Any advice is much appreciated!!

Hello All,

I hope you are all doing well.  I know it has been a long time but I started working again in November so things have been very hectic.  I wanted to reach out to you all for a little advice on a few things.  I've spoken with some about these topics and done a little research but more than anything I'm having issues with how to handle pushy doctors that are making me feel like my decisions are impractical.

First issue I'm having is my views on a port.  I have denied this option but the doctor continues to ask me EVERY time we go to get Ari's IV put in.  The last time the doctor told me that I was torturing him and that he would remember this time.  He also told me quote: "IF Ari had Luekemia a port would have to be in....not to wish anything on you but just saying it wouldn't be an option."

I have started to dread our hospital visits for this reason. YES, it has been VERY difficult to put an IV into Ari. His veins are VERY skinny and hard to find no matter what I seem to do.  For a while, the nurse was able to get it in 1 poke but now days he squirms, fights and cries so much....just for being held down...that it takes up to 5 tries.  I KNOW that the major point of the crying is because he is held down but ofcourse, no matter what, I get that look of annoyance and disapproval from the doctor.  I have really started to feel like maybe I am torturing him.  Especially since there is no support from them and they keep telling me he is too hard of a poke.  I SEE that he is a hard poke and that he struggles, so then i think am I making the wrong decision by opting out on this? 

The other issue I am dealing with is now they have a NEW doctor on board who specializes in BMT.  He met with us yesterday while we were there for a transfusion and said that this is the BEST time to do a BMT and that there are more pros than cons.  They want me approve them to start lookng for an HLA match for him and see if there is one out there for him...and do it now.  Apparently, if I wait too long, it gets more difficult to do the treatment.  THe thing is that I've never thought of a BMT so I'm LOST. 

I guess I just thought there was more time to research and look into a process like this and also, upon speaking to many, I didn't know if this was something I wanted to put him through.  Now, I don't know.  I don't know how painful it will be...how a easily a child his age will handle it....will he be the same...is there a chance to loose him..........

I'm struggling once again and i'm doing the reading...but I just need a point of view from the heart.

Yesterday, the doctor told me to at least see if there was a match available.. there was no harm in taking a little blood to do so.  I refused. 

Carishma,

I cannot believe the pressure you are under.  Andy is recovering from some trouble
He is experiencing with his arm.  My day has been hectic, but I will call
You the moment I get home.  I hope others will provide their
Opinions as well.  I am strictly against ports, and so is my doctor.  I don't
Know why they are pushing you.  At that age lil A also hatedIVs now he
Is fine with them.  After the age of two he was very calm about
IVs. 

There is no harm in finding a match.  You never know when the
Technique becomes very safe and effective.  However, don't rush into
The procedure until YOU are satisfied. 

We'll talk more soon!

Sharmin

Ari does not have leukemia and perhaps the doctor needs to be reminded of that. Unless veins are impossible to access, there is no reason to take the risk of infections that a port entails. I Know many people with ports and infections and port replacements are the norm. Don't give in to the pressure. It is for the benefit of the nurses and not the patient.

Thank you for your quick responses.  I dread going to the hospital for monthly transfusions these days. 

Another thing I forgot to mention in my last post was that the new doctor who spoke to me about BMT also kept repeating the fact that most thal patients do not live past the age of 40 due to the complications related to iron overload.  I know this is not true but to keep hearing it this really brought us down.  He said that Ari's growth would be effected and no matter how much we tried to keep his iron down it is inevitable that iron will complicate his life and the BMT is the cure.

I spoke to Sharni last night - thank you so much sharni for the call.  I knew it was old info when speaking with the doctor however, to have someone look you in the eye and tell you somethng like that is disheartening.   

I am going to start looking into other doctors in the area again. Wish me luck. 

The children at Ari's age are always hard to poke, they have small veins and it takes specialist nurse to do the job. Your doctor is simply wrong, Port is not the answer (give me a break).

Like sharmin said there is nothing wrong in finding a HLA match (it is a long process and with very little success). Don't even think about BMT right now, just relax (let them first find the HLA match) then you can discuss your options.

Also, remember nobody can put the age on your son, this is crap. We were told the max age of 18 in 2003 for thal major.

As much as the doctor's hate it, you are doing a stellar job at not going with the ports. It seems difficult now but as a lot of folks have mentioned - It gets easier once they have a certain age.

For BMT, I think you can always have the HLA match up done. That is the 1st and the most important step. Once you get a match - you can decide if you really want to think about it. I know a family who was pretty certain they were going to get BMT done with Unrelated donor but later on decided against it. So, there is time to think about it for you and your family.

Perhaps I should post your doctor my photo, Carisma, to see a thal who has lived and reached her 50 this year and in very good physical condition. I could also post a photo of a thal friend of mine who has reached his 58 birthday and is in very good health, too. And many more Greek thals who are long past the age of 40.

Drop your worries, Carisma, and follow your instinct and what some people here, in this site, tell you due to their experience.
I am 100% against ports. Things will soon become normal. It may be that the doctors and nurses there, are the real problem and scare Ari. They suggest port only for their own convenience. Do not succumb.

Lena.

Thank you all for responding with your thoughts.  They are really helpful and encouraging and have made me realize that I'm doing the best things for my son.  It has been so hard because with doctors like this I can't help but second guess my decisions.

Also, thank you Lena - I can't wait for Ari to grow up and ready this post from you.  I hope it brings him as much strength as it just gave me after a very long week. 

I'm going to say this again. Every thalassemic in the US should be registered with the Cooley's Anemia Foundation and every patient should have care supervised by one of the Thalassemia Centers of Excellence or one of the satellite centers and be seen there at least once per year.

Carisma, until Ari is under the care of one of these centers, you will continually face these types of problems. The difference between care at any hospital and the managed care at a Center of Excellence is literally night and day. I cannot overemphasize the importance of having your program designed by the experts. Even if someone suggests a port, with managed care you are part of the decision making team and your wishes will be respected. And one major importance here is that when your local hospital gives you grief, you have your team at the Center to turn to.

We have a decent hospital here in Rochester and the term thalassemia was actually coined here in the 1950's. Yet, I do not feel that Lisa got the necessary care that could have kept her alive. Each doctor acted separately and by not working together, they were not on the same page and Lisa did not get the attention she needed to keep her alive. I truly believe that had she been seen regularly at a specialized center, that she would still be with us today. I will say the same for young Thoa who passed away last year. These patients get lost in a system that is not designed for managed care that involves all the health care providers working as a team. The older patients are almost all in managed care programs. Lena has a wonderful program and a wonderful doctor. She is treated in an equivalent program in Greece. This applies to many patients around the world. With the close attention given to patients, nothing slips by and any problems that may arise are addressed. Because thal care is so involved, this is the way to approach care and the patients in these programs are outliving patients who don't have this same level of care. It's available in most developed nations and every patient should take advantage of these managed programs when available.

Hi andy, i will write more later but I wanted to let you know we do see doctor beudreux in atlanta. I correspond with her every so often and she is wonderful. In fact we r going there on march 16 for our yearly.  The thing is that she will and has made recommendations for treating him but she can't make him do anything. She recommended a treatment plan when ari first started...but I feel like he never even looked at her recommendations.

 I believe she recommended the yearly testing for diseases like hep, or hiv...i wanted to do this in atlanta but my insurance won't cover. She said my doctor knows to do it and I have also brought this up for the post few months.......my doctor still hasn't tested. Isn't this something they should do upon a year of transfusions automatically?

Also, I know that she is pro ports from the first meeting we had. I don't think she will back me up on that one no matter what based on what she told me. She also feels like it is torture.

Hi Carisma,

Have you talked to Eileen at CAF about the insurance issues? I would like to know how it is worked out for patients to take their annual visits at the Thal Centers and have their insurance cover it. Is this possible?

I am fairly new to this site, so I am not sure how to really post things, and I don't know the whole history of your child, but I just wanted to let you know there is hope.
I am a Thal Major that is going on 42 years of age, with little iron overload.  I  receive blood transfusions biweekly, and take exjade everyday.  When I was younger I would do desferal with an infusion pump. I do remember as a child crying alot with IV's, but it was mostly anger and stubborness, not really pain that i was crying about. but then I just came to realize it was something I had to do. I have never had a port and do not intend to at any time, even though I think the nurses at the treatment center would really love me to get one.  They all seem to run when they know I need an IV put in, but I still have a few good veins that will not give up on me.  I wouldn't get a port unless absolutely necessary.  They seem to give people more trouble than it is worth sometimes. 

I have twin daughters that are twelve that I gave birth to naturally.  They were born premature, but they are very healthy now.

I hope this gives you some reassurance, and to not always listen to doctors and what they have to say.   When I was born, my doctor told my parents I probably would only live into my teens.  I will turn 42 this summer!!!

May I present the opposing view here? That of a "child patient"? Instead of the view of the "adult patient who has now stepped up to the plate and/or bitten the bullet" or the view of the parent?

This is not based on my own experience, as I do not quite remember how I used to react to the "pricks" when I was a kid below 5 years of age, and parents' views are usually coloured, especially if so much time has passed! This is based on what have I have actually seen with small kids at my centre who have had issues with their veins. There was one instance where I remember it took 9 attempts for a successful connection - the poor kid had cried herself into numbness, the mom was crying, the doctor and the nurse were helpless.

If a child below 5 years has really thin veins and has had previous bad experiences with his/her doctors/nurses, then we should be aware that each transfusion can be quite a traumatic event for the child. Given that this is a chronic issue, we need to understand the child gets genuinely terrified of his/her visit to the transfusion centre, even up to 2 days before the visit. Even if the pain of the actual injection may not be huge (and let me tell you that it can be pretty intense if you have sensitive skin, or the needle cuts through a particularly sensitive area underneath the epidermis), the whole psychological trauma associated with the prick is certainly greater than the actual pain.

Then, let us also understand that nurses and doctors prick the vein, by "touch" - they can not actually see the vein. Despite having good veins, there have been occasions when my nurse has pricked into the vein wall on one side and then out the other side, because of the angle of the vein or some other factor. Not a pretty thing to bear, having that needle tear through a muscle on the other side of the vein.

Then, when the child hyperventilates, the vein "disappears" - the doctors can no longer feel it - how do you expect them to prick the vein then? In the case of one child, I have seen the needle go into the vein, blood come out into the scalp vein set and then have the vein subside, and disappear, leading to a failed prick. And, this is with an very experienced doctor and nurse.

Possible solutions:

1. Increased fluid intake the day before the transfusion and on the day of the transfusion before the actual injection
2. Needles come in various sizes - pls check the gauge of the needle - typical sizes are 19G, 20G, 21G, 22G - (higher the number, smaller the needle dia) - and then shift down on the size of the needle
3. Special needles - these are plastic needles with a thin metal core that is removed post injection. The metal core is used to penetrate the vein, and it is removed once the connection is made. This means that since the metal is not used for transport of blood, it can be of a very thin diameter indeed. And, the plastic needle moves with the vein, so there is no chance of any slippage thereafter. (Thanks to Ashish for educating me on these needles)
4. If the kid can manage it, consider adding a multi-connector tubing to the scalp vein set, and keeping it in place for 2-3 months (saves you that many pricks) - works like a quasi-port, without many of the other issues. However, typically this is best managed if the injection site is on the back of the palm
5. Consider hiring your own phlebetomist, if your centre will allow it - this is their career - drawing blood.
6. Consider a mild sedative, in consultation with your doctor - something like a cough syrup?

The kid should certainly outgrow this phase as his veins grow - but, he has a genuine issue currently. And, it may not be the fault of the doctors/nurses either on this issue, so let us all keep an open mind.

And, Carisma, I did not quite understand your objections to the doctor wanting to do a HLA match search - I thought he was being proactive about the long term treatment of your son - what is your objection?

cheers

Poirot