Bad News from Cleveland Clinic

[Snoviper]

More prayers coming your way, Keep hoping for the best.

 

[hensylee]

I am amazed at the stamina and courage of many of our members. You are in a situation similar to Ross' - the boondoggle to get help for yourself, yet you are so encouraging to others.

I have been praying for the help you need to get what your doctors want so badly for you.

I have heard about Angelflights - in fact, I think some years ago we had a child who was flown to Orlando for a 'wishes' triip. Hope they can help.

Ask and ye shall receive - I am praying so. Blessins...............

 

[pamela]

Hi Dawn-Marie, I hope today finds you well and healing. I think of you often in my day.

Take Heart, sometimes our prayers are answered and all we need is the faith to see it.

I know a friend who sent wishes that he'd get a winning poker hand in a Texas Hold 'em poker, "God! Let me win just one hand, today." Well, next hand he was dealt gave him an 8 and a 3 in the hole. He folded. As the hand progressed through the flop, revealing an 8 and an ace and a 5; onto the turn card which was a 3; and finally, the river included another 8. Turns out God gave him a full house, he just didn't have any faith that his prayer would be answered.

Keep the faith, Dawn-Marie,
Pamela.

 

[Dawn-Marie]

Hi my friends ~ I'm waiting for Dr. Strzalka to get back to the office tomorrow and see if he came up with anything new that he thought might help me. I'm just hoping that this problem with the bedsore won't stop the heart surgery as there is a big chance i'll get a bad infection through my body from it according to my nurse. Right now it's just an open sore and she's keeping antibiotics on it.

I'm trying to keep a positive attitude about it. It's just that i'm realistic too. God doesn't always answer people's prayers the way we want them to be answered (or i wouldn't be paralyzed as i prayed time and time again before surgery that i wouldn't become paralyzed, as did a lot of people). Yet, i am and the dr. said there was only a 5% chance of paralysis ~ that's why i had the radical surgery rather than chemo and radiation. But i still keep believing and praying anyway...maybe this time my prayers will come true.

Yes, Ann, it's too bad about Ross...i hope things work out for him soon! He's such a wonderful man and knows so much about valve surgery and helps so many people here. I know his frustration with the system well. We have the best Medicaid system here in NY, yet it was on Good Morning America a while ago about a little boy who had a tooth abcess and no dentist would take him because Medicaid pays $6 per tooth. The abcess went to his brain and killed him. Chris Cuomo talked with the head of Medicaid and she said it wasn't their fault as they would have paid for it. Right!!! No dentists in our town take Medicaid because of their low payments - that's why i have to go way out of town. And the work they do at the clinic i go to is shoddy. It's really bad for people like Ross who don't even have Medicaid. It's not right that he should be fighting to get care. I think a good solution would be to make new dentists do a certain percentage of charitable work in payment of their student loans (which most of them have). My former neighbor's daughter-in-law is an orthodontist and she owes several hundred thousand dollars for her education, so it wouldn't hurt for her to do some free work in exchange for the loans.

Thank you again all for keeping me in your prayers. I'm keeping you in mine too (everyone needs prayers)!

I'll let you know if i hear anything tomorrow from my dr.

You all have a good night!

Dawn-Marie

 

[hensylee]

your pressure wound is troubling. I truly pray that they will keep such close tabs on it that it just can't do anything but be cured.

Thinking of you a lot.

 

[Nancy]

I really feel for you and that pressure sore. Joe had one that he got in the ICU. It was a real booger to take care of, and for a while it was doing OK, and then it started getting worse. He couldn't move much at that time, couldn't breathe when he laid down, so ended up sitting upright most of the time, and got the sore because of this. I got him a heavy duty wheelchair cushion to try to give it some relief. That only helped minimally.

Dressings had to be changed several times a day and of course barrier creams and antibiotics. But moving around was the only real solution, and it wasn't possible for Joe.

I even got a vibrating cushion for him to sit on every once in a while to try to get some circulation going.

But that sore kept hanging on.

I hope your heals.

 

[escargome]

Dawn-Marie,
Ask the clinic or the nurse you see for that bed-sore if they have access to some medication called PRISMA. My husband had a wound from a staph infection that his prodiatrist used the PRISMA to pack the wound and it helped heal it really fast. I don't know if your medical situation would pay for it, but it sure wouldn't hurt to give it a shot.

 

[hensylee]

have a cousin who is seriously ill for years now. Talked to him last night; he has one and the nursing staff is using kerasin (sp?) and it helps. They are trying to keep it under control.

 

[Dawn-Marie]

Hi ~ Thank you for the suggestions about the medicine. I'll ask Laura (my nurse) when she comes on Thursday. Also depends probably if Medicare will pay for either one. I had a second sore come open yesterday evening, so now i have two (neither one are all that deep, but in a bad spot that cannot be bandaged). It's odd...i normally can't feel at all, but these i can feel and it's a throbbing pain like a toothache. Driving me nuts since i have to sit all day. It's also started up the Vasal Vagel (or something like that) and i'm getting dizzy a lot because of it. At least i'm not fainting like i was when i came home.

Still no word from Dr. Strzalka (and this is his only day of the week that he is in his office). So, now i'm not sure if i'll even hear from him. His nurse said he made lots of calls to other doctors. Must be that so far nobody has called him back with any ideas yet. I e-mailed him the names of doctors you suggested too so, hopefully, he contacted them too.

Thanks again for the bedsore medicine suggestions.

Dawn-Marie

 

[Nancy]

Don't read anything into not hearing from the doc, yet. He may be playing telephone tag with other doctors. So give him a little time to get things together. You have many issues, and I am sure other doctors will want a lot of information about your case before commenting on things.

 

[hensylee]

my dear Joe developed a pressure wound and he recognized it immediately because his wife had them (she had ALS and could not move at all). He insisted on rubbing his spot a lot to bring blood & circulation to the surface, because that's what was done for her and it worked pretty well. His never opened and he never had another one. It was on his hip bone area because he lay on that hip a lot and was very thin. But you are saying one of yours has broken open so I guess you can't have anyone rub it with it that way. Maybe the one that's not broken open? I am so sorry because I know that you are uncomfortable. We are keeping you in our thoughts and prayers. Bless you.

 

[Superbob]

Dawn-Marie,

I am keeping you in my thoughts and prayers.

 

[skeptic49]

Dawn-Marie,

You are in my thoughts...hoping that all goes well for you. Kepp us posted.

Best wishes,

Jim

 

[Dawn-Marie]

Hi friends ~ Yes, Nancy, it's probably true that he's chatting back and forthwith other doctors, which can take time because of their surgery schedules and office hours, etc. It's hard enough for me just to connect with him! I called him today because my one sore has morphed into 4 sores now. My nurse tried to put a bandage on it even though it's in a hard to bandage place and it came loose and the tape and bandage bunched up and caused wrinkles, which have all turned into open sores. All 4 now are about 1/8" deep and are all draining. I'm just so worried because of where they are that they will get infected. It doesn't take long for that to happen, or for them to get deeper. Christopher Reeve died from a sore that got infected and he got sepsis throughout his body. It's a common cause of death for paraplegics and quadriplegics. I'm caught now in a real catch 22...i really need surgery to prevent them from getting worse, but Dr. Strzalka told me i can't even have minor surgery until my heart valve is taken care of, since i won't survive it. His nurse, Kelley, told me he would call me back today (or she would after talking to him and telling him of my problem), but i waited until after 5 (when their office closes) and nobody called back. So, hopefully, i'll hear from them tomorrow. He's not in the office except on Tuesdays (and i called him then too), so i hope i hear from him before then. The sores are causing me to have Vagal Vasal (or something like that) and i'm dizzy all the time. At least i'm not fainting from it like when i came home!

Prayers would be appreciated, since i'm almost more worried about the bedsores now than my heart valve!

Thank you all!

Dawn-Marie

 

[Jackie]

Dawn-Marie, You have my prayers, I'm so very sorry for all you are going through. God bless you.

 

[Nancy]

I know what you mean about those bandages wrinkling up. Joe had his sore right at the base of his spine, and nothing stayed adhered for long, and it bunched up and caused even more trouble. We tried everything Tegaderm, and some other special dressing for pressure sores with medicated gel pads, plus his skin was like tissue paper and would tear if you looked at it, just about. The adhesive on those pads was so strong that when they wrinkled and bunched up, the skin came with it. We had a healthcare nurse come to monitor the sore and she brought all kinds of things, none of which worked very well.

I found that just some regular telfa pads with a minimal amount of tape were the best, and they got changed all the time. At least they didn't bunch up too much and tear his skin.

It's a terrible problem and the dressings are VERY expensive.

 

[gijanet]

Dawn-Marie ((hugs))

Dawn-Marie ((hugs))

Just adding my prayers and hugs and hoping that you have gotten an answer. Keep us posted. We care. Hugs. J.

 

[Dawn-Marie]

Hi ~ I still haven't got any answers as to what to do. My nurse doesn't know what to do actually. Tegaderm was one of the dressings that she used. The trouble is i have to sit up from the time my aide gets me up until i go to bed at 8 PM. Medicaid won't pay for an aide to come in-between then. The nurse said the sores are in a place that is near impossible to bandage without it coming off, so i just put antibiotic cream on them to prevent infection. Now the sores total 5...my skin is so thin also that it is just ripping. My aide just touched me gently Friday morning and a new sore started bleeding. Basically, i need surgery, but Dr. Strzalka isn't calling me back and letting me know if i dare have the surgery. His nurse was supposed to contact him on Thursday and then call me back, but she never did. He might have been in surgery all day though...sometimes he didn't come to see me in the hospital til 9:30 PM, or later after he got out of surgery. It's just upsetting me because i've seen two of my neighbors and good friends die horrible deaths from getting sepsis because of their bedsores. Even if Dr. Strzalka finds someone to do the valve surgery on me, it may be too late if my bedsores get really bad. They can make it so a person is bedridden for years trying to heal them. I'm sorry to be so upset, but this is scaring me and i'm at a loss as to what to do about it. Thanks very much for all your prayers. I'll let you know if anyone (my nurse or doctor) has any solution to help heal them. I'll let you know too if i ever hear from Dr. Strzalka (but i'm beginning to doubt i will). Dawn-Marie

 

[netmiff]

not sure just where your sores are, but would sitting on a "doughnut" help?? you've probably thought of that if it's appropriate, but I thought I'd throw it out there just in case . . .

 

[pamela]

Dawn-Marie, is it time to go to an acute care hospital and get the wounds treated and the pressure off them? If the aide only comes when she's paid to, ask her to push for more frequent turning and repositioning. But, right now, maybe you need to relinquish your independence, temporarily and get the constant care you require.

Best thoughts for you, dear lady. I hope everything works out.

Take Heart,
Pamela.