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Old Thu Jul 31, 2014, 06:10 AM
Dean604 Dean604 is offline
Join Date: Jul 2014
Location: Vancouver, BC, Canada
Posts: 2
A question or 3 due to the MDS in me...

My pleasure to join and hopefully connect with fellow survivors of this array of blood cancers for which we fight for our successes.

I work closely with The Team BMT, and at Day 26, my answers seem best addressed by a fellow patient.

I have a few queries to put to the mass here at MarrowForums, and your patience and understanding is appreciated, your opinions are sought...

Does anyone have input on Resource 2.0 as a temporary meal replacement? Does it cause gas for you and does it suffice at 140g protein/3300cal intake per day? I am trying to maintain 200lbs, have needed this source of food due to mucusitis issues still healing, but this may be a source of some painful gas as well. Any knowledge or similarities in your case?

I am on Cyclosporine 400mg twice daily, and I am aware that level is high. I am shaking like never before in my life, but require this amount to maintain required levels. Can this be a source for gas? Has anyone asked for something that worked to calm the tremors? I can't even sign my name, take pictures, perform minor precision activity...

Lastly, does anyone have a sure fire answer to swimming with a Hickman line, whether it's a one time dressing or a special swim shirt. I have a pool, and for exercise I really miss swimming. Does anyone have a solution be it one off or every day?

In closing, thanks for reading my post through. It shows you are genuine and you care, or boredom has set in and it's fodder. Either way, thanks. I hope you win at every task your situation forces upon you.

I plan on asking questions, I will also read through and try answering questions when I can. I will always care, and I try to use humour in most appropriate situations. But most of all, I am thankful for joining these boards and look forward to communicating with a positive and beautiful group.

My name is Dean, I am from Vancouver, and was treated at Vancouver General Hospital. I am a single father to 3 children that have supported and kept me going since Day 1. Bring on those 100 days and give me the tools to fight and I shall build my own resistance camp and pull this one through. As I hope each and every one of you does too. Let's do this.
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Old Thu Jul 31, 2014, 01:42 PM
Neil Cuadra Neil Cuadra is offline
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,493
Originally Posted by Dean604 View Post
Lastly, does anyone have a sure fire answer to swimming with a Hickman line, whether it's a one time dressing or a special swim shirt. I have a pool, and for exercise I really miss swimming. Does anyone have a solution be it one off or every day?

NIH Patient Education says
One month after catheter insertion, you may be able to swim in a chlorinated pool. Check with your health care team if you can go swimming. If you can, make sure that the pool has a regularly monitored chlorine content. You must also protect the exit site with a watertight dressing and change it after swimming if the dressing becomes wet. Do not swim in lakes, rivers, oceans, or use hot tubs.
For the opposing viewpoint we go to the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins, which says
You may shower, but you must completely cover your dressing and connections with plastic wrap and tape or a dressing cover such as Aquaguard™. Do not let your catheter go under water, in the tub or pool.
It's clear that water at the exit site is a possible source of infection, so it's risky to immerse yourself unless the dressing is water-sealed in a fool-proof way. I've learned that food wrap like Glad Press 'n Seal can keep water away from a dressing during a shower -- just pretend you're "leftovers" and use a lot of it to wrap yourself up! But swimming is more than immersion, since it also involves major movement of your arm and shoulder muscles, so I don't think that type of solution would be safe enough. Perhaps there's a way to thoroughly protect your catheter, but if it was me I'd stick to other forms of exercise until I know it's safe to swim again.

As all of the guides say, talk to your doctor when you're unsure about which activities you can safely engage in.
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Old Thu Jul 31, 2014, 04:30 PM
DanL DanL is offline
Join Date: Dec 2010
Location: Denver, CO
Posts: 577

I will attempt to speak to the GI issues and maintaining weight, as I lost about 30 pounds from transplant to day 60, and have only gained back about 8 pounds now at about day 160. The GI symptoms are individual, but many people experience some sort of digestive distress, and spend a lot of time with trial and error in the different foods and how they impact your system. For me, it changes day to day and week to week. My taste buds are still experiencing some difficulty, but this does not keep me from getting 2000-3000 calories per day.

I have found that too much milk or soy product can cause problems on any given day, but tend to push through because to reach my target of 100 grams of protein per day, I need to supplement with some form of protein based drink that gives me 30 grams in a single serving.

Unfortunately, the trial and error method as to how much of what I can consume without pushing myself into discomfort has really been via trial and error, noting what I had to eat, then repeating in altered doses, meaning that I might add more juice to my protein drink to offset the milk or soy milk, and this seems like a pretty good solution -- peach or pear juice or even mango based have been kind to me - i would avoid apple, orange, and grapefruit (as it interferes with lots of medications).

As for the central line, I was told to avoid bathtubs, swimming pools, and jacuzzis until the line is removed because of the risk of infection. I am 100% with Neil on this - see what the doctor says, and seek out other forms of exercise as needed.

Congratulations on the transplant and here's to a healthy future!
MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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Old Tue Aug 19, 2014, 07:36 PM
Dean604 Dean604 is offline
Join Date: Jul 2014
Location: Vancouver, BC, Canada
Posts: 2
Thank you for your responses Neil and Dan,

I have been denied the request to swim and how to go about doing that, and quite vehemently so that's that!
I wasn't very happy that it's so cut and dried with all the waterproof solutions to tops and even dry suits, but life is more important than an extended dip in the pool I'd say.

My nutritional supplements keep my protein around 140g plus, my calories around 3000/day and my weight getting a bit more solid at 195lbs. Also experienced slight boost in hG with new cells.

Downside is strong group 2 GVHD on a 10/10 matched unrelated donor, so new meds and some fever and fatigue.
Contracted cytomegalovirus and was treated for that, causing more fatigue and discomfort. Made for a couple weeks of hot August summer weather here in BC a little more uncomfortable and bed ridden here and there, and lots of added appointments an hour drive each way!

Again, thanks Neil and Dan for your replies and information, I hope the best for everyone, talk again!

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