Talking Heals

[mfh]

I am glad you are going in tomorrow as that is a high HR and getting the meds straightened out is important. Yes, our health care system leaves much to be desired and so much of it is poor communication...I am sorry you are having to deal with that. Thanks for letting us know about your appointment. I do like your humor even though the cause of it is frustrating. Yes, the bottle size...4 oz up to a gallon. And there is such a thing as drinking too much water. Good luck tomorrow.

Mary

[kayc]

Anne, I really understand your frustration...I was upset for days after seeing that new doctor that was so horrific! I am so glad you are going to your cardiac doctor tomorrow, he/she should be able to answer all of your questions and if you need another Rx, should be able to write one. My mom has had a pacemaker for years with no problems, so that makes me less afraid should I ever need one. You'll be in my thoughts tomorrow (tonight too!), please keep us posted.

[liljo]

Hi Anne,

Just wanted to say Good luck at your Appointment tomorrow, I hope all goes very well.

❤ & hugs !

Jo

[KarenK]

Anne,

I hear the frustration in your voice. It always amazed me how strange medications seemed to creep into Ron's files! Because he took so many & had a bevy of different doctors who changed dosages constantly, I kept a running daily list of everything to present at every appointment. Oft times, my lists went all but unnoticed. That is why it's so very important to speak up. Had I realized the Scottsdale doctors were responsible for completely removing his lasix for an entire week & finally restarting it at a quarter dose............. His heart doctor would have been furious, had he known, but he didn't practice at that hospital so was not in the loop.

Also, don't think that all doctors know about drug interactions with other drugs because some don't have a clue. Always check on drugs.com when you get a new medicine. The words Bumex & Lasix are quite different on paper although they are both diuretics & cause fast heartbeat. Do you take Coreg? I believe that was one of the meds Ron was on to regulate his heartbeat. Of course, that was in addition to his pacemaker/defib.

This is not to scare you, only to inform you. Ask the doctor what type of pacemaker & what type of leads would be used. Ron's pacemaker was Medtronics & was replaced with a newer Medtronics version during the 8 years he had it. He had no problems with the pacemaker itself, but the Sprint Fidelis leads used for the original placement were recalled for defects. After a time in ones body, they cannot be removed, but can be disconnected & replaced with good leads.

I don't personally know anyone else who has a pacemaker, although they are quite common. I have seen "pacemaker forums" on the net also if you are interested in reading about others experiences. I would definitely see if some of your meds can be changed to compliment each other before considering surgery, but that's just me. You know how I HATE doctors.

Please check back in when you can & remember I am nearby.

Luv,

Karen

[Wifflesnook]

Anne, I am thinking of you. I'm so sorry that you are having this worry. Although in the Uk knew have a good free health service it isn't problem free. For a start we don't usually see the same doctor any more and there doesn't seem to be any joined up thinking. This is partly because there are now so many diseases and so many treatments I guess. Which is good. But ... Anyway I know you will let us know what the doctor says and I hope he or she will explain everything more clearly. Doesn't sound as though you have been given all the proper info. How on earth do people cope who aren't as bright and clued up as you?

[MartyT]

We're ALL thinking of you today, dear Anne, and hoping and praying for a good report from your cardiac doctor.

As Jan said, I don't know how "people who aren't as bright and clued up as you" manage to find their way through what seems like medical madness to the rest of us.

I hope you have another set of eyes and ears to accompany you to your appointment today, to help you sort through and remember all that is said and decided.

Please do let us know how everything goes ~ as soon as you have the time and energy to do so ♥

[enna]

Update - after a long day at my cardiac doctor's office and off to get more tests I finally was given the ok to go home. Thought I was going to have to fight him when he started talking about hospital! B/P and heart rate was even higher when I went for my appointment at 10:00!!

He changed meds again - added not subtracted! He was concerned that with all the medication I'm taking I still have numbers too high.

I return in three weeks for another review. That's ok with me as long as I don't have to spend ANY time in hospital - one could die in there you know.

I was advised NOT to consume too much water! I have been taking my medicine as I needed to - high B/P and high heart rate are caused because of the congestive heart failure. More blood workup in three weeks. The pacemaker is still on the agenda. Call if B/P and rate don't go way down after giving the new pills a chance to work. I did have a friend drive me since I was going on very little sleep.

He actually felt sorry for me today. I'm off to sleep early tonight. Last night was more up than down thinking about today.

Thank you for your concern. Love you all.

Anne

[kayc]

Oh Anne, it's unfair that you have to go through all of this! And wasn't someone else just telling you that you needed MORE water?! It's a good thing you question them! I hope the new medication helps do it. And I hope you sleep well tonight. Call me any time, I mean it. I've almost called YOU a couple of times...until I realized the time difference (I'm earlier and don't want to wake you).

[Wifflesnook]

Dear Anne

I think you are so brave in the face of such hardship. Please know I am with you even though I'm far,away. Do everything they say. We know they have your well being at heart. Jan

[mfh]

Anne, I hope you got a good night's sleep. I know you had such a tough day yesterday....just once I know you would like to go in to see those docs and have them surprise you with good news and tell you to cut back on medications. I know it gets discouraging to put it mildly. I guess I hope you can pull out those art pencils and get lost in the art (that is my escape and I know you love it also). You were on my mind yesterday and you are always in my prayers. I guess the good news is they did not hospitalize you and perhaps in three weeks the new med will take you in the right direction....I so admire your strength and I also know you would probably like to not have to be so strong for a while...a respite from the storm.

Peace

Mary

[MartyT]

My sentiments exactly, Mary ~ thank you.

Anne, my dear, I'm so sorry your visit didn't go as well as you had hoped, and I'm sure you'd like to take all those drugs and throw them out the window. I hope and pray that whatever changes were made in your meds regimen will prove to be for the best. We carry you in our hearts, that's for sure. ♥

[Queeniemary]

Anne, I love your sense of humor...sitting in the bath on a block of salt, drinking water, I laughed out loud. I love that you can keep your humor going even when you are so distressed. It is distressing I know that definite answers are not always forthcoming. My sister in AZ has a kidney problem...not sure the scope, one doctor tells her to drink lots of water, another tells her to curtail the water....what to do. She will probably follow the doc that tells her to drink lots, as that is her kidney specialist.

Thinking of you, and praying.

Mary (Queeniemary) in Arkansas

[kayc]

QMary, I'd tell those doctors to get together and when they reach a COLLECTIVE decision, to let me know what to do.

It was the same when I worked for a partnership and the two partners would tell me opposing things...I'd tell them to discuss it and then let me know what they decide.

[enna]

I'm so glad I had a good night's sleep.

I'm having an afternoon lunch today for a few friends and watching a movie:

Veggie Artichoke Bisque (creamy and light) served with slices of herb focaccia – I love blenders

Almond Tuna Sandwich made with albacore tuna, apple, celery, green onion, lettuce, mayo, and tomato served on a Ciabatta roll

Double Chocolate Brownie (already made) with a scoop of vanilla galato and a strawberry on top

Strawberry iced tea available or water

Watching either “Ya Ya Sisterhood” or “Under the Tuscan Sun.”

(dark chocolate is already out on the tables)

Table setting is blue and yellow with a red and white carnation centerpiece – today’s temperature will be 83 degrees.

There will only be five of us. I have room for three more but could always fit a few extra.

[feralfae]

Dear Anne,

The menu sounds wonderfully delicious!

What a super idea to have a few friends in for a movie! Most of my friends are still in the work force, so I must "catch" them sometimes between.

I hope your heart and health can improve some so that in three weeks you get a better report. I wish we could all enjoy better health this coming spring.

Have a wonderful time, and enjoy the movie!

*<twinkles>*

fae

[mfh]

Anne, I will drive around and pick up everyone here and we will ALL show up for that glorious luncheon....set some more places...let's see I have to consider taking the car over the ocean to England and then hit some other states and countries in a couple of hours. Hmmmmmmmm...Tuscan Sun works for me.

Sounds great. I will be heading to the General Store for lunch with about 8-10 never know. I might break down and eat chocolate today....

[enna]

Well, dear Mary, I just may not see all of you for a few months! Please eat chocolate today and every day. I have Dove's dark chocolate scattered around the living room so noone really has to get up from their spot while watching the movie - lazy me!

[Queeniemary]

Oh My Goodness, what a wonderful sounding lunch!! I so wish I were there! I would chose the Ya Ya Sisterhood. Loved that movie, don't think I have seen the other one. My daughter's girls are spending weekend with me, so I loaded up on chocolate for them....candy, pudding, cookies, it is Valentine weekend after all. My daughter's wedding anniversary is also today, Valentines Day, and they are going away for the weekend to Branson to a spa resort. She is going to be so pampered. If I can take the picture and get it to show, I will post the picture of the cute little box of chocolates my young friend Jamie just brought me. (for those of you following "The Importance of Being Earnest" saga with me, he is playing the part of Mr. Jack Worthing) He calls me his other Mother. His Mom and I graduated high school together. The box has a picture of a corgi on it.....lol.

Mary (Queeniemary) in Arkansas

[kayc]

OMG, that sounds so good! I wish I wasn't allergic to fish, I love it all, clear down to the Ciabatta roll!

[enna]

Lunch was fun. the movie "Chocolat" with Johnny Depp and Juliette Binoche won out. Only three of us watched because the other two had to go home to their spouses.

I love the picture of the corgi chocolate box, Mary.

Kay I would make you a wonderful chicken salad sandwich - no fish!

Oh Mary, would it be so much fun if some of us really did get together - I am sure there would be so very much talking going on that we would need more than one lunch!

Tonight I will spend some quiet time thinking about my Jim.

[Queeniemary]

Love Johnny Depp. I had a nice quiet evening at home, reading. Granddaughter MaCayla was helping out at church. They were providing babysitting services for couples who wanted to go out. She loves kids, and enjoyed her evening, the church fed the babysitters. Granddaughter Katy spend evening in her room, listening to music, after she and I had tomato bisque and toasted cheese sandwiches. As I said nice quiet evening.

Would it not be great fun to all get together....I think we would need a weekend or so.....

Mary (Queeniemary) in Arkansas

[kayc]

Anne, your luncheon sounds so fun!

My ride did not show up for my going to the Valentine dinner at the church. I'd taken the trouble to dress "redneck" as that was the theme, and had been planning on it all day, so I decided to try and drive myself...it was difficult. It was very dark out and the lights kind of split out like when you've had your eyes dilated, I went very slow. Plus it was raining hard. On the way home it was real foggy, which is unusual for these parts. I made it home, but it just confirmed to me that I really should not be driving at night. I had an okay time, but really, I prefer not to be around valentine's stuff, it's hard. I sat with a divorcee and and widow.

QMary, it sounds like you had a good evening!

[KarenK]

Dam#, dam#, dam#! Sorry, Marty, Mary, & anyone I may have offended, but that describes a tiny bit of the way I am feeling right now. Almost 2 AM & no more sleepy than.........

When I talked to my daughter last night, I felt the tiniest ray of hope. She sounded just a little bit better & had been able to get her original lower planned dose of chemo as her liver enzymes had dropped sufficiently. She is good at keeping things from me when she wants to, especially because we are not face to face. She had not wanted to add extra worry for me, so she didn't tell me that she has been having problems in the female area. If this were the cancer board, I would be more graphic, but will spare all of you the details except to say she may have developed something called "rectovaginal fistula". She finally called & told me today. Neither of us had ever heard of this & it is rare. If you google it, Mayo has a good explanation.

The on call surgeon will have her surgeon's office call on Mon. to set up a CT & appointment. There is just no "break" for her, even though I ask a higher power for one each day. It's likely that chemo has caused this & if so, I think she has reached the end of her rope. I just don't know what to do anymore. I always try to be so strong for her, but I am dying inside.

I know this is not the appropriate portion of the forum for this post, but you are my friends, & this is eating me up. I messaged 2 friends on the cancer board, but won't post it on the open forum as that is her call if she chooses .I guess I'll tell my son tomorrow. I know she is trying so hard to stay alive, & yet at every turn, she is smacked down. I know those of you who have lost loved ones to cancer can understand. Cancer took the love of my life & is doing it's best to take my child.

I know I am rambling, but am just so very distraught. Thank you for your prayers & listening to me.

Luv,

Karen

[mfh]

Karen, my heart just goes out to you. This is such a heavy load for you to carry. As if losing a husband is not enough, dealing with your daughter's serious health condition on top of that just puts this way over the top. i am just so very sorry. I did look up rectovaginal fistula on the Mayo site and I can see another layer or worry.

You do need to talk and share and this site is the place for that. I know the distance is such a big factor...i.e. not being able to be with her, go to the doctor with her etc.

Know that you are in my heart and prayers during this painful and frightening time. Are you in contact with any friends, group/individual support during these days? Just someone to put their arms around you once in a while.

Mary

[MartyT]

Karen, my dear, please know that you and your daughter are in our thoughts and prayers. I am so sorry to learn this latest development ~ and I know there is nothing more painful for a mother than to see her child in pain. It is the very definition of helplessness. My heart hurts for you . . . ♥