JoAnen's Journal

Things have been going well with the AVR. I had to have pacemaker and have a hard time keeping my INR in range but that has been the only issue I have. Since I had a mechanical valve this time I am very aware of possible infections. I just got the letter that CDC released about possible infection from the heater cooler machine. In the time period that they stated I had 2 aortic replacement surgeries. I was wondering if anyone in this community has gotten the NTM infection? I plan on a visit with my cardiologist at the hospital that I had my surgery in January and will be asking them more questions. I assumed since the hospital sent the letter that they use this brand of heater cooler unit? Would love to hear from anyone with more info on NTM. Thanks

Hi everyone, Well things are finally starting to feel like normal. It has been harder with the redo on the valve and getting a pacemaker but I am finally starting to feel back to normal. I had an appointment with my cardiologist last Friday. He said that I am doing well. I have had a couple bouts of A-fib but he is not to worried about it at this point. I have about 10 more sessions of cardiac rehab. I have made friends in the group and we push each other. I started back to work full time. My stamina is not where i want but I am gaining. I have been out in my kayak once so far but the ice is off the lakes now so I plan on getting out there more often. Still not able to climb hills very efficiently yet when I go hiking, but hoping that gets better as I keep hiking. Wishing the very best for everyone facing surgery. It is well worth it.

HI Well I had a visit with my Cardiologist this past Friday. He said the valve is doing very good, They did and echo, EKG, and a device check on my pacemaker. He has me on 180 mg of Diltiazem now and of course Warfarin.I have allergy testing on the 24th. I will be glad to know what drug I am allergic to so I can avoid that. I have to go back and see him in a month. I still have my INR checked weekly because we haven't gotten it leveled out yet. I have had 3 sessions of cardiac rehab and it is going well but I exercise at home. I am excited to get back in the pool next week for aerobic classes. I really need to concentrate and getting my stamina back as I need to go back to work soon. I also need to drop a few pounds so the exercise is good. I have a sister reunion in June and we are doing some kayaking on the Colorado River below Hoover Dam. It should be fun but I need to get my arm strength back. Hope all of you on this journey have the best results. JoAnen

I got out of the hospital yesterday afternoon. They still don't have the answer as to what I am allergic too. They took me off Metoprolol and put me on Diliazem. I have been off the antibiotic that they thought might be causing the problem for 6 days. I am still getting the rash but managing it so far with Benydryl every 4-6 hours and Prednisone. I am working on getting into an allergist. Sounds like it may be a couple weeks to get in. Until we get it figured out I will be carrying an epi pen. The heart valve did good even with all the added pressure it was under. Thanks for all the support and prayers.

Went to ER Thursday evening for anaphylaxis. I was treated and released with steroids. By Friday noon my rash was coming back. By 2:00 pm my throat was starting to swell shut so back to ER. Went another round of steroids and Epinephrine. It cleared up rash. I saw my cardiologist and he thinks that I had an allergic reaction to antibiotics that I took after returning home. Since I had 2 episodes in less that 24 hours they admitted me. Got full body rash Friday evening so another round of epinephrine, steroids, antihistamines. About 4:45 am Saturday I broke out again. Another round of epinephrine at 5:30 am. It sure makes rash go away but it gives you the shakes really bad. I found out that walking halls helps. I can't wait to get this under control and back home.

Well the roller coaster ride continues. I had an appt. with my cardiologist and a device check for my pacemaker. She said that the leads to my pacemaker are scarring in good.She will make some adjustments to the setting on my next visit. She said it ought to be good for 12 years. I am staying in range with my INR. My cardiologist said that the valve was working well. My incisions looked good. He did tell me that I have 30-50% chance that I will need a different pacemaker because mine has 2 leads and he said all chambers of my heart are not in sync so may have to have a pacemaker with 3 leads. He has me scheduled for an echo in a month to check it out. I have been getting stronger but it seems slow to me. Two days ago I developed a rash. I took Benadryl and it helped. Last night after dinner and my night meds I broke out rally bad. It wasn't long and my lips started swelling and throat started closing. Dick took me to the ER and they treated me for anaphylaxis reaction. I don't have allergies except to one drug. I haven't changed anything except meds for the heart. I was wondering if anyone else has had allergies to Warfarin? I have to go to allergist and get it figured out. I notified my cardiologist and I am waiting to hear what he thinks it might be. I am definitely ready for some normalcy in my life again. Thanks for all the support and prayers to everyone going through this.

Well things are going pretty good. I am getting stronger and having less pain. I started on the treadmill since it is very icy outside. I hit my goal of 10,000 steps today. I hope to try and increase that each day. I can't get into cardiac rehab until mid March so I guess I will be doing it on my own. I am very excited for tomorrow because I will find out if I got any hunting permits that I put in for. That will determine how hard I need to push. Prayers to everyone on his journey.

Wow did that shower feel awesome. My INR is good and I will be heading home at 3 am. In 17 hours I should be home. I am so excited to get home and continue with my recovery. Big thanks to everyone for all the support.

The pacemaker is doing good but now the top part of my heart is going faster than it can keep up woth(A-fib). They said my potassium was high which might be part of the problem. They also started me on a beta blocker. I finally got my INR up to 2.0. I am flying home on Saturday. It is a long trip but will be so nice to get there!. I sure like being on this side because even though it is really tough you can see the improvement every day.

One step closer to going home. The procedure went ok. It was about 2 hours and they used conscious sedation. I can say I was not happy with it. They told me that I would feel pressure but not pain. When the Dr. told me he was making the incision I felt it. Not real painfully but but definatly freaked me out. I had to ask for more drugs at least 3 times because of being in pain during the procedure. So glad it's done. They will interrogate the pacemaker in the morning. If everything is good I am out of here😃. Best of luck to everyone on this journey. It sure is good to be on his side

My INR is good enough th to get my pacemaker today. They stopped my Heparin IV so it has to be off for a few hours then I will get it done. If all goes well I get out of the hospital tomorrow. That is awesome. Thanks again for all the prayers and support I am receiving.

Well my INR was 1.6 again this morning so they postponed the procedure for the pacemaker another day. It was very disappointing. Everything else is good. I am getting stronger and walking more each day. Took 6 walks yesterday for a total of 4000 steps. Should beat that easily today. Dick does most of my walks with me. He has been an angel. I got a kind of a shower today which definitely helped with my mood. So ready to head north. All the prayers and good thoughts are definitely helping my recovery. Best wishes to everyone else that is on this journey.

We talked to Dr Joyce's team and the heart team this morning. They are in agreement that mom will benefit from a permanent pacemaker. At this time it is scheduled to be put in tomorrow. This shouldn't restrict her life much other than she can not be an arc welder. They are putting it in a place that will not affect her shooting her rifle. She is a bit down about it, but it will be good as she will be able to get the other two pacemakers removed. After pacemaker she will be blue to start planning a discharge date. Keep her in your thoughts and prayers. I will be driving back to Wyoming today. Clinton or I will keep this updated as we know more or until mom is ready to take over. JoAnn

Mom asked me to update and let everyone know she has her chest tubes out. She was pretty excited about that. She just took a walk down the hall (this makes 4 walks today) and had a bit of dinner. She is not a fan of the liquid diet foods but we convinced them to give her some soft foods. We are waiting for that tray to be brought up. JoAnn

Today has been going good. She has been up and took two walks so far. Her heart rate is improving from yesterday, however a permanent pacemaker is a possibility as her upper and lower chambers are not communicating. It sounds like they should be taking chest tubes out this afternoon so that's a plus. Clinton headed back to Alaska today. JoAnn

We just talked to the doctors and they decided to put in a temporary-permeant pacemaker. This will allow her to move out of the ICU and have a more reliable system to help the heart. What they have now is finicky and has been know to fail becoming very dramatic fast especially with the weekend coming up. The procedure for the temporary-permeant pacemaker sounds pretty easy and quick. We do not have time when they will start it but will update when know more. Clinton

She is recovering well and were talking about taking her out of ICU today but when they checked her heart without the stimulators, this morning, she had a heart block. They are now talking about either keeping her in ICU to see if returns to normal or put a temporary-permeant pacemaker and move her to a recovery room to see if it comes out of it later. If she does not she will need a permeant pacemaker installed. She had the same thing last time and came out of it. Thank you everyone and will update when we know more! Clinton

I want to thank you for all you prayers and messages of support through out today. My mom is truly blessed to have so many amazing family and friends supporting her. JoAnn

She is out of surgery and doing well. She already has her breathing tube out and doing well. She is in some pain and a bit drowsy but she is doing awesome.

We just talked to the surgeon and said the replacement went well with no complications and minimal scaring. They are closing up now and will start to wake her up. Clinton

We were told the procedure should take about 6 hours (pre-op and surgery). She was taken back to pre-op about 7:30 a.m. and just got an updated saying surgery started about 9 a.m. Clinton

Well I made it through everything today. They said that everything was good with the angiogram. I talked with the surgeon and he said that I had to do mechanical valve because if I did another tissue valve it might calcify just as fast. It wasn't a long discussion since he said that I was familial with the procedure. I had to stay longer in recovery from angiogram because it started bleeding after they had me up and walking. Doing good now, I have to be at the hospital at 5:30 am in the morning. My son, Clinton, will be updating my journal while I am in surgery and ICU. JoAnn, my daughter and her husband came in from Wyoming today. She will be taking care of texts and phone calls. Thanks for all the prayers and good wishes. I am so ready to be on the other side.

Well I have the appointment with my surgeon at 8 am and then angiogram at 9:15. Then I have another consultation and a preoperative class in the afternoon. They are going to keep me busy tomorrow. Wishing the best of luck to everyone who is going through this.

Made it to Rochester. I start tests and consultations on Tuesday. Angiogram on Wednesday. Heart valve surgery is scheduled for the 4th. Hoping all the tests go well. Looking forward to being on the other side again.

Since my visit at the Mayo Clinic in December my symptoms have gotten much worse. I had to quit working and I have surgery scheduled for February 4th. I still can't believe that I have to have this done so soon. I will probably end up having to do mechanical valve this time. I guess if that is what it takes so it will last longer that is what I will do. Has anyone else had their tissue valve replaced that soon? Will update as I can. JoAnen

I went in for a check up with the Mayo clinic where I had my AVR done. I was there mainly to get a check up on 2 total knee replacements but figured I would get the cardiologist to check me out. I was shocked at the news I received. They said that I have bioprosthetic valve calcific degeneration. At this time I am not having symptoms of aortic stenosis so they said they would see me in a year unless I start showing symptoms. I was told that the valve should be good for 12-15 years when I had my surgery. Has anyone else had this problem after having a AVR? They said it was nothing that I did that some valves just start degeneration early. Can't say that I am looking forward to another surgery in the near future. Merry Christmas to everyone!