After the transplant to + 5 months!

Reminder: To read earlier posts, look over on the right and start at the oldest date!

 Well, it sure has been a long time since I posted and I’m sorry! I’m going to try to fast forward and recap things. This blog will cover the time from right after the transplant until the 5 months post transplant.

May 10^th thru 19^th

I think I was allergic to one of the meds they gave me before the transplant; takes

about a week to 10 days to show up. It was the one that is a cousin to

penicillin. They did that penicillin test to see if I was still allergic;

but I had just had some benedryl; so did that mask the penicillin test?

Makes me wonder. They gave me some different cream, but doesn't seem as

effective as the cortisone. This, too, shall pass. Thanks for everything...

BTW, I walked all the way from St Claire St to Walgreens to pick up the

prescription, and then the rest of the way home with a couple of rest stops.

May 19th

On our way home today!! I have had a nasty allergic reaction rash to a medicine given to me. It went from mid-line of my body, down and upward. I went to a special transplant dermatologist team to try to get rid of it but it kind of has to run its course. They've given me things to deal with it, but nothing will make it go completely away. Through the whole process of the transplant, this has been the worst part. I certainly can't complain about that but I will tell you it is quite uncomfortable.  The worst part now is on my face and head, so I got a note from the doctor yesterday so I don't get kicked off the plane! I will be wearing a cap and mask, so most people won't really see the rash, but I don't want to take any chances. There is nothing "catchy" about what I have, but people can panic (understandably). So, we will be home tonight and happy to sleep in my own bed and sit on my own couch!

The Seneca Hotel has been such a blessing and so much "a home away from home" in which I have felt safe, comfortable and content. It's just a shame they are turning them into apartments and will not be available for any future patients that come up for this procedure. A lot of the nice people that work here will no longer have jobs either.

I am so thankful that Eddie was able to come during this last week, I could never have gotten ready to ship the (3) boxes home and pack everything else, get to all my dermatology and other doctor appointments; let alone desire to either cook or get food to eat while feeling a wiped out as I was from the rash and the transplant itself.

Getting home is such a wonderful feeling after being away for 2 months! Sleeping in my own bed is glorious!!!  Now, if I can just get rid of this rash.   

May 24^th

Paula spoke with Dr. Burt. She told me to stop taking Fluconazole (diflucan). Let them know if it gets worse. As for the itching, I can try hydrocortisone cream, 1% which I used in Chicago to no avail.

I did the nebulizer thing last night in lieu of the diflucan. First part is the albuterol which is no big deal, but the other medicine is yucky tasting and you have to do it for so much longer and it makes your jaw tired, holding the breathing tube between your teeth. Had a few questions after the treatment started but no one to ask since I spoke to the pharmacist prior to treatment but didn't have a number to call him. So, I did my best then called and spoke to a respiratory therapist this morning and she said it sounded like I did just fine. So glad to only have to do that once a month!

May 31^st

Talked to Paula again since I had a cold sore in my mouth. It’s improving and no more popping up, thankfully. I'm thankful that Dr. Burt is not the

"take this pill" kind of guy and went with the salt-water remedy first! :) And rash is just about all gone, residual dryness and itching a bit where last was active. Lotion, lotion, lotion. Dermatologist appointment yesterday went well

and they saw nothing to be concerned about either!

She also shared with me my lab work from my most recent blood draw!  How in the world can my lipid numbers jump so drastically in such a short period of time? Holy cow! My lipid counts were through the roof! Apparently this is a side effect of the transplant. It’s nothing to worry about unless they stay high. Just watch future blood work.

June 7^th

Now that I have been on 7.5mg of prednisone for 1 week, my rash is coming back where it left off. It never went totally away until after I took my prednisone. Early in the morning I could see/feel traces of it at the fold of my elbows and underarms and under my breasts. Now, it is stronger again under my breasts and a little lower (on upper abdomen), and at the sides of my breast and at my underarms and upper/inner arms. Along with this seems to come a shakiness in my hands/fingers that is not there when the rash was not as prevalent. I was shaky when rash was present previously, if I didn't mention that earlier.  Should I try Benedryl? I really don't care to go back to the dermatologist, as it was very far and the doctor didn't seem all that interested. His intern was more helpful; but since I had no rash then to speak of or look at, just the residual blotchiness on my legs, he didn't even look at me thoroughly. (I didn't really mind since there was nothing to see.) He only recommended a good moisturizing cream/lotion (which I have been using) and sunscreen. 
Well, Dr. Burt says go back up to 10mg of prednisone. Sigh. 

June 11^th

I am noticing my eyes feel "filmy" and "blurry". Is that part of the transplant/chemo reaction? Rash is no worse today (been back on 10mg of pred since Thurs) but not going away quite yet either. But, not spreading either. Just kind of hanging in there to see how tomorrow and Wed are before I talk to you on Wed or Thurs to check on blood counts as well (just taken this morning). The blurry/fuzzy eye thing is concerning. Maybe I should see my eye doctor. I went to an ophthalmologist and had quite a few tests and it came down to dry eyes. Every other part of my body seems dry so why not my eyes too. I am to use moisture eye drops several times a day. I usually use eye drops first thing in the morning so it is not anything foreign to me and I will just do it more often. Everything else was looking good in my eyes, so that is a relief!

Some very good observations are that I am experiencing many less twitches, for sure. I keep count of how many I notice and it has been 6 since transplant! 6!!! That is so cool! No pokes, jabs or stabs at all!

June 30^th

I am feeling so much better and better each week. Still have slight rash and still on prednisone 10mg due to that. I am anxious to see when I can reduce pred that the rash doesn't come back like it did before. I’m also walking more and more. Having more energy and napping less. It's only been 2 months since my transplant, so feel that's pretty good.

July 12^th

Things are going really well for me! It's been 2 months and 1 week today since my transplant and I'm feeling GREAT!! Improvements are happening weekly if not daily! I am still on 10mg of prednisone until the rash is completely gone! It is no longer actively spreading or itching but I still can tell it is underlying just beneath the service. Last time I decreased the pred it returned quickly, so I will wait until rash is more subdued before I start to wean off it. However, that is the only negative part of my report.

I am moving so much better, faster and easier at this point, I'm amazed! Last week, I jogged a short distance two times, I've been riding my stationary bike and walking the block fairly often (when it's not too hot to walk). The other day, my sister and I were doing a floor treatment of laying pennies in her archway to seal down as a decorative accent, which entailed sitting on the floor indian style and leaning over for a length of time which was uncomfortable; but I did pretty good, just a bit stiff after getting up. We were listening to oldies music and when a good tune came on we actually jitterbugged danced like we used to before my CIDP!!! I was so excited, I started jumping up and down, which made me more excited that I could do that!!

I am not experiencing any more twitches, zaps, pokes, tingles that came with CIDP! Occasionally I am shaky in my hands but I think that may be from the pred more than anything else, so looking forward to getting rid of that medicine! Balance is something I am still working on as is strength and endurance, of course. That comes with time but it is certainly better than it was.

July 13^th

YAY!!! Everything in NORMAL range!! Yippee Skippy! (re: blood work)

Aug 29^th

I'm down to 2.5mg pred now since Sunday and there is a difference in my energy level, for sure. I also was kind of sick over the week end, some tummy stuff. Not sure what is bringing it on, I'm not eating gluten or lactose and those are the things that are not my friends. I’ve starting a diet log so I can track to see if it is a particular food that annoys me. So, is the lack of energy from the tummy issue or the pred? Not sure, but am only biking at 10min daily now instead of 15min, will try to work up again. But, when I'm not feeling good in the tummy, I don't ride because that doesn't feel good either! Catch 22!

A note I sent to Paula:

“Something I'm noticing that is not going away is the breathing difference. I still am taking deep, anxious breaths often each day. My lungs just feel different to me than they ever have before transplant. Do others have this complaint? It's hard to explain, kind of like when you have a bad cold with a cough and your lungs sort of hurt is how mine feel. I haven't seen my PCP about this as I am going to a new doctor on Sept 11th since I am not too confident in the others I had prior to transplant. Do you think I should get a chest X ray? Should I see my PCP or would you want to order it for me since I am sort of between docs here? Then the results would go right to you up there for my check up in Oct? If so, let me know and I'll tell you where to fax order. I have noticed this feeling since the time I got home but thought by now it would be gone. I have taken my Acyclovir 2 times every day since I'm home and also the Nebupent as prescribed.”

Sept 4th w/ Paula

Paula,

Doing okay, keeping a diary of input and output, LOL. Nothing major going on, still at 2.5mg of pred and feeling a few twitches and pokes. Keeping track of these too. Hoping it turns to nothing more, but I'll let you know.

Going to stay quiet and just keep an eye on these things.

Sept 6th w/ Paula

Hi Paula,

Just checking in to say I'm doing okay. Tummy has been better these past few days. But, guess what?

Rash is back a bit, ointment helping already just frustrated that it is still inside me for some reason! I am

also still taking Allegra 2x/daily. It's at a very small area right now (upper right side breast), with little on

other side too (very minor).

Sept 11th w/ Paula

minor inconvenience, ointment keeps it much less irritating. This is my 3rd week on 2.5mg of pred, so Sunday I may go to every other day at this rate, what do you think about that?

Did you get my phone message about my Dr. visit today? He's ordering an Albuterral inhaler for me, ask Dr. Burt if okay.

Sept 18th w/ Paula

Just to let you know, I went to have a blood draw yesterday, so results will be forthcoming.

I also got an inhaler today, my insurance didn't pay anything for it , first time they've not

paid for something, so I guess I can't complain. I will just be curious on EOB as to why.

Sunday and today I skipped my prednisone, I can definitely tell a difference in my energy level and stamina these past few weeks since I've been dropping the dosage. But, it'll all be for the best eventually. The rash has been behaving, fortunately!

Sept 19th w/ Paula

I'm feeling really energy-less lately. A lot more than usual. Coming off pred, do you think?

Today is especially worse, had to go back to an electric cart at Sam's Club after I was at Salvation Army. I slept from 11pm last night until 10am this morning. HHHmmmmm Gave myself a B12 shot Sept 10th.

Sept 25th w/ Paula

Hi Paula,

I’m still tired a lot but better than the other day. I'd like to stay here for a while and try to adjust at this level.

I'm going to talk to a nutritionist on Friday to see what I can do to help boost my adrenal production naturally. If she suggests anything "pill wise" do you want me to check it with you and Dr. Burt first? I found I cannot (and should not) do the lecithin (soy based) as I took 2 pills and broke out in a horrible rash around my neck and chest. It went away quickly as soon as I stopped. But, apparently, when one is on thyroid medicine, one should not take soy products. Didn't know that one! Also biotin made me sick in my stomach. So, I think talking to a nutritionist might not be a bad idea. Give her my whole picture of health and medicine regimen and go from there.

Hair is coming in now, darker, thicker and a bit curly. Hmmm, this might be fun!