Surgery after CMML

[CarolineG]

I am wondering if anyone has an opinion.

My Dad has CMML and Chronic Kidney Failure. He had a C-Diff bowel infection at the end of last year which took 4 months to erradicate.

Now one of Dad’s knees has completely given out and his Family Doctor is encouraging him to have a knee replacement. Dad was scheduled for one in February but the Orthopedic Surgeon cancelled out based on Dad’s overall health being too poor.

Here we are only 4 months later. Dad seems to feel fine although he is weak and tired. His blood counts and kidneys are fine. On good days he can work in his yard, go for walks and he doesn’t sleep as much as usual.

WHY would the doctor decide to potentially put Dad back onto that horrible roller coaster that he just came off of? Dad’s Oncologist and Nephrologist have both said that they don’t need to see him until the end of the summer. His GP is putting the wheels in motion for the knee surgery now. He told Dad yesterday that the surgery would NOT affect his CMML or Kidney Disease. How can that be???????? Dad will need strong pain killers after the operation which he is not allowed to take because of the kidneys. And, if he bleeds…which he most likely will…..that will affect his blood.

Dad had his other knee replaced twice already so we know what kind of an exercise regimen he will be expected to be on for awhile. There is no way that Dad will be able to get up and exercising as much as he will need to every day. He has good days and bad days now and he is considered to be doing very well all things considered.

I am thinking that I should inform the Oncologist and Nephrologist of what is going on. It will put me in hot water with everyone again but I would rather those 2 doctors make the decision instead of the GP who is scaring Dad into having the surgery done.

Does anyone have any ideas? Am I over-reacting? I don’t think that I am.

Thanks,
Caroline

[Neil]

Hi Caroline,
Get his oncologist and nephrologist involved in the decision. Sooner the better.

[CarolineG]

Neil,

Does it sound like a bad idea to you?

Caroline

[shirlsgirl]

Hi Caroline,

I agree with you and Neil and I don’t think you are over-reacting at all. Absolutely a good idea to consult with his oncologist and nephrologist. Best of luck to your Dad!

Take care,

Jody

[patti]

Caroline,

My eyebrows are all screwed up right now. Why would his GP think is a good idea? This surgery for a healthy person his age is difficult enough. Is there a chance they can just let this go? How mobile is your dad if they don’t do the surgery? He might not have a lot of time left, but this just seems like it would shorten things even more so. I have to echo the others, see if you can get his hemo/onc. to veto the surgery.

Patti

[Neil]

Hi Caroline,
For most people have a knee replacement isn’t much different than taking your car in for an oil change.
BUT— YOUR DAD ISN’T LIKE MOST PEOPLE!
Most GPs do not have much knowlwdge of the effects of MDS. His entire medical team must be involved in the decision and process.
Did the GP disregard the MDS issue entirely?

[Jimbob]

Caroline,
I was diagnosed with CMML during an annual physical when my major complaint was pain due to extreme RA in the left knee. I wanted surgury or something. My primary care physician said no way should even microsurgury be done after the CMML was diagnosed because my ability to fight off infection and heal would be so limited that no surgeon would risk attempting it. Bad news added to bad news became good news somehow. After the SCT, my kneee is painfree! Now to get rid of continuing chronic fatigue and pain from periphial neurapathy in feet. Also, just before SCT, I had an extreme gall bladder attack and it HAD to be removed but the BMT doctors had to approve that before the surgeon would even do the simple microsurgury for that.

[Rackon]

Let me offer a slightly different perspective.

I’m not saying you are wrong to be concerned – indeed not! Most GPs and internists don’t know squat about MDS much less CMML and you definitely need to be cautious…but…

My 86 year old dad, diagnosed with CMML four years ago, got along fine on Aranesp injections until last February. He still drove and got around on his own independently, even worked his consulting business part time. He slowed way down when the the Aranesp stopped, and his transfusions weren’t holding well either – he needed at least one a week. His kidney function was about 18-20%.

He had just been on Revlimid therapy a little over 2 weeks when he fell and broke his hip April 22. No question, he needed hip replacement surgery – for only the ball, but still…with 20% kidney function and weekly transfusions you can imagine the state of worry I was in.

Dad got through surgery fine. (Was given a spinal rather than a general anesthesia.) The docs monitored his blood counts like hawks both before and after surgery, the physical therapists were careful, and his Revlimid appears to (maybe) doing a little good as he is now averaging 2 – 2.5 weeks between TXs with HG counts in the mid nines. He will probably be home from rehab which – although it has been no picnic – has been doable, though as you can see, rather long.

Dad was only on strong painkillers for a few days before and after the hip surgery – with his nephrologist’s blessing BTW. He doesn’t like strong pain medicine and thus scaled back as soon as he could, and then only at bedtime. He’s been taking extra strength Tylenol at bedtime. Yes, it’s been painful. But not unbearable. He says. He wants to be able to get up and around – had he not had the surgery his quality of life would have been doubtful at best. He wants to come home and be able to get around, even with a walker or cane. This would not have been possible without surgery.

Will this episode hurt his kidney function? Well, it won’t help it. But what choice did we have?

Now, I understand there’s a big difference between a hip and a knee. Your dad may not *have* to have the knee surgery to get around. Also, my dad’s WBCs are usually in the normal to low normal range – he has had no major infections lately – plus his platelets are also usually in the normal range. Every person is different in their reaction and coping with this disease, and each person reacts differently to surgery.

By all means consult with both your hematologist and nephrologist. I wouldn’t take this step without it. OTOH, their reactions may surprise you. A lot depends on where your dad’s health is *now*. His recovery team at rehab, should he have the surgery, will have to be aware of his limitations. My dad’s recovery has been slower than it perhaps might have been for someone without CMML, but he IS recovering.

As with all surgery, you and your dad will have to weigh the potential risks against the potential benefits and make an informed decision.

[patti]

Hi Caroline,

The one caveat that I have to throw in to Rackon’s response is that we live in the US and you live in Canada where it seems like you have difficulty getting good docs. So my concern would be finding a hospital and docs that will follow your dad like a hawk as Rackon mentioned because that would be so important. So, just one more aspect for you to think about.

patti

[CarolineG]

Hi Everybody,

Thank you for all of your input.

I don’t know what to think. I suppose if I had any respect at all for Dad’s GP I would feel a little more at ease. This guy doesn’t care at all about elderly people. He is all about young athletes. They get long visits and lots of care. Elderly people get blown off. He has been like this for years.

Dad fell on the ice in January and hurt his shoulder badly. I took him to the GP twice to have it looked at. I asked for an X-ray….”NO. It’s nothing at all. Just a little bruise that will heal.” Well….yesterday my Dad took apart their washing machine to fix it. When my son got there to cut the grass he helped Dad reassemble the machine. They had to also move it back into its spot. Danny did most of the lifting but let Dad think that he was doing his part. When they slid it back into place Dad started to cry, which Dan has NEVER seen him do. He told Dan that his shoulder still hurts as much as it did when he first fell but he tries not to show it to anyone since the doctor said it was ‘nothing at all’. Now, if his shoulder, which was not broken but probably dislocated, didn’t heal after 6 months I can’t help but wonder whether he will heal after they remove his knee and put in a plastic one. Twenty years ago he had the first one done and he was perfectly healthy back then. His body rejected it and he had to have another replacement done 2 years later. THAT knee also never healed properly because his body didn’t like it either. I can’t see that almost 20 years later he will cope any better especially since he is now sick with CMML and kidney failure to boot.

We don’t visit the Oncologist or the Nephrologist again until September. GP is planning to start arranging for the surgery already before we have been given the go-ahead. Apparently since the surgery will not affect either of his diseases, neither specialist needs to be involved or needs to give consent. I really have no leg to stand on here. Even if I phone both specialists…which I intend to do as soon as the GP makes the referral to the Orthopedic Surgeon…..they cannot stop this from happening, nor do I think that either one would try. They would not be allowed to interfere unless the GP or the Ortho went to them. We have some kind of a new Privacy Act here which prevents anyone from knowing anything so the Oncologist and the Nephrologist would not go ahead and involve themselves unles DAD involves them…which he doesn’t think he needs to do since Dr. GP told him, “I think we can take care of this by ourselves.”

Rackon, I can only hope that my Dad has the same kind of success that your Dad is having.

I’ll give you just one little tidbit of our experience. Last September Mom took Dad to Emergency because of abdominal pain. It was a Friday. After 10 hours they sent Mom home to rest…she is also terminally ill. To save me grief, Mom DID NOT tell me what was going on. I was at work…which I have since quit so that I could be available to help more. Mom went back to the hospital after 2 hours and Dad was gone. They sent him by ambulance to another hospital in another city. We used to have specialists on call on weekends in every hospital but the government changed that and they put 4 cities together in our area and have one specialist on call for everyone. Dad needed a Urologist. Our city’s Urologist was not on call that weekend so they took Dad to where there was a Urologist on call. So, that was fine. Nobody at our hospital would tell Mom where they moved Dad. She panicked and came to my house. I was on the phone for THREE hours phoning around looking for Dad. We didn’t even know what his diagnosis had been so we didn’t know what kind of specialist he needed. I don’t know how it happened but finally a lady whispered on the phone, “He’s here at this hospital on the fifth floor” and hung up. So, I phoned up to the fifth floor to ask what the heck was going on. The nurse was not allowed to tell me anything except that he had survived the ‘procedure’ and that we could visit the next day. Hmmm…procedure…what the hell???? Anyhow, Dad had stents put into his kidneys for stones and they released him 2 days later. Within days he became infected to the high heavens and also got a C-Diff infection which nearly killed him and took 4 months worth of hospital visits to put dormant. About 2 weeks after his ‘procedure’ I took Dad to the Urologist’s office who had done the surgery. He actually leaned on the wall from shock when I told him that Dad had Leukemia and Kidney Failure and C-Diff problems. The guy told me that Dad was brought in with NO paperwork. I guess the ambulance delivered Dad before his chart was faxed from one hospital to another. This doctor told me that the C-Diff flare up came from the antibiotics which had administered during the surgery and that if he had known that Dad has a propensity to C-Diff he would have used a different antibiotic. Also if he had known that Dad has Leukemia and kidney failure he would have had blood ready to give to him if needed. He apologized that Dad came close to dying because of a paperwork error.

Sorry to be so long winded but this story takes awhile to get out. Can you see why I’m concerned? I feel like I need to stall this operation until I can get everyone concerned with Dad’s health plan on board but I don’t know how. As the GP said to me once. “Your Dad is an adult and an individual. He can make his own decisions whether he gets confused or not.” He doesn’t even want me to go along to Dad’s regular visits anymore. He thinks that Dad is healthy enough to come alone now. Yeah…he wants Mom and I to stay away so that we don’t second guess him.

Thanks for your advice and help.

Caroline

[patti]

Caroline,

I will admit I do not understand the canadian health system so please forgive my ignorance. I know you can’t see any specialist without a referral but can you change your dad’s GP without permission? I remember you saying your parents love this guy but considering the state of health they are in can you just take the bull by the horns, change doctors and then tell them after you’ve done that? I know that sounds drastic but this guy sounds like he has no interest in your dad’s best interest. If, by law, his doctor’s aren’t allowed to talk to each other how on earth is he supposed to get decent care???????

I’ve said it a million times before and I’ll say it again – I hope the Americans on this board are listening – SOCIALIZED MEDICINE IS NOT THE ANSWER!!!! I hope I’ve said that loud enough so that even those hard of hearing could hear me. And this is coming from someone who has no health insurance, we pay as we go, because I can’t get a D— insurance company to cover me. But socialized medicine will never be the answer. Okay, I’ll get down from my soap box now.

Caroline, I’m sure you probably can’t just change your dad’s GP like that, it just makes me mad that Canada is putting you through this. Is there any chance on earth you guys could come to the US for treatment???

I cannot imagine being in the spot that you are in. You may just have to sit back and let your parents make decisions. All you can do is tell them what you think and pray hard that they’ll listen.

Hang in there,

patti

p.s. I owe you an email.

[CarolineG]

Hi Patti,

If I were to phone a GP’s office, by law they don’t have to tell me that Dad is a patient there.

IF we find a doctor who is willing to take on new patients we can change doctors but in our geographical area it is difficult. We have more people than doctors to service all of us.
I don’t think it is like this throughout the whole country. Our particular area has had medical shortages for a long time.

Our family just seems to have bad luck where communication is concerned.

As far as going to the US for treatment, I don’t think that I could convince them to go.

In the meantime, I try to keep coming up with ideas that unify everyone. I found out today that the neurologist wants an appointment sooner than the fall and he will see Dad before his next GP appointment so I will mention the situation then and see where it leads us. There is a silver lining afterall.

Thanks for all the help everyone.

Caroline

[patti]

Caroline,

Oh praise God! I’m so glad to hear you’ll be able to get him to one of his other doctors first. Maybe that doc will talk him out of it.

Always a silver lining isn’t there? Hang in there. This is such a hard battle. I’m not sure what’s worse. Taking care of aging parents or fighting with the docs.

Take care.

patti

[Britt]

Dear Caroline: I can only imagine how distraught you must be over all of this, especially considering your past experiences. Why is your dad considering his GP’s advice without speaking to his oncologist first? Does Canada have ‘authorization’ forms that your dad could sign authorizing them to give you any medical information you request concerning his health and health records? Just a thought.

Please keep us apprised of what transpires from here. Shame on his GP for being too pig headed and egotistical (or is that stupid?) to consult the oncologist first. Who does he think he is? God?

Sorry, I must have gotten up on the wrong side of the bed this morning, perhaps I will go back and try again.

Britt

[CarolineG]

This GP has a real way with people. I can’t explain it but I have seen it. Especially elderly people flock to him and hang on his every word.

I don’t know if there is a standard authorization form. I will check though. So far, Dad has had to give verbal authorization to speak to me at every hospital visit. During his infection he would go into the hospital by ambulance, stay for 8 days or so and then come home for about a week. Then it would begin again. Each time we arrived at the hospital they would refuse to speak with me unless Dad was coherent enough to tell them that I am his daughter and that they can speak with me. Then they would write it in his chart and I was part of the group. Once he was delerious for 3 days at the beginning of his hospital visit. He didn’t make any sense when he spoke. Nobody at the hospital would speak with me…not even the GP who had phoned me everyday during each prior hospital stay. After 3 days, Dad told everyone that they should talk to me. Then things got easier for all of us.

I am happy that Dad only told each of his specialists ONCE that they could speak with me and they do. I can phone them at any time and they are quite happy to help me. Their attitude is that it will take us as a group to help Dad. We can’t each individually help him.

Thanks,
Caroline

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