One-week pre Autogolous BMT: I'm afraid I'm not prepared

Posted by jstpeachey @jstpeachey, Jul 3, 2023

I’m so afraid I’m not prepared, I really don’t know what to expect, I’ve just discovered this group. I’m going in on 7/10 for my “chemo blast” which really freaks me out, and my outpatient Autologous transplant is on the 12th. I’ve heard horror stories and I’ve heard great things. So far I have sailed thru everything with only a few hiccups along the way. My BM collection I aced, I’m just not sure how to prepare my living quarters. We’re staying in a condo near the Phoenix Mayo, can anyone please tell me what I can expect, I know everyone is different. My husband & care giver I really don’t think he understands what he has to look forward to either.

Interested in more discussions like this? Go to the Bone Marrow Transplant (BMT) & CAR-T Cell Therapy Support Group.

@patientpainter

I may be repeating advice you read or hear elsewhere - but I just had an ACST in May, and was extremely nervous about getting sores in my mouth and throughout my digestive system: Stay hydrated throughout each day - and night!-with twelve cups of water/non acidic fluids. Don't eat foods with acid in them even if they're normally healthy: pineapple, lemon, etc.. Avoid chewing gum , if you use it, that has acid in it( always look at ingredients). Do a saltwater after each time you've eaten something. Get toothpaste without extrachemicals in it( whiteners etc) and don't use normal mouthwashes. Keep your foods non sugary as much as possible, and soothing. Get a super soft toothbrush and don't floss for several weeks, but especially not during the stem cell process: treat your mouth gently. And get non-allergenic baby wipes and Desitin cream for your bottom, for whenever you've used the toilet, for a couple of weeks. Treat yourself as you would a baby, in that regard!: Stay clean and dry, other than soothing cream.
Best of luck. Oh and No apple juice, or cranberry juice, etc. They are superacidic.-( I don't know why hospitals serve stuff that stirs up problems, so often!- at least, my NY hospital did). Study antiinflammatory diet lists online, as a guide. Worked for me, anyway.

Jump to this post

Can you recommend a non-acidic electrolyte drink and preferably no sugar? I’ve been looking but can seem to find one. May not even exist.

REPLY
@jstpeachey

Can you recommend a non-acidic electrolyte drink and preferably no sugar? I’ve been looking but can seem to find one. May not even exist.

Jump to this post

My local healthy pharmacy was out of stock of the One electrolyte concentrate that they had that is acidfree- and they saw the desperate look on my face, and told me it's name so I could order it pronto!: BodyBio brand, "E-LYTE" concentrate of pure electrolytes. 4 fluid oz is what I ordered from Amazon, has 16 servings. ( Can't remember cost, and I blocked myself from Amazon- and Etsy!- as I was spending too much money on looking for the key to feeling better...😁). If I feel shaky I put a capful in whatever watered down juice I'm drinking, and it has helped! Good stuff.

REPLY
@loribmt

Welcome to Connect @jstpeachey! I know I shouldn’t but I just have to use your @name and tell you that this will all be Just Peachy”! You’ve come to the right place because there are a number of us who have been through the BMT process and are more than willing to help out where we can.

How long do you need to stay near the clinic? My husband and I relocated to Rochester for 4 months during my allo transplant. So needless to say I packed everything but the kitchen sink. 😅. Not really and I was surprisingly organized! (That’s not my strong suit!). We stayed in a 2 bedroom, 2 bath hotel suite so we were limited in space. With a condo, that will feel more like home. Here is a link to a reply I previously posted on what to pack for transplant:
https://connect.mayoclinic.org/comment/703859/
And another discussion for patients with solid organ. But no matter, the needs are the same when we live away from home:
~Packing question: What did you have ready for "the call"?
https://connect.mayoclinic.org/discussion/packing-question/
We have a number of members in the forum who have had Auto transplants who have shared their stories and experiences to help others along the same journey. I’d like you to meet @auntieoakley. @ckeys @callie28 @countrygirlusa @capthondo and others who have gone through this journey or are caregivers. Their experiences are posted below in the links provide.

This reply is from 30+ days after @capthondo had his transplant! It remains such an encouraging, positive comment!
https://connect.mayoclinic.org/comment/746563/
@capthondo shares his auto transplant story here:
https://connect.mayoclinic.org/comment/747475/
It’s from this discussion group for Multiple Myeloma:
https://connect.mayoclinic.org/comment/716285/
@countrygirlusa had an auto transplant for AL Amyloidosis which is a ‘cousin’ of multiple myeloma.
https://connect.mayoclinic.org/comment/716285/
The full discussion link is here:
~My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
A big suggestion is to avoid the negative comments. We all go through this journey on our own terms and we’re all different. It isn’t an easy journey but I also think you’ve gone through a lot already to get to this point! Right? So this is nothing more except a new step into unknown territory. But it is a means to a healthier life ahead. May I ask what bought you to needing a transplant?

Jump to this post

Did you find a need for a shower stool?? I know everyone is different but, this condo has a pretty big walk-in shower, I’ve ordered suction type handles because there wasn’t any (odd) just wasn’t sure about the stool

REPLY
@jstpeachey

Did you find a need for a shower stool?? I know everyone is different but, this condo has a pretty big walk-in shower, I’ve ordered suction type handles because there wasn’t any (odd) just wasn’t sure about the stool

Jump to this post

Not everyone will have the same experiences after the transplant but I’m pretty sure most had the fatigue and weakness the first couple of weeks.
It was tough to admit…being the fiercely independent type, but I was very weak and fatigued for that first month. So I did use a shower stool. I also had a Hickman chest port. Not sure if you’ll have the same type of port? It had to be covered with an Aqua-gard adhesive waterproof covering. I swear by the time I wrangled in the lumens and got everything on and sealed on my chest, I was so exhausted that I couldn’t finish the shower…sitting or standing! 😅. Some days I could only manage a sponge bath…in separate attempts.
My sweet husband also bought one of those adapters for the shower to make it into a handheld one for me.

That is odd that there weren’t any handles for the shower in your condo. But your idea of suction cup handles is great just to steady yourself.
I also used a wheel chair to get around the hospital…husband pushing. Mayo has those available everywhere and free to use!

I know this all sounds so scary but really, think of it like a bad case of the flu. I’m sure you’ve had that in your lifetime where you were just bone tired (no pun intended) and just wanted to sleep. You shuffled to the bathroom and everything was an effort. That’s pretty much what this will feel like.
The infusion of your stem cells will be very easy. I think I mentioned it’s just like a blood transfusion and very anticlimactic after all the hoopla! The cells miraculously find their home inside your bone marrow and within 10-15 days or so, they will engraft and set up housekeeping again. Your team will check your blood numbers daily to watch for signs of engraftment. When your wbc starts to increase, bingo!!! You’ll start feeling a whole lot better rapidly.

Having this done as outpatient has its advantages over staying in the hospital. Being ‘home’ you’ll recover sooner, have less exposure to germs, move around more and feel less like a patient. ☺️
It sounds like you have everything ready. And if not, please don’t stress! There is nothing that can’t be gotten as you need it. ☺️ Our nurses at the hospital are a great resource too! I’d asked if I could have a one of those disposable pads they put on patient’s beds just in case. My nurse gave me an entire package. So don’t hesitate to ask your care team for anything that will make you comfy, from anti nausea meds to pain meds if you need them.
I’ll be right there with you in spirit. ☺️

REPLY

You’re my lil God send, thank you for your time and advice. I’m sure there’s a few more of us out there that need to know your worldly advice. I get my PICC line tomorrow, mine will be in my arm, I’m prepared with Saranwrap Press & Seal (lol) and foam tape for my showers. But looking on Amazon they have all kinds of contraption type sleeves you can get, gonna ask about those tomorrow. I’m afraid of ripping out the line so I’m hoping they give me some kinda of something to put over it, if not AMAZON!! Than you again Lori, your a doll

REPLY
@jstpeachey

You’re my lil God send, thank you for your time and advice. I’m sure there’s a few more of us out there that need to know your worldly advice. I get my PICC line tomorrow, mine will be in my arm, I’m prepared with Saranwrap Press & Seal (lol) and foam tape for my showers. But looking on Amazon they have all kinds of contraption type sleeves you can get, gonna ask about those tomorrow. I’m afraid of ripping out the line so I’m hoping they give me some kinda of something to put over it, if not AMAZON!! Than you again Lori, your a doll

Jump to this post

P.S. Got the Body Bio Electrolyte yesterday, I think I’m loaded for bear

REPLY
@jstpeachey

You’re my lil God send, thank you for your time and advice. I’m sure there’s a few more of us out there that need to know your worldly advice. I get my PICC line tomorrow, mine will be in my arm, I’m prepared with Saranwrap Press & Seal (lol) and foam tape for my showers. But looking on Amazon they have all kinds of contraption type sleeves you can get, gonna ask about those tomorrow. I’m afraid of ripping out the line so I’m hoping they give me some kinda of something to put over it, if not AMAZON!! Than you again Lori, your a doll

Jump to this post

Ohh good for you! A picc line is easy peasy and a Saranwraper will be perfect! You won’t rip out the line! It has a seal placed around it and it’s in until your nurse removes it when no longer needed. So don’t worry about that.
You may not need anything else. Over my months of treatment for AML, I did have 3 different picc lines. One of them was annoying in that the lumens on the picc line would get snagged up in my clothing. *different arm… (lumens are the hook up lines for IVs that dangle off the picc line)
So I had some fun, whimsical knee socks that I cut off at the ankle and used those for the ‘sleeve’ around my arm. ☺️ They had cute designs and my nurses were wondering where I got my cool sleeves. (Sshhhhh. 😆)

LOL. Yes, Amazon can find you anywhere! Even at my hotel for 4 months! 😂.
The bio body electrolyte should be a good means of hydration for you. One thing to note, is that you should run this past your transplant pharmacist first. Just to make sure nothing interferes with your meds.

You’re ready gurlfriend! You’ve got this!! 🧬We’re GO for transplant!

REPLY
@loribmt

Ohh good for you! A picc line is easy peasy and a Saranwraper will be perfect! You won’t rip out the line! It has a seal placed around it and it’s in until your nurse removes it when no longer needed. So don’t worry about that.
You may not need anything else. Over my months of treatment for AML, I did have 3 different picc lines. One of them was annoying in that the lumens on the picc line would get snagged up in my clothing. *different arm… (lumens are the hook up lines for IVs that dangle off the picc line)
So I had some fun, whimsical knee socks that I cut off at the ankle and used those for the ‘sleeve’ around my arm. ☺️ They had cute designs and my nurses were wondering where I got my cool sleeves. (Sshhhhh. 😆)

LOL. Yes, Amazon can find you anywhere! Even at my hotel for 4 months! 😂.
The bio body electrolyte should be a good means of hydration for you. One thing to note, is that you should run this past your transplant pharmacist first. Just to make sure nothing interferes with your meds.

You’re ready gurlfriend! You’ve got this!! 🧬We’re GO for transplant!

Jump to this post

Ok, that makes me feel better too. I think I am ready, I’m ready for all of this to be behind me and just a memory. Maybe I can help others the same way you’ve been able to help me. Thank you again❤️

REPLY
@jstpeachey

Ok, that makes me feel better too. I think I am ready, I’m ready for all of this to be behind me and just a memory. Maybe I can help others the same way you’ve been able to help me. Thank you again❤️

Jump to this post

Good morning, @jstpeachey! Nothing makes me happier as a mentor for Connect than to learn that I’ve succeeded in helping to calm the fears and offer hope to someone heading to bone marrow transplant. I didn’t have anyone to talk with about their experience. My doctors and nurses were amazing but unless you’ve walked that walk, you can’t possibly know what it all feels like.

I learned the value of first hand information when I was waiting in the lab area to be called for blood work. Up until about 1.5 months I was in a private area daily for blood draws along with infusions. After that I was back in general population. Feeling pretty low, I wondered if I’d ever start feeling or looking healthy again. (I had a allogenic transplant). What infused me with hope was a random meeting with 2 previously transplanted patients. One celebrated their 2nd anniversary, the other his 5th. Those 2 people had an impact on me that they’ll never know! But at that moment I learned how important it is to give others hope. ☺️
Actually, few months ago there was a little article the editors at Mayo put together about that experience which inspired me to help others. One of whom is this young woman, Sky who had a bone marrow transplant after her similar AML journey. Here’s the story if you’d like to read it. https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/mayo-clinic-connect-brings-together-2-women-with-leukemia-46-years-apart/

Best wishes as you go forward tomorrow! ☺️

REPLY

I hear u I’m dominant up to soon to havin it done are using a donor or your own blood

REPLY
Please sign in or register to post a reply.