How do you spell frustration…..

[Luke and Margaret]

We have two docs who are not on the same page re vidaza. One set up prescribing, got us access, and we have been fundraising our faces off at the suggestion of his colleague. We had half of the costs covered after only one week.

We wanted one thing… for our local oncolgist to do an updated bone marrow so we knew we weren’t wasting time and money. He refused, and feels we should not be going that route. He actually seems to be peeved at me for “making” this happen!

Poor Luke… he is sick and in hospital, and only he can make the difficult decision about what to do next. I don’t think I have ever been more frustrated than I am at the moment!

Has anyone else had a similar experience? How did you deal with it?

Details of the sad saga are on our blog,
http://lukeandmargaret.blogspot.com/
Margaret

[Caroline]

Luke and Margaret.

As if you don’t have enough to think about !!!! I am so sorry that you have to go through this.

You are in my prayers.

Caroline

[patti]

Margaret,

I would dump the hematologist that knows the least about MDS and go with the specialist. Literally. These decisions are too difficult to make already without having doctors fighting. The other option would be to tell these two doctors to get on the phone with each and get on the same page or your going to dump one of them. If one of them says “fine” dump me, then you’ll know which one really doesn’t care. And maybe, just maybe, they’ll actually talk things out and get on the same page. I would set a time limit. Tell them by Monday or something so that you and Luke can make an solid, informed decision about what to do next. Also, if you have one that’s more conservative then another, aim for the more conservative of the two – that one will always error on the side of life. Just my two cents worth.

I’m sorry you find yourself in such a yucky situation. I’m not sure if you have a strong personality but now would be a good time to get one quick!

Best wishes,

patti

[Luke and Margaret]

Patti et al
I had a conversation with our local oncologist today very similar to the one you suggested. I Told him that in the matter of vidaza I needed the two of them to talk to one another and communicate a single message. That I did not appreciate being sent on a wild goose chase; it is no small matter to raise 60K, and we turned the world upside down to do it.

Unfortunately I choked up when I did it; why is it that at times when you wish you could breathe fire you end up as a rain cloud?

Nontheless, we seem to have communicated some essential information about the lack of current match for a stem cell, the pressure to access vidaza before any transformation takes place, the degree to which the entire network to aquire it is already set up, and a much better sense of why the doc would like to hold off a little longer.

I agreed with him; if we still have a little time to work with, it would make a lot of sense to actively rid Luke’s body of any pre-existing sources of infection. If Vidaza makes the blood levels drop, then we have some work to do to strengthen him as much as possible before we give it a shot. There appears to be agreement on considering vidaza as an option, and on how closely to monitor his blast levels.

Every hospitalization takes such a lot out of Luke. Today his platements are low, and his hemoglobin is at “time to tranfuse” level. His appetite is not up to par yet, but he’ll have to force himself as we have a lot of ground to catch up.

The problem, as I suspected, was a cold. From now on any person entering this house with a virus of any description will need to follow infectious diseases protocol, if they need to enter at all.

You’re right. This is hellishly difficult. Complications like conflicts with health care providers are totally and avoidably draining. I keep wondering – do docs really expect you to leave it all in their hands and not worry our pretty lil heads about such lofty matters? If so, they need to have a look at the medical system around them. To survive it, patients practically need a body guard to ensure the right things happen at the right time. Any God complex I may have had about health care providers went out the window many, many weeks ago. *sigh*
M

[Caroline]

Margaret,

We are going through something similar. Our Oncologist takes care of Dad’s Leukemia. Dad’s Urological ‘team’ is taking care of his kidneys. BUT….they are not sending notes to one another and any notes that are lucky enough to get from one office to another are being overlooked while they keep doing test upon test. In the meantime my Dad is weakening at an alarming rate. His Eprex is helping but he is bleeding from his kidneys so the good blood is leaving him instead of strengthening him. Therefore his hemoglobin is hovering at the ‘transfusion’ zone. In the meantime, the doctors are all doing their part but none of them are listening to the one who knows Dad’s entire history….his Oncologist/Hemotologist. Now, the Oncologist is trying to get the other doctors on the phone to TELL them that they all need to work together. I waited by the phone all day for further instructions but there was no call. I have had to call in sick to work tomorrow so that I can wait by the phone again for the office to call me. I don’t think we can leave Dad until next week without some kind of medical intervention. He needs to be placed in a hospital where the doctors can come to him and each have their say instead of Dad and I running from town to town seeing each individual Specialist and doing things that contradict each other. Talk about frightening !!! I am only glad that Dad isn’t in pain. He sleeps….that is all he does now…sleep. He got up long enough for me to go and give him his Eprex shot thismorning. Then he went back to his sofa and I went home. I wish he could LIVE again.

My prayers are with you and Luke. Keep the faith and keep fighting. You find how much strength you really have when you are put in this position, don’t you? I sure have. I have learned to be quite pushy.

Caroline

[patti]

Margaret,

Bravo to you for standing up. Even if you felt like a rain cloud. You did it. If I’ve learned anything this past year of mom’s illness it’s been that I have to advocate for her because she doesn’t have the energy or sometimes even the desire. You have to advocate for Luke all along the way. He will do better for it. If you can get him on some immune building supplements it will go a long way towards healing him.

My best wishes for better days ahead.

Patti

[alexandra7]

Margaret
Here in Romania doctors don’t really take care of you if you don’t give them a fat “tip”(you have to pay them separately although we have health insurance and we pay taxex and everything)And even so they are not to interested in makinng you better they just act with a little more compasion. I personaly started taking care of my self ,Taking decisions after informing my self about the risks and the benefits . I have a friend who is a doctor and he explains some of the things although he is not a hamatologist.What I mean to say is that I can understand you frustration and I am sorry you have to go through such a period.Best wishes to you and have hope.There will be better days
Alexa

[Luke and Margaret]

Caroline
What a horror story. I am so very sorry. Here’s hoping the “team” starts acting like a team soon.

Alexa
Just when you think you’re bottoming out, someone comes and tells you a story that reminds you to be grateful for what you have. Holy geez. Romania is not a place to be sick, is it? I’m glad you found us; there is a phenomenal amount of helpful information on this web site.
Margaret

[Caroline]

Margaret,

I hope you and Luke are having a better day today.

I was supposed to phone the Oncologist’s office today to find out if he sorted things out with the Kidney ‘Team’ and I would get some instructions regarding Dad for the weekend. He is weakening by the day and we need to do something NOW. I think he is becoming toxic. His creatinine levels are rising and he is bleeding in his urine. Well, I phoned thismorning and wouldn’t you know it….The office is closed until Monday in honour of Rememberance Day. I have never heard of a ‘Stat’ Holiday for Rememberance Day. I spent all night rehearsing my ‘Bitchy Speech’ making demands that they hurry up and do something to help Dad. Then there was nobody there to crab at. Once I decide to come out of my shell and assert myself and I get a voice recording.

Blessings,
Caroline

[eve]

if your dad is bleeding i would get him to an emergency room right away –

eve

[gemloyear]

Caroline. Eve is right, I would not wait.

Ellie

[shirlsgirl]

Hi Caroline,

If you take your Dad to emerg. I’m sure they’ll see him pretty quickly. ….on the side, my background is microbiology, so whenever I hear blood in urine I think infection…but, I’ve just been reading a little and looks like there are other causes of blood in urine. I’m sure you’ve already done a lot of reading but here’s another site that looked informative if you’re interested.
http://www.kidney-failure-symptoms.com/html/diagnosis.php3

take care,

Jody

Jody

[Caroline]

Eve, Ellie and Jody,

When Dad his the stents inserted at the beginning of September, he was told by the Urologist that he would bleed into his urine for a few weeks. That was normal. I phoned The Urologist earlier this week and spoke with him and he said that since Dad is so old, the stents will cause bleeding and that it is a good thing that he gets Procrit/Eprex to keep his hemoglobin up. If the Urologist had been told that Dad has Leukemia and was in this condition he would have never operated…emergency or not.

You see, Dad’s visit to the hospital was an emergency visit back in September and they transferred him out of town for the surgery on a Friday afternoon. The Urologist who performed the stent operation DID NOT know that Dad has Leukemia. Our BRILLIANT hospital listed our Oncologist as Dad’s Family Physician. A week after the operation I took Dad back to the Urologist for a follow up consultation. He nearly fell over when I told him that Dad has Leukemia. It actually just fell into the conversation. I thought the guy was going to pass out. He was pretty mad at our Emergency Department here in town for sending a partial set of records. So…now Dad is bleeding and the Urologist can’t stop it because the stents are causing it. They are only supposed to be in there temporarily until they laser the kidney stones and then they will remove the stents. So here is our problem….Dad cannot have the stones lasered now because his Creatinine is too high and his blood does not coagulate anymore. The Urologist cannot even go in and remove the stents which he inserted because Dad will probably bleed to death during the removal and disturbing his kidneys will possibly spread the Creatinine and kill him. Either way, Dad is in BIG trouble. So, Dad is stuck with the stents until they can make his kidneys strong enough. Now, we have a new Internist and a Nephrologist also in a picture trying to do something…anything for Dad. BUT…since they are in another city, they are ignoring the ONCOLOGIST who is our first line of defence. I cannot even begin to tell you what a mess this is becoming and in the meantime, Dad is laying at home waiting from some kind of an answer. I have sat next to the phone for 2 days waiting to hear from our Oncologist who has been trying to telephone these Specialists to convince them that they need to listen to him and work together with Dad’s blood disorder. It is the inter-city politics which is the problem here and there isn’t a thing that I can do to help that. We don’t have a Nephrologist here in town so if I take Dad to the hospital, they will send him to the town where his new Specialists are anyhow. Am I making any sense at all? You must all think I am some kind of a lunatic babbling so much but this is all true. It is a nightmare!!!!

PS…Jody…
It was in September when we took Dad to our local Emergency Department that they left him for ELEVEN hours before they put him in an ambulance and sent him to Guelph for Stent and Laser Surgery. In the meantime, our Emergency Dept sent Mom and I home for a couple of hours in the afternoon while Dad slept. We had no idea that they were considering moving him to Guelph. Then Guelph operated on him at 3:30 in the morning. The kicker was that when we went back to Emerg to see Dad, he was gone and they would not tell us where they sent him….the new PRIVACY ACT. It took me all night on the phone to find him. And even then, Guelph would not speak to me. They would only speak to my Mom who is European and could not understand them. So…I will NOT take him to our Emerg ever again.

On Monday I will find out if any of his current Specialists plan to hospitalize him. One of them is supposed to see Dad on Wednesday in Guelph so I know our wait won’t be too much longer.

Sorry to be such a pain….

Caroline

[Caroline]

Eve, Ellie and Jody…

I forgot to thank you for your help. Not thinking too clearly today.

Thanks again,
Caroline

[eve]

i hope that they are monitoring his hemoglobin count closely – with the bleeding it could drop rapidly and that could cause major heart problems – i went through some bleeding episodes with my dad and time was of the essence

good luck

eve

[Author]

Posts