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Cappy HCM and myocardial bridge patient, also have primary progressive MS Find out more about Cappy
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  • maztbo
    replied
    Re: Got On The List

    Hi Silvia,

    Not were or was but ARE, going on my fourth year now on the 'list', my latest posts like....http://www.4hcm.org/forums/showthrea...UNOS?highlight..... will explain what is going on, reality is I have to be on death's doorstop in ICU to get one, the list and UNOS is a joke. I'm highly disillusioned with this situation I'm in, I can not express enough how sick I feel. But I have a lot of faith in God.

    John

    Leave a comment:


  • canterbury
    replied
    Re: Got On The List

    Originally posted by maztbo View Post
    Yes the area doctors that vote on an exception ARE the local UNOS board. The medium waiting time in your zone (2) when the last compilation of data was made (2004) is 276 days for o+ blood type the data does not separate status, the time in my zone was 587 days. They publish up to date figures on current numbers of people waiting in every area, transplants done (by zone and hospitals), waiting times by blood type (O is the longest, AB is the shortest) when you study their data it's obvious the numbers don't lie, and the current data show a negative trend not a improving upward one. Zones 5&6 (all the states west of the Rockies) have a combined average of 130 days. The problem is not with the doctors but a system that has balkanized into entrenched institutional interests, there are 11 zones that compete. The situation up here is that we're isolated and blocked by zone 9 (NY), my transplant coordinator told me last April that it would be better for me if I could relocate and that is what started me to study UNOS and all aspects of the transplant experience.
    UNOS runs the OPTN (Organ Procurement and Transplant Network) which is a system set up by an act of congress in 1984 and paid by Health and Human Services, it is suppose to run a national system but has become 11 competing zones isolated in self interest for the most part .I have gone into great detail in other posts I've made so I don't want to reiterate here. My HCM dr.(M. Maron who is an expert in HCM) shares the same clinic as the transplant team and if need be they coordinate with him but once you're on the list your care is under the transplant team control. Quality of life is suppose to be the most overriding factor (and believe me there is not much quality in my life, LOL) but there are catches and a paradox to that rule in regards to HCM and I stated it above, I feel worse than people with LVADs or IV drips but because I'm home and don't have these therapies I'm considered not as 'acute' and with the situation HERE the voting group won't give me that exception. A certain member here, who I've become good friends with was listed 6 months after me, in our conversations we progressed symptomatically almost on a parallel basis, a year ago last August his transplant dr. got him that exception (he lives in Texas, waiting time avg. 227 days)she didn't put him through any cath.s to get it, and he was transplanted a year ago last March 17th. When I say there is a bias I do know what I'm talking about, it might be only here but I have to live with it, the transplant team here made no bones about it and didn't come out and state it in such a manner but the reality is until I'm in ICU or on any of the therapies I mentioned I won't see a transplant soon.


    [to clarify what I mean by a zone blocking, when a heart can't be matched in a zone of origin a call is sent out in a concentric circle going first 500 miles then 1000, then 1500, nothing going north gets by NY, and my own DR.s told me they have sent ones south to NY and nothing is ever sent north . also the numbers for heart transplants done last year in the closes zones are...my zone 1 (MA,ME,NH,CT,RI) 84, zone 9 (NY,VT)154 , zone2 (PA,MD,DC ,DEL,WV,NJ)332]


    It's funny you should be writing this. In our state, Michigan, we were told if you had to be in the hospital or on an LVAD in order to get on the list for a transplant because there aren't enough hearts to go around. I remember many years ago one of the doctors at the NIH (National Institute of Health) actually told my daughter's cardiologist that "we don't transplant HCM patients!" Bias... I'd say so.

    One question I do have for you is that you say in your history note that you WERE listed for transplant? What happened to that transplant?

    Silvia (mother to Kristy)
    daughter was diagnosed at age 6 with HCM, SSS, WPW, RBBB, LBBB Maheim Fiber and AF.
    had several ablations as well as an open heart for WPW ablation.
    Transplanted at 22
    Now in chronic heart failure
    Diagnosed with PRKAG2 (Glycogen Storage Disease) 3 years ago

    Leave a comment:


  • maztbo
    replied
    Re: Got On The List

    Hi Sandy
    If my earlier posts on this thread leaves you with specific questions about being listed or how it works in your zone , you can PM me any time, I pretty much know everything about the process and how it works'

    John

    Leave a comment:


  • sandy
    replied
    Re: Got On The List

    Is there someone that you would recommend that can answer questions about the "List"?

    My doctor is having that discussion with me in six weeks after I get my ICD next Wednesday.

    I don't think I have ever posted since I became a member.

    Thanks
    Sandy

    Leave a comment:


  • maztbo
    replied
    Re: Got On The List

    Remember Carol, it's not the numbers done that's important in looking at the data on the UNOS site, it's the waiting time data that's important. There is only a few days difference between the two zones and 5&6 have the shortest waiting times in the country (avg. 130 between them) which is about 100 days less than the next one and 450 days shorter than my zone. According to their latest compilation of data.
    Last edited by maztbo; 04-30-2014, 01:08 PM.

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  • CarolinEOregon
    replied
    Re: Got On The List

    Thank you for your quick response John. My prayers continue to be with you.

    Carol

    Leave a comment:


  • maztbo
    replied
    Re: Got On The List

    Hi Carol

    As I understand it the region where you live is where you are listed, you are allowed to be co-listed in other zones as long as your ability to make the time and travel requirements can be met. OR has 3 TXCs (transplant centers) and 1 OPO (Organ Procurement Org.), UT has the same numbers. The larger numbers in region 5 reflect the population and peculiar factors of mostly southern Calif. in the donator pool, I would look to being in 5 since they have the larger numbers and UT benefits from Ca's position. Hopefully you'll not need one, my prayers go out for your improved condition'

    John

    Leave a comment:


  • CarolinEOregon
    replied
    Re: Got On The List

    John,

    I live in Oregon and am six hours from Portland, Oregon (region 6) and also six hours from Salt Lake City, Utah (region 5). When I am looking up transplant information it appears there is a vast difference between the two regions for heart transplants (hundreds for region 5 vs only dozens for region 6). Am I reading the information correctly? I know you have discussed this before, but how is the transplant region chosen for a person? Is it where they live or how close they are to the transplant center?

    My second myectomy went well and I saw improvements, but I am already beginning to see non-positive changes after only six months.

    Carol

    Leave a comment:


  • maztbo
    replied
    Re: Got On The List

    Yes the area doctors that vote on an exception ARE the local UNOS board. The medium waiting time in your zone (2) when the last compilation of data was made (2004) is 276 days for o+ blood type the data does not separate status, the time in my zone was 587 days. They publish up to date figures on current numbers of people waiting in every area, transplants done (by zone and hospitals), waiting times by blood type (O is the longest, AB is the shortest) when you study their data it's obvious the numbers don't lie, and the current data show a negative trend not a improving upward one. Zones 5&6 (all the states west of the Rockies) have a combined average of 130 days. The problem is not with the doctors but a system that has balkanized into entrenched institutional interests, there are 11 zones that compete. The situation up here is that we're isolated and blocked by zone 9 (NY), my transplant coordinator told me last April that it would be better for me if I could relocate and that is what started me to study UNOS and all aspects of the transplant experience.
    UNOS runs the OPTN (Organ Procurement and Transplant Network) which is a system set up by an act of congress in 1984 and paid by Health and Human Services, it is suppose to run a national system but has become 11 competing zones isolated in self interest for the most part .I have gone into great detail in other posts I've made so I don't want to reiterate here. My HCM dr.(M. Maron who is an expert in HCM) shares the same clinic as the transplant team and if need be they coordinate with him but once you're on the list your care is under the transplant team control. Quality of life is suppose to be the most overriding factor (and believe me there is not much quality in my life, LOL) but there are catches and a paradox to that rule in regards to HCM and I stated it above, I feel worse than people with LVADs or IV drips but because I'm home and don't have these therapies I'm considered not as 'acute' and with the situation HERE the voting group won't give me that exception. A certain member here, who I've become good friends with was listed 6 months after me, in our conversations we progressed symptomatically almost on a parallel basis, a year ago last August his transplant dr. got him that exception (he lives in Texas, waiting time avg. 227 days)she didn't put him through any cath.s to get it, and he was transplanted a year ago last March 17th. When I say there is a bias I do know what I'm talking about, it might be only here but I have to live with it, the transplant team here made no bones about it and didn't come out and state it in such a manner but the reality is until I'm in ICU or on any of the therapies I mentioned I won't see a transplant soon.


    [to clarify what I mean by a zone blocking, when a heart can't be matched in a zone of origin a call is sent out in a concentric circle going first 500 miles then 1000, then 1500, nothing going north gets by NY, and my own DR.s told me they have sent ones south to NY and nothing is ever sent north . also the numbers for heart transplants done last year in the closes zones are...my zone 1 (MA,ME,NH,CT,RI) 84, zone 9 (NY,VT)154 , zone2 (PA,MD,DC ,DEL,WV,NJ)332]
    Last edited by maztbo; 04-18-2014, 11:44 AM.

    Leave a comment:


  • Cappy
    replied
    Re: Got On The List

    To get my exception 5/9 transplant hospitals in the area/region had to approve the exception, not the UNOS board, or so I was told. They have 24 hours to yay or nay. Mine was written as a quality of life issue. I have hard time believing that there is an HCM bias in the transplant community. If you're listed for transplant it shouldn't matter how you got on there. My doctors all work in the same group, Heart Failure and Transplant, so they all see the same patients transplant and HF. Perhaps that made my case a little easier

    Heartbeat: I see Ken Marguiles, not sure if he is an HCM specialist per se, but it is listed as an interest that is how I chose him.

    Leave a comment:


  • maztbo
    replied
    Re: Got On The List

    Well I was going to stay out of this thread but I just can't help myself. Many of you here know my story and the frustration I have had with the zone 1 UNOS board in denying my transplant doctor's appeal to move me up to Ib, it's going on now for four years I've been waiting as a status II (they use roman numerals in the classification) I'm severely disabled unable to do much more than stay in bed at home, my weekly excursions are to church and to the supermarket once a week which leave me sick and exhausted. My HCM doctor at Tufts here is one of the foremost experts on HCM and widely respected but when you're in the transplant program the doctors in control are not too sympathetic to us HCM sufferers. The other doctors that make up the voting majority in the zone I board vote the way they do, because it boils down to the simple fact there are too many for too few available or acceptable hearts in my zone. I've studied all aspects of the UNOS distribution system and I've posted threads explaining the unfairness of the system and the morbid factors that favor different sections of our country over others ( no gun laws, gang and drug activity, no helmet laws, low public transportation are all factors that raise the supply factors) but personally it's the bias against my condition with HCM that frustrates me. If I was on a IV drip (which I was on for two months and did nothing for me) or had a LVAD in me (which won't attach to my hear) I'd be moved up, most people on these therapies feel a lot better than I do. The deciding factor is supposed to be quality of life not just stability of condition. I'm about ready to go in for my 11th r. heart cath. in 3 1/2 yrs., they keep on looking for systolic HF numbers when I'm in diastolic HF so I'm pretty cynical that it will amount to anything, the numbers they're looking for would give them (my doctors) the ammunition needed for the exemption vote. Cappy I'm glad to see you got that exemption so easy and it probably was more due to other factors like a UNOS board more accepting and sympathetic to the HCM condition than anything else, and I hope you get your transplant soon. I'm writing this in your thread to keep people aware of the difficulties some of us still experience with the bias against HCM within the cardiac care provider community once you're in the transplant program, not to just sound like sour grapes. Believe it or not I'm not depressed about it , my faith keeps my head together and I thank the Lord every day I wake up, but I do wish this would all come to an end.

    John F.
    Last edited by maztbo; 04-17-2014, 03:28 AM.

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  • Heartbeat
    replied
    Re: Got On The List

    Cappy...as Gordon said, I hope your wait is brief.

    Who are you seeing at HUP for HCM? I wasn't aware that HUP had an HCM Specialist?

    Leave a comment:


  • Cappy
    replied
    Re: Got On The List

    There are four statuses

    1A: Life is in danger
    1B: On IV medication or have an LVAD, or like me by exception
    2: Stable, can wait at home on medication
    7: Inactive, these folks are taken off the list by their doctor

    Leave a comment:


  • lizh
    replied
    Re: Got On The List

    Wow what a story! I'm so glad you got on the list! What does 1b mean? What would the doctors consider a match? Sorry I don't know much about the process but who knows what is in our future?


    Sent from my iPad using Tapatalk

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  • Cappy
    replied
    Re: Got On The List

    At my January 24th office visit, the cardiology fellow at Penn, asked me what he thinks my biggest hindrance is to me health wise, my MS or my heart disease (HCM and a myocardial bridge). Without question, it was my heart disease and I explained my daily struggles to them, ad nauseam. So they fellow asked me, have you though about a heart transplant? After picking my chin up off the floor, I said, no I haven't but let's talk. We chatted for a bit and I agreed with the stipulation that neurology is okay with everything. My attending doctor came in and we had further discussions, and we all agreed that if neurology is okay with it, then we will proceed with the evaluation.

    My cardiology group is at the University of Pennsylvania (HUP) and the heart failure/transplant folks all work together, so it was a matter of my doctor talking to they pre-transplant folks to get the ball rolling. After consultation with my neurologist, (who is at Jefferson), neuro was on board with the transplant. A few weeks later I got a call from the pre-transplant folks, we agreed on a time to go on for the evaluation and testing. A few weeks later, I was approved by the transplant team to get on the list and two weeks later approved to the 1B status. From initial conversation to being listed was about two month.

    I was first diagnosed in 2003, first with HCM, then the bridging of the LDA shortly after. Had an AICD placed August 2003, monkeyed around with different medication combinations. In early 2005, at the urging of my wife, I decided to transfer my care down to HUP. As much as I loved and respected my then cardiologist, I felt it was time to move on for more specialized care. Best move I ever made, (and I'm reminded on occasion by my lovely bride about that). He was finally able to stabilize me and we found the right combination of medication. In 2006, I started having symptoms of MS and was eventually diagnosed a year later.

    In about 2009 or so, I think is when my downturn started. I was fatiguing more, hitting the nitro spray more and slowing down a lot. Adjustment to medications yet again seemed to stabilize but only for a little. I started developing CHF symptoms in 2010. A year later a combination of the heart trouble and MS forced me to stop working. So I retired at the ripe old age of 43.

    I'm sure there is a lot blanks that need to be filled in, but that is the abridged version.

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