are well trained and can answer most if not all your questions.
All my best to you. Take care and God bless.
|Rocket Heart |
Heart Txplt 1/26/05 University of Michigan
Post Number: 17234
|Posted on Saturday, March 03, 2012 - 04:18 pm: ||
Welcome Paul to Transplant Buddies
I received two new lungs and I remain physical fit and take extra good care of my health.
Stay with us and share your journey with us.
Post Number: 573
|Posted on Saturday, March 03, 2012 - 05:08 pm: ||
Did I read your post right...you are on a dobutamine pump and not on the transplant list? usually someone on a pump is on the list and moved up in status to a 1B. Where are you from and what transplant center has been following you? Maybe I'm thinking of the wrong kind of pump so if anyone here can help me out but that just doesn't make sense to me. With an EF of 10% I would have thought they would have already been doing the tests to evaluate you for transplant. I know they like to keep your heart in you as long as possible and maybe because the pump as brought your EF up. Have they done any kind of eval or are you still in limbo?
Hey other Heart people....does this sound right to you?
P.S. As far as being "outside the box"...you are in good company here! I think we have all been told at some point we are "SPECIAL". I am the only female to have been put on an artificial heart at the Cleveland Clinic so I was definetly outside the box or I shoulld say... The box was outside of me!
|Holly Mulkerin |
Heart transplant 1/28/09 I have a Happy Heart
Be kind. Remember that everyone you meet is fighting a hard battle. Harry Thompson
Post Number: 3137
|Posted on Sunday, March 04, 2012 - 08:05 am: ||
Hello and welcome to TransplantBuddies. I can't answer your first question because my journey to transplant was in days, not months or years and I was unconscious virtually the entire time. However, Holly is correct, at least at our center (Cleveland Clinic) about the pump, though they also use different drugs on occasion, I believe.
I can speak about your second question .... I wasn't sick prior to my heart attack and then transplant .... I was working in factory management on the shop floor walking 17 to 18 miles a day. Life after transplant IS different. My personal goal now (retired) is to walk 7 miles a day. I don't always get there but I try. Jobs around the house take longer .... we just painted a bedroom that five years ago I would have done in one day ... it took three days, and I was tired at the end of each day. I call this, "my new normal". I'm slower and things take longer, BUT MY LIFE IS GOOD!!
At times we also need to be our own advocate .... asking lots of questions, getting second or multiple opinions, etc. I know that at my original hospital, prior to being transferred to Cleveland Clinic, I was coding multiple times daily and my EF was dropping like a rock .... my wife was my advocate ..... she pushed the docs HARD until I was on a helicopter to get a second, yet more informed opinion. My local hospital was doing all they knew how to do, but in terms of skill, they were in the dark ages in reality.
I wish you well and please don't hesitate to ask questions.
Post Number: 2
|Posted on Sunday, March 04, 2012 - 08:23 am: ||
Thanks all! On the pump. It is a small portable pump that is in a fanny pack that pumps dobutamaine 24/7. I have to change the IV bag every other day. I was told that this was a bridge drug towards a heart transplant. At this time, I'm not listed at all. I been going thru test though as if I was getting listed.
My transplant doctor is located at Ochsner transplant center in New Orleans,La. There are only two transplant centers here in Louisiana and both are in the New Orleans area. The bad thing is that I live more then 2 hours away. I do have another Cardo doctor in Baton Rouge just in case if I start to have a real bad day. He was my first doctor and I do want to keep him in the loop.
My next question is to do with insurance, I am still on my company insurance till next Nov. After that, I will be cut loose. I been on SSD from last April. To me the way SS states to get on Medicare, one has to be disabled for 24 months and that the time line doesn;t start till one got on SSD. Please correct me if I'm wrong in my thinking. But this would put me without insurance for 6 months (Nov to April of 2013). I will be able to pick up COBRA insurance after Nov 2012 at a cost to me at $2700 a month. Unreal that insurance will cost me that much, but I know I will have to have it.
Second part of this question is: Once medicare picks you up, is there a supplement insurance that I can get to help out what Medicare doesn't pay that will not break the bank?
There is just so many unanswered questions that I just don;t know to ask. I try to write them down before every doctor appointment to ask, but my team really never answers them. It is like they are keeping me in limbo.
Thanks for putting up with me and thanks for any answers
Post Number: 560
|Posted on Sunday, March 04, 2012 - 09:10 am: ||
Morning Paul. Not being familiar with La's regulations I'd speak to the transplant social worker to see what options are open to you there (every state has different plans/options. I'd be concerned that you are apparently not getting the responses you'd like from your current center - you mentioned that there is another one in the same area - think I would go there and see what they offer in comparision - you want to be comfortable with your team, and part of that entails communication.
Good luck with your journey, stay well
|Jack Hollenbach |
Received double lung transplant August 2 & 3, 2007 for COPD at UCSD Thornton Hospital, San Diego, CA
Live each day to your fullest, for it is a gift to be treasured
Post Number: 639
|Posted on Sunday, March 04, 2012 - 11:07 am: ||
Hey Paul - just did a little research on your center. They seem to have a great reputation and are a leader in your area. I noticed that they are also heavily involved in LVAD operations - and I can't help but think that you would be a prime candidate for that. I included their url for you:
The SS disability is a whole lesson in stress and frustration for most - myself included. I ended up getting a lawyer and getting my congressman involved before it was resolved. In my case I do have supplement insurance and again quite sure that that is a requirement on disability.
Keep us posted on your results my friend and best of luck to you.
Take care and God bless.
|Rocket Heart |
Heart Txplt 1/26/05 University of Michigan
Post Number: 3
|Posted on Monday, March 05, 2012 - 06:44 am: ||
Rocket heart, thanks for the link. On SS, I didn't have any trouble getting on it in the first place. I went in with all kinds of paperwork along will what had been done to me. The lady that was doing the paperwork asked just a few questions, but one stuck in my mine was, how long have you worked ? When I told her I been at the same job for over 30 years, she was shocked. 4 weeks later I was approved.
I guess I will have to go in to SS to asked some of the questions I have on Medicare and supplement insurance.
Well, its another doctor day and I have to get ready. Y'all have a good one.
Post Number: 170
|Posted on Monday, March 05, 2012 - 01:16 pm: ||
If I remember correctly, I didn't hear anything about Medicare supplements until shortly before I became eligible for my benefits. I don't know if all states offer supplemental plans to disability recipients, but I do know that, for the ones that do offer supplements, you only have a limited amount of time to sign up. Unlike regular Medicare recipients, who have yearly enrollment periods, disability patients only have one short window to sign up, and if you miss the deadline, you won't be able to get a supplemental until you reach the age of 65. You might check with your hospital social worker to see if there is a county or state agency to help with Medicare questions-in California, we have HICAP.
The other thing I wanted to tell you is that one of the Ochsner transplant cardiologists was a Fellow at Stanford when I had my transplant. Her name is Dr. Desai, and she was wonderful. I still miss her! She was great at answering questions, and had a friendly personality. I'm not sure why you are having trouble getting your questions answered, as you deserve to know what your status is. Is there anybody at Ochsner that you have "connected" with that might be able to intervene on your behalf?
Best of luck,
Heart Tx 9/08
Stanford University Medical Center
Dx: Right sided heart failure due to a rare form of muscular dystrophy
I have a beautiful new heart from a wonderful donor named Robin, to whom I will be forever grateful.
Post Number: 4
|Posted on Monday, March 05, 2012 - 05:00 pm: ||
Well, I had a big setback today. I went thru a colonospy a couple weeks ago. Today I had to go in and do a fallow up appointment. They found 6 polys, one was very big and it is precancer. They did cut it out and now I have to have a second colonospy at the end of April to see if it is not growing. This is a very big let down due to the fact colon cancer is very bad in my family.
Oh well, why not! What else now?
Hope y'alls day is going better!
Post Number: 2170
|Posted on Tuesday, March 06, 2012 - 08:37 am: ||
Welcome to the forum! I am so sorry to hear of your recent news of the polyps found in the colon. I hope that your next colonoscopy will not show any new growth. I do not have any experience with heart transplants or Medicare, but I can address your question about quality of life before and after transplant. I certainly feel that I am doing better physically than I was immediately before I had the transplant although I am still not near to where I was when I was completely healthy and not ill. Part of the reason is due to a problem I have had both pre and post transplant of being underweight and having difficulty in gaining. However, I feel more motivation and hope which has helped me to do more than I could when I was ill pretransplant. Basically, although I still have problems now, I feel that the transplant was completely worth it. I will be certain to keep you in my thoughts and prayers. Many hugs and hopes for better news is being rushed your way.
dx: GERD 1995, gastroparesis 2002, pseudo-obstruction of the bowel 2004
multivisceral transplant, 6 organs, 10/06/05
University of Miami/Jackson Memorial Hospital