If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

Announcement

Collapse
No announcement yet.

Advice regarding Cleveland Clinic

Collapse

About the Author

Collapse

Ronnie Find out more about Ronnie
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Burton Borrok
    replied
    Re: Advice regarding Cleveland Clinic

    Yes Pam Dearheart,
    I keep my face to the sky, - - and my feet are planted firmly in mid air.

    I now have a large problem trying to figure out which pain is associated with which problem, and of the ones I can identify, I don’t know which ones to complain to which doctor about.

    I have to be very selective, as the doctors usually only have fifteen minutes to spend with each patient (considered a long session) so I can only deal with the problems that are most pressing at that time.

    For example, this evening my right leg was giving me problems, causing me to limp. Was that another stroke, or my degenerative arthritis (which has been flaring up of late), or possibly, since I was also getting pains in my sides at the belt line, was this a symptom of my kidneys shutting down again – or was it possibly all the water I’m packing – then again it might be something entirely new (I have a habit of collecting new things.)

    Oh well, I guess I’ll go to sleep and see what there is to worry about tomorrow. Have a great week-end,
    Burt

    Leave a comment:


  • Pam Alexson
    replied
    Re: Advice regarding Cleveland Clinic

    Burt,

    Sorry to hear that things in the kidney department have spiralled to this possible diaysis thing. It has it's downside but remember all the positive ,you will at that time not have such a big struggle with the fluid problem that you have had so much problem with.

    The artificial kidney is such a great invention. When I worked in dialysis I was struck by the number of patients we serviced and that all of these people would not be here in this world if we did not have dialysis and the artificial kidney. We had a great big family kind of feeling with all our incenter patients and I remember all the positive attitudes of people who had so many struggles and obstacles in their paths. The ones who wern't there for long were the ones who could not adjust or accept. You my friend are going to rock their world. You will bring a pizzazz as not usual to any center I have ever been to. I can just see it now, " Burt in his recliner telling jokes to his fellow dialysis friends, keeping everyone in stitches. " As you have already had every diagnosis known to man what is one more ,ESRD ( end stage renal disease). Burt I saw people who did so well they were there for 20 years. I worked there for 10. I know you will make the adjustment well as you always face these things with your face to the sky.

    Good luck friend.

    Pam

    Leave a comment:


  • Burton Borrok
    replied
    Re: Advice regarding Cleveland Clinic

    Hi Ronnie,
    Since I wrote the above I called my high risk caseworker and found out they have a representative at the dialysis clinic who will coordinate my getting treatments on the road when I go on vacation, or to visit my kids in California – or family back east. Not such a bad deal after all.

    Today I also got a letter of denial to be seen by the stroke specialist who is treating Shirley for epilepsy. He used to be a plan doctor, but has moved on to the director of Neurology at the hospital I was at – yet two doctors indicated I should see him. The next step of course is the expedited appeal, and I am toying with the idea of including a request that if the appeal is denied I want it in writing so that when I have another stroke I will have a course of action available against them.

    On a thumbnail, an authorization request was initiated by my PCP – It was returned with the remark that she choose an in-plan neurologist, she did, and I went to the appointment, but the doctor said I need a stroke specialist, which he was not. He offered three names of stroke specialists – including the one I requested, and the other two were not listed in my Provider Directory either.

    Oh what a tangled web is wove,
    When dealing with an HMO.
    Burt

    Leave a comment:


  • Ronnie
    replied
    Re: Advice regarding Cleveland Clinic

    Burt-
    What can I say?
    I think, when the time comes for you to be on dialysis, you won't be too happy, but the peipleadministering it will be-just to have you there with them, making them LAUGH! I know, no matter how crummy you feel, you won't complain to them & they'll think you are there for their enjoyment & entertainment!
    Take care of yourself

    Leave a comment:


  • Burton Borrok
    replied
    Re: Advice regarding Cleveland Clinic

    Hi Ronnie,
    I guess I just keep going from problem to problem. I had an appointment with my nephrologist today, and my creatinin level is back up to 4.4 from 3.0 the day before Thanksgiving. Five is the magic number on this, so he’s setting up an appointment with a surgeon for a little out patient surgery on my arm to prepare it for dialysis. I asked for a delay until after New Year’s and got it.

    It then would take about two months for the artery to enlarge for the hook-up. He said I might not need it for ten years, or I may need it in two months – however we are both of the opinion that it will be two months. The stinky part of the whole thing is that once on dialysis it’s four hours a session, three sessions a week.

    We were planning to go up to Seattle, then on to Victoria for our fiftieth wedding anniversary, but I guess that won’t happen unless we can set up treatments at hospitals along the way. I bet that will thrill my insurance company no end – especially when we’re up in Canada.

    I guess we’ll figure that one out when the time comes. Heck - that will even impact my driving to LA to visit the kids. He also said my BUN indicated that I wasn’t having any heart problems, but that is not a good measure for me because it almost never goes over 100. When my kidneys shut down the BUN reached a high of 116 (extraordinary for me) and I was so messed up I couldn’t walk without holding on – SOB, angina, the whole bit. Luckily I had the drip stand for support.

    Well, I’m off all diuretics, and I’m full of water. Maybe dialysis will be able to control that problem after all.

    Listen kiddo, when you have your procedure done, if the interventional radiologist wants you to stay another day, you stay. You don’t get to see any family – ever – once they start throwing dirt in your face - - and besides, your to bad to die young.
    Burt

    Leave a comment:


  • Ronnie
    replied
    Re: Advice regarding Cleveland Clinic

    Burt-
    I'm looking forward to posting how long I stayed in the hosp. too! I really, really, really need to come home on Saturday (the day after my proceedure), My Son, Daughter-in Law & 2-1/2 Greandchildren, are coming from out of state for a very short visit, if I miss them, I would be very sad. I'm also very realistic & know if things get too complicated we'll spend more time in Cleveland, than I'd like to. I have the best motivation in the world, to get thru this one easily & law of averages (does that apply?) should be on my side by now, as they haven't before.
    Why is it, that HCMers seem to have more than 1 problem, & everything is always so much more complicated? I can cope with anything-except not seeing my Grandchildren!
    How are you feeling Burt? What can you safely do about your fluid overload, now you are off diuretics? I'm so relieved you are home. Now Shirley can get clean, again too. She told me the last time you were hospitalized she ate a pint of ice cream a night-is she still treating herself?
    Please let me know how you are doing. I'll post when I return from Cleveland, I leave 12/8.
    Happy Holidays

    Leave a comment:


  • Burton Borrok
    replied
    Re: Advice regarding Cleveland Clinic

    Hey Lisa,
    For the last eleven months I’ve been reading your many postings and marveling at the extent of your knowledge. For the first time in all that time I think I may have to disagree with you.

    Classically a heart cath and stenting is now done as an out patient procedure, checking in early in the morning and getting out in time for a nice dinner - - unless of course there are complications. For my fourth heart cath I had to check in a day early to pre-medicate my kidneys. The procedure went every way but well, having to stop after three hours because of my kidneys, followed the next day by another three hours on the table. In placing the stent the artery was damaged requiring another stent to cover that. I developed pneumonia, my blood pressure dropped to 70/40 and my kidneys almost failed, all of which laid me up for two and a half weeks (including a subsequent stroke.)

    However, if it weren’t for these after effects I would have been released the day after the procedure ended. A few months later I had another angiogram which ran something under a half hour, and laid me up for about four hours after the procedure.

    Ronnie is going for a rather complex angioplasty causing her to need an interventional radiologist to perform the procedure. I really can’t see it taking any more time then possibly an overnight stay, but that is only my opinion.

    I really am looking forward to Ronnie telling us how long it really took before she was released. I betcha it is far less then five days though.
    Burt

    Leave a comment:


  • ejm2000
    replied
    Re: Advice regarding Cleveland Clinic

    Hi Ronnie,

    I'm the new member Lisa was talking about. Many thanks to her for giving me and my wife the inside info on the myectomy process.

    Thanks for the offer of strength. Any thoughts, prayers, advice are always welcome.

    Take care and pray your procedure goes well also.
    ----------
    Edwin
    Pittsburgh, Pa.

    Leave a comment:


  • Lisa Salberg
    replied
    Re: Advice regarding Cleveland Clinic

    Ronnie, If you are having your procedure on the 10th - getting out on the 11th may be a bit too soon. Most people stay for 5 days, while it is possible to see you hit the road on the 11th, it would not be 'common'. I would hate to see you get caught without a good plan to get home.
    I will check for you when I visit CCF!
    Lisa

    Leave a comment:


  • Ronnie
    replied
    Re: Advice regarding Cleveland Clinic

    Lisa
    I WOULD LOVE A VISIT FROM YOU! It sounds as if you are arriving, after I check out. I'm arriving 12/8, my proceedure is scheduled for 12/10 & if all goes well, I can come home on 12/11. I really need to come home 12/11 (my son who now lives 8 hours away is driving toi Michigan on 12/11, with my Grand children, so I really want to see them) Please check to see if I'm still there when you arrive, it would be SUPER to meet you! Also, is there anything I can do for the person having the Myectomy? I had a Myectomy 7/23/03 & a Bypass 4/16/04, so maybe I can offer some strength. Let me know.
    Wow-now I have another reason to look forward to going to Cleveland.

    Leave a comment:


  • Lisa Salberg
    replied
    Re: Advice regarding Cleveland Clinic

    Ronnie,
    Hey how about a visitor while in Cleveland? I will be at Cleveland Clinic on 12/14 for a site visit. I will stop by and visit if your interested. A new members I spoke to today will also be there having a myectomy on 12/9.

    Best wishes,
    Lisa

    Leave a comment:


  • Pam Alexson
    replied
    Re: Advice regarding Cleveland Clinic

    Ronnie,

    Keeping positive thoughts and hoping all goes well for you.

    Pam

    Leave a comment:


  • Stuart Schwartz
    replied
    Re: Advice regarding Cleveland Clinic

    Ronnie,

    We will be thinking about you as you head off to Cleveland.
    Our thoughts & prayers travel with you.

    Wishing you the best,
    Stuart

    Leave a comment:


  • Linda
    replied
    Re: Advice regarding Cleveland Clinic

    Ronnie, I wish you the best. Dec 8 may seem like a long way off, but it will be here before you know it! Linda

    Leave a comment:


  • Ronnie
    replied
    Re: Advice regarding Cleveland Clinic

    I am leaving for Cleveland 12/8-my proceedure is scheduled for 12/10. I'm seeing Dr Patrick Whitlow, who is doing the proceedure. He's not an HCM specialist, he's an Interventional cardiologist., but I know there's a HCM specialist nearby. I will definitely post when I come home & give everyone an update. I know he can & will fix my current blockage & I'll finally be pain-free, because the chest pains are so very bad sometimes & they are nonexerctionable, so it's just out of control!

    Leave a comment:

Today's Birthdays

Collapse

Working...
X