Jacqueline's Guestbook

Jacqueline Cook  Hi Lise. My recovery process was about 7 months due to the pericarditis. As noted in one of my posts, I landed at UPMC in Pittsburgh where I was cared for by Dr Cavalcante. He treated my case of pericarditis very aggressively with a regime of high dose ibuprofen and colchicine. This went on for several months with frequent blood tests and periodic cardiac MRIs. I thought I would never get better...but I finally did!

So, it is interesting that you reached out to me at this time. I have been experiencing SOB for the past couple of weeks. I had my blood drawn last week to check my inflammatory markers and am waiting on results. Next will be an echo. Sigh... I have not experienced any pain like before so I (of course) am nervous. I am not sure if it is a reoccurrence of pericarditis or something with my valve. And so I wait...sorry.... I wish I did have some secrets to share!

I too wonder about robotic surgery and if there are more cases of pericarditis following this particular procedure. I’ve not seen any studies...but there may be some out there. I too still have nerve damage in my right breast. ...numbness...occasional twinge of pain ...but for the most part, I’ve gotten used to this a my new normal.

Please keep me posted and I will do the same...

Grace and peace, Jacqueline

Lise Bowles  Thank you Jacqueline for responding so quickly. It’s so nice to speak with someone who understands this frustration! You know the entire reason I schlepped all the way to Cleveland from Florida was because of the reading I did regarding robotic and how much quicker the healing is etc. I cannot tell you how many times in retrospect I wish I had just had a mini sternotomy. As I was recovering I noticed that the people who had that surgery around the same time I did were not experiencing the pain and complications I was. I can’t sleep on my left side anymore because my right arm goes to sleep! Nerve damage under my right breast, going all along the rib there from the middle of my chest to my Right side. Ugh! Btw, what is SOB ? I will keep you posted as to what the cardiologist says tomorrow,
Lise

Lise Bowles  Hi Jacqueline, I am wondering if you ever got your problem sorted out regarding the SOB, (Im still not sure what that is). The cardio doc I saw in CC in Palm Beach told me to stay on the anti inflammatories and colchicine for 2 weeks. I did and the pain subsided. Unfortunately it has returned again. Its never been like the initial pain which was excruciating but it certainly in concerning. I am doing maintenance medical things this week, but as soon as this is over I plan on zeroing in on the cause. I don't know what this is coming from. I was reading a few posts yesterday from people who were quoting studies regarding robotic and they were not good as far as follow up problems! Darn, all I saw before my surgery was positive and glowing reports about recovery time, etc. etc. Please update me when you can.

Jacqueline Cook  Hi Janet. No problem with the questions. I certainly had many prior to my surgery and this community was a great help to me!

ICU: As far as waking up in the ICU...I have very little recollection of the dreaded "tube"....I do remember trying to swallow and feeling it there but I think that was actually when they came to remove it. It was out before my husband was allowed to come back and see me. My throat was sore for a day or so. What I remember most about ICU was being really, really thirsty and nauseated. They would only give me ice chips because water could make my nausea worse. I had a great night nurse who gave me a spoonful of ice chips I think about every hour or he would moisten my mouth with a sponge. My time in ICU was pretty brief. I got there sometime during the afternoon of November 11 and was moved to the step-down unit by noon the November 12.

Gown: I wore the CC gown the entire time I was in the hospital. They brought me trousers so that my backside was not exposed when I got up to move around. I had a couple pair of boxer shorts with me just in case they didn't have something I could wear but I never ended up using them. I brought a pair of pjs, a warm robe, and slippers for my discharge.

Shower: I did not shower until the day prior to my discharge. I had way too many tubes attached. They had to leave my chest tube in longer because my lung did not fully inflate after the surgery. I did bring along some "dry shampoo" and that did help freshen up my hair a bit. In hindsight, I should have asked them to bring me some hot wash clothes so my husband could help me get a sponge bath....oh, well...Nevertheless, after my tubes were finally removed they put a seat in my shower so I could sit instead of stand...my husband helped me wash my hair. The following day...I showered and washed my hair by myself....sitting on the chair and using my left hand. This part is a process....once I was discharged, we stayed in the hotel for a couple of days...and then went for a post-op check-up prior to traveling home. I found that showering by myself was not a big issue. I just used my left hand in the beginning and then found if I bent over at the waist I could wash my hair with both hands.

Pull-over Tops / Bras: I purchased several tank tops prior to surgery that have built in shelf bras. I was able to step into the top...pull it over my hips and then slide my arms in and pull it up the rest of the way. My husband had to help me for a few days until I got the hang of it. The right side of my chest was really, really, sore (it makes sense that it would be because they go through your chest muscle with the instruments.) l tried to avoid lifting my right arm as much a possible the first few weeks. I did manage to learn how to maneuver pull over tops over my head by putting my right arm through the arm hole and then gently pulling it up so I could pull the rest of the top over my head (don't worry....you will figure ways to avoid any pain quickly). As far as a bra goes...I bought a couple of sports bras that I could step into like the tank tops. I made sure they were larger than what I typically wear and were wide on the sides so that the seams would not rub my side incision. I am still wearing those sports bras and tank tops because they are much more comfortable than anything else and I am just over 8 weeks post-op. I think I was at 4-5 weeks before I started lifting both arms over my head to pull shirts on. On a side note... my right breast is still numb. I am not sure how long it will take before it returns to normal?

Well....I hope I covered everything thus far. Every patient is different and every hospital is different...but this was my experience at Cleveland Clinic and my experience with robotic surgery and recovery....please feel free to contact me at jrcook3301@gmail.com with more questions. Also, I am free to chat by phone most workdays if you would prefer. Just let me know by email and we can arrange a day and time. More than happy to help in any way I can.

Many blessings to you as you prepare for your upcoming surgery!

Denise Campbell  Hi Jacqueline. My name is Denise. My surgery is March 15. I have sever mitral stenosis and regurgitation. Mine will be. Mechanical valve and open heart. Thanks for the helpful info. I'm thinking. I will be going brakes for a while. I bought a bunch of button up shirts and pajamas. I hope I too go thru ICU to step down as quick as you.

Jacqueline Cook  Hi Michele. So sorry I've neglected my guestbook. You can contact me at jrcook3301@gmail.com with your questions. I am also available to chat by phone most weekdays. I am more than happy to give you my phone number when you shoot me an email. Also, I just want to note that Dr. Gillinov was supposed to do my surgery on December 17. When the date was moved up Dr. Suri was my primary surgeon and Dr. Gillinov assisted him (I had robotic surgery). I met Dr. Gillinov just prior to the surgery starting in the OR. His team followed my the rest of my time at CC because Dr. Suri flew back to CC Abu Dhabi two days after my surgery. More than happy to help in any way I can. I had a really great experience at CC.

Jacqueline Cook  Thanks for the encouraging words, Shirley! I really appreciate it. Saw my cardiologist yesterday and he decreased my beta blocker from 75mg to 50 mg. I am on other meds now though because I have been diagnosed with pericarditis. Recovery is certainly a process...I'm hanging in there.

Jacqueline Cook  Hi Cheryl. Thanks so much for the note! Sorry for my lag in response. I pray you are well. Blessings to you on your surgery and recovery.

Cheryl Smith  Jac. I'll give you a day to day timeline when home and feel a little better. They do something to you 24/7 in the hospital.

Jacqueline Cook  HI Dan! I am so sorry that I am just getting your note. How cool that we were on the CC unit at the same time! Blessings to you as you continue to recover!

Angela Hicks  Jacqueline thank you and you have given me a new perspective on my surgery and recovery. I am so blessed to have met so many wonderful and caring people. Happy Thanksgiving.

Jacqueline Cook  Thanks so much, Enrique! I am here waiting to have my consult with my surgeon. Tomorrow's the day! Looking forward to chatting with you on the other side!

Jacqueline Cook  Thanks for the note, Liz! I really appreciate it. Glad to hear that you are doing so well. :o) Looking forward to getting on that same road to recovery!

Jacqueline Cook  Hi Margie. I guess I will have to see if the hospital has something for me...a couple of other ladies have mentioned this as well. I did go ahead and pick up a couple of front clasp wireless bras and tanks with built in shelf bras. Guess I'll soon find out what it most comfortable for me. Thanks for the note and well wishes!

Jacqueline Cook  Hi Christine. Yes. This is a great article. I printed it out several weeks ago and have incorporated many of the suggestions into my preparations. I too have found it to be really helpful. I sent the same link (I think to Kimberly) last week. Thanks so much for reaching out! It really means a lot! :o)

Jacqueline Cook  Hi Kimberly....sorry for the lag in response. I know I don't have to tell you how busy things are as the countdown continues....I would love to connect and compare notes. I will send you an email so you have my contact information as well. thanks for the note!

Jacqueline Cook  Hi Michael. Thanks so much for the quick response. My email address is jrcook3301@me.com. Right now I have narrowed my search down to three. I am open to suggestions though. It seems I may be a good candidate for a minimally invasive approach; however, I have yet to do a heart cath so we'll see. Look forward to chatting with you.

Jacqueline Cook  Hi again Autumn. Sounds like you are in good hands and have confidence in the care you are receiving. I will keep you in my prayers. Where do you live in Ohio? I was born in Youngstown and still have family in Kent. My husband is from Pittsburgh. Carlisle is about 3 hours east of there. We are considerably closer to Philly.

Autumn Griffin  That is what I thought. I live in Canton, Ohio. Where the Football Hall of Fame is, which doesn't matter much if you don't like football, laugh out loud. I hoPe my cardiologist is good. We will see. I have faith in my family doctor for sure!

Jacqueline Cook  As you mentioned in another post, you are going to spend a great deal of time with your cardiologist so it is important that you have a good one...one that you can put your trust in. It sounds like you have had a good long relationship with your PCP. Did he (or she) refer you to this cardiologist? I have a new PCP here that referred me to the group, but she did say, "if you don't like them, we'll try somewhere else." As I mentioned in a post last week, I didn't feel comfortable with the first cardiologist. I felt like he wasn't taking my symptoms seriously. But I had a completely different experience with the cardiologist that did my TEE. Sending warm thoughts and prayers to you, Autumn as you enter into this process.

Autumn Griffin  Thank you. Yes my PCP did recommend this cardiologist. My sister also worked for this group of cardiologists and she recommended him as well. My concern is if I should just spend the extra and go to the Cleveland Clinic. Especially, since I have heard so many good things on here about them and they are in my own backyard. I go there now for my psoriatic arthritis because honestly there is only on group of rheumatologists in my area and they kind of suck. That being said I am already causing increased financial strife by going there for that. I just thought if this could be taken care of in network maybe I should just stay here. Plus if I don't need surgery there isn't any point in going out of network. I am just very confused right now. Thanks to everyone for their help.

Jacqueline Cook  Hi again Autumn. I empathize with you as it certainly can be a very confusing process--overwhelming at times for sure! The insurance thing is an important component of it all. If we were still in Seattle, my options for surgery would have been limited. Yet, an in-network cardiologist followed me for over a year while we were there. After we got settled here, I spent a great deal of time speaking with my insurance representative prior to looking at hospitals so that I could find the ones, within a reasonable travel distance, that have surgeons that specialize in the procedure that I need. Cleveland Clinic is in my network but I am still looking at UPMC in Pittsburgh, as well as Pinnacle Cardiovascular Institute which is located practically in my back yard. At this point I am trying to keep an open mind. I am looking for a surgeon who has performed tons of mitral valve repairs with outstanding outcomes. Your cardiologist should be able to help you with options if you find out that you do need surgery soon. Not sure if sharing this is helpful, but perhaps there are several options available to you as well within your insurance network?

Autumn Griffin  Yes. Thank you. I appreciate you sharing your thoughts and past experiences with me. It helps me to know I have other options. My family has been at UPMC many times. i believe it is a very good hospital.

Jacqueline Cook  Hi Rosemary! Nice to meet you. I haven't looked at Hershey Medical Center. So far I am going to interview surgeons at Cleveland Clinic, UPMC (Pittsburgh), and Harrisburg (Pinnacle Cardiovascular Institute). Harrisburg, of course is closest to me; however, my husband is originally from Pittsburgh so we have family there and I also have family in Ohio. Have you heard anything about Harrisburg and a Dr. Mumtaz?

Rosemary Resler  No haven't heard anything about that doctor. I'm having mine up in Hartford CT, I was lucky enough to be referred to the head of the cardiology department, he came very highly recommended by several of my docs. I've heard great things about Cleveland Clinic. I don't really have too much time to do much research, so having the docs do it for me was a relief. I want to make sure this is done while I have insurance, I've heard so many horror stories about insurance coverage, I have Aetna, they aren't the best but will cover most of the costs.

Jacqueline Cook  Has your surgery been scheduled or are you in that process now? My cardiologist says that this Dr. Mumtaz is exceptional. He is the chief of cardiothoracic surgery at PinnacleHealth. He used to work at the Cleveland Clinic. I am in between jobs right now so the timing is good for me to have surgery. My husband is military so I am covered by his insurance. Sometimes that can be very limiting though because I must go to network providers in order to receive the benefits. Fortunately, the three hospitals I am looking at are within the network....but this is also the reason I narrowed it down to these three. I too have heard about Insurance nightmares! I pray that all goes well for you! What kind of time line are you looking at?

Rosemary Resler  Yes I'm already scheduled for 9/8/15 at Hartford Hospital. I've already had the cath, TEE, will be getting my CAT scan and preadmission testing next week. In between all that I have to have oral surgery. With my luck a crown came out and now I have a broken root, so that must come out before surgery. I was originally going to get a tooth implant but that is on hold now until after my AVR recovery. I've heard of PinnacleHealth and believe they are really good. I used to work for Healthnet, so I know how the healthcare system works (or doesn't work!). I was constantly sending redeterminations to claims to get them to pay clients claims. I'm happy to hear you have good insurance, no one needs those worries at a time like this.

Jacqueline Cook  Hi again Rosemary. I certainly identify with your dental issues. I too will have to have some work done prior to scheduling my surgery. I had an implant done shortly after I was diagnosed. That was a long process. The crown was placed just before we moved here. I have postponed my dentist appointment until the 16th of September because I am waiting for my insurance to roll over...lol...go figure...right? I am so thankful to be connected to people like you who are on the same journey. It sure makes a big difference to know you are not alone in this! Blessings to you my new heart sister as you prepare for your surgery! You are in my thoughts and prayers!

Bill Hendrickson  Hi Jacqueline. Just a quick note about CC. I go to Hershey for most care but I chose a cardiologist at CC and then He helped with selecting a CC surgeon. I feel excellent without any limitations or adverse side effects. I can still bike about 20 miles without fatigue. I wish you well on your journey, keep good thoughts about your future. Regards Bill

Jacqueline Cook  Hi Bill. I just spent a little time reading your journal to catch up on your journey. And so I take it you live in Hershey? I am curious how you decided on CC? Did you interview any other surgeons at other hospitals prior to making the decision? Which doctor did your surgery there? P.S. I too find Romans 8 comforting as I move through this process. :-)