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Monday, February 29, 2016

When will I get used to all of this

Yesterday I woke up feeling weird and the pacemaker did not appear -- to me -- to be doing what it's been doing this past two weeks.  I was a little dizzy and my pulse was at 114.  I thought the pacemaker should be trying to bring that rate down but it didn't.

I put in a call to the cardiologist and he called me back!!  On a Sunday!  He explained to me again how the pacemaker is supposed to work.  I don't know why I can't seem to understand it.  Anyway, he said that the high heart rate was an Afib episode and that the pacemaker does NOT do anything to help Afib.  All the pacemaker is supposed to do is keep my heart rate from dropping down into the dangerous "flat-line" condition.  I still don't understand why the pacemaker is feeling different than it did before but I hope it's because the inflammation and swelling is going down and it is settling in.  And I hope that is a good sign for NOT needing another surgery.

But he said that the high heart rate I was experiencing should calm down and shouldn't be lasting for hours so he told me to take an extra dose of one of my medications (Metoprolol) and give it several hours and call him back if it didn't calm down.

So at 12:30 it was still going strong so I called him back.  He had me take my blood pressure and it was fine so he told me that when I took my night medications, I should increase the other medication (Flecainide).  The heart rate went down to the high 90s and stayed there the rest of the day and all night.  I felt much better.

Today I took Coco to his vet appointment and he now has pain in his cervical spine so I left there with many medications for Coco (prednisone, tramadol and a muscle relaxer).  She did a laser treatment while I was there and I think it helped him.  I'm going to take him back for more of those.  And I will probably try acupuncture for him.  I will do anything for him.

When we left the vet I brought Coco home and then did a little shopping and I realized while I was shopping that I was feeling wonderful. I checked my pulse and it was down to a smooth 70 -- not an erratic 70.  YAY!

Friday, February 26, 2016

Blood sugar levels

Last night I was feeling shaky and clammy so I decided to check my sugar level -- it was 77, a bit low. I had a cup of orange juice and in a little bit I felt better. This morning my sugar was 72, even lower. Another cup of orange juice. This afternoon my sugar was 58, getting scary. Orange juice and dinner brought it up to 129. So now I have something new to figure out -- how to eat to keep my sugar levels stable.

I got on my computer and went to my Aurora Cardiology Portal and sent Dr. Pacheco an email asking him to (1) clarify what is going on with my pacemaker; and (2) give me his opinion on the sugar levels. When I sent the message a note popped up saying not to expect an answer for 24 hours.

Well, my phone just rang and it was Dr. Pacheco. Boy, I really like this guy.

With regard to the sugar levels, he said that none of the medications I am on even remotely cause any problems with sugar. He said if it keeps up and I am not able to control it, he will refer me to an endocrinologist. So I will try to remember everything Marshall did to stay stable. I know crackers and orange juice were important.

Then Dr. Pacheco explained to me -- again -- what we are doing about the loose lead on my pacemaker. I had kind of spaced out a bit yesterday when he mentioned the possibility of needing another surgery. So, he went over it again:

Sometimes during the healing process, while the body is getting accustomed to the mechanism that's been implanted, the inflammation and swelling that occur during the healing process causes things to move around ever so slightly and therefore the wires can move a bit. That's what happened to me, the wire moved just enough to interfere with the "pacing" duties of the pacemaker. There is inflammation and there is swelling. As the inflammation and swelling go away and the wires start attaching to scar tissue things can go back into place.

I had thought he said that a screw came loose and I was wondering how in the world a screw could magically go back into place, so it was good to hear that that's not what was said. I think the Medtronic representative was trying to explain a lot of things about a pacemaker and he might have mentioned screws and I probably carried that thought over to my conversation with the doctor.

I made the mistake of Googling the process of changing out a lead and I wish I hadn't. That Google search came up with absolutely nothing that was even remotely encouraging.

So now I wait two weeks. I think I will suspend all unpacking of boxes and lay low for two weeks. Monday is Coco's appointment with the vet.


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Thursday, February 25, 2016

Today

This morning I was feeling very upbeat about seeing the doctor today (appointment was for 2:45). Also, I got a call this morning from the guy at the University and he gave me a few places to call for a widow/widower support group. I'll make those calls tomorrow.

At 1:00 the doctor's office called to say that Dr. Pacheco had an emergency and they needed to cancel the appointment and he didn't have another opening for a week. I kind of lost it and burst into tears. She said she would keep me posted if the doctor got back to the office.

When I calmed down, I called her back and asked if I could come in anyway and see the nurse to get my INR blood work done. And I reminded her that they were supposed to "interrogate" my pacemaker today. She told me to come on in.

My INR was 2.7 and the nurse said that was good.

The pacemaker rep did the interrogation of the pacemaker and ran a few tests and then said he had to go call the doctor. I asked him if he made any adjustments to the pacemaker and I can't remember what he said -- I've got to clarify that tomorrow.

Anyway, he came back in and asked if I could wait around for a few hours because the doctor needed to see me. That couldn't be good. The rep said that one of the leads on the pacemaker had gotten a little loose and it looked like I needed to have another surgery to have a new pacemaker implanted. Just what I wanted to hear...

So the doctor got back around 4:30 and he took a look at the interrogation report and examined me and here's how he explained it (Or at least the way I interpreted what he said): One of the reasons I am having some of the problems I've been having is because of this loose lead. It's causing a bit of shakiness. And he said that this situation can be caused simply by the body's attempt to accept this foreign object and that it is possible it can right itself so he wants to see me in two more weeks to check it out again and we can hope I will not need the surgery.

But if we do need to do the surgery, he said, it's best to do it now and get it over with before things get too settled in the body. The longer we wait the harder it would be to remove whatever needs to be removed which would make it a more extensive surgery. I'm not sure if I got all of that right, but that's the way I understood it.

So I go back in two weeks to see what the future holds.

I talked to the doctor about the dizziness and the numbness I've been having and asked if it could be related to the Afib medications which he had increased over what I had been taking when I left the hospital and I told him that it seems like those symptoms are the main side effects listed for these medications. He said he did not think these medications caused any of my symptoms -- he thinks it is more likely to be me still getting used to the pacemaker. I asked him if I could decrease these medications to see how it goes and he gave me permission to cut down the Flecainide from 150mg twice a day to 75mg twice a day but not the Metoprolol. He said he didn't want to lower them both at once. So we will see how that goes.

The doctor saw that my INR reading was 2.7 and he said he'd rather see it at 2.5 (even though his nurse told me it should be between 2 and 3) so I have a new goal.

Now I really need to be sure I find a pet-sitter, don't I?


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Wednesday, February 24, 2016

Doctor appointment tomorrow

I'm a little nervous about tomorrow's appointment with the cardiologist. I have high hopes that tomorrow will put me on the road to feeling better but then part of me says I am expecting too much.

I'm sure the pacemaker needs adjusting -- I can often feel it going too fast -- but what do I know... Then there's the medications. I think I'm having side effects but to which medication? Metoprolol (rate control med) or Flecainide (rhythm control med) or Warfarin (blood thinner). I'm having scary dizzy spells, bloating, constipation, and the tip of my tongue is sometimes numb. (And, by the way, the dizzy spells only come on when I'm up and walking around, never when I'm sitting down or laying down, so I feel okay driving.)

In the morning I wake up feeling fairly good and start to get optimistic. I then take my Metoprolol and Flecainide and within 30 minutes I start feeling sick and dizzy. Then around 3:00 in the afternoon I slowly start feeling better. At 8PM I take the Metoprolol, Flecainide and Warfarin and in a little bit I start feeling crappy again and my heart starts pounding. I check my pulse constantly and it will go down to 25 or 30 and then the pacemaker will bring it back up to 68 or 70 and then down to 35 or 40 or 50 and then the pacemaker brings it back up again, etc. etc. I feel jittery.

Tomorrow they will "interrogate" the pacemaker and I think they will be able to see the whole two weeks of pacemaker/heart activity and that should tell them if adjustments are necessary. I think.

They will also check my blood to see if I am successfully keeping my INR in the 2 to 3 range. I had a little bleeding (gums) on Tuesday so I need to talk to the doctor about that.

I'm scared to leave the house but today I had to go to Walmart to pick up a prescription so I forced myself to walk around the store for 30 minutes. And tomorrow I'm actually going to my doctor appointment by myself!

I will report tomorrow on how the appointment goes.

I made an appointment to take Coco to the vet on Monday just to get him introduced to his new vet. He's not doing well at all and I am trying to spend quality time with him. When we first moved here, he appeared to enjoy going for short walks on the sidewalks around the complex. Now when I take him out he refuses to walk. There is a commercial on TV about a guy going through a Bucket List for his aging dog. Every time I see it I think of me and Coco.

When I'm at the vet, I will see if they have any recommendations for pet sitters. I really need to get a pet sitting relationship going because if I need to go back into the hospital (which seems imminent almost every day), I want to be sure I can get someone to take care of Coco and the cats.

I am fortunate, very fortunate, to have so many friends who are always there for me and yet I've never felt so alone. I've been trying to find a grief support group because I think it would help me tremendously but so far I haven't had any luck. Tomorrow I'm supposed to call a guy at the University of Colorado Hospital to see if he's found a group for me.

Thanks for listening.


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Tuesday, February 23, 2016

Post from another caregiver

I receive a lot of emails from other caregivers who have been following my journey. Today I received an interesting one from someone who has contacted me before that I would like to share with all of you. I have not yet gone to her website -- I haven't been feeling very good and not sure what is going on with me. Hopefully I just need to have the pacemaker adjusted so I will lay low till doctor visit on Thursday.

Anyway, see below:

"Marilyn:

"I had emailed you back in September and wanted to reach out to you again, for now I have begun my own cancer crusade.

"My father’s dream was to get on the Yukon River. I will be paddling the entire Yukon River this summer to raise money for prostate cancer. If you are interested my website is:

"www.piratesoftheyukon.com"



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Wednesday, February 17, 2016

First post-surgery visit to cardiology

Yesterday I went for my first blood work since starting on Coumadin. When I got there, they gave me an EKG which showed nothing out of line.

Then they took the blood test for my INR (not sure what that stands for, but it has to do with how fast the blood clots). Mine was 2.9 and they told me it should stay between 2 and 3 so I accidentally did good the first week. I found an iPhone app where I can track my food to be sure I keep my Vitamin K intake consistent. I have given myself a daily goal of 20 micrograms of Vitamin K a day.

I go back next Thursday for a checkup on the pacemaker. They tell me they need to "interrogate" the pacemaker. Isn't that a silly phrase? I have an image of sitting on a wooden chair in the middle of the room with bright lights shining in my eyes while someone yells questions at my chest!

But anyway, my research on the Internet (which my cardiologist told me to stay away from) says that a new pacemaker almost always needs one or two adjustments at the beginning. I've been having jittery sensations in my chest and I hope an adjustment will quiet that down.

But all in all, I feel way better than I did two weeks ago. I'm tired but I guess that makes sense as I recuperate from having surgery.


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Thursday, February 11, 2016

Pacemaker

Monday morning bright and early I had the surgery to implant the pacemaker. It went well. I had to spend the night for observation and I came home on Tuesday. I have to have my left arm in a sling to keep me from moving it in ways it shouldn't be moved for a few weeks. But other than that, I can resume activity "as tolerated."

And right now I'm not able to tolerate much. I'm having trouble adjusting to this new heartbeat and I'm also having trouble adjusting to the increased medications I now have to take. Not to mention the Coumadin (blood thinner). So I just feel weird and probably will for a while.

A home care person is coming in three or four days a week to help me with laundry, shopping, cleaning, getting my mail, taking me to doctor appointments, etc. I'm not used to that and I hate to feel so dependent, but I appreciate it greatly because I couldn't really do those things at this point.

It has amazed me how many people I know have pacemakers and I didn't know it. I'm getting quite a few messages from people telling me it gets better fast and that I will feel so much better. That was comforting.

I got my dog back today and I was so glad to see him again. We have been cuddling all day.

I want to say something to the caregivers who read this blog: people will tell you over and over to take care of yourself while you are taking care of a terminally ill loved one. But I know firsthand that when your loved one is in pain it is extremely difficult to leave him or her to go to lunch with a friend or get a massage or even take a walk. So I want to stress that you absolutely have to do it, even if it's hard. I believe that all of the health issues I am having now are a direct result of staying by Marshall's side and not getting out to take breaks. Please take this seriously.


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Sunday, February 7, 2016

Hospital paraphernalia

Okay I feel like the bionic woman. I have a heart monitor hanging around my neck, an IV on my right arm, blood pressure cuff on left arm, pulse-ox on my finger and compression things on my legs. Going to the bathroom is a very involved process.


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Update

The cardiologist just came by (Dr. Jose Pacheco) and he is going to schedule the Pacemaker implant for tomorrow morning at 7:30A. It will be under local anesthesia and sedatives. It will be a 2-lead pacemaker.

He says that the pacemaker is NOT a treatment for Afib, it is simply a control for the heart rate. So after the pacemaker is implanted we still have to regulate the medications for the Afib, so I will have to be monitored for at least one night, maybe two.

Then if the medications don't work for the Afib, I still will need to consider ablation surgery (which would be done by an electrophysiologist, probably at the University Hospital). They had discontinued the medications yesterday so he is going to start them up again today to try to get started on a medication regimen.

I will have to have a sling for my left arm, for the sole purpose of keeping me from raising my arm above my shoulder level. And he says I shouldn't drive for five or six days. But I will be able to lift/carry my dog and do most other household activities.

He said that today's pacemakers are MRI-friendly and they also come with a radio transmitter to send information to the doctor. I asked him if he would be my doctor and he said that would be fine if that's what I wanted.

I really like this cardiologist. He is upbeat, tells jokes, answers all my questions and is not rushed. He graduated from Harvard Medical School many years ago and has been practicing for 37 years. I found a few reviews of him and they were all good.

So that's the story for now. I will let you know as things progress.



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Saturday, February 6, 2016

Update

Sorry it's been so long. I finished packing (finally) and got moved (for the most part) and started getting settled in. Took a trip back to Westcliffe to get some of the things I left behind. Worked at getting the animals acclimated.

And I haven't been feeling well. So finally yesterday I had six or seven near-fainting episodes and several more again this morning.

So I went to the emergency room and I've been admitted to the hospital. The doctor says I flatlined several times for as long as 6 seconds one time. So it looks like a pacemaker is in my future -- my very near future. I will be in the hospital until the pacemaker is inserted (and right now I assume that will be Monday or Tuesday). I hope that eases up the atrial fibrillation.

Anyway, I miss Marshall so much right now. He should be sitting here in this room with me holding my hand. I have some wonderful friends helping out with the animals and other needs, but I sure wish he was here, too.

I don't imagine I will see any doctors tomorrow (after all, it's Sunday and it's Super Bowl) so tomorrow will be kind of stressful. I am kind of scared.

I will update this as we go on.


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