Jim's Journal

Hello fellow Heart Valve Brothers and Sisters. I was wondering if anyone else that had minimally invasive Mitral Valve surgery has had recurrent issues with pleurisy? Since January, every month, I've gotten at least one bout of pleurisy that gets somewhat better, and then comes back. Usually worse than before. I've been on Prednisone each time in January, February, and in March the pleurisy was back on the 17th (Happy St. Pleurisy Day?!!). I went back on Prednisone the 19th-24th. It got better but I can't say it went away. In the early am of Mar. 27th I had the worst case of it I've had and it woke me up. So, Mar. 28th back on Prednisone thru April 2nd. On March 29th I went to see my cardiologist again, and he put me on Colchicine. He said it's usually prescribed for gout, but has been helpful in some patients to get rid of pleurisy. Here it is, April 6th and it's slowly getting worse again. I'm scheduled for another echo on April 17th. Has anyone other Mitral Valve patients experienced this? If so, what did it take for you to be rid of it once and for all? Thanks for any input.

Jason, Jon, and Jimene, Good luck to you all on Feb. 4th. I'm sure the Heart Valve Surgery brothers and sisters will be praying for you all. I know I will. Best of health to you all.

Is anyone else having this same issue? When I see a post for me indicated by the news heart being red, I open some of the posts only to find that they are posts for someone else?

Thanks Bob, Jim, Tammy and Eleanor for the well wishes and prayers. I finally felt like the leg soreness had reduced enough to start Cardiac Physical Therapy so I went for the first time on Wed., Jan. 21st. All went well, the staff are very nice and really keep good tabs on how you are doing. Early Thursday morning, I woke-up with a soreness near my heart and it hurt when ever I took a breath. It kept waking me up and wouldn't have gotten much sleep if I hadn't been so tired and went to bed at 9pm. To make matters worse, I was also suffering from a sore back (I must have slept wrong one night or something) and soreness at the base of my neck. I was feeling lots of aches and pains. I knew it wasn't an emergency as there were no other tell tale symptoms. I called my cardiologist later that morning and was lucky to get an appointment later that day. He said it was pleurisy in the lining of my heart and prescribed Prednizone. The way I felt Thursday night, I was doubtful that I could attend Physical therapy the next afternoon. Luckily, the Prednizone kicked in fast and the pain pill I took ensured I could sleep so I was happy that I felt good enough to go to therapy after all. I recently got a call from the neurologists office and they got me transferred to the neurologist my Heart Surgeon had referred me to and set-up an EMG and Conductive Nerve Study early in February. I had seen the neurologist on call when I was in the hospital for what they thought might have been a TIA but wasn't. Very shortly after he came in, I realized that there would be a personality clash with him and I just didn't want to see him again. Hopefully the tests will give some answers as to the numbness in the left hand, a small section of the left butt cheek, and left foot; and the double-vision two times, and three more times where I felt it coming on, but it stopped. My Ophthalmologist didn't find anything conclusive but he did send some notes and recommended some nerves to check to the neurologist, so that was good. As for the rash, it's still there, still itching and is still slowly spreading. It's predominantly on my arms and showing up more on my legs. I got a referral to see a Dermatologist and took the earliest appointment they had - which is March 11th! I don't know why it takes so long to see a dermatologist in town. One of the nurses a Cardiac Physical Therapy recommended some other creams to try. I'm hoping the stuff I got will do the trick. The Benadryl cream and Anti-itch cream weren't getting the job done. The one issue after another has been very frustrating, but I know things could be A LOT WORSE. So, I'm chugging along. I just hope I don't get tired of the commitment of having to go to and do physical therapy three times a week for three months. At the moment, I do want to continue in hopes that it will make a difference in how I feel. Thanks again to all my wonderful heart sisters and brothers for the well wishes and prayers.

Well, I'm in week 7 post-op and still having some nagging issues - but nothing serious (I think!). I can't believe how long the pain in my right leg has lasted since the surgery to repair the right recurrent Femoral Seroma. It has kept me from starting Cardiac Physical Rehabilitation and I'm getting a little frustrated with it. Since taking the Oxycodone, I've been having red patches and one or two red welts mostly on both arms with a few on my chest and back that itch like crazy. I've been off of the 'Oxy' since about Jan. 5th and have been using Benadryl cream (which helps some but itching quickly returns) and the patches continue to itch and are slowly spreading to other parts of my body. Has anyone else experienced this with Oxycodone? The prescription drug information mentions in the possible side effects that Stevens-Johnson Syndrome/toxic epidermal necrolysis can occur. Is anyone familiar with that? I told my surgeon about the red patches and he is referring me to a Dermatologist. And I'm still waiting for the neurologist to set-up the EMG and Nerve Conduction Study to sort out the numbness in my left hand and foot and maybe? the cause of the double vision I had. Other than that the recovery continues pretty well. I hope that the recovery continues well for all my post-op heart brothers and sisters and prayers and best wishes for success for those with upcoming surgeries.

The surgery went well I guess. I didn't get to see my Surgeon or the Nurse Practitioner as they were in surgery when I came out of recovery. The only thing I know about it was one of the nurses said that they had removed a seroma that had calcified. The good news is they let me go home the same day - I had been told that I would spend one night. The bad news is , I have significant pain in my right leg - more than I did from my heart surgery. So, this time I had to fill the prescription for Oxycodone this time. I'm doing alright otherwise. I've signed up for Cardiac Physical Therapy but I'll have to wait a week or so or until my Surgeon gives me the gren light.

So far, I'm number 1 in line for surgery on Dec. 26th with my heart surgeon. He's going to do repair the recurrent right femoral seroma. This means I'll be back at the hospital at 5am again. Hopefully, this will be my last visit to the hospital for a lo-o-o-ong time! I went to the cardiologist (actually saw a Nurse Practitoner) and they did some basic tests for my continuing symptoms. I still have numbness in my left fingers and hand, left foot, and some numbness in part of my left butt cheek. When I saw a Neurologist during my last hospital visit, he said the hand/fingers numbness was "most likely Carpal Tunnel Syndrome." But that doesn't explain the other numbness I have. And, I've had 3 episodes of double vision in my right eye. The first time was the pretty severe, and lasted about 1-1/2 minutes. The last two times were less severe and a bit shorter (about 1 minute or so). The Neurologist said that this issue must be an ocular problem so I go to see my Opthamologist Dec. 30th. With the symptoms coming on shortly after surgery I can't help but think that maybe a nerve was struck when they put in the catheters in my left leg (checks the pressure of the heart I think?). Has anyone else had this combination of symptoms (or similar) post op? My Neurologist's office will call me to schedule an EMG to try and see what's going on. I've got my doubts that my Opthomologist will be able to answer why I've had the double vision. I imagine it to be like that annoying squeek in your car that won't happen when the mechanic has it! All the mechanic can say is, gee, I don't know what's wrong!! I work at a photo lab and during the holidays it gets totally crazy with large volumes of various photo orders and photo gift orders. I've worked every Thanksgiving and Christmas for the 12-1/2 years I've worked there (I'm the manager of the lab and feel an obligation to be there). So, usually the holidays go by like a blur and I don't have the time to 'stop and smell the roses' - what, it was Christmas?!! So, it's going to be different not working on Christmas day. That being said, let me take this opportunity to wish everyone in the Heart Valve Surgery community a Very Merry Christmas and a Happy and Healthy New Year.

Well, my third visit to the hospital got postponed due to my surgeon's schedule having two new emergency heart surgeries to perform. So, the new date for my 'right femoral exploration is early the morning of Dec. 26th. I just hope that the third visit to the hospital in about one month is the charm!

I thought I would post a hopefully helpful tip for someone else. For those of you that have sleep apnea (as I do), when I was in the ICU they had me there for 2-1/2 days with the breathing tube in my throat the whole time. They would periodically check my Blood Gas Levels (which I believe corolates to your oxygen intake and carbon dioxide out put) and I kept failing. This meant that they couldn't remove the breathing tube. At one point they could see I was very uncomfortable and getting frustrated so they gave me a fairly large dose of morphine and I was out for quite a while - at least sleeping and unaware of anything. When I came out of the fog, they tried retesting my Blood Gas Levels. When I got my wits about me better, I motioned to them that I needed something to write with so I could communicate with the nurses. I reminded them that I have sleep apnea and that when my sleep study was done, the doctor said that I should avoid sleeping on my back as my sleep disturbances increased and my oxygen level decreased while on my back. I requested that they turn me on my side, which they did. Not too long after that they retested my Blood Gas Levels and I passed. Out came the dreaded tube! So, anyone with Heart Valve Disease and Sleep Apnea, don't forget to remind the surgeon, nurses and staff that you have Sleep Apnea. If you have an issue like I did, it might shorten the length of time the breathing tube is down your throat.

I've been having some 'bumps in the road' lately - numbness in my left hand, a brief but pretty severe moment of double vision in my right eye, and recurrent swelling from lymphatic fluid at the incision site in my right groin (where the tubes for the heart-lung machine were inserted) so to play it safe, my heart valve surgeon had me readmitted to the hospital. They did an MRI of my brain, ran a good bit of blood work, did an echo cardiogram, and were having a Neurologist see me. Luckily, the MRI came back as negative (meaning no stroke), the 'echo' showed what they thought might have been some inflammation in the heart and possible minor plaque on my repaired Mitral Valve. Luckily all that came back as okay. The Neurologist said that the numbness in the left hand was most likely Carpal Tunnel Syndrome and would schedule a follow-up appointment and run a test to confirm that; the issue with the right eye was an ocular problem and I have an appointment with my Ophthalmologist to see what caused it. Since this is the third time the lymphatic fluid has caused swelling in my right groin, I'm in the process of being scheduled for a third visit to the hospital on Tuesday, Dec. 16th. My Surgeon's Surgery coordinator said that they would reopen the incision and do some re-suturing to stop the fluid build-up and keep me over night. I'm glad most of the tests came back negative (which is a good thing) but am getting so sick of doctor's appointments and return visits to and in the hospital! Things sure could be worse, but I'm over it now!!

Nov. 30th I got the good news that I should be going home Dec. 1st. Dec. 1st brought great news - one that I was going home today, and as soon as my surgeon walked into my hospital room, he said that they had started me on Coumadin while he was away and that I don't need to be on it (I guess the surgeon covering for my surgeon put me on it). He was stopping it immediately. Yeah! No more frequent blood work! I was told that the pneumothorax wasn't getting any larger and that it would be absorbed by my body. I had one more issue that could have kept me in the hospital a little longer. There was quite a bit of swelling above and below the incision in my groin used to put in the tubes for the heart and lung machine. They did a CT scan on Nov. 30th which revealed that it was most likely fluids from lymph nodes in my leg. They used a syringe to drain the swelling and it confirmed that it was fluid from lymph nodes. About 12:45pm I was discharged from the hospital. Home bound at last. My surgeon, his Nurse Practitioner and my family all say that I look great. They already have me set up for an orientation session with the Cardiac Rehabilitation Center at my hospital on Dec. 22nd. In the meantime, I plan on taking easy walks and napping a good bit because my body is demanding it!

Here it is, day 5 Post Surgery. I'm still in the hospital because I have a Pneumothorax they are monitering (today is the first day I've heard anything about it), and my surgeon wanted me on Coumadin for about 4-6 weeks and they are doing daily blood tests to make sure the INR level is where it needs to be before they will let me go home. And I'm still having the daily chest XRays to moniter the Pneumothorax. But, I'm slowly making progress, and napping a lot more than I ever thought I would. Some days I eat a pretty good amount and some next to nothing. Today I decided it was time to get away from the third floor walks and went on an excursion on the first floor of the hospital. The outdoor views and sunshine were tempting me but I was afraid I might not return to my room if I gave in! But freedom shouldn't be too many days away. Thanks again for all the kind words, well wishes and support. Good luck to my fellow post-op friends and those about to be pre-op.

First of all, I want to express my heart felt thanks to all of your kind words, prayers, and advice. This site and all of you truly mean a lot. So, while it may not cover it completely, all I can say is Thank You and God Bless you all. I hope those of you able to be home had a blessed and wonderful Thanksgiving. And for those of you not able to be home, Go Get'em Next Year!! Well, here it is day 3 post op and I'm still in Memorial Health Hospital. The surgery went well, and the surgeon was able to repair my severly leaking Mitral Valve. The roughest part of it all so far was them not being able to get my Blood Gas levels where they should be. So, this meant I spent 2 days in ICU with the breathing tube down my sore, and very thirsty throat until about 1 am on Wed. November 26th. I was finally able to breathe strong enough on my own, no more terrible tube, and ice that felt like it came from heaven to my throat. On Wednesday they removed the catheters from my neck and several other lines that escape my memory at the moment. I also took a very short and slow walk in the hall today. I felt a little wobbily but not too bad. This was also the first day I felt like eating any solid food. Thursday, Nov. 27th - slowly getting better every day and today I got to lose my little astronaut looking white box with the drain tubes for my heart! I was fortunate enough to have a fairly decent lunch (considering it was hosptial food) of turkey, dressing, gravy, green beans and some fresh fruit. Much to my surprise I finished about 75% of it and was too full for dinner when it came at 5pm. Feeling a little stronger every day!

Today was Post-Op test day. I've never had that much blood drawn before - I hope they left me some! After reading more of Adam's wonderful book, I made my decision about my surgeon's question: if the Mitral Valve can't be repaired, mechanical or tissue valve? Definitely a tissue valve. I can't deal with the clicking, the increased risk of blood clots, and I refuse to add another long term drug (Coumadin) to the list I'm already taking. And, it's 3 days to go to surgery and I can feel the stress and worry (not so much the surgery, but all the stuff that follows) spiking already. I'm ready to wake up now from this bad dream!!!

I met with my surgeon for the first time today. He comes highly recommended and he seems to be very thorough and I like him I feel that I'm in good hands. But, because of the nature of the surgery, the fact that he does them early, early in the morning and his schedule, they couldn't schedule me for Nov. 19th. The new date is now Nov. 24th. So, that means No Turkey for This Turkey!!! I just hope that I can avoid getting a cold from a customer or employee ( I work in a Pharmacy Photo Lab) and have that delay surgery even more. Here's hoping the Airborne, Zinc and multivitamins don't fail me now.

I got back home from my cardiac catheterization tonight about 8pm. It was a rather long 8 hour visit at the hospital. Thank goodness there were no other problems found other than a severely leaking Mitral Valve (my Dr. said on a scale of 1-4 it's a 4). His last words to me as he left my room were we really, really need to get that valve fixed. Before I was released from the hospital, I received a call from my surgeon's office. They had already set up an appointment to see him for the first time on Monday, Nov. 17th. The nurse said that she was working on juggling the doctor's schedule to try and get me scheduled for surgery Wednesday morning, Nov. 19th. Wow, I never expected it to all happen so fast. I dread what's coming but I also want to get it over with and as some of you have put it - 'in my rear-view mirror'.

I have a Mitral Valve Prolapse with Severe Regurgitation. I also have Common Variable Immunodeficiency Disease and self infuse subcutaneously once a week. I am scheduled for a cardiac catheterization on 11/14 and will schedule my surgery to repair my Mitral Valve after the procedure. Has anyone else had heart surgery that also has CVID? Did the CVID or infusions cause any concerns or problems with either a catheterization or heart surgery? Any tips or advice would be very much appreciated.