When You Can’t Be There: Tips for Providing Long Distance Care & Support

Hi there Adam,
I’ve watched you on the info on your heart surgery and also your interviews at the conventions that some of the CC surgeons were attending with much interest.
Since I had aortic valve replacement with a bioprosthetic plus 3 CABG in April of 2011 I haven’t felt that everything was right. The surgeon at a well-known hospital here in NW MI considered the fact that I also had a mitral valve problem with prolapse and leakage for over 25 years but due to having to have the 3 CABG he could not do two valve replacements/repair in one surgery. I also at that time had about 1/2 kidney function which complicated things with a history of kidney stones and surgery for that.
I changed to my present cardiologist in Feb. of 2011. She has been very helpful in testing & diagnosing me despite my rather long-standing and complicated medical history. She advised me the first time I saw her that I could not have my planned second back surgery until I got my heart fixed. I asked her what the numbers were, she replied .7 which I knew meant a heart cath. The cath, multiple TEEs, echocardiograms and follow up care over the years since I first started with this clinic in 2004 led me to having the surgery in 2011. However, it did not turn out to be the best outcome we had hoped it would be.
I thought the cardiologist I had had for six years was pretty casual about things. And a friend who also had him was disillusioned with him when she had a cath and he could not be found when she develop a bleed afterwards when he told her he would be around until she was discharged.
Before I left him I asked if when the time came that I needed something done and they couldn’t do the procedure at that clinic what would they do. His reply was that they would send me wherever it was best for me. I was not comfortable with his casualness of my ongoing problems.
I was following my echo reports, and found when my present cardiologist read the reports I could understand more of what was there as opposed to some of the other drs there and that led me to choosing to change to her.
Communication is very important to me. Like you I am a writer, an artist, a musician and have done many types of work in communicating and writing as well as heading up PR for our public schools here for 13 years, publishing newsletters, press releases, writing for a weekly and a daily newspaper, working in radio and with my late husband entertaining as the lead in our dance band which we had for over 55 years. I have played music in the public since I was 15 years old and am still active at age 78 and have many interests.
My present cardiologist tried to do two Dobutamine testing procedures over 1 1/2 months this past fall and had to cancel both after the echocardiogram showed I was holding too much fluid around the lungs and heart so they could not do the IV for the med that would raise my bp for the test without a treadmill, as I have continuing back problems.
This led her to do another TEE, about the seventh I’ve had since 2004, which showed the new bioprosthetic valve was only working about 1/3 of what it should and the mitral valve was also involved with leaking and prolapse.
She advised that my son and I make an appt. with the heart surgeon who did the surgery to get questions answered. We did see him a couple weeks later when he was available. He could not explain why the new valve was heavily calcified and not working. The valve was somewhat undersized to my needs because of the heavy calcification of my whole heart area including the aortic root due to rheumatic fever which I had three times in my twenties over a period of about seven years.
As I said before this dr. did not communicate with us well before or after the surgery which bothers me. He told my son after the fact that I was high risk going into surgery and that my condition prevented them from considering going back in should something come up. The total of about four times I even spoke with him (once on the phone when he introduced himself let me know he was fussy and liked to do a good job), once in the office before surgery when we were trying to get questions answered and he seemed only interested in setting a date for the surgery and asking me which kind of valve I preferred and briefly when I was dressed ready to go home. I told him I was preferring the bioprosthetic because as I understood the situation you would not have to be on lifetime Coumadin. I already had enough meds and things to deal with. Afterward he only saw me twice, right after when I was on the ventilator and the paralytic had not worn off and they were asking me to move and I could not which scared the heck out of me, then again when I was ready to leave after eight days in the heart unit of the hospital. He did not talk anything over or give me a chance to ask questions before he was out the door.
Another problem was the anesthesiologist who never saw me until just before time for surgery and he wanted my signature on the consent form. I know he was there, but as I was already pre-sedated it did not register with me what he was trying to tell me to expect during or after the surgery. He came once, but the nurse said I was sleeping. He never came back while I was awake during the eight days to communicate with me.
I think this is so wrong. I had problems with some AF after which the cardiologists discuss me maybe needing a pacemaker, but another dr. from my own came in to report to me that they decided I did not need a pacemaker but the reaction of them just going in to do surgery means they are putting their hands where their hands are really not meant to go and it creates a reaction from the heart to protest a bit. The AF cleared up with some meds they gave me for a few weeks during the recovery period.
Later, one of these meds that I researched on advice from a friend, I questioned my cardiologist why they gave me that particular med when they said my AF was mild and this med was meant to be given for extreme cases only and had a myriad of side-effects, one of which is optic problems.
Last year at my annual eye exam with my optometrist it was found that I have double vision in both eyes since then, and was sent to some other specialists to see if they could determine what might help in my new prescription. They concluded that I needed a prism in both inner corners of my eye glass lens which helped to some degree, but another dr. determined that I did indeed have a muscle imbalance which would affect my vision also. I continue to have problems with my vision and wonder if this drug was the cause. I asked my cardiologist why they had given me that particular drug. Her eyes got wide and she hesitated when she answered saying that they do not use that drug much anymore. I had to wonder, “Why me!?? when I supposedly had only mild AF. I have lost some of my vision since last year and find my eyes tearing probably from how much I read and needing artificial tears to try to keep them clear. One eye specialist stated that he felt my tear ducts and oil glands around the eyes were mixing on the surface of my eyes and creating a prism effect with my vision causing double vision. His treatment he told me to try did not work.
Fortunately I’ve been told that our brains compensate very well by overcoming problems like this. My children asked how I could drive with this. I drive very well but when I close either eye, I still see two images. It sounds crazy, but I guess I’m used to it and still manage by concentrating.
Did this surgeon make a miscalculation on my case in that they could handle the complications at this facility? Why would they not send me where it would be best for me? If they had sent me to CC or Mayo in Rochester, MN, might I have had one surgery and not have to have my chest reopened? Someone said “sue”. We are not people who think that suing accomplishes much. The courts are clogged with lawsuits some of which have no chance of winning huge settlements for the plaintive going up against high powered lawyers. It just creates a long journey with the legal system and stress and heartache for the plaintive, but the lawyers are usually the big winners.
No, I’d rather speak my piece which I did with the surgeon. I told him that I felt like I was a test case and that his communication with me as a patient left much to be desired. He replied he was sorry I didn’t get the intended outcome we had hoped for. I have learned over many years of medical problems that I can make better decisions based on having the information I need to mull over and have clarified if necessary.
Our oldest son passed away at age 11 after suffering many medical procedures trying to get a diagnosis over an eight year period.
He was small when he was born but seemed to develop normally walking at 10 1/2 months, talking full sentences by age two. By age three he was starting to lose balance and speech began to become slurred. His decline we later found after much searching for a dr who could solve the puzzle was due to a rare disease process that most drs never see in their lifetime of practice and back in the 60s it took us a long time and many visits to specialists to find he had Wilson’s Disease, a copper imbalance due to a recessive gene from both parents which only happens in about 1 in 10,000 chances. Therefore even when our pediatrician finally heard the diagnosis, his mother told me he groaned and was upset as he had prescribed a special diet for our child which was literally poisoning him because I had to gavage feed him by passing a tube through his nose to his stomach to try to improve his nutrition with a concoction of ground raw liver, special sugar, milk, vitamins and other ingredients he wrote up that we had to blend together and feed him 4-5 times per day as his voluntary muscle control would not allow him to chew or move food to swallow. He did enjoy ice cream which we fed to him with chocolate sauce on it. We and the dr. did not know that with a copper imbalance, the patient has liver, central nervous system and kidneys that are compromised with foods high in copper like chocolate, liver and other seafood etc. There was not much in the medical books I continued to research in at the time. Now nearly 50 years later there still isn’t much known about the condition but it does run in families and we had our other children tested on advice of a pediatric neurologist in the Chicago area from whom we finally got a diagnosis after seeing six specialists in various areas. His IQ was 126, but there was the chance that if he had lived longer his mental capacities would also be compromised. He contracted pneumonia, recovered, then relapsed and died.
We trust drs. But they don’t know everything. How could they. Individuals are complex and no matter your education, practical or from books the answers are at times elusive.
There were times during my husband’s 12 year siege of non-Hodgkins Lymphoma, Stage IV which then transitioned into the most rare kind of leukemnia that I could tell the drs that something they were going to give him was not right for him, especially if they were filling in for our regular dr. I even bought a medical book on the lymphomas to try to better understand what we were dealing with. When people say ‘cure cancer’, they don’t seem to understand that cancer is not one disease process, there are many including various sub-types of each. We were fortunate to end up with a great hematologist/oncologist whom we had for ten years before he retired and handpicked for us a new younger dr. whom we became very fond of also. The original dr was a good clinician in the cancer field but was not kind and supportive of his patients. We discharged him too because of again communication problems. The one good thing he did was to refer us to Mayo Clinic in MN which was worth the trip. Then I told him that if he couldn’t communicate with us we were getting another dr and we did.
Our kids told me after their Dad was gone that they thought if I hadn’t been so proactive taking care of him he would not have lasted as long as he did. He continued to play music with our band until the last five months before he passed at home under hospice care. Our primary physician is great and I have let him know that he is the kind of dr who is the epitome of what people would hope their family dr would be. We have a great relationship and he even made some house calls for Ken when he had to determine how much my husband could do without compromising his energy and strength as he was living on blood and platelet transfusions weekly.
My approach to a problem is to try to find out what we need to do what we have to do and then do it. With all the health problems, I have kept on moving ahead and working even playing my 30# electronic accordion had it’s advantages. It stretched my fingers which had some surgeries done on them, With the pushing and pulling using the bellows to make music, it was like aerobic exercise.
It’s the hauling of speakers, sound equipment, the accordion in and out of the car, up and down steps sometimes with the help of a hand truck that is the hard part and setting up and tearing down and reversing the whole process of doing a show that is taxing. The playing is the pleasure part. And the interaction with the audience and seeing them swinging or polkaing on the dance floor with gay abandon to music you are playing that keeps muscians doing what they love.
Well, Adam I can appreciate what you are doing with your book which I intend to read, your continuing quest for information for heart patients and still having family and your own health to deal with. I’m sorry this has been long. And no need to share all this with anyone else. It just seemed like a favorite word of mine (Serendipity) had happened when Dr. Roselli’s picture and info came up when I clicked on the surgeons part of the CC website the day before I got the call from Becky the RN from the surgeons offices of the Miller Family Heart & Vascular Clinic of CC. She answered several questions for me, like how does a dr come to be the one for your surgery. This was of course because they have the special skills needed for your particular problem. And I had decided after reading about Dr. Gillinov and others that Dr. Roselli seemed to fit this billing. Then Becky told me that my cardiologist Dr. Anne Hepner had chosen him for me. Is that a little intuitive???? Dr. Hepner and her nurse Sara have been very good with me. She had experience in working at Mayo and also in a Veterans hosp. which impressed me to ask if she was a Vet herself. She isn’t but she seems to be on top of things which I appreciate and sometimes she calls me as late as 7 pm in the evening or even on a Saturday although she has a physician husband and two sons in college. So I give her and Sara high marks on handling their patients and let them know I appreciate them both.
Stay well. Keep on keeping on! Thanks for listening. Eileen J. Hawkins

Looking for the best Dr. To do minimally invasive heart surgery for my MVP with moderate regurgitation. I live in Cincinnati, OH . I know Cleveland Clinic is the best but wondered if there is anyone local ?!! Would greatly appreciate any help!!!

Hi Cynthia,

Here’s a link to several surgeons in Ohio.

http://www.heart-valve-surgery.com/surgeon-database/surgeonSearchResults.php?country=220&city_state_zip=Ohio

I hope that helps!
Adam

Hello dear Adam
I found your tips useful but only I want to advice patient that motivations for continuing their lives is much more important for instance myself exprienced AVR just some months ago during the time that my country was under cruel sanctions against patient even in some parts of my country Warfarin was rarely founded but just because I had motivation and trusted on my surgeons just after four days I dischard and I attended my English class
Alone without help of anyone.If you want you can do it just carpe diem and abide in God’s wisdom.
Amir,IRAN