I thought I'd tell my tale of woe of DOING TOO MUCH!
I never had back pain before. Welcome to the kingdom of pain! I was feeling real well, going to rehab, taking walks, going marketing and not even asking for light bags and help, gardening (ripping out mint roots, like some hot shot,) cooking with kind of heavy pots, all sorts of forbidden activities, all together, ignoring the sore back. I thought that it was sore because it was starting to go back into action. WRONG, wrong, wrong, wrong-wrong!
My back seized up first on my shoulders, and I couldn't make the massage appt., and I put a heated buckwheat collar thing (too much weight, found out.) to ease the soreness. I should have probably iced it. Can't take Aleve, because I'm still on Coumadin. So I ended up seizing some muscle that went to my sternum, as well as another muscle between my shoulder blades. I ended up going to my leftover oxycodone, which helped the pain, but not the spasms.
I called rehab, they said call your surgeon. I called the surgeon, (I am 2 weeks too far from surgery to get help there, but they said take oxycodone around the clock if your Tylenol isn't working...,) I went to my primary care, had to bully an appt., and she doled out more oxy, and some muscle relaxants, and a flu shot (bad move). 2 days on muscle relaxants helped, but I was back in the narcotic constipation bad place, so I stopped everything, kept heating pads on the muscles, slept in my recliner for 4 days, was in more pain than after I came home post surgery, sobbing, aching, grouching, despairing. Oh, and then I had fever/chills and night sweats for 4 nights, 2 longer than flu shot symptoms are supposed to happen. What a mess.
I was scared I might have a heart infection (night sweats and low grade fever,) so I finally made an appt. with my cardiologist. He chewed me out for wasting his time with "a primary care problem" I don't have a good primary care doctor. I need one, and asked him for a recommendation. But come to find out, he took me off Metropolol (beta blocker) the week of my spasm, and my heart rate was 100, so I guess I needed a check up...HMMMM. I was in tears in his office, just looking for some help.
My back is fine now, I'm back on a 1/4 dose of Metropolol. I am definitely advocating for myself more. What a bad week.
I am still concerned with my high heart rate off Metropolol, which is where I'm trying to get to.
I wonder if anybody else knows how long it takes for your irritable heart to calm down after a repair? That kind of scares me too.
This week is much better. I stop now when I get sore, and take a sit down. I still get sore, but not seized up.
I had my 7 week anniversary, and things are progressing well.
I have to say, driving (got cleared at dr.appt. on Wed) is a great freedom, and I am ecstatic to have some independence back. I went to the market, shopped for over an hour, and had help to and from the car with the bags. Kinda tiring, but WOW, I got to choose my own stuff again, FREEDOM!!!
I also got rehab set up, and am starting in earnest next week. (Went to initial appts. last week.) I think I am going for 3 months, 3x/week. I want to get back to where I was before the surgery with electrodes and nurse monitoring (I worked out with my husband and a trainer as "date night" for the past year and a half) I think the rehab will be a bright spot.
I realized I shouldn't be down about my friends pretty much IGNORING me this summer, as they are wrapped up in problems that seem less solveable than mine. (I got a lot of love and help from my spectacular husband, and wonderful mom, so I was blessed.) So, I'm going to forgive them for their self involved behavior, not get down, and keep my eye open for perhaps more supportive friends to add to the collection.
I just thought of how small things like going to the market are such a big deal when you can't do them. I had this experience with c-section recovery, but I could use my arms then, and I recovered faster.
I'm glad I appreciated being a 47 year old, and I hope this operation will make me grateful for my life and abilities.
Another great step forward was 2 nights no Oxycodone (I was splitting them in half for going to sleep time, and using Melatonin too.) My pain has decreased a lot, and I have been able to take Tylenol and Melatonin, and sleep well. I also am continuing massage, and the therapist is working on my shoulders, back, and scar adhesions, with I think helps a lot (Cardiologist said keeping adhesions from progressing is the next step, I therefore am going to add a Rosen method stretching class to massage and rehab, to help the healing.) I also ditched my sleeping wedge, and can kind of sleep on my side and tummy, but I have to flip around to my back a lot for a break, but HOORAY! I really feel like I took a step forward, and I am very happy.
Best wishes to all who are on this same journey. It gets better when you least expect it.
Things I would bring to the hospital again & for home after.
Journal posted on August 18, 2011
I thought a quick entry for those facing packing for surgery might be helpful. This is from a gal's perspective, may not be the same for men.
Fabric Shopping bag- good for all the junk you collect, and to keep organized.
Sensitive Face wipes (used to wipe face and body parts before I could take a sponge bath- Godsend. Used bottom wipes too...life can get nasty post-op)
Tampons and pads- the inevitable happened to me mid cycle. Be prepared!
Baby powder, shampoo, gentle foam soap, toothbrush, and paste, deoderent, and a gentle brush. Nice to clean up!
Hair bands, stuff to collect hair off your face, or short hair. Put hair in pony, left it dirty for 4+ days, didn't use dry shampoo, just pulled it into a ball off my face.
Thank you cards for the saints who take care of you and a pen. They deserve it, and it will make you feel really good to say a proper thanks.
Prunes. I ate them with my oxycodone to fight nausea. Better than Sahara desert dry crackers on your sore throat.
Slippers to walk in
And if you travel, you need softy PJs that button in front, and loungy type clothes that have tops that button in front, and walking shoes and a sun hat and sunscreen.
I bought a sleeping wedge at the mayo clinic store, and had a down pillow that cradled my neck so I could sleep on my back in the hotel bed. I also had a small pillow I packed for my chest, but used it for lumbar. Nice to sit in hotel chair to watch TV, as laying down on my back didn't feel good outside of night.
I loved my recliner and my massages when I got home, and my shower chair and hand held shower attachment as well. I also was told to have dedicated wash cloths (white for me) for my wounds only, and I bleached them after. I had colored cloths I washed the rest of my body with, to keep things straight. I had old white towels I bleached daily too, to dry off after, using one end for the wound only. I also was told to use dial soap on my wound, which I did for about 3 weeks.
I think I feel 60-70% healed, and I am grateful for every minute with my new repaired heart. Summer is almost over (kids back to school in 2 weeks.) My mom helps 3 days/week with laundry, kids shuttling, cleaning and organizing the house, the NEW KITTEN (followed me home on a walk!) We go to the market, she drives me where I need to go, and she takes care of the whole family doing things I can't do. We go to lunch and shopping when needed too..nice diversion. Pals are noticeably preoccupied, so I cherish my mother.
I think the recovery is slow. My doctors and the rehab nurse say I am doing great, and recovering fast...??. My skin is pretty well healed (nice low scar thanks to Dr. Schaff.) I guess I was pushing my heart a bit too much on my two half hour walks (I get puffed going up my neighborhood large hill, I was told to wait until my heart is checked in rehab, which starts next week.) I feel like my heart is healing very well. My bones and muscles seem to be the slowest- OUCH. That pain takes patience at times. I get impatient, and want to do the lugging I used to do- gotta wait....not easy for a formerly busy gal who likes to do things with her hands/body rather than passive things.
I am on wafarin (finally stabilized, so I get a 2 week followup YEAH!), and metropolol (which makes my blood pressure a bit low, and makes stooping in the garden dizzy time).
My buddies are busy with their kids, kinda lonely. I hope to get driving clearance next week, but car doors are still a bit heavy, so I take help from kids and drivers. There is a sense of isolation that having this in your 40's when nobody "gets" it. I am really looking forward to the "club" that rehab seems to be, that starts next week. I think having other heart patients around will be nice moral support.
I have been getting massage weekly, and that is a godsend. I finally started rolling on my side to sleep a bit of the night, but I think I tweaked my shoulder. I still have pain at night, and take 1/2 oxycodone. Tylenol isn't enough. I don't need Tylenol during the day, mostly, unless I carry too much or pull something like a window/door with too much force.
I don't know why I feel like I'm not a fast healer (except it is a pain to have any limits on your former abilities, and the low dull pain stinks...) I guess I should trust the experts. Sometimes it feels like you are stuck in a state for some days, and then the next day, some healing step forward occurs. Weird.
I love my motorized recliner still. It is the comforting place where I can always find a position to feel better, no matter what the muscle pain. I doze off in the late afternoon in my lovely chair to FoodTV.
I got a moist heat buckwheat neck warmer thing at the massage therapist. Yum. I'd recommend as the heat and the slight pressure make those beat up shoulders and upper back feel nice.
I think next week is the next chapter with rehab. I'm looking forward to this step, and I think I need it.
I hope this update helps someone. It helps me to read other's progress.
2 weeks post op, bday in 2 days, back is killing me!!!!!
Journal posted on July 23, 2011
I am happily recovering at a good clip. A big milestone yesterday, my 2nd week anniversary post-op: my cardiologist listened to my heart and a huge smile bloomed across his face. Can it get any better?
I am doing very well, both surgeon and cardiologist are calling me a fast healer....but....this ain't fast.
I am formerly a busy mom with lots of cooking, gardening, cleaning, crafting, etc. projects cooking constantly. Now my mom and husband do most things (I am super grateful!!), and I pop the beta blockers, and sit in the super comfy yet boring recliner. I am blessed, yes very much. But I watch the grass grow on stupid TV. I hate TV, but I hate the blank wall even more. I can't seem to read for super long times. I'll give it more chances, but I drift to sleep.
I have some med. hemorrhoids, fun. Taking senna, metameucil, and lots of fiber foods, and water. I think they are better this AM. Yipes. I was careful in hospital, as much fiber as I could pick, and careful in Minn. I had to add an antibiotic for urinary tract infection due to catheter (found with culture about 7 days after surgery,) and iron pills, due to anemia. Plus the narcotics, which I've weaned down to one for sleep.
I have now had the pleasure of feeling the pain betweeen my shoulder blades due to the lessening of my narcotics.
Grouchy Jen! I try to refocus and think how lucky I am to have a fixed heart, and to be healthy, and healing wonderfully.
I contacted my knitting teacher who does medical massages, and hopefully she can work some magic (heating pad helps, but doesn't cure yet.)
I am walking and getting some numbness in my hands occasionally after walking, but Cardiologist thinks this is just my body reacting to the increase in exercise (I can do 1/2 hour slow walks!), and the freak out my body is going through readjusting to the new normal.
This is a rollercoaster, but it is really better than I feared.
I may start some low impact crafting somethings to get my mind moving- the dark moods aren't fun.
On an up note, wandered through my garden and ate 2 perfect plums. I'm so glad I am fixed, life is wonderful.
One week post op, still at hotel near Mayo for 2 nights
Journal posted on July 14, 2011
I had the operation, and it went well!
We had the 2 days of preop appts at the Mayo prior, then last Friday 7/8, I showed up for the first place on Dr. Schaff's roster, 5:30 am, and prepared for surgery.
I was resigned to let this be in the hands of God, and this wonderful team of excellent doctors, nurses, and caregivers.
The Mayo was awesome. Everybody was extremely skilled AND caring. They made sure every question and every step was explained to me, and that I felt comfort in my mind and body.
It is a huge operation, but it runs so smooth and efficient.
Preop was not stressful, I love midwesterners, they are such nice people. The anesthesiologist gave me lidocaine while inserting my IV, so it didn't even pinch. They knew I was a nervous type, so they gave me the joy juice before being wheeled out of the prep room, and I remembered nothing until I woke up without my breathing tube in the ICU (with my lovely angel nurses.)
I had a successful repair to one of my leaflets, with the part that had a broken chord trimmed off. I had a annuloplasty partial ring sewn into the valve to cinch it it, and I was sewn up. I was only on the bypass for 32 minutes. It went stupendously. My echo results where that my enlarged ventricle had gone back to its original size, and I only had slight regurg, which should resolve with the healing of my heart.
It is hard for this little heart to be so ecstatic, but it is!!!!!!
I guess I was alert and waving on the way to the ICU, smiling around the breathing tube, and asking for pen and paper, on which I drew smiley faces. Wow, I don't remember a dang thing. I think some state secrets may have been revealed.
I did, however, have some challenges. My blood pressure remained pretty low for 2 days, not allowing me to sit up, and be eligible for the step down Progressive Care Unit. My pressure has normalized, but because they had to delay my beta blockers a bit, my heart is pumping a little fast (but with normal rhythm, which is good...), however, I did finally reach the upper limits of my target rate, and was released six days after my surgery.
We have spent the last day normalizing to the routine of pain pills (trying to use tylenol for 1/2 the day, ouch, it hurts. I do have an unnatural affection for my Oxycodone, which I know is a forbidden love,) small meals and a rest after, small walks 6x day, lots of groups of 10 which my inhaler buddy spirometer, and alternating between chair and footrest, and bed (not really comfy without Oxy.)
Took my 3rd shower, and this one wasn't a bottom kicker. The hotel had a shower chair too, but I think you feel better in clumps of hours even, rather than days. It really is amazing.
I feel the most pain and slump before dinner, that is the witching hour when I have to reach for Oxy. And then sleeping time too.
I am trying to watch the meds, it is kinda scary.
Since we are away from home, ordering coumadin (on for 6 weeks) friendly meals with low sodium in the plethora of restaurants around Mayo is a bit of a challenge.
Looking forward to landing back at home on Saturday afternoon.
The car trip didn't hurt going home to the hotel.
I know I'm flying with my dark pal Oxy, so I'm crossing my fingers for that next part of my adventure.
I am going to get my blood checked, and have a final appointment with Dr. Schaff's PA tomorrow am, then I'm cleared to leave for home.
It was really the journey of a lifetime. I cried when I stepped out into the sun for the first time in 6 days. I was given the biggest gift ever, a healing heart. I am so grateful to the amazing people at the Mayo clinic, and to God, for allowing all of this to happen.
Best wishes to my pals on this site, waiting for this same journey.
It will be OK. You will get help, and be healed.
Dr Schaff asks his patients after they have the surgery if it was as bad as they thought it would be, and he said he can't remember one that said it WAS. I won't call that wonderful man a liar!
I arrived at the Mayo from So. CA, weird to travel so far for such a big surgery. Each step in the journey is one step closer to the surgery.
The Mayo clinic is HUGE. They say 30,000 people are employed here. I wonder how many patients...
There were about 100 people waiting for pre-op blood tests this morning at 8am. I felt like I was on a weird ride at Disneyland.
The efficiency is amazing, however. Despite mass quantities of people, the staff are all friendly and efficient. I don't think I waited 10 minutes in any of these filled waiting areas.
My echo was super long- about 2 hours. Suprise, suprise (I didn't read the appointment sheet to carefully, this was explained.) I had a cardiologist do part of it, and I was relieved, again, when he said my valve was repairable.
Tomorrow is the appointments with the doctors, cardiologist, valve nurses, cardiac surgeon, and who knows who.
I call in tomorrow night, similar to Sears home repair, to find out the exact surgery time Fri am.
I am scared, and pray, and meditate that all will be as good as it is expected to be.
I feel strong, and able to withstand this. I feel ready to feel some pain and heal. I wonder how this all happens. I thank God for my family and friends.
Now, I hope the sleeping pill works. It did last night.
P.S. the Mayo is connected by all these skyways and underground walkways, so the paths we take resemble shopping malls with tons of wheelchair people, and then a hospital corridor, and maybe a hospital lobby appears, and go down another hall to a food court, and pop out to an outdoor restaurant plaza...am I in some weird dream after too much dinner?
I'll try and keep some entries for the next days.
It might be from Stephen, my dear, anxious husband.
I chose the Mayo because I am following in the footsteps of my father, who was supposed to get a mitral repair, aortic valve replacement, and 2 artery bypasses 5 years ago.
He was having his preop angiogram, and they discovered he had endocarditis on his mitral valve from his 101 temp that wouldn't come down, and subsequent revisit to his echo. He went on IV antibiotics for 6 weeks, his ejection fraction went to 70, and he decided to delay the surgery until he felt worse. He is 70, and wants a pig's valve, or maybe an Onyx. He doesn't want to be on Coumadin. He is also following Dr Gundry's diet and exercise regimes to improve his heart health, and it has. So I get to be the family pioneer, after all these years of treating my Dad like the #1 heart patient that my kids couldn't visit when they were sick. (While I was the frontline of care for the many sicknesses!!)
I went to my Dad's cardiologist, Dr. David Kawanishi in Mission Viejo, for a second opinion on my mitral valve repair needing to be done, and I liked him a lot. I asked him if I could be his patient.
Dr. Kawanishi is having a lot of doctors refer cardiac patients with valve problems, and he has had 3 patients go up to Dr. Hartzell Schaff at the Mayo to get repairs. Dr. Kawanishi verified Dr. Schaff's success rate, and still feels he is one of the best surgeons for his patients who need valve repairs. So I trusted his opinion, and the opinion of a friend who is a cardiac surgeon, as well as a cardiologist of my father's in Arkansas, who all feel Dr. Schaff is a good surgeon for mitral valve repair.
Big party at my house today...going to Mayo in 3 days
Journal posted on July 2, 2011
I walked about 3 miles yesterday, 3 different walks, as my anxiety, my ugly personality trait, is giving me trouble sleeping. I felt I accomplished something by sleeping 8 hours, and going to sleep again even after a 2 am wakeup!!!
I'm heading out soon for today's walk #1
I have surgery in 6 days, and fly to the Mayo in 3 days.
I have definately felt I am a bit between the cracks with my cardiologist here and the surgeon there. I insisted (nicely?) to have the surgeon call me, and let me know he saw my TEE, and he can try to repair my valve. He said 95% chance.
(I am pals with a cardiac surgeon - husband of my best friend, and he said my valve repair was tricky, and did I if the surgeon could repair...oh no..anxious jen started to quake, and needed to hear I was traveling far for a good reason...) I did have to be a burr on the saddle to get this call, however.
I wish I was a calm patient. I got a xanax approved for the night before. I'll need it.
I downloaded about 2 weeks worth of different relaxation/affirmation/guided imagry stuff on the MP3 player. The cheapie Target ocean waves did help.
So, I'm having a BBQ, potluck thing. All disposable dishes. I hope to get laughs and hugs before the big departure.
The night before, July 4, my 10 year old has amassed an arsenal for his first personal fireworks session. We have kept the incendiary devices at Dad's work, but this is going to take time, which I'm not really into. It is the boy's dream/obsession. I guess it might be a distraction for his worry.
(Both my kids seem to be medium worried, not highly worried. Thank goodness. When grammy gets the call from my husband Stephen that I am OK, out of surgery in ICU, I have made them promise to go to this fancy hotel by the beach and have kids meals by the pool looking out at the sunset, and thank God for the blessings.)
So, I'm packing, praying, trying to walk off anxiety, putting stuff at waist level around the house, talking to friends and nurses that call, and trying to find the calm.
It is a blessing to read the response e-mails, and the good stories on this journal.
We'll keep this updated, as my story may give some other nervous patient some information that could help them too.
I am about 2 weeks until surgery. I won't meet the surgeon, Dr Schaff at the Mayo Clinic, until the day before, as I am traveling from California to Minnesota 2 days before surgery. I think I'm going to like meeting the surgeon, knowledge seems to calm me down.
I am trying to be a brave gal, but I cry daily, with little fears, different ones, different days. The cry makes me feel calmer. My husband is very kind and loving during this. He's scared too.
My kids are being typical kids, and their mischief and tantrums are hard to handle.
It feels pretty lonely to be 46 and having this surgery, when most of my friends aren't seeing doctors regularly, and are worried about summer camps, and simple stuff rather than a life threatening and scary-recovery surgery.
I'm not sure it is better after the repair, for awhile.
This waiting is hard with the anxiety it produces.
Looking forward to my daughter's 9th birthday, my six-week post op date!