Feeling worse instead of better

Wisteria83

I'm just a couple days shy of one month post treatment and I feel awful!

My blood counts are still low and falling.  There's been so much attention to my low platelets that I don't even know what my WBC's and RBC's are.  They are low, I know that much.

Last check they were at 19k.  For the last few weeks I've been having a racing heart and shortness of breath and extreme fatigue.  I'm wearing a heart monitor for 30 days, and for the last 5 the racing hasn't stopped like it used to.  Today I'm having an echocardiogram to see what's going on with it.  The reports so far say sinus tachycardia.  My blood pressure is pretty low, they always take it twice to be sure.  84/56.  or so.  My pulse right now, resting is 134.  Last week I got a prescription for Folate and a B12 shot.  My med onc seems to be scratching her head, but is methodically doing different tests to try to figure out what's going on. She said it's not Mitomycin C toxicity, because my renal function is good.  My spleen isn't enlarged.  She called my rad onc and he said because I'm small all that radiation that went to my pelvis could have affected the bone marrow since there's so much bone there. 

Over the past weekend I had a brutal headache that just wouldn't quit, but I didn't dare take anything for it because I don't know what's safe.

Please, if anyone has experience with this or has any ideas, could you let me know?  I'm so damn tired of feeling sick and tired.

 

mp327

Wisteria

I'm so sorry you are going through this.  I know it's very worrisome, especially when you and your doctors are not sure about what's going on.  I'm not sure how long after treatment it was, but I had to wear a Holter monitor because my heart rhythm was out of whack.  Prior to treatment, I had a night's stay in the hospital because of the same.  Your blood pressure is quite low and your resting pulse is quite high, so something seems not right.  I hope your doctors can figure this all out very soon for you and that it's something easily treated.  Perhaps the echo will provide some answers.  Sending good thoughts and prayers your way!

Mollymaude

Wis

I'm sorry you are so sick. With those blood counts and blood pressure I'm sure you feel terrible. It makes sense that maybe the radiation did depress your bone marrow in your pelvis. I think it's just going to take a long time to build your strength up. With time those blood counts have to come up. If I were you I would try to drink as many fluids as I could. And eat as much as you can. Is your appetite any better?

eihtak

Wisteria83...

Just want you to know I'm thinking about you and hoping this day finds you with some answers. I was pretty sick for a solid month or more after treatment and if I remember correctly it was around 6-7 weeks post that I turned the corner to actually feeling much better. 

It sounds like your doctor has been checking all possibilities and that you are in good hands. Please keep us posted and I will bump up my prayers for better days ahead!

katheryn

Wisteria83

Martha, Molly, Katheryn

Thanks all of you for your kind thoughts.

I'm currently in the hospital.  I had to cancel my dr. appointment on Thursday because of severe uncontrollable diarrhea.  I went on Friday, and the conscensus was that I should be in the hospital for fluids and a blood transfusion.  This is something that my docs and I have been trying to avoid, but oh, well.

I hate hospitals.  Everything takes forever to get done.  I got two units of blood Friday night.  My heart & lung issues haven't resolved so I had a CT of my chest last night.  I just had one last week, but apparently it wasn't the right kind?  I don't understand that.  Both were with contrast.

Today they are talking about a shot of Neupogen to help my white count which is very low still.  I feel like I have a bit more energy, and since the transfusion they say my rbc's are much better.  

As much as I don't want to be here, I'm glad that I am.  I was getting scared at home, feeling so weak and not being able to catch my breath after the slightest exertion.  At least here they can address any problems I might have right away instead of me having to take a 40 minute ride to the hospital in a panic.

I'll keep y'all posted on what's happening as I learn more.  Thanks again for your support.

~Wis

mp327

Wisteria

I think in your situation, the doctors made the right call by admitting you.  I hate hospitals too, but sometimes that is the best place to be, especially when there are no clear answers about what is causing someone's symptoms.  I hope it all gets figured out and is something easily treated without surgical intervention.  Post updates are you are able--your friends here will be waiting.  You are in my thoughts and prayers.

Mollymaude

Wis

So sorry you are sick enough to be in the hospital but I agree that's where you need to be. I remember when I got the sepsis I was tanking so fast that on the way in to radiation I was thinking I would resist if they wanted me to go to the hospital and by the time radiation treatment was done I was thinking I probably needed to go in. I've seen people with low hemoglobin and they can't catch their breath- it makes sense since the red blood cells are the delivery system for oxygen. You are in my thoughts and prayers. 

eihtak

Wisteria...

I'm sorry that this has not been an easy path for you but do hope you are soon on your way to feeling better. I too was admitted to the hospital and eventually to a nursing home situation due to complications. The fluids, transfusion, and neupogen sound all too familiar but thankfully a thing of the past now for me as I hope will be for you as well. When I could not keep any food down and had lost too much weight, I was put on TPN (nutrition administered via my port) for about 4 weeks. Eventually I felt stronger and was able to eat and then recovery came quickly. 

You will continue to be in my thoughts and prayers and as Martha said, your friends here will be waiting for news when you are up to it.

katheryn

ginatom

Hi Wis,

Hi Wis,

Just came on to check on you!  I'm so sorry you are feeling so bad.  I share your opinion on hospitals, but I too have been there a couple of times and thought it was the right place to be under the circumstances.  I hope something reveals the mystery soon.  In the meantime I'm thinking of you and sending love! 

Jeana