The Ross Procedure FAQ (Frequently Asked Questions) |
I have listed references to material that was largely written by others in sections, where appropriate, in order to give the sources due credit. The references use the notation "[n]" as noted below.
This FAQ is a compilation of information from a variety of sources:
The Ross Procedure considers the patients own pulmonary valve to be the ideal replacement valve for several reasons:
Results: The pulmonary autograft transplanted to the aortic position was not calcifying, leaking, or showing signs of degeneration. At 20 years, only 15% of patients required another valve operation, usually replacement of the homograft reconstruction of the right ventricle [Ross 1996]. Patient survival at 20 years is an impressive 80%.
[1]
The first of these was the Starr-Edwards design, a functioning heart valve
made from a steel cage enclosing a silicone rubber ball. Developed in 1961,
it was first used to replace the human mitral valve, but had limited
success when used as an Aortic valve replacement. One of the more commonly
used valves today is the St. Jude bi-leaflet valve.
The major disadvantages of these valves are:
Results: The patient implanted with a mechanical aortic valve continues
to run some long term risks of either a stroke or major bleeding episode
in the range of 4 to 8% (combined) per year. In addition, the long term
survival is 60% at 15 years, with most deaths related to non-cardiac causes.
[1]
The porcine valve is tanned with a stringent chemical called
glutaraldehyde, an agent similar to, but stronger than, formaldehyde.
This processing toughens the leaflets and cross-links many of the proteins.
In doing so, the valve is also rendered less likely to be rejected.
However, the tanned leaflets are no longer living tissue.
Results: Calcification of the valve is a problem, and animal tissue valves
usually begin to degenerate within 8 to 10 years after implantation. In
patients less than 40 years of age, animal tissues valves may degenerate
within 5 years of implantation.
[1]
Although methods of preservation and long-term storage have improved,
these valves have suffered from unique problems when used as an Aortic
replacement, such as structural deterioration, difficult implant surgery,
and occasional size mismatching.
Results: These valves will last an average of 15 years. Over time, the
wall of the homograft aorta surrounding the valve becomes severely
calcified, creating increased surgical difficulty at the time of
subsequent replacement. Rejection of the aortic tissue may play a role
in this form of degeneration.
[1]
One disadvantage is the magnitude of the surgical procedure.
It is a very technicaly demanding surgery.
Some critics are concerned that transferring of the pulmonary
valve converts a patient with only aortic valve problems to a
patient with 2 heart valves now in jeopardy. The potential
for premature degeneration of the pulmonary substitute has also
been voiced. Fortunately, the long term results now available
tend to refute both of these concerns. Results have shown that
premature failure of the homograft valve used to replace the
pulmonary valve is much more common when human aortic tissue
was used in the right side reconstruction, as opposed to human
pulmonary tissue. There was only a 74% freedom from reoperation
at 5 years when
aortic homografts were used for the right ventricular
reconstruction. However, there is a 94% freedom from reoperation
at 5 years (and 83% at 20 years) when a pulmonary homograft is
implanted into the right ventricular outflow tract. The reasons
for this dramatic difference are not known.
In summary, the major disadvantages of this operation for the
surgical treatment of aortic valve disease are outlined below.
[1]
The accepted age range for patients having the pulmonary
autograft procedure has expanded significantly.
Many surgeons view the procedure as a solution for congenital
aortic stenosis that can be performed early in life, and quite
possibly eliminate the need for multiple
aortic valve replacements. As increasing durability of the
operation is evidenced, older patients with
more active lifestyles become candidates for the procedure. The
pulmonary autograft procedure is
certainly indicated for young women of child-bearing potential, due to
the problems associated with the use of blood thinning agents
(Coumadin) during pregnancy. [1],[2]
Also, there are some patients who will be required to take
anticoagulation for life regardless of the issue of valve
substitute. Such patients are individuals in whom chronic
atrial fibrillation, left atrial thrombosis (clot), or
stroke have already occurred as a consequence of their
heart or valve disease. In these patients, it is not wise
to place a substitute that will avoid Coumadin® since
there are already strong indications to use long term
anticoagulation.
Some doctors believe that the pulmonary autograft will
age in synchrony with the aging process of the patient as
a whole. Thus they do not recommend this operation in patients
over 45 years of age. However, there is no current data
to support any such concern.
The following conditions are considered factors against using
the pulmonary autotransplant procedure...
[1], [2]
All of these surgical and clinical issues are avoided by using
the Ross procedure on women of child bearing age.
Dr. John Calhoun of the University of Texas, San Antonio
was the first to use a Ross reconstruction in a
newborn infant. In newborns, the potential for growth of
the aortic reconstruction is a vital advantage of the Ross
procedure over any other form of replacement.
Dr Willem Daenen of Gasthuisberg University Hospital in Belgium was the first to
publish results (1993)of a modified Ross autotransplant done in concert
with annular
enlargement as first described by Konno, et. al. In the U.S.,
the Dr. Steven Gundry at Loma Linda University has reportedly performed the
operation as well.[1]
See section 4.12. also.
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Most surgeons will be up front and honest in answering
questions. If you feel the
surgeon is not, then it's probably best to find another.
Some of the questions you should ask are:
Be careful of other patient's recommendations. If they had a positive outcome
they tend to put their surgeon on a pedestal and may not have the best
information on the statistics and actual performance and technical ability
of a particular surgeon.
In summary, try and do a lot of research, as the ross procedure
is a technically very difficult procedure. Ideally, you should try to choose a
surgeon who has done at least 75 to 100 Ross procedures, and a hospital that
does at least 500-700 total heart procedures per year, with a
mortality rate for ross procedures that is under 5%.
[3]
When you meet your surgeon go in with your questions written down so that you
are prepared. Have a family member with you so that they can jot down some
notes and so that you can listen to the surgeon so that you can ask additional
questions and follow-up questions. If you concentrate to hard
on taking notes then you may be missing much of what the surgeon is saying.
Try to limit the questions to those that are really important to you. Most
surgeons are not prepared to spend the kind of time it takes to answer 4
pages of hand
written questions.
Ask the surgeons office if they have a staff member that does patient
education. Many offices will have a Clinical Nurse Specialist, Patient Care
Coordinatior or Nurse Specialist. This person will be willing to spend more
time with you and answer a lot of questions. It is better that this person is
a nurse
or physician assistant than a receptionist or secretary. Usually a Nurse
Clinician or Coordinator can spend more time with you, and if you get his/her name
it gives you someone to call for follow up questions.
Also, make sure you ask about follow up visits. Your surgeon will
probably want to see you a few weeks after your
Ross, and at least once a year after that. If the surgeon tells you they do not do
long term follow up, then they are not tracking their long term statistics.
A program, especially
with ross procedures, should track their patients long term to make sure that
they are problem free. This is often done for publishing but with a surgical
procedure like the Ross it is good to be able to say that after so many years
the patient's valves are still functioning normally. This usually includes
doing an echocardiogram each year. Preferably read by a cardiologist that is
very familar with the Ross procedure, as these echos look very different from
other valve replacement echos.
[3]
[3]
The most frustrating thing for patients and the office staff is that
patients or cardiologist assure us the tape will be there and it isn't. No one
other than you really cares about that tape, so you be responsible that it gets
there.
Get the written reports of echos or cardiac caths, also any other
written
reports that your cardiologist will give you. Again we hear over and over
that don't worry the cardiologist will send that information and the
patient
shows up and we have no information. Then we are trying to get patients
records faxed at the last minute. Some secretary in the cardiologist is
not really that focused on whether your records get to the surgeon.
[3]
An interesting side note DMSO is a solvent, I'm not sure approved
by the FDA for any use other than the above. It is used by
Horse vets as an anti-inflamatory agent. People for many years
have gone to Mexico and now to vet supply stores to get DMSO to
treat arthritis. It is widely popular with atheletes. But still
not FDA approved for use as an anti-inflamatory agent.
[3]
The homografts are not marked with
blood types, etc. like some cyropreserved tissue because the antigens are removed
and the tissue can be implanted into anyone regardless of their blood types.
This is also true of the Porcine (pig) valves and bovine (cow) pericardial
valves. Both use pig and cow tissue which normally the human body would reject but
the processing techniques for these valves remove the antigens and thus the risk
of rejection.
[3]
Some recent evidence exists for the potential of a rejection
process within the pulmonary homograft resulting in pulmonary stenosis. This
rejection process may require early explantation of the pulmonary homograft.
The rejection process may be more prevalent in patients diagnosed with
PPS (PostPericardiotomy Syndrome).
We had a
patient that had his HMO tell him that he had to have his ross done at a particular
institution, by a surgeon who was primarily a pediatic surgeon and the surgeon
had only done 10 ross procedures in his career. The patient was very upset,
needless to say. It took alot of fighting with the HMO and help from the
patient's HMO primary care M.D. to get the HMO to agree to pay for the ross
procedure by the patient's choice of surgeon.
Cases like the above can happen with HMOs because they often strike relationships
with medical institutions based on cost, not performance.
Do not let your insurance
dictate which surgeon you should use. It is an elective procedure and this
should give you time to work with your insurance on their
policies regarding this type of surgery. There are a number of ways to pressure
insurance companies, and threats of lawsuits are often effective. The best
advice is to be agressive with insurance companies. Often their decision will
boil down to potential future liability, and if they know you are dealing with a lawyer
already, they may back down.
Talk with your
insurance company early in the process, it is hard on patients and their families
to have
everything all set up a surgeon, only to have the
insurance company throw a wrench into the whole process.
[3]
As a last note, be aware that most doctors and hospitals are now willing to
negotiate prices in this age of managed health care. You may find that you can
limit your out of pocket expenses by asking the providers to waive costs that
are not covered by you insurance, to accept the UCR (usual and customary rate)
or to limit your out of pocket expense to some
fixed amount.
Nancy [3]
Another hint to help the healing process: after all the scabs and open areas are gone, put
vitamin E oil on the scar. You can get pure vitamin E oil in small vials at
pharmacies or use the pills and cut off one end of the gelcap and squeeze out
the oil and rub it into the incisions. It seems to help the redness fade and
softens the scar so that it is not so raised.
The scar seems to be an issue of great concern for some people prior to the
surgery. My personal
recommendation is not to worry about the scar. Being alive and healthy is
far more important. As someone who has sported one almost my entire life as
the result of a valvuplasty at the age of ten and the RP at age 33, I find it
more of a source of pride. I remember seeing a news segment a few years ago
where a bunch of guys were proudly comparing their bypass scars. The moral of
the story is: It's good to be alive, and you can always find someone who has
a worse scar(s) that you do.
Most surgeons will tell RP candidates that there is a
possibility that they will not be able to do an RP, and will discuss what other
options (pros/cons and what type of valve) you would prefer if they are
unable to do the Ross Procedure? Typically the surgeon is not going to postpone your
surgery (especially if he has already invaded the chest and stopped the heart) but you
do want to make your non-RP wishes very clear to the surgeon ahead of time.
Ask your surgeon how he typically handles the situation.
Some surgeons will have a member of the team call or go to the waiting room
and explain the situation to your family, so make sure your family members are where
of your alternative choices as well. Others will just proceed with the
alternative procedure that you have agreed on, or may use an option that they
feel is best for your situation.
[3]
[3]
One method of diagnosing PPS is to draw a blood test called a sed
rate, that indicates an inflammatory response in the body if the test is elevated.
It is not necessarily definitive but can indicate the possibility of PPS.
[3]
Sometimes the nonunion can be just a small
section, often at the bottom of the incision, called the xiphoid area. That
is often non-painful, restricted to a limited area, and tolerated well by
many people, so often it is not treated.
For nonunion of the whole sternal bone, surgery
may be considered. It is called a "rewire" and the incision is opened,
sternal
wires are cut and the sternum opened, and sternal edges are abraded and
rewired. Usually people are in the hospital overnight and are not very
painful. Most are up that same evening of surgery walking and eating. The
procedure takes about 20 minutes.
In most people the decreasing pain in the sternum is the indicator of
healing.
[3]
Someone on the mailing list referenced the following book: "Coping With Heart Surgery
and Bypassing Depression: A family's guide to the medical, emotional
and practical issues". More information is available at
http://www.iup.com/heartbook/.
Acquired Immune Deficiency Syndrome (AIDS) is the most often
mentioned fear related to blood transfusions. Human Immunodeficiency
Virus (HIV) is the virus associated with AIDS. Blood from
persons who have been exposed to HIV can transmit the infection.
However, the donor screening and laboratory testing procedures now
being used for all blood donations
have been very effective in screening
out donors who test positive for exposure to HIV. The current risk
is estimated at 1:50,000 to 1:104,000 per unit of blood, including
screened blood.
Hepatitis B and C: Tests now used on donated blood have markedly reduced Hepatitis B and Hepatitis C
associated with blood transfusions. Even though new tests are constantly being researched, there is still a
small risk of transfusion-associated hepatitis. It is still possible that the hepatitis virus may be present in a
donation and not be detected by the test currently available for use. The
risk for Hepatitis C is approximately 1:500 per unit of unscreened blood.
It is also possible for some bacteria and parasites to be transmitted, but
these cases are rare.
Fortunately, many Ross Procedure patients do not require
blood transfusions, as the procedure can be performed with a minimal loss
of blood.
Directed donations is not supported in some areas, because
such directed donations have not been shown to be safer. One
reason is because of the spread of HIV and AIDS. Even among
married couples, for example, the percentages of infidelity are
high. People will generally donate blood for someone when asked,
even though they know they live a lifestyle that would put them at
a higher risk of diseases such as AIDS or Hepatitis. Furthermore, blood
donated in this manner may not be screened as closely as that from
anonymous donors.
If you are looking at directed donations (family and friends donate blood
for your surgery), you usually have to go thru the Red Cross or a commercial
blood bank that adheres to red Cross standards.
[3]
The Red Cross has some very strict standards mainly for the patient's protection,
and the increased popularity of directed donations means that you or the
surgeon's office need to be organized in terms of getting all the proper paperwork
to the Red Cross and getting potential donors to make appointments in a
timely fashion. If you delay there is no way
that a surgeon's office can "make" the Red Cross hurry the process along.
The Red Cross is a large bureaucracy that works within their own standards,
practices and protocols and
if your friend or family's blood is not acceptable to them, there is no way
that you or the surgeon can intervene. Again it is for your protection. You
might think the world of Aunt Jane, but if anything comes up in her
interview or in testing then the Red Cross will not allow her blood to be
processed and
sent to the hospital.
[3]
We always have 4 units of packed red blood cells and 1 unit of platelet
pheresis set up for all our RP patients. If the patient or family does not
donate then, that blood comes from the Red Cross. I would say that it is
infrequent that we give blood to RP patients, part of the reason is that the
PR patients are usually younger and they can usually tolerate lower blood
counts. My guess would be 1 in 5 RP patients receive some type of blood
product, either red cells, platelets or fresh frozen plasma.
Nancy [3]
[1],[2]
There is growing evidence that a pulmonary autograft properly
implanted into the aortic position will continue functioning
indefinately. The tissues of the patients own pulmonary valve
have not shown a tendency to calcify, degenerate, perforate,
or develop leakage over time even when transplanted into the
higher pressure aortic position. There have been a few reports of late
occurring dilation of the aortic root causing central leakage
of the autotransplanted valve. However, this problem occurred
before the technique of total root replacement was widely
adopted. It is now known that secondary root dilatation can be
prevented by reinforcing the aortic diameter with a cuff of
Dacron, Teflon, or native pericardium during implantation of
the pulmonary autograft. Post-operative studies now confirm
that leakage is present in only 10% of modern cases, and
usually will not progress.
Dr. Ronald Elkins from Oklahoma City has reported about 15%
of pulmonary homografts will contract or shrink within 6
months of implantation. However, this does not appear to
make a major difference in function of the homograft. Also,
now that a pulmonary homograft is seen as a
much better replacement for the pulmonary valve, the
overall results of the Ross procedure have improved. When
the right ventricular reconstruction is done with a pulmonary
homograft, the freedom from degeneration is 94% at 5 years
and still an admirable 83% at 18 years[Ross 1996].
[1]
In the "classic" era of the Ross procedure (prior to 1986),
there were some late failures. Of these, 73% initially had the
pulmonary valve implanted using the subcoronary ("freehand")
technique. Due to this higher rate of surgical failure, this
technique has been abandoned by most surgeons. Only 16% of the
failures occured in patients who had full root replacement
with the entire sino-tubular mechanism of the pulmonary valve.
[1],[2]
The use of artificial valve in small children is a problem, since
they do not perform well, and very young children cannot fit the
smallest artificial valve. Pediatric patients receiving artificial
valves will usually require further surgery as they outgrow the
implant. Furthermore, the issue of reliable
anticoagulation administration is troublesome in small children
and adolescents. Animal and human tissue valves used in small
infants tend to calcify and degenerate before the patient reaches
adult size.
1.2. Mechanical (prosthetic) Valves
A mechanical valve is made from artificial materials. Most commonly, the
mechanical valves are made from a material called pyrolitic carbon. This is
pure carbon heated and compressed in a trade secret process. The final
smooth surface is obtained by layering carbon formed into a gas onto the
surface of the compressed carbon. The resulting leaflets are very smooth
and resistant to thrombus formation (i.e. clot). Some components of modern
mechanical valves are made from titanium or a multi-metal compound called
Elgiloy.
1.3. Animal Tissue (xenograft) Valves
These first appeared in 1972. The porcine (pig) aortic valve is the most
widely used. The pig valves are made from animal heart valve tissue and
thus are relatively free from the risk of clotting. This is an advantage
in some patients who cannot take anticoagulation medication (pregnant
women, patients with brain aneurysms, bleeding intestinal sources, etc.)
1.4. Aortic Homografts
A homograft valve is a human cadaver valve (also called allograft).
These valves historically have had problems with sizing and suturing of
the valve, along with the expected problems of procurement and long term
storage.
2. General questions on The Ross Procedure
2.1. What are the disadvantages of the Ross Procedure?
No matter how much improvement has been made in the surgical
techniques for performing the pulmonary autotransplant
procedure, there are still some drawbacks.
2.2. What is the ideal candidate for the Ross Procedure?
Patients ...
2.3. When would the Ross not be the best choice?
In the older adult, coronary artery disease (CAD) is a additional
finding commonly discovered during the preoperative evaluation
of patients with heart valve disease. Significant CAD weighs
against doing a Ross procedure, since the combined complexity
of simultaneous coronary artery bypass grafting (CABG) and
the Ross is far too much surgery at one time. Thus patients
with CAD are usually selected for a mechanical valve.
2.4. Is the Ross Procedure an option for a woman wanting to have
children in the future?
women of child bearing age with aortic valve disease represent
a special challenge. Any valve substitute chosen for a female
patient must be durable enough to provide many decades of
uninterrupted performance. At the same time, mechanical valves
require Coumadin® to prevent thromboembolism (clot formation
leading to stroke or other tragic consequences). Coumadin®
taken by the pregnant mother can cause birth defects in the
fetus. Thus any heart valve replacement in a woman of child
bearing years must permit her to exist safely without the
burden of anticoagulation. Unfortunately, porcine or bovine
tissue valves, and human homograft valves do not last long
enough to be an effectively curative operation in a young
woman. [1]
2.5. What is the youngest age at which the Ross can be done?
Although initial results from the Ross Registry indicate
successful application of this procedure in infants, more follow-up is needed to validate the autograft
growth potential and long term clinical outcomes [2].
2.6. What if there is a problem with my Pulmonary valve?
This usually is not a problem. Typically, even if there is a
congenital deformity of the aortic valve,
the pulmonary valve will be perfectly normal. The doctors should
be able to determine the viability of the pulmonary valve using an
echocardiogram, though it is possible for a problem to not be
detected until the time of surgery. If the pulmonary valve were
found unsuitable, the surgeon would make a decision as to the best
valve replacement option for the patient, if he has not already
discussed options with the patient.
2.7. How can I contact others who have had the Ross Procedure?<
The ROSS-PROCEDURE mailing list is an unmoderated discussion list for
patients, family, friends, and others to discuss issues relating to
the open heart surgical procedure known as the Ross Procedure. The
primary purpose of this list is to offer support for those that may
be undergoing this surgery, and to provide a way for people who have
already had the surgery to communicate and offer support to others.
There are over 100 subsribers on the list,
many of whom became members prior to surgery, and have stayed on
to share their experiences after surgery.
listserv@maelstrom.stjohns.edu
"SUBSCRIBE ROSS-PROCEDURE first-name last-name"
3. Finding a Surgeon
3.1. How do I obtain information on the Surgeon?
The most important thing to do is check your surgeon out
thoroughly. If you are doing this as an elective procedure,
it is best to
ask questions and do some research. If you have a good
relationship with you Primary care M.D. or cardiologist,
they can help you with some of the technical research.
Despite the fact that there are laws now
entitling you to full disclosure, there often is a don't ask don't tell
policy at teaching hospitals. If you end up at a teaching hospital,
ask to have it placed in writing on your Operative Permit that
Dr. X is to be your primary surgeon.
Have your cardiologist check with another physician (preferably a
heart surgeon who does not do ross procedures) who they recommend, and
who is well thought of in the cardiac surgery community. Remember,
often a surgeon is well thought of because he publishes a lot and is
not necessarily the best technician in the Operating Room.
3.2. What can I expect when I meet with the Surgeon?
Generally, the surgeon will review your case, may discuss the available options,
and why he feel the ross procedure is the best option for you. This is usually
your best oppurtunity to ask questions question you may have about the procedure.
3.3. Is it possible to do a long distance consult?
You can do a long distance consult--to tell if you are a candidate for
RP. Actually the surgeon could do that by looking at the echo or cardiac cath
film and reading your records. Most of the time you will want to meet the
surgeon and know that his/her personality is acceptable to you. Most RP surgeons
are used to dealing with patients who are coming in from out of town, or even
outside the USA, so the office staff should be able to talk you thru the
details of how to set everything up if you are out of state.
3.4. What can I do to make sure the consult goes well?
If you have had a cardiac cath or an echo done, get the copy of the film
itself. The echo will usually be on a video tape and the cardiac cath may
be on a CD, video tape or film that is played on a Targano machine. Get the
film yourself and bring it to the office or drop it off with the surgeon
yourself.
3.5. After my surgery, my surgeon said he wanted to see copies of my annual echos.
Most surgeons should want to see your annual echos. The ones that want to
see you back every year may be working on publishing something; that
in part is why we see all our RP patients back every year. Most surgeons
maintain statistics on their RP patients. If your surgeon does not
want to see you back or at least see your yearly echos, I would be a little
suspect if he quotes you stats regarding: failure of RP.
4. Surgery related questions
4.1. How is the heart stopped?
The pumping action of the heart is suspended by infusion of a
high potassium solution in the coronary arteries.
4.2. Why is the body temperature of the patient lowered?
The body temperature is decreased to 27 degrees Centigrade.
Cooling helps preserve the body tissues and the heart muscle
during the physiologic alterations characteristic of heart-lung
bypass and open heart surgery. It also reduces the oxygen debt
requirements of the body while connected to the heart-lung machine.
4.3. How long does it take to know whether the operation was successful?
In most Ross Procedures, the result can be immediately assessed
in the operating room using transesophageal echocardiography.
The presence of
leakage, blockage, kinking, or other possible distortions of the
implanted autograft (or even cadaver pulmonary replacement) can be
visualized, and appropriate steps taken if necessary. Once the
physiology and anatomy of the result has been confirmed and the
patient stabilized, the incision is closed and the patient returned
to the intensive care unit.
4.4. Where kind I find a detailed account of the surgery on the
internet?
At
http://www.hsforum.com/heartsurgery/TLC/Ross/RossTechnique.hsf.
This information was put together by the Indiana University Medical
Center.
4.5. Why did they shave me from my neck to my toes?
I'm still trying to get an official answer on this one. The chest area is
obvious, as there is a large incision there. The groin area is
in case the heart/lung machine needs to be hooked up in a hurry. Nowadays
the machine is hooked up via the chest opening, but in an emergency, there
are major arteries easily assessable in the groin area. The legs, I surmise,
are sometimes shaved should they need to harvest a vein for the coronary arteries, though
this probably rarely happens.
4.6. How are the homograft valves preserved?
The tissue is soaked in a chemical product known as DMSO. DMSO
is the preservation medium. It displaces water from the tissue
at the cellular level. Water has to be driven out of the cells,
or when it is frozen it will cause ice crystals that will damage
the cells (causing cellular rupture). Once the tissue is
saturated with DMSO it is placed in liquid nitrogen which is
cooled to a temp of 100-130 degrees below zero. This causes the
tissue to freeze instantly and minimizes the damage to the
tissue. The allograft is then rock hard and has to be handled
very carefully. If dropped (and they have been dropped according
to the co. rep.) they will shatter into pieces. When the tissue
is shipped it is kept frozen and "dry packed". When it gets to
the operating room there is a slow procedure of warming and
dilution to get rid of the DMSO and unfreeze.
4.7. Are there any rejection issues with the homograft valves?
In regard to rejection, my understanding is that the cryo-preservation
technique used removes the antigens from the tissue and that you do
not have the issue of rejection with this type of tissue. Antigens are
small substances on the cell that triggers the production of antibodies and starts
the process of destroying or rejecting the tissue. This is the reason why
when you get a homograft you do not have to undergo the process of tissue typing and
matching tissue types with the homograft.
4.8. What issues should I think about if I'm travelling out of town for the surgey?
Check out the hospital's resources. Many large surgical centers have rooms
available in the hospital to accomodate your family. Also realize that there
will probably be follow up visits with your surgeon.
Since you will need to make yearly follow up visits, you may
wish to concentrate your surgeon search in a geographic area, such as near family or
an area that is easily accessable by air travel.
[3]
4.9. What if my insurance limits my choice of surgeons?
A lot
of HMOs can be very difficult regarding payment for Ross Procedures.
4.10. Is'nt there is a less invasive technique, where a small incision is used?
The mini-sternotomy is a possibility, but there are very few surgeons who
offer it with RP. RP is a technically difficult surgery and many surgeons
want to have a very good view of the operative field. With mini's there are
some aspects of the surgery that are done with less than optimal view of the
surgical field. We do both minis (not for RP but certain other procedures)
and regular sternotomies, I have to say--I do not see any real difference in
length of stay in the hospital, complaints of pain or general recovery. This
is just personal experience--we are currently tracking the minis and are
working on a paper re: length of stay vs regular sternotomies. But I have
really not compared the data recently. Personally I would choose the surgeon
based on experience with RPs. If your surgeon offers you a mini sternotomy
with an RP I would question them as to how many mini sternotomy RPs they have
done. There is a learning curve to doing the surgery thru a mini and I
certainly would not want to be one of the first few patients that the surgeon
has done thru a mini.
4.11. How long will my scar be?
The length of the scar or incision depends on body size and the size of the
sternal bone. A tall person may have a scar up to 10-11 inches long, a
smaller person may have a smaller incision, may be 7-8 inches long.
I know that sounds terrible but after a period of time (6 months to a year)
the scar fades to the point were it is really hard to see.
There typically is not a great deal
of pain in the incision area, due to the comparatively
few nerve endings in the skin and bone at that area. Most
surgeons now use the sutures that dissolve and use the subcutaneous technique
that results in a scar that is a nice little thin line.
[3]
4.12. I've heard of patients who go in for the RP and come out with a homograft valve.
Normally a TEE (transesophageal echo) is peformed immediately before the surgery and
immediately after the surgery. The TEE provides a much clearer picture of the heart
than a normal Echocardiogram. It is possible that during the TEE or during the
surgery after the chest is opened, that the surgeon may determine that the RP is not
the best option due to the condition of either the aortic or pulmonary valve. This
could happen in a situation where the aortic root is extremely dialated for example.
5. Recovering From The Surgery
5.1. How long will I be in the hospital?
The average length of hospital stay is about 5 to 6 days.
5.2. When can I start driving a car again?
You'll probably be told to not drive for the first four
weeks after the surgery. Going straight ahead is not really a
problem, its things like twisting to look to your right or left,
and turning around when you back up
that are a little painful. It takes about four weeks for the
sternum bone to heal. Patients are usually also told not
to lift any weight over 5 pounds.
5.3. Why did I have so much back pain after the surgery?
A lot of patients complain about upper back pain, especially between the shoulder
blades. The pain is from rolling the shoulders
in to try to minimize the pain felt in the sternum (breast bone).
Tipping your shoulders forward reduces the pull or pain in the sternum.
Heat, massage anything you would do to help a pulled or strained muscle will
help. Ultimately what helps the most is when ever you think about it, try to
make sure to stand straight and not allow you shoulders to tip forward.
5.4. What is PPS?
PPS (PostPericardiotomy Syndrome) is also called
Post-MI pericarditis and Dressler's Syndrome. It is
caused by inflammation of the pericardium (the sac-like covering
of the heart) that causes blood to be present in the pericardial sac. It is
an inflammatory response to the blood in the pericardial sac. There can
be a variety of symptoms, which can include a low grade fever, fatigue,
"achy all over" and chest pain.
The usual treatment for many post op heart surgery patients is NSAIDS
(Ibuprofen).
5.5. How do I know that healing of the sternum is progressing okay?
Normally nonunion of the sternum is indicated by a popping or clicking sound
of the sternal bone when you cough or breath deeply. However, it is possible
to have nonunion and be completely painless.
5.6. I struggled with depression after the surgery.
Apparently this is fairly common. I'm not a clinical phsychologist, but I
would suspect that one of the reasons for depression is due to a bit of an emotional
backlash. I would guess that this time of one's life is a very intense
experience for most people, with a great deal of anxiety before the surgery.
It's probably also a time when one is the focus of a great deal of attention
from family, friends, co-workers, etc. After the surgery, as you recover, and
finally get back to the day to day grind of life, most of that extra attention
disappears, and maybe that is a part of the feelings of depression for some people. For
a while, a large part of your life involves the surgery in one way or another,
and suddenly, all of that is gone about 4-6 weeks after surgery as you really
begin to recover and return to work and a normal life.
6. Blood Transfusions
6.1. What are the risks of blood transfusions?
The risks associated with surgery itself are higher than
blood related risks.
6.2. Can I donate my own blood for transfusions?
An autologous donation is a method by which a patient’s own blood is
collected to be stored until transfusion is necessary. Prior to
donation, the patient must be evaluated by his or her own physician to be
sure it is safe to donate. So if the surgeon reviews your situation and
determines that he/she is uncomfortable with you donating your blood, it
may
be with good reason.
6.3. Can friends or relatives donate blood?
Directed donations, that is donations from relatives or friends
specified for a certain patient, may be supported by your local
blood agency.
6.4. When would I not be allowed to donate my own blood?
It can be dangerous for some people with Aortic
Stenosis to donate their own blood, as decreasing the body's blood volume
puts too much strain on a heart that is already stressed.
6.5. How do I donate my own blood?
Start by checking with your surgeon's office and with the hospital
where the surgery is being performed. You can call the hospital
and ask for the "Blood Bank" and check on their policy. Some hospitals
handle autologous blood donations themselves. You should also
ask about how long prior to the surgery you should begin donating blood.
Directed donations can take 3-5 working days to process, test and transport to
your hospital.
6.6. I found the Red Cross difficult to deal with.
Yes, the Red Cross can tough to deal with and they will not flex in the
least little bit.
6.7. Are there any costs associated with donated blood?.
Typically there are costs related to processing,
testing, transportation and storage of the blood, regardless of whether
it was a Directed/Autologous donation or is coming from a "blood blank".
6.8. How many RP patients need a blood transfusion at the time of operation?
I doubt there is any definitive study on this, that can actually quote
percentages. But whenever you are working near a high pressure structure
like the aorta--there is the potential for bleeding. Most heart surgery
centers will use a process during surgery called cell saver. The blood from
the operative field is salvaged and spunned down and filtered and the red
cells are returned to the patient. The other problem with RP is that it is a
long procedure, and the patient is on the heart lung machine for a longer
period of time, that causes damage to platelets. The less functional
platelets around in the blood stream there is an increased risk of some
generalized oozing or slow bleeding.
7. Long Term Results
This information primarily comes from the Heart Surgery Forum.
7.1. Overall Results
The first Ross Procedure (pulmonary autotransplant) was performed
in 1967. However, the current surgical techniques were not refined
until at least 1976. Since that time, the results have improved
dramatically. Postoperative patient survival at 20 years is
an impressive 80% overall. Of those, 85% had not required reoperation,
and 75% were free from any other event, including endocarditis.
7.2. Reoperation Rates
Ross and colleagues followed 339 patients for up to 24 years
following surgery. Only 15% of surviving patients
required any additional valve procedures and most of these
were for replacement of the homograft valve used to replace
the patients pulmonary valve, not the aortic substitute.
Fortunately, it is easier to replace
the right ventricular substitute (the pulmonary valve).
Follow-up of recent Ross cases where a human pulmonary artery
homograft was initially used to reconstruct the right
ventricular outflow tract has shown a remarkable freedom from
failure (94% at 5 years, 83% at 20 years). Although pioneered
solely by Mr. Donald Ross of London, England, surgeons in many
other centers throughout the world are able to reproduce
similar excellent results with the Ross Procedure.
Reoperation rates for failure of the autotransplant and/or the
right ventricular homograft are neglible in most centers (less
than 10% at 10 years).
7.3. Ross Registry Data
The International Ross Registry
includes data on over 2,000 Ross procedures performed by
126 surgeons
throughout the world. The average age of the patient population at
the time of surgery was 28.7 years. Seventy-three percent of the
patients were males. Over half of these cases were operated for
congenital aortic valve disease, such as bicuspid aortic stenosis.
Over 30% of these patients had undergone heart surgery at some
time before the Ross procedure was performed. The combined operative
mortality rate for the over 2,000 patients in the Registry
(including small babies) was 5.4%. However, in stable adult patients
undergoing elective operations, the mortality rate is now below
1%[Ross 1991]. The incidence of post-operative bleeding requiring
reoperation was an admirable 0.9%. The symptoms or
findings of aortic valve disease were relieved or greatly improved
in all patients. Follow-up echocardiograms revealed only trivial or
mild valve leakage in the vast majority.
8. Pediatrics and the Ross Procedure
8.1. What are the problems of valve replacement in children?
The most common valve problem in children is aortic stenosis.
The small, malformed aortic valves in these children are very
difficult to repair. Stenotic valves can either be dilated with
balloon catheters or surgically incised to increase the opening.
These solutions often require repeated surgery, as the valve can
calcify and restenose.