Sam's Journal

Phyllis Petersen  Any unusual swelling should be brought to the attention of her doctors immediately. Don't take any chances that it's a circulation or worse problem.

Marie Myers  Severe ankle swelling could be a sign of heart failure. She should she her cardiologist or primary Doctor as soon as possible.

Sam T  wow— thank you both for writing. of course, she has appointment a few weeks away. THE WAITING GAME.

Sophia Ridley  Pls check with doctors as they will want to know the colour of the phlegm in case of chest infection.
My thoughts are with her, lack of sleep is so so hard.

Steven A Husted  i dont know if this will help but i had the same problem and i would sleep in a sit up position and i could get rid of my phlegm more easy and not choke on it i will be praying for you

Sam T  thank you, guys! we've been the go ahead to do robotussin plus half and oxy at night to help ease the coughs and simulate the codiene (sp) cough syrup stuff.
quick query:
any tips for how to help her sore back?
they turn all of you into beautiful brave pretzels in the operating room.....
anything help that you know of??
xo

Elaine Cutri  The sore back just takes time. It was very odd, it went done in intensity, but it took about 3 months.

Jean Raber  Quick note: Hospital should give you a couple of breathing toys, one for inhale, one for exhale. If they don't, tell them you need them. These can help especially if your mom iisn't getting around.

Elaine Cutri  A light massage gave me relief. Best wishes. PS: "done" is suppose to be "down". Sometimes the suggested words are a little presumptuous.😊

Michael Meyer  Sam:
I was placed on coumadin specifically for the purpose to prevent afib and did not experience. I was made aware that it was a possibility.

Jean Raber  Afib can be part of the post-op landscape forever, but it can be controlled with meds or, in my mother's case, a pacemaker. Many people her report that they had no afib or that it went away and never returned.

Before my mom's pacemaker was installed (three months after surgery), afib made her very weak and breathless at times; at times it wasn't very noticeable.

You cannot manage the afib; you can only monitor symptoms and share your concerns with your mom's doctors. Once she's in better shape, you may be the best person to educate her about any lingering afib and what symptoms to report.

If your mom is still in the hospital now, ask the nurses to tell you everything they can about afib, what meds your mom will take that might be for afib, and what you to be vigilant about.

My guess is that you aren't the type of person who will let grass grow under her feet if you feel your mom isn't doing well at home.

Be well!

Sophia Ridley  Loving that she's trying to set you up with the doctors, good sign that she's on the mend! :)

I had MV repair on 18th and I've still got post surgery A Fib. Doctor told me on Friday: 30% of patients get it, 90% recover with rate management. Find out all you can from hospital. Please ensure you get a clear answer re breathlessness.

Mine was occasional whilst in hospital but now it's pretty constant. I had Magnesium IV when readmitted and I think that worked but only temporarily as not strong enough to maintain it in normal sinus. When about 120bpm+ it felt like it shake me, it's now about 90-100bpm and so less noticeable. They will give meds to manage the symptoms. One huge tip is that your mum's BP will need to be in normal range for them to manage this, well hydrated, walking and eating well will all help. Mine kept slipping below 85/? so they have been reluctant to up the betablockers. I'm now 100/70 and climbing so hope they will increase BB this week. There's a number of options but they are wishing to wait and see with mine.

It's incredibly frustrating to have this.

MaryAnne Jardis  Hi Sam
Good to hear from you re your mom!
I had a bout of a fib while in the hospital and once at home. They put me on a blood thinner for a couple of months until they are sure it won't come back. They told me that most patients who have it after surgery will eventually have it go away so not to worry. Once I got home from the hospital if I did not feel good I would call the visiting nurse or the cardiologist nurse and ask them what was going on. I was so scared I was going in to a fib. I wasn't but you just think you are. Who is her cardiologist at brighams? I have dr Adler who calls me back immediately with any answers for me. So use the nurses and doctors to ask questions once you get home and just have her listen to her body. If something does not feel right, call a medical person or go to the emergency room. Better to be safe than sorry!
Keep us posted on how she does. All the best! It will be good for her to go home!

Kimberly Biddick  In my opinion the most important part is that it just reclines electronically. My first few days home I needed help getting out but after that I was fine. It it were not an electric recliner I still wouldn't be able to use it! Glad to hear all is going well and moving in the right direction!!!

Ericka Carlson  I bought a power recliner, no lift, and that was fine. The recliner rocked which actually made it easier to get out of.

After my recovery I sold the chair, it ended up costing me less to buy and sell than it was to rent.

Christine Oliva  Have you tried a medical supply store. I got mine through DMS medical supply. I'm in Calif. Also, I found several on-line in my area. Try the internet, but those you have to pay delivery. I slept on mine the first 3 weeks. I was told some people use the bed, but use a wedge with a few pillows-3 to 4 but some people use less. You can definitely get a wedge pillow on-line through Amazon and get it delivered quick. My two cents and good luck to you both. Its crazy so just do your best she understands.

Jean Raber  My mother, 84, had no recliner with lifter, and she was fine. She preferred to sit in her accustomed place on the couch. She slept in her own bed as soon as she got home. Tell the nurses that you need a lead on some of these things. If they don't know, tell them you want to see a social worker or occupational therapist who can. It will work out, trust me. You are going to do great at this. Give yourself a break, dear.

Robert Osmachenko  No worries. I didn't use a power chair. If you use a recliner, then I would try them out using one of her friends as a surrogate tester. Not too high, with an easy lever and you can be in charge of the "comfort rating". Prayers aloft for you yours.

Sophia Ridley  I haven't a recliner, I'm sitting on a sofa with pillow behind me or on a dining room chair trying my best to remember my posture. I have a lafuma garden chair which I was tempted to try with a sleeping bag! I'm ok going from sitting to standing with just my legs and for night I've got a bed wedge and a mountain of pillows. It takes a bit of engineering to get comfortable! I have also made a double duvet into a single which I sleep inside so I have a softer mattress topper... Bliss! To get out of bed I turn to my side and pull my legs to pendulum me upright - OT showed me. I would be sleeping flat apart from the pain in my left upper back after lying for an hour.

Ericka Carlson  With the pain I had there was no way I could have sat on the couch or slept in my bed. It's definitely different for every person.

Gerald Schaffer  I had a power recliner but not a lifting one which I used for six weeks. I tried the bed but laying flat was painful until my sternum healed.

Sophia Ridley  So pleased to hear that all when well. Lots of healing vibes coming your way!

Speak to the doctors regarding her pain meds. They may need to change them. I went from Fentanyl (patient demand) to paracetamol back to cocodamol which seems to suit me. Tramadol was too strong.

With tubes, I always made sure there wasn't anything obstructing their movement, they will be out soon which is a great relief and also a good marker of recovery. The nurses will guide your mum on the breathing technique.

Sleeping post surgery was my biggest issue, I felt like I was never truly asleep but always conscious of my surrounding. The exhaustion of my first trip out of bed soon righted that as I slept for hours soundly and broke the cycle. It will make all the difference, and own pillow is bliss!

I would not recommend a massage however nice it sounds as it will increase circulation. There are some healing hypnotherapy recordings on the internet which are calming to listen to if your mum's inclined. Once I could sleep, that's about as much as I wanted to do!

MaryAnne Jardis  HI Sam!
Great to hear from you regarding your Mom. Brigham's nurses will take care of her..be sure she keeps ahead of the pain though. The first few days are rough but every day after will see improvement.
You must be a comfort to her and I am sure she feels better knowing you are there. Many healing thoughts are being sent your way and many prayers too.
Be strong!

Jean Raber  Sam, I spent more time at the nurses' station agitating than I did in mom's room. My mom didn't have a lot of pain, but did have some pretty scary shortness of breath during afib. When I pushed, the nurses got her some inhalation therapy. To be fair to the staff, my mother would tell the nurses she was fine and then complain to me that she wasn't. So you may end up being the go-between a lot.

Hope you are getting some rest yourself. You'll need all your strength when your mom comes home!

Doran Herritt  Sounds familiar. She will feel better each day. Hug the pillow when coughing. Use the breathing apparatus regularly to help clear the lungs. Walk as soon as she can. Prayers heading your way. Take care. Drn

Mary K  Hi Sam. I had Reiki massage at Cleveland Clinic, and it was a Godsend. I agree that her pain needs to be controlled. And yes, take care of yourself. Eat, sleep, get some exercise.

Lisa Shepherd  It can be difficult to concentrate so talking books would have been nice. Hope all goes well with your Mum

Clare Auten  I don't remember needing much at the hospital. A good, long cord phone charger was helpful. The nurses would plug it in so I could get to it easily. Chapstick helps too. The air is dry and my lips chapped easily. Music uploaded to my phone. Earbuds. Hard to concentrate on reading but I liked magazines with short articles and lot of pictures. Nothing too heavy. At hospital it helps to have a notebook and pencil. If you aren't there when a doctor comes. Your mom or Someone could write a note so things aren't forgotten.

Sam T  clare, lisa-- thank you so much!!!
this is very helpful! earphones are good! excellent! eye-mask? i heard about some pre-surgery guided meditations-- has anyone had any success with those/ have any to recommend??

Steven A Husted  yes a power recliner was very helpful to me some may not like them but for me it was a life saver i still use it today at over one year out and cardio rehab was a blessing and a lot of help and i am still in cardio rehab phase 3 i enjoy it very much

MaryAnne Jardis  Hello! I had surgery at Brigham and women's in Boston on oct 27. My surgeon was dr shekar, chief of cardiac surgery. Excellent surgeon and staff. I am sure your mom will have the same great experience. All the best!
I did do the healing statements that many books recommend to be read during surgery. I gave the statements to the anesthesiologist and he had a nurse read it to me during surgery. They are very accommodating and will work with you!

Kimberly Biddick  In the hospital - face wipes and dry shampoo (it's days before she will be able to shower), Chapstick, her own pajamas, slippers, snacks, miralax, her own pillow and blanket
At home - lots and lots of extra pillows for positioning, a recliner, a wedge pillow incase she wants to attempt bed sleeping, a hand held shower head, and a shower chair

Best wishes to you both!!!!!

Michael Shaughnessy  Loved my power recliner. Bought 3 of them before surgery and the kids and I built a basement movieroom using them after recovery. We still love them.

Sam T  YOU ARE ALL MY FAVORITE PEOPLE EVER!
maryanne, dr shekar is her surgeon! i am so so glad to hear you thought he was excellent!

MaryAnne Jardis  Hi Sam
I am so happy your mom has dr shekar. You can't get anyone better than that. My family members took turns staying in the hospital room every night since cardiac patients have private rooms. That really helped. She will do just fine.
Where is your mom from? I live in New Hampshire about an hour from Boston. We are blessed to have incredible doctors in the Boston area.
Let me know if I can answer any questions for you! All the best.

Sam T  michael (and anyone else who has ideas!) are there any suggestions of specific pre-surgery music you'd recommend? i feel like spa music would be good?
(though maybe that music isn't quite as lovely as when you're getting a mud bath...has anyone actually had a mud bath?)
also, someone once mentioned a particular pre-surgery meditation that you buy to help you in the weeks prior... has anyone heard of/had luck with?

Christine Oliva  When she gets home a Power Recliner makes it so much easier to up and definitely helped me sleep. I was finally able to find a comfortable position in my power recliner when I got home. Worth every penny. Also face/body wipes, slippers/socks, extra pillows, comfy throws, easy slip on/on tops (some people have temp variations the first few weeks) so loose tanks, button/zip front sweat shirts helpful or PJ's, key is soft and none binding because of the incision. Additionally if you can get a table for the power recliner very helpful. I used mine for pitcher of water/juice, snacks, book, remote & all important spirometer. The first few days/week I was not moving so good so it was helpful to have these things close by. Also, the less pain I had the more willing I was to walk which she needs to do at least twice a day.

She may not feel like eating but she needs protein so keep her favorite protein near with healthy treats. Also, something for the stools and have thermometer close too. Basically, anything she likes and keep in mind she will probably be in some discomfort so try to adapt it.

I am now 5 going on weeks post op and I love my recliner but gave it back yesterday. I can now sleep in my bed and walk 2 miles a day and wear comfortable but normal clothes now. I got some climbing to do still, but let her know she can do it and if she has a couple of bad days in the beginning it does get better. Oh...get a copy of Adam's book too, you both will be able to relate pre and post. Blessings to you and your Mom!

Christine Oliva  This part is for you and any caregiver. My hubby was my caregiver and he said I was in and out a lot so he kept himself sane by listing to music, books on tape, his lap top and just being around when I woke up. He would slip down for a coffee or a sandwich and would go back to the hotel to change/shower at night. He stayed with me 3 days straight and I appreciated every moment having a cheerleader in the room. He just gave me a sense of peace.

When I got home he stayed with me for about 5 days and was very patient with me. I was pampered. On day 6-10 he went back to work part time and I was feeling well enough to have him gone for a few hours. He did leave me with a pitcher water, some juices, some food to eat already prepared.
As well as made sure I took my meds, took a shower, open jars, bottles, things were on shelves easy to get to (watch for heavy & high items) and ready for the day before he left. We texted during the day. I always had my phone charged right by me. Some people need more time to be alone so this maybe need to be adjusted. Also, keep in mind she maybe on a blood thinner so keep away from the greens when she gets home. Talk to the doctor about this. And most important my hubby says you got to take care of yourself too so you can help her. I hope we were helpful. Take care.

Mindy Currence  You will be a great caregiver! Your mother is lucky to have you! :) I wish I could give you some help, but actually these posts helped me too as I am scheduled for Dec. 2nd. I wish your mom a speedy recovery, and you patience and compassion. One thing I did read is to take some Desitin as it can be soothing to areas where they remove the heart leads. Sometimes those can irritate the skin. I am taking a my own pj's and a robe, but I did buy oversized, loose fitting tops so they were comfortable.

Wanda Mroz  I needed a shower chair when I returned home the first couple of showers. Make sure to have that. POWER recliner is helpful. I was able to sleep in my bed, but lots of pillows to prop her up if she does use the bed. Books, books on tape, movies, music. You will be a great help! Shower soap with no perfumes/fragrance free also. Make sure you have all the meds filled that need filling as well.

Cheryl Shute Walter  Wishing your Mom the best in her upcoming surgery. Prayers and Thanksgiving wishes to you and your family.

Terrie Syvertsen  Dear Sam. One of the most important things your Mom will need....and has is YOU, Your love, support and strength to help her! Happy Thanksgiving!

Gerald Schaffer  A power recliner is a plus for sure. I lived in mine for about six weeks. She will need help for about two-four weeks after getting home.

Meredith Bray  Enough pillows to build a wedge in bed! It'll be difficult to sleep flat for several weeks. The pillows can do double duty in supporting head/neck/shoulders while in recliner. It's vital to take the weight off the neck area by lifting the arms a bit - jam a couple of pillows under the armpits to support them. it'll make a world of difference!
And chapstick, for sure.

Mindy Currence  Wishing your mother a successful and minimally painful surgery tomorrow. Prayers are coming her way!

Jean Raber  Sam, I took care of my mom post-AVR a few years ago, and here's what YOU need:

1. A notebook to record all meds given so you don't forget any, and so you can note problems or concerns to discuss with a visiting nurse (if you have one) or report to the doctor. (Using my controlfreak superpowers, I made a chart so that when my brother came for the final 10 days of care, he knew what she was taking.)

2. A bag or box for discontinued medication. Meds change a lot, and some (like Lovanox) are d/c'd before you run out. You don't want them in the way so that you mom accidentally gets a dose. Usually you can take these to the local pharmacy for disposal, but keep them around for a bit in case they're re-prescribed.

3. Your mom will want a lot of rest. I had Donna Tartt's "The Goldfinch" on my Kindle that whisked me away from some of the stress during down time. If you knit, crochet, embroider, or whatever, it's very good to have something to do with your hands.

4. Be prepared to go running out for food a lot. OHS patients have fussy and changeable appetites. Make sure you pick up things that are healthy for you, too. Keep the car gassed up. A stationary walker may help your mom get in and out of the car if need be.

5. My mom was able to take a shower both in the hospital at home, so shower or tub bars and a riser for the toilet will help her be safe and comfortable and reduce stress on you. One of the things that really relaxed my mom was having her hair washed and blow dried.

6. Carve out some time to take a walk or get some fresh air, even if it's sitting outdoors while your mom is napping. You have to keep up your own strength and mental attitude.

7. Be prepared to live in sweatpants and fleece. They're comfortable, you can sleep in them, but you're ready a moment's notice if you have to make an emergency trip (God forbid) or deal with a situation.

8. You may need to clear a space in your mom's room for monitoring gizmos.

9. Toughen your hide. Your mother may be grumpy and even very ungrateful at times. Ignore it. Mine called me the Health Nazi when I made her get up before 11 a.m. to do her vitals and make sure she was drinking enough water. When she refused to do anything but sit and lie in bed, I put a bug in the visiting nurse's ear, and she called in a physical therapist. Mom was mad as a wet hen. But she got better quicker.

Bless you! I know what this is like, and I know you can do it.