Robyn Tatu - Heart Valve Journal

Robyn Tatuposted a journal

2846 days ago

Kathleen F., Matthew Russo, Barbara Wood and reacted to this

2 Years Ago Yesterday - 2 years ago yesterday I went in to replace a bum heart valve and met with quite an adventure. 3 hours after a very successful ...Read more

2 Years Ago Yesterday - 2 years ago yesterday I went in to replace a bum heart valve and met with quite an adventure. 3 hours after a very successful surgery, my heart rolled over and put kink my coronary artery. A very rare and completely unavoidable accident. Don't let that scare you - while you need to make sure you take care of things, the odds of something like that happening are truly a billion to 1. On April 7th they gave me 50% chance to survive and were putting me on ECMO. 4 months later I was home. I'm doing fabulously and the journey back to everyday-mostly-normal has been uneventful in the health department. I take a single baby aspirin before bed and that's it for medicine. I like to live while sitting. Getting me up and moving around is a challenge - but then - I hear my heart beat when things are quiet and it reminds me I need to lose some weight. My husband, David is thinking of writing a book about our adventures - could never compete with beloved Adam Pick, but his story is informative and has been really helpful for me while I advocate for my father who had a stroke recently. I wake up feeling good and so very thankful every day (no bs here, every single morning), with my champion, David, by my side. Thanks again to him for keeping up with me, my journal and reaching out to you guys for support. I am convinced your thoughts and prayers brought me back home. 106 Days of Hospital Life. Retrospective highlights. Re-learning to sit up. Re-learning roll over. Re-learning to stand. Re-learning to walk. Constant companions: Ice Chips,Spoon & Yonker. Spectacular hallucinations Heparin shots in the belly Delcolax: Wow, that was fast! Ever changing Nursing staff Explaining history of events over and over and over. Sponge baths: brrrrr Tape glue everywhere Vicky the wound care nurse: The BEST! Ticket to Ride on Steam. How can you ruin scrambled eggs? Joining Facebook. puuhleeese shut off that alarm! Day 86: First shower Day 106: Home. The journey back to 'normal' began.

Clare Auten Wow. Robin I remember your journey so well and prayed for you everyday. So glad life is mostly normal ... Read more

Rhonda Rawles Wow, I do remember your story very well. Both you and I had very non traditional recoveries and exte ... Read more

Barbara Wood That was an adventure! So good to hear that you are doing well!

Pat Bluemel I remember reading the updates from David back when, what an experience, so glad to read your update! ... Read more

Catie B My word, what an ordeal! Good to read your update and know that things are better.

Barbara Laurie Hi Robyn, I'm sorry I missed your story Heart sister!
What an ordeal! My husband Dave and I marvel, ... Read more

Robyn Tatuposted a journal

3395 days ago

Jason Lathrop, Kimberly Biddick, Susan Wozniak and reacted to this

Today will be the 6th month anniversary of my heart valve surgery. Here is an update: One of my physical therapy goals is to walk on a treadmill so I ...Read more

Today will be the 6th month anniversary of my heart valve surgery. Here is an update: One of my physical therapy goals is to walk on a treadmill so I can eventually go to and complete Cardio rehab. I started walking on the treadmill at physical therapy last week! I do PT 3 days a week in the morning. My stamina and endurance are pretty low. Cardio Rehab will improve this! I'm walking on a quad-cane - which is slow but steady. MRI (For the eyes) revealed no continuing vision loss, but is not expected to improve. They think that loss of blood flow to the brain was the cause. My kidneys are functioning at 27%. While this may seem horrible, it WAS just 12% (just above dialysis) when I was discharged on the 21st of July. The kidney Dr feels this will be the peak of improvement. We are hoping some non-Western medicine may give me back some percentage points. My right foot is wearing an AFO brace for the drop-foot and I still don't have any feeling in the foot except for nerve pain, which sucks. Also still numb in the left thigh. The Dr who did the nerve conduction study feels that the thigh numbness is permanent and guesses it was caused by the severing of that nerve during surgery. The drop-foot (right foot) is also likely a permanent feature (No nerves to enervate the muscle), but said to give it a year. Again, we hope non-Western medicine can improve this. Gene Krantz: What have we got on the spacecraft that's good? Sy Liebergot: errrm... I'll get back to you Gene..... No more wounds! All healed finally. I'm back to work full time (Since August 24th). Save for lots of on-going Dr. appointments which are finally tapering off. I'm learning to drive by way of hand controls. I tried left-footed driving, but the left leg is still too weak to brake fast enough and the right leg is a wash out. While driving around with hand controls is a mind blow - my Occupational therapist seems to have a lot of confidence in me, explaining that I know how to drive, I just have to teach my brain to handle these controls. I panicked twice during the test drive and tried to punch the brake like I would normally, but was able to stop the car correctly with the braking hand control before it was too late. We get those installed in my car on the 14th. Extremely liberating!! And David won't have to haul me everywhere. I don't seem to have any cognitive damage. Which is miraculous. I still don't know - what I don't know - and while I don't remember anything from April 6th to May 20th- that is just as well, frankly. With a few exceptions that whole 7 weeks is gone. It's not gone for David; however.... I think he may have some on-going stress from the event. It's understandable - sudden, unexpected horrible events over and over......and now there are many demands on him and he's still got his hands full. But he's getting help. He expressed concern about *my* having PTSD. When I was laying helpless in my hospital bed I thought often about what disasters would leave me to rot there. But that's just from living in California for 20 years and being so earthquake aware. I go through periods of being sad or angry, but mostly - I'm A-OK - looking to press forward. I have come a long way since April the 7th and even farther since July the 21st. I understand this was better posted as the events unfolded. I will do better. Thanks again for your prayers and good thoughts.

Robyn Tatuposted a journal

3489 days ago

Kelly Weisgarber, Susan Wozniak, Nancy D and reacted to this

Robyn asked me to copy today's Facebook post: 7/4/15 Saturday Tomorrow will be day #90 since Robyn had her surgery and day 7 since transferring to the inpatient ...Read more

Robyn asked me to copy today's Facebook post: 7/4/15 Saturday Tomorrow will be day #90 since Robyn had her surgery and day 7 since transferring to the inpatient rehab unit. What a journey it has been. I don't know if "thriving" is a term used for people in hospitals, but Robyn is doing very well in this, her last, hospital location. Robyn has a schedule each day. This alone makes such a difference. Instead of laying in a bed waiting to see who may come in, she sets her alarm, and knows what is going to happen and when. She does 3 or more hours of therapy each day. Part of her therapy is getting dressed, transferring to and from the wheel chair, eating in the group cafeteria area, taking a shower, standing and even walking within the parallel bars. She still needs various levels of help with most of these task. They rate the amount of help needed in 25% increments. So for some tasks, she needs 75% help and for others she needs only 25% help. It is a big deal when the therapist upgrade her assist rating from full, to moderate to minimum to none. Dialysis is continuing but she is skipping some scheduled appointments as her kidneys are starting to show signs of working. The big wound on her left leg is just a small surface sore. The muscle that was removed will never grow back so it will take a while to build up the remaining muscles in the leg to compensate. The wound on her right foot, and the drop foot issue is still a problem. Being the last thing to heal has moved it into the #1 spot of frustration. But something had to be the last thing to get better. Moving out of here is still evaluated every day. But we think she only has about 2 weeks left before she gets sent home. She will still have therapy; both in home and out-patient, and she will still have a lot of work and rebuilding of her body to do. But just as the move here has made such a difference, coming home will bring an exponential improvement. We are having a 4th of July slumber party and making a list of places to eat at once Robyn is able to get around. The last day at the hospital includes a 4 hour training session for us both doing transfers in and out of the car. Based on the list of places Robyn wants to go to, we will be using those skills often.

Terrie Syvertsen My Dear, Dear Heart Sister Robyn- You of all people have a right to not only feel but Sing the "Blues ... Read more

Terrie Syvertsen My Dear, Dear Heart Sister Robyn- You of all people have a right to not only feel but Sing the "Blues" as well. You and David have been thru many days of things beyond your control and thru it all taken it all each day, one day at a time...facing it all together. Always forward.
Even those of us who have gone through their/our surgeries and never had to deal (thanks be to God) with what you have had to go through, understand that none of these surgeries is a picnic nor can one be sure where the mind and heart will go in the days that follow...We all just come away knowing that challenges both big and small await us all after we roll back out those surgery doors.
You, dear Lady as you said yourself are making progress and Hooray for you as this is such a wonderful change and I pray for your progress each and every day as you move forward (Again, like many of us!)
It is good to hear too that the wound is smaller and healing.......It will take time. And patience. I know you have both.
You say you can sit on the edge of the bed by yourself. I remember shortly after my surgery how difficult it seemed to do the same thing and was sure I wouldn't be able to do it and was amazed that in a short time it grew to be less and less difficult. I in no way had to deal with this "feat" the way you have. The fact that you have been able to do this is such a remarkable
achievement. Each new thing that becomes easier is no less an achievement and I applaud you with all my heart because getting to this place for you must be much more difficult than the norm......... As for feeling the burden to David you make me cry but I understand as I remember my first mornings home trying to get up and out of bed with my husband gently putting his arms behind my shoulders as I cried for with every movement my 13 staples in my sternum pained me so I cursed like a drunken sailor yet he patiently counted to 3 each time and helped as Gary gently but forcefully push me up and into a standing position where it was easy to go from there to my destination( power chair/ restroom/ etc). As the days continued for a bit all I could do was wallow in how much help he seemed to have to give and I felt a portion of what you did in the burden dept. but with you and all you have been through, so many hours and so many days it must be horrible and hard not to feel you are at times a burden. But Robyn, I am and so is this entire community and probably Facebook(which I am not a member of) bare witness and have for weeks of one Special Man who showed nothing but Love, Faith and certainty that you were going to be ok, you were his priority, you his mission in life and nothing nor no one was going to keep you down. His waking moments were all "You". I am sure what little sleep he was getting was more about getting back to "You". The updates and his every intention was and is to honor "You" and your needs and to know he is there for "YOU"! so how in
God's name can you feel a burden when YOU ARE SO LOVED BY THIS MAN?
Please lay back or sit in a chair if you can and take a deep breath and relish in the fact that every effort you make in getting stronger, trying new things with your PT is bringing you one step, one day closer to getting well enough to go home with your partner in life where you will show him for the rest of your lives together just how much you appreciated...appreciate
all he is still doing to make your healing happen and your recovery as smooth from here on out as you can BOTH make it go. Remember Robyn that it is the TWO OF YOU who are responsible now in being PATIENT and Moving forward together to make you healthier and stronger so that one day you can get into a waiting vehicle that will direct you home to continue with your recovery. You are doing so well. Don't Doubt for one moment that every minute of each and every struggle you have faced or will face getting you out those doors to home isn't worth the price you have to pay.
And don't doubt that feeling yourself a burden on your husband at times will slow that energy down!
So it is ok to let the tears roll when they brim your eyes and need to be released but be gentle with your heart. Tears you weep today will dry up
and hopefully be replaced with the understanding that you are getting better and beginning to heal. With this healing brings you new strength and day by day I hope you will begin to feel it more and more. It will lighten the load and when you are with David let his love for you and him being by your side provide you with more strength until that love lifts you up even more...Please be very patient with each other and with each day and know that the entire community of heart brothers and heart sisters is with you every step of the way. (By the way you two I have a card I want to send to Robyn but I am not aware of any address so will you please let us know where we can send cards(or if someone already knows please pass it along to the community!) Thank you.
Take care now and know we are thinking of you and sending prayers.
Love, Terrie, Hunter and Kat

Joe __ Thank you Robyn! I know you're confronting so much yourself and appreciate that you take the time ou ... Read more

Elaine Foster I understand how you feel Robyn. I have always been very self-sufficient and helping others, so it w ... Read more

Eleanor R You have come such a long way Robyn, I know it must seem endless to you, and you certainly want to be ... Read more

Gerald Schaffer Another good sign. I'm looking forward to Robyn's thoughts on her recovery. Just think about how far ... Read more

Tammy Pilcher So happy for Robyn! Continued prayers and best wishes! David, you've been amazing keeping us update ... Read more

Lewis Garlisi Dsvid, thank you for your consistent job keeping everyone posted. You did an incredible job. Looking ... Read more

Cheryl Batzing David, you have been a great blessing to get to know, and see your beautiful heart of love and suppor ... Read more

Eleanor R Thank you for taking such good care of Robyn and of us through your posts. We have been with you on ... Read more

Rhonda Rawles This is great David, you've done amazing at keeping us updated. I have followed closely and checked ... Read more

Jim O'Brien I'm so happy for Robyn and you, David. Both of you have gone through so much and here she is finally ... Read more

Clare Auten I bet David is happy to see you well enough to keep him hopping. Hoping you continue to make steady ... Read more

Tammy Pilcher Ice chips were the best thing ever! So happy for you, Robyn!

Terrie Syvertsen Hello Robyn- Happy for your Progress and that things are falling into place with the tube out, gettin ... Read more

Wonderful progress!!! Praying that you continue to move forward!

Nancy D Robyn you enjoy those ice chips...and the cherry popcicles are awesome too!! ;-) I am so happy to se ... Read more

Lora Lee Peterson So wonderful to "hear" you! When I came on this sight, you were not able to tell your story, and now ... Read more

Ann Keating Robyn, it is so good to hear from you. My thoughts and prayers are with you as you recuperate!

Lewis Garlisi Perfect description of those bed things. Hope you two are enjoying the slumber party.

Cheryl Batzing so glad to hear or Robyn's progress! Continuing to pray for her full recovery, and for your continued ... Read more

Bob M Great news! Day by day! God bless!

Terrie Syvertsen Robyn and David, Throw in the popcorn and it seems like Gary and I were doing the same thing last nig ... Read more

Terry Shermeister It must feel good to be moving toward normalcy.

Nancy D Been away from the site here but continue to hold you both close in prayers! Happy to read this upda ... Read more

Gerald Schaffer Sounds like all good news. I'll bet once she starts eating real food she'll start gaining more streng ... Read more

Rhonda Rawles The pureed food was not my favorite so hubby got me baby food which tasted a whole lot better, just a ... Read more

Oh my goodness..... Day 49. So glad she continues to move forward!
God Bless You, both.

Virginia (Ginger) French Continuing to pray for you both as you have had so many trials on this Journey. Know that many of us ... Read more

jan murphy Sounds great she is taking in food.You are definitely on top of things,

Robyn Tatuposted a journal

3532 days ago

4PM Friday 5/22 I had no idea today would be like this. As I was leaving last night they told me that Robyn is leaving the ICU and going upstairs to the ...Read more

4PM Friday 5/22 I had no idea today would be like this. As I was leaving last night they told me that Robyn is leaving the ICU and going upstairs to the cardiac recovery floor. This is where you typically go after two days in the ICU. But it was not clear when and it was thought to be in the morning. I left Robyn her phone and the nurse said she would help Robyn call me if she got disorientated with the move. When I got up this morning I saw there was a text (the nurse sent it) saying Robyn moved around 1AM. Then I got a call from a friend I had not talked to in years. It seems that Robyn called him and was talking a little crazy. I explained she was in the hospital and was a little disorientated and had meant to call me but hit the wrong number. I called and she answered and I told I would be right over. She had woke up in the new room and had no idea what was going on. Yesterday and today Robyn has been having some gastrointestinal issues so she has needed a lot of nurse visits. Then she got sent down for one more (last?) echo cardiogram. About as soon as we got back to the room, they wanted to take her to x-ray to look at her belly and make sure there was no blockage or anything causing her to be having the nausea and such. The x-ray came back clear so we are just treating with some meds. Then PT came in and got her sitting up on the side of the bed. Next speech and swallow are coming by. In some of the confusion with moving last night, Robyn pulled out the feeding tube so maybe she can get cleared for food or maybe we need to put it back in for a while. Of course the gastro issues are making that all hard to sort out. And now we are waiting to roll her off to dialysis. (now that she is not in ICU, she has to roll all around the hospital instead of everyone bringing portable equipment to her). We had planned for a morning and afternoon visit thinking we would be in the ICU and a little stir crazy. But I had to cancel the guests as the day has been non-stop. I was not at all packed and ready for all of this activity. I rushed out of the house to got to the hospital as soon as I could. So I did not get a chance to really pack up lunch and supplies. Typing this post is the first chance I have had to sit down all day. But this is all good news and steps in the right direction. I think we are still tracking to move back to the LTAC early next week.

Lora Lee Peterson Praying for some calm for you and Robyn.

Gerald Schaffer Seems like so much, hope she can get some rest.

Ann Keating Goodness, what a transition. But it seems like a good sign. My heart is with both of you.

What a tough day for you, both! Praying you two can rest well, tonight.
It all sounds pretty positi ... Read more

Mary Myers awesome news!

Tammy Pilcher Hope she has a restful night and can have a comfortable day tomorrow. You both need a break. Prayin ... Read more

Eleanor R This is a good kind of busy, as Robyn begins the "normal" recovery of being in a cardiac step-down un ... Read more

Thank you for the update. Praying that things go smoothly and that Robyn is comfortable. God Bless ... Read more

Tammy Pilcher Praying for continued progress for Robyn. She's come so far and you are an outstanding caregiver, Da ... Read more

jan murphy Things are improving ,our prayers continue for y'all.

Terrie Syvertsen David-Thanks so much for the update. Tell Robyn that we are hoping to hear she got a chance to use th ... Read more

Jim O'Brien Wonderful news to hear of the progress made. She indeed has come so far and gone through so much. She ... Read more

Eleanor R Thank you for letting us know, as you can see you have a lot of support here thinking about you both ... Read more

Rhonda Rawles Haven't checked in for a few days so I'm sorry to hear of your setback. Want to say what an amazing ... Read more

Terrie Syvertsen David and Robyn. Thinking of you and appreciate the updates. I wish there was something I could do to ... Read more

I'm so sorry to hear about the complications. May God continue to heal Robyn from the inside out.
Yo ... Read more

Tammy Pilcher Praying for y'all. Your strength is an inspiration! God bless!

Eleanor R It is good they have figured out what the issue is, I am sure that not only will Robyn breathe easier ... Read more

Clare Auten Wow. What a long journey you have already had. Praying that Robyn is on the road to recovery. Praying ... Read more

Tim Goff Great to get the tube out. I hope that she continues to make some progress into tomorrow.

Nancy D wow...she should feel better after that! Would be like trying to breathe through soup! So glad you ... Read more

Ann Keating Worrying and praying for both of you. This has to be one of the hardest things you and Robyn have ev ... Read more

Janet R Continued prayers for you and Robyn so that all of this will be behind you and on the road to recover ... Read more

Kathleen Peterson You two are having quite a journey. Robyn is so blessed to have such a devoted and loving husband. ... Read more

Praying for you and Robyn. She is in good hands. Sounds like she is very strong spirited. God Bless Y ... Read more

Sandy Davis prayers being sent up the 2 of you. Stay strong!

jan murphy David don't worry about freaking out.The nurses really want you to be involved and freaking out gets ... Read more

Janna Bruns Thinking of you both.

Nancy D Praying for you both and all who are caring for her! I hope this is the start of her healing fully a ... Read more

Tammy Pilcher Praying for y'all!

Bob M More prayers for Robyn and David.

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